59–010 

Calendar No. 97 

110TH CONGRESS REPORT " ! SENATE 1st Session 110–48 

GENETIC INFORMATION NONDISCRIMINATION ACT OF 

2007 

APRIL 10, 2007.—Ordered to be printed 

Mr. KENNEDY, from the Committee on Health, Education, Labor, 

and Pensions, submitted the following 

R E P O R T 

[To accompany S. 358] 

The Committee on Health, Education, Labor, and Pensions, to 

which was referred the bill (S. 358) to prohibit discrimination on 

the basis of genetic information with respect to health insurance 

and employment, having considered the same, reports favorably 

thereon with an amendment in the nature of a substitute and recommends that the bill (as amended) do pass. 

CONTENTS 

Page 

I. Purpose and summary of the legislation ..................................................... 1 

II. Background and need for legislation ............................................................ 5 

III. Legislative history and votes in committee ................................................. 12 

IV. Explanation of bill and committee views ..................................................... 16 

V. Cost estimate .................................................................................................. 33 

VI. Application of law to the legislative branch ................................................ 35 

VII. Regulatory impact statement ........................................................................ 35 

VIII. Section-by-section analysis ............................................................................ 36 

IX. Changes in existing law ................................................................................ 46 

I. PURPOSE AND SUMMARY OF THE LEGISLATION

The purpose of this legislation is to protect individuals from discrimination in health insurance and employment on the basis of genetic information. Establishing these protections will allay concerns 

about the potential for discrimination and encourage individuals to 

participate in genetic research and to take advantage of genetic 

testing, new technologies, and new therapies. The legislation will 

provide substantive protections to those individuals who may suffer 

from actual genetic discrimination now and in the future. These 


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steps are essential to fulfilling the promise of the human genome 

project. 

Title I—Health Insurance 

The legislation applies to employer-sponsored group health plans, 

health insurance issuers in the group and individual markets, 

Medigap insurance, and State and local non-Federal governmental 

plans. 

NONDISCRIMINATION

Group Health Plan Protections: The Employee Retirement and 

Security Act (ERISA) currently prohibits a group health plan or 

health insurance issuer offering coverage in connection with a 

group health plan from discriminating against an individual in the 

group in setting eligibility or premium or contribution amounts 

based on the individual’s genetic information. This legislation clarifies that genetic information includes ‘‘information about a request 

for or a receipt of genetic services by an individual or family member of such individual.’’ It also prohibits a health insurance issuer 

offering health coverage in connection with a group health plan 

from adjusting premium or contribution amounts for a group on the 

basis of genetic information concerning an individual in the group 

or a family member of the individual. 

Individual Health Insurance Market Protections: This legislation 

prohibits health insurance issuers in the individual market from 

using genetic information about enrollees or their family members 

to adjust premium or contribution amounts, using genetic information as a condition of eligibility for insurance coverage. 

Medicare Supplemental Protections: This legislation prohibits an 

issuer of a Medicare supplemental policy from denying or conditioning the issuance of a policy, or discriminating in the price of 

the policy, based on genetic information. 

LIMITATION ON GENETIC TESTING

Group health plans, health insurance issuers in the group and 

individual market, and issuers of Medicare supplemental policies 

covered under this title are prohibited from requesting or requiring 

an individual to take a genetic test. However, the legislation makes 

it clear that this provision does not interfere with the delivery of 

health care services. For instance, this provision does not limit the 

authority of the treating health care professional to request that an 

individual or family member undergo a genetic test. Nor does it 

limit the authority of a health care professional who is employed 

by or affiliated with a health plan or issuer from notifying an individual about genetic tests or providing information about a genetic 

test if such actions are carried out as part of a wellness program. 

However, the legislation does prohibit a health care professional 

from requiring that an individual undergo a genetic test. 

PRIVACY AND CONFIDENTIALITY OF GENETIC INFORMATION

The HHS Standards for Privacy of Individually Identifiable 

Health Information (medical privacy regulations) (45 CFR Parts 

160 and 164; final rule) already protect the use and disclosure of 

all individually identifiable health information, including genetic 


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information. However, a permitted ‘‘use’’ of health information 

under the privacy rules (i.e., a specific item under ‘‘health care operations’’) is underwriting, a practice that is inherently discriminatory. Therefore, this bill expressly bans the use or disclosure of genetic information for purposes of underwriting. In addition, this bill 

bans health plans and insurance issuers from collecting (i.e., requesting or requiring) genetic information in the first place for purposes of underwriting. 

In addition, this bill further protects the privacy of genetic information by prohibiting plans and insurance issuers from collecting 

(i.e., requesting, requiring, or purchasing) genetic information prior 

to enrollment under the plan. 

ENFORCEMENT

By building these protections into existing statutes (e.g., ERISA 

PHSA, and the Social Security Act), this title generally uses the 

same mechanisms to enforce the protections established under this 

legislation as apply to other violations of these underlying statutes. 

In addition, this legislation ensures that similarly situated individuals are provided the same protection under the law, regardless of 

whether they are currently sick or disabled, or currently healthy. 

All individuals (healthy and sick) have genetic information that 

could be used to discriminate against them. 

With respect to the nondiscrimination requirements, this legislation is based on the same penalty and enforcement structure as 

Title I of HIPAA, which addresses insurance portability and discrimination based on health status. In general, under ERISA, 

group health plan participants or the Department of Labor can sue 

for relief under ERISA. This legislation further clarifies that with 

respect to a group health plan, a participant or beneficiary has the 

right to seek injunctive relief before exhausting administrative 

remedies if taking the time to pursue administrative remedies 

would cause irreparable harm to the participant’s health. Where a 

participant or beneficiary obtains relief under ERISA for a genetic 

discrimination violation, the court has the discretion to reinstate 

coverage, retroactive to the date of violation and can award a penalty to the participant. The penalty amount payable to the individual is the same as the primary penalty that may be assessed by 

the Secretary under current law enforcement. 

For group health plans and health insurance issuers in the individual and group markets, the appropriate Secretary may impose 

penalties of $100 per day/per person, with a minimum penalty of 

$2,500—up to $15,000 for multiple violations that are more than 

de minimis with an outside cap of up to $500,000 for a violation 

of the protections against genetic discrimination. 

With regard to the privacy provisions established by this legislation, the same enforcement structure and penalties created by the 

Social Security Act for the HHS privacy standards apply with regard to the privacy protections established for genetic information 

by this legislation. Under this legislation, the genetic privacy provisions are enforced by the HHS Office of Civil Rights. The Secretary 

of HHS may impose civil monetary penalties of $100 per violation—up to $250,000 and 10 years in prison for violations committed for commercial advantage, personal gain, or malicious harm. 


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Title II—Employment Provisions 

PROHIBITION ON DISCRIMINATION

The legislation prohibits the use of genetic information in employment decisions, such as hiring, firing, job assignments, and 

promotions. This prohibition extends to employers, unions, employment agencies, and labor-management training programs. 

LIMITATION ON ACQUISITION

Employers, labor organizations, employment agencies, and joint 

labor-management committees are prohibited from requesting, requiring, or purchasing genetic information about an employee or 

family member, except for the following legitimate reasons: (1) for 

genetic monitoring of biological effects of toxic substances in the 

workplace, (2) if the employer provides genetic services, such as 

through a wellness program, with the employee’s prior consent, or 

(3) for compliance with the certification provision of the Family and 

Medical Leave Act or its State equivalent. The purchase of commercially and publicly available documents (except medical databases or court records) or inadvertently requesting or requiring 

family medical history would not violate this title. Under each of 

these exceptions, however, the genetic information still could not be 

used or disclosed. 

CONFIDENTIALITY PROTECTIONS

The legislation safeguards the confidentiality of genetic information in the employment setting. If an employer (acting as an employer) acquires genetic information, such information shall be 

treated and maintained as part of the employee’s confidential medical records. Moreover, such information shall not be disclosed except in limited situations, such as to the individual or in order to 

comply with the certification provisions of Federal or State family 

and medical leave laws, or a court order. 

ENFORCEMENT

The legislation protects applicants or employees of employers defined under the Civil Rights Act of 1964 (42 U.S.C. 2000e(f)), State 

employees, Federal employees, congressional employees, and employees as defined in 3 U.S.C. 411(c). Claimants are required to file 

a charge with the appropriate enforcement agency within a certain 

time period, prior to filing a suit in court. The bill provides for the 

same compensatory and punitive damages available to prevailing 

plaintiffs under 42 U.S.C. 1981a, which are progressive with the 

size of the employer and limited to cases of disparate treatment. 

DISPARATE IMPACT

The bill prohibits claims based on disparate impact and 

empanels a commission in 6 years to review the science and law 

of genetics. The purpose of the Commission is to review the science 

of genetics and advise the Congress on the necessity of providing 

for a disparate impact cause of action in the future. 


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DEFINITIONS—(GENERALLY APPLY TO TITLE I AND II)

Genetic information is defined to include information about an 

individual’s genetic tests; the genetic tests of family members of 

the individual; or the occurrence of a disease or disorder in family 

members of the individual. Genetic information does not include information about the sex or age of an individual for purposes of this 

legislation. 

A genetic test is defined as an analysis of DNA, RNA, chromosomes, proteins, or metabolites, that detects genotypes, 

mutations, or chromosomal changes. A genetic test does not mean 

an analysis of (1) proteins or metabolites that does not detect 

genotypes, mutations, or chromosomal changes or; (2) an analysis 

of proteins or metabolites that is directly related to a manifested 

disease, disorder, or pathological condition that could reasonably be 

detected by a health care professional with appropriate training 

and expertise in the field of medicine involved. The second exception to genetic test only applies to title I of the legislation. 

Genetic Services is defined as a genetic test; genetic counseling 

(such as obtaining, interpreting, or assessing genetic information), 

or genetic education. 

II. BACKGROUND AND NEED FOR LEGISLATION

SEQUENCING THE HUMAN GENOME

Only rarely is a scientific discovery so significant that it has the 

potential to transform both science and society. Humanity’s newly 

acquired ability to map and understand its own genetic traits may 

well be one such transforming discovery. While recent advances in 

genetics are the work of thousands of scientists in dozens of countries, the most prominent symbol of our newfound understanding 

of genetics was the announcement in April 2003 that a vast team 

of scientists had determined the exact sequence of the human genetic code and placed that information in public databases. 

The most immediate use of the data from sequencing the genome 

will be to increase our understanding of the links between genes 

and disease. Medicine has already benefited from the first trickle 

of what will eventually become a flood of new discoveries about the 

links between genetic mutations and particular diseases. One wellknown example of such a link is the correlation between mutations 

in two genes, BRCA1 and BRCA2, and an elevated risk of breast 

and ovarian cancer. When used to guide medical decision-making, 

a test for a mutation in one of the two BRCA genes can be of considerable benefit to women in evaluating their risk of disease and 

in taking steps to reduce that risk. 

Yet this new understanding of the genetic basis of disease holds 

dangers as well as opportunities. Although the knowledge that a 

person carries a mutation in a disease-related gene may be used 

to inform future medical treatment or as a stimulus to seek preventive care, that same knowledge could also be used for harmful purposes. A health insurance company might wrongly view the presence of the gene mutation to mean that the person would definitely 

contract the disease with which that gene is associated and improperly deny that person insurance coverage. An employer might use 

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1For example, testimony of Francis Collins (HELP Committee hearing, July 25, 2001) and 

Kathleen Zietz (HELP Committee hearing, July 25, 2001). 2For example, testimony of Ms. Kathleen Zeitz (HELP Committee hearing, July 25, 2001) and 

Mr. Jindal (HELP Committee hearing, February 13, 2002). 3 ‘‘Genetic Information and the Workplace’’, a report issued by the Department of Labor, Department of Health and Human Services, Equal Employment Opportunity Commission and Department of Justice. Report date: January 20, 1998. Displayed at http://www.genome.gov/ 

10001732; viewed on February 21, 2007. 4Matloff, E. et al. ‘‘What Would You Do? Specialists’ Perspectives on Cancer Genetic Testing, 

Prophylactic Surgery, and Insurance Discrimination.’’ Journal of Clinical Oncology, 18: 2484–

2492 (2000). 

ment to an individual who is healthy and able to do the job. In several hearings on this issue, the committee heard that many nonspecialists regard the presence of a genetic mutation as an unalterable prediction that a person will manifest the disorder associated 

with that mutation, rather than simply one of many factors affecting health.1

With these misconceptions so prevalent, employers may come to 

rely on genetic testing to ‘‘weed out’’ those employees who carry 

genes associated with diseases. Similarly, genetic traits may come 

to be used by health insurance companies to deny coverage to those 

who are seen as ‘‘bad genetic risks.’’ Enabling employers, health insurers and others to base decisions about individuals on the characteristics that are assumed to be their genetic destiny would be 

an undesirable outcome of our national investment in genetic research, and may significantly diminish the benefits that this research offers. 

CONCERNS ABOUT MISUSE OF GENETIC INFORMATION

The appropriate use of genetic information offers enormous opportunities to save lives and prevent the onset of disease. However, 

the medical progress made possible by genetic research is dependent on the willingness of study volunteers and patients to undergo 

genetic testing. However, such consent may be difficult to obtain 

today. Fears about the possible misuse or unauthorized disclosure 

of genetic information appear to adversely impact the desire of individuals to participate in genetic research.2 Such fears also extend 

to clinical practice, discouraging both patients and providers from 

taking full advantage of genetic tests and technologies. 

For instance, a national telephone survey of more than 1,000 

people found that 63 percent of respondents said they would not 

take genetic tests if health insurers or employers could get access 

to the results.3 In a study of the use of genetic tests in clinical oncology, 68 percent of patients responding to a questionnaire reported that they would not bill health insurance companies for genetic tests for fear of discrimination, while 26 percent would take 

tests only using an alias.4 Genetic counselors report that concerns 

about breaches of privacy and improper use of genetic information 

are widespread among their patients. Concealment of the results of 

genetic tests can have sometimes disastrous consequences for individuals’ health. For example, a woman whose doctor is unaware 

that her genetic profile includes an elevated risk for cancer may be 

less vigilant about possible warning signs of that cancer than a 

doctor who was fully aware of her genetic risks. 

These surveys are substantiated by evidence documenting reluctance among at-risk populations to undergo genetic testing—even 

when that testing may allow patients to take steps to lower their 


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5Lerman et al., ‘‘Genetic testing in families with hereditary nonpolyposis colon cancer.’’ JAMA 

281: 1618–1622 (1999). 6 Hadley, D. et al. ‘‘Genetic counseling and testing in families with hereditary nonpolyposis 

colorectal cancer.’’ Archives of Internal Medicine, 163: 573–582 (2003). 7Lerman et al. ‘‘BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decisionmaking and outcomes.’’ JAMA. 275:1885–1892 (1996). 8Statement of Francis S. Collins, M.D., Ph.D. to the Congressional Task Force on Health 

Records and Genetic Privacy Preventing Genetic Discrimination in Health Insurance, July 22, 

1997. 9 ‘‘Reproductive Genetic Testing: What America Thinks’’ Genetics and Public Policy Center, 

Johns Hopkins University, 2004, displayed at http://www.dnapolicy.org/ 

pub.reports.php?action=detail&reportlid=6. 10 American Academy of Actuaries, Genetic Information and Medical Expense Insurance, June 

2000. 

risks of contracting a disease. For example, only 43 percent of those 

at risk for hereditary colon cancer participated in a genetic testing 

program.5 Later studies found that 39 percent of those who declined testing cited fears about the potential effect of test results 

on their health insurance coverage as the primary reason for their 

refusal.6 Similar results are seen with other disorders. In a study 

of women who may carry the BRCA mutation, only 57 percent of 

women decided to undergo a genetic test to determine whether they 

carried a mutation in this gene.7 Although other factors contribute 

to the decision not to get tested, such as the lack of an effective 

treatment, fear of genetic discrimination appears to be a primary 

reason that many people forgo getting genetic tests. 

In addition to concerns about discrimination, polls indicate that 

the public at-large desires to keep genetic information private. For 

instance, in a 1995 Harris poll, 85 percent of respondents indicated 

that they were either ‘‘very concerned’’ or ‘‘somewhat concerned’’

that insurers and employers might gain improper access to their 

genetic data.8 More recently, a 2004 a poll taken by the Genetics 

and Public Policy Center at Johns Hopkins University found that 

92 percent of those surveyed felt that employers should not have 

access to genetic test results.9 Fears about the possible misuse of 

genetic knowledge appear to influence the public’s desire to protect 

the privacy of genetic information. 

Fears that employees may be subjected to unwanted or covert genetic testing by their employers, or may face discriminatory treatment, on the basis of that testing are not hypothetical. In 2000, the 

American Management Association conducted a ‘‘Workplace Testing Survey’’ and found that a few of its members did use what they 

understood to be genetic information in hiring and firing decisions. 

Of the 2,133 employers surveyed, seven (up from three in 1999) indicated that their companies performed what they thought was genetic testing of employees. Of these seven, four reported performing 

genetic testing of job applicants, and six reported performing genetic testing of employees. In 1989, the United States Congress Office of Technology Assessment (OTA) surveyed Fortune 500 companies. Of the 330 companies responding, 12 companies admitted to 

currently conducting genetic tests of employees. 

Although surveys and polls demonstrate a fairly widespread fear 

of discrimination, there is little evidence or documentation of actual 

discrimination in health insurance. For instance, the American 

Academy of Actuaries notes that private insurers do not require applicants for insurance to undergo genetic testing or use genetic 

tests to limit coverage for preexisting conditions.10


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11Mark A. Hall and Stephen S. Rich, ‘‘Laws Restricting Health Insurers’ Use of Genetic Information: Impact on Genetic Discrimination.’’ American Journal of Human Genetics, January 

2000. 

Another study of insurance practices found there are almost no 

well-documented cases of health insurers either asking for or using 

presymptomatic genetic test results in their underwriting decisions. 

The same study found that ‘‘some insurers clearly do use family 

history information for important disease categories such as heart 

disease, cancer, and diabetes, but they do so only to look for or 

evaluate other signs of existing or prior disease, not to predict the 

onset of future health problems.’’ 11

Despite the apparent conflict between actual discrimination 

versus the fear or perception of discrimination, consumers remain 

worried that, once acquired by an insurance company or employer, 

genetic information could be used in a discriminatory manner. 

Such concerns about the misuse of genetics are already hindering 

the potential of the human genome project. Health care professionals advise patients to skip tests or pay for them out of pocket 

because they are uncertain if genetic information is protected from 

misuse under the law. Under our current patchwork of varying 

State and Federal laws, many of which were crafted for different 

purposes than genetic discrimination, few people truly understand 

the degree to which their genetic information may or may not be 

protected. Many of the problems outlined in this section stem from 

the lack of a comprehensive Federal law prohibiting the use of genetic information to deny health insurance coverage or affect employment status. 

Fear of discrimination, or even potential discrimination, threatens society’s ability to use new genetic technologies to improve 

human health and the scientific community’s ability to conduct research needed to understand, treat, and prevent disease. And, although there may not be proof of widespread discrimination, it is 

difficult to ignore the few, albeit egregious, cases that have been 

publicly documented. 

EXAMPLES OF GENETIC DISCRIMINATION

Although genes are facially neutral markers, many genetic conditions and disorders are associated with particular racial and ethnic 

groups, and gender. Members of those groups may be stigmatized 

or discriminated against as a result of that genetic information. 

This principle was evident in the 1970s, which saw the advent of 

programs to screen and identify carriers of sickle cell anemia, a disease which afflicts African-Americans. The screening programs 

were designed to identify both healthy carriers and carriers with 

the manifested disease, even though neither prenatal diagnosis nor 

treatment was available at the time. Scientists suggested that even 

healthy carriers might be hyper-susceptible to certain workplace 

toxins such as benzene, lead, cadmium, carbon monoxide, and cyanide. Based on these opinions, employers began testing workers for 

the gene even though available evidence and studies did not support this theory. See Genetic Discrimination in the Workplace: An 

Overview of Existing Protections, 30 Loyola University of Chicago 

Law Journal 393, 402–03 (Spring 1999), citing Katherine Brokaw, 

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12Testimony of David Escher, HELP Committee Hearing, July 25, 2001. 

ability, Columbia Journal of Law & Social Problems 317, 324, n. 33 

(1990). 

State legislatures began to take steps in the area, and in the 

early 1970s began mandating genetic screening of all AfricanAmericans for sickle cell anemia, leading to further fear and discrimination. Inadequate measures to keep the test results confidential led to stigmatization and discrimination against sickle cell carriers in employment. Further, lack of knowledge and understanding of the disease led to discrimination against many carriers 

of the trait even though they would never develop sickle cell disease. To alleviate some of this stigma, Congress in 1972 passed the 

National Sickle Cell Anemia Control Act, which withholds Federal 

funding from States unless sickle cell testing is voluntary. See 42 

U.S.C. Sec. 300b. 

Between 1968 and 1993, Lawrence Berkeley Laboratory, a research institution operated jointly by State and Federal agencies, 

gave employees pre-placement medical examinations that included, 

without the employees’ knowledge or consent, blood and urine tests 

for syphilis, sickle cell trait, and/or pregnancy. In NormanBloodsaw v. Lawrence Berkeley Laboratory, 135 F.3d 1260, 1269 

(9th Cir. 1998), the court held that: 

it goes without saying that the most basic violation possible involves the performance of unauthorized tests—that 

is, the nonconsensual retrieval of previously unrevealed 

medical information that may be unknown even to plaintiffs. These tests may also be viewed as searches in violation of fourth amendment rights that require fourth 

amendment scrutiny. The tests at issue in this case thus 

implicate rights protected under both the fourth amendment and the Due Process Clause of the fifth or fourteenth 

amendments. 

In 2001, railroad workers at Burlington Northern Santa Fe Railroad (BNSF) were subjected to genetic testing without their knowledge or informed consent. BNSF conducted genetic tests on samples drawn under false pretenses to try to determine whether employee’s symptoms resembling carpal tunnel syndrome were caused 

by a genetic mutation. Employees of BNSF testified before Congress about how they were denied employment benefits and were 

otherwise deprived of equal protection under the law due to the 

misuse of their genetic information. On April 6, 2001, BNSF settled 

the suit filed by the Brotherhood of Locomotive Engineers with the 

Equal Employment Opportunity Commission under the ADA.12

FEDERAL LAW ON GENETIC DISCRIMINATION IN HEALTH INSURANCE

The Health Insurance Portability and Accountability Act 

(HIPAA) affords some protection against discriminatory practices 

in health insurance based on an individual’s genetic information. In 

general, HIPAA ensures that individuals who change health insurance carriers (usually after switching jobs or losing employment) do 

not have their coverage denied or unduly restricted because of preexisting medical conditions. HIPAA also prohibits a health insurance carrier from charging one individual within a group higher 


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rates than other ‘‘similarly situated’’ individuals in the same group 

or determining eligibility to enroll in health insurance coverage, 

based on a health status-related factor. HIPAA includes genetic information as part of its definition of a ‘‘health status-related factor’’ which cannot be used to deny coverage, and excludes genetic information (in the absence of a diagnosis) from its definition of a preexisting medical condition. 

Nonetheless, the Act has several important limitations in protecting Americans against genetic discrimination in health insurance. First, its protections against denying coverage on the basis of 

factors related to health status apply only to the group insurance 

market. HIPAA does not address discrimination in the individual 

market, and State laws vary considerably with regard to restrictions on using genetic information to set premiums or determine 

eligibility. In addition, HIPAA does not prohibit an insurance company from raising the premiums for the group health plan as a 

whole, based on the genetic information of an individual in that 

group. 

Based on the evidence described above and on testimony received 

at several hearings on genetic discrimination, the committee determined that new Federal legislation is required to ensure that individuals are not denied health insurance coverage or do not have 

their premium rates raised due to genetic information that is not 

an analysis of metabolites or proteins directly related to a manifested disease, disorder, or pathological condition. 

HIPAA AND PRIVACY

In addition to its provisions on health insurance coverage, 

HIPAA also deals with the privacy of medical records. HIPAA stated that if Congress failed to enact a comprehensive law on medical 

privacy by August 21, 1999, then the Secretary of HHS would be 

required to issue privacy regulations. Since Congress was unable to 

enact a privacy law by the required deadline, HHS issued regulations on medical records privacy in December 2000 that went into 

effect for large businesses in April 2003 and will take effect for 

small businesses 1 year later. 

The HHS medical privacy regulations are of obvious relevance to 

the debate on genetic discrimination. While people fear discriminatory action based on their genes, they also fear the unauthorized 

disclosure or collection of genetic information. The need to protect 

the privacy of genetic information is important. Knowledge that a 

person has a particular medical condition or genetic trait may be 

embarrassing or damaging to that individual, or his or her family 

members. 

Although the HHS privacy regulations are extensive in many respects, they are limited by the underlying statutory framework of 

HIPAA, which authorized them to apply only to three named categories of entities: providers, payers and information clearinghouses. However, medical information may be widely dispersed beyond these ‘‘covered entities’’. 

Due to the underlying statutory constraints of HIPAA, the HHS 

privacy regulations cannot directly affect employers or other noncovered entities. Instead, the regulations require any non-covered 

entity (a ‘‘business associate’’) to enter into a contract with a covered entity promising that it will respect the privacy of information 


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13Testimony of Joanne L. Hustead (HELP Committee hearing, February 13, 2002). 14For example, testimony of Sen. Tom Daschle, Dr. Francis Collins, and EEOC Commissioner 

Paul Steven Miller (HELP Committee hearing, July 20, 2000). 

transmitted from the covered entity to the non- covered entity. Witnesses at several committee hearings testified that a statutory 

framework to protect genetic information directly—even when held 

by a non-covered entity such as an employer—would be a clearer 

and more effective system of regulation than relying solely on the 

indirect system of ‘‘business associate’’ contracts established under 

the HIPAA regulations.13 Based on this and other evidence, the 

Committee determined that further statutory provisions were needed to regulate directly the collection and disclosure of genetic information by employers and other workforce organizations not covered 

directly within the framework of the HIPAA regulations. 

Within the sphere of health insurance, the regulations promulgated under HIPAA provide extensive regulatory direction on the 

permitted and impermissible uses of protected health information, 

including genetic information. In its deliberations, the committee 

took note of these regulations and determined that it would be advisable to enact genetic protections that were consistent with this 

existing framework. 

FEDERAL PROTECTIONS AGAINST GENETIC DISCRIMINATION IN

EMPLOYMENT

Federal employees have considerable protection against genetic 

discrimination under the terms of Executive Order 13145 issued on 

February 10, 2000, 65 CFR 6877. Under this order, Federal employees may not be discharged or otherwise subjected to restrictions in their employment or their employment-related benefits on 

the basis of protected genetic information. The Executive order also 

provides protections against improper collection of employees’ genetic information and against unauthorized disclosure of that information. Despite these protections, the Executive order has no enforcement provisions. 

Most employees in the private sector, however, enjoy no similar 

protections. In several hearings, the committee heard testimony 

that existing Federal employment laws, the Americans with Disabilities Act (ADA) and title VII of the Civil Rights Act of 1964 

(Title VII) provide limited or uncertain protections against the discriminatory use of genetic information in the workplace.14

TITLE VII OF THE CIVIL RIGHTS ACT OF 1964

Title VII of the Civil Rights Act of 1964 makes it illegal for an 

employer, labor organization, employment agency, or training program to ‘‘discriminate against any individual . . . because of such 

individual’s race, color, religion, sex, or national origin.’’ While this 

law provides robust guarantees against discrimination on the basis 

of these characteristics just described, its applicability to genetic 

discrimination is limited. The plain language of the statute provides no obvious protection against genetic discrimination. However, title VII may indirectly offer some protections against discrimination on the basis of a person’s genetic makeup when that 

discrimination disproportionately affects individuals on the basis of 

one of the characteristics named in the act. 


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15See Norman-Bloodsaw v. Lawrence Berkeley Lab., 135 F.3d 1260, 1272–72 (9th Cir. 1988). 

In this case, the Lawrence Berkeley Labs had subjected the plaintiffs to testing the disorders 

that included sickle cell disease, a condition that is especially prevalent among African-Americans. The Court found that in subjecting African-American employees to testing for this disorder, Lawrence Berkeley Labs violated their protections under title VII. 16Genetic Technologies Project, National Conference of State Legislatures; displayed at 

http://www.ncsl.org/programs/health/genetics/ndiscrim.htm and http://www.ncsl.org/programs/health/genetics/ndishlth.htm; viewed on February 21, 2007. 

For example, the genetic mutation associated with Tay-Sachs 

Disease is found most commonly in persons with an Eastern European Jewish ethnic background. If an employer were to selectively 

refuse to hire carriers of the Tay-Sachs mutation, this action would 

have a disproportionate effect on people with a specific national or 

ethnic origin. In this limited circumstance, the individuals experiencing such discrimination might have a claim under title VII.15

However, for acts of genetic discrimination that do not have a discriminatory effect on members of a class of individuals named in 

the Civil Rights Act, title VII would provide no apparent protection 

against genetic discrimination. 

STATE LAW ON GENETIC DISCRIMINATION

To fill the void created by the absence of clear protections at the 

Federal level, many States have enacted laws that seek to prohibit 

genetic discrimination in health insurance and/or employment. To 

date, 34 States have passed laws on genetic discrimination in employment and 48 have passed laws on genetic discrimination in 

health insurance.16 Among the States that prohibit discrimination 

in the issuing of health insurance, many cover only the group 

health insurance market and exclude individual health insurance 

policies, while others do the reverse. Many States exclude family 

medical histories from their definition of genetic information or include only the results of tests that are performed with announced 

intention of detecting genetic mutations. 

Regardless of the technical aspects of any particular State law, 

there is necessarily a significant gap in any State’s ability to deter 

genetic discrimination in health insurance. Congress delegated to 

the States the authority to regulate most aspects of insurance 

through enacting the McCarran-Ferguson Act of 1945. However, 

employer-purchased plans were exempted from State regulation by 

the Employee Retirement Income Security Act of 1974. Under this 

act, no State may regulate the type of health insurance plans typically provided to employees as part of their employment benefits. 

Only the Congress can therefore enact a truly comprehensive law 

prohibiting genetic discrimination in all areas of health insurance. 

In view of the need for national comprehensive protections 

against genetic discrimination, the committee has considered and 

by a vote of 19 to 2 approved the Genetic Information Nondiscrimination Act to provide the American people with the assurances they deserve that their genetic profiles will not be used to 

deny them health insurance or to discriminate against them in the 

workplace. 

III. LEGISLATIVE HISTORY AND VOTES IN COMMITTEE

The committee, whether chaired by a Republican or Democrat, 

has made passage of bipartisan genetic nondiscrimination legislation a top priority. Under the chairmanship of Senator Kennedy in 


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the 107th Congress, the committee held hearings on the issue of 

genetic discrimination. In the 108th Congress, under the leadership 

of Senator Gregg, the committee took executive action on bipartisan legislation to prohibit genetic discrimination in health insurance and employment, approving it without objection. Senator 

Enzi, as Chairman of the committee in the 109th Congress, maintained the strong commitment to enacting this needed legislation, 

and the committee once more took executive action on legislation 

to prohibit genetic discrimination, again without objection. Now, in 

the 110th Congress, the committee has again approved bipartisan 

legislation to prohibit genetic discrimination. 

BACKGROUND

Legislation addressing genetic discrimination first appeared in 

the 103d Congress as part of the national health reform debate. In 

the 104th Congress, as government and private-sector scientists 

were getting closer to sequencing the human genome, a handful of 

bills addressing genetic discrimination exclusively were introduced. 

Sponsors of these bills included an almost equal number of Republicans and Democrats. The various bills focused on different concerns about genetic discrimination and privacy. Most of these bills 

addressed discrimination in health insurance, while others also addressed genetic privacy and employment discrimination. 

During the 104th, the HELP Committee began to hold hearings 

on the topic. The first hearing examined the public policy implications of advances in genetics research. In 1996, the Senate passed 

the first genetic nondiscrimination legislation as part of the Health 

Insurance Portability and Accountability Act (HIPAA). HIPAA was 

signed into law in 1996 (P.L. 104–191; August 21, 1996). It prohibits discrimination against an individual in a group based on 

health status, including genetic information, and it primarily applies to group health plans and health insurance issuers in the 

group market. 

HIPAA did not directly address medical privacy; however, 

HIPAA required HHS to promulgate comprehensive medical privacy regulations if Congress did not pass legislation addressing the 

same by August 21, 1999. Several bills addressing comprehensive 

medical privacy were introduced in the 105th and 106th Congress, 

but the Senate did not act, and HHS proceeded to promulgate regulations. 

From 1996 through 2002, the committee explored thoroughly 

issues related to genetic discrimination in health insurance and 

employment. The committee held a total of five hearings on genetic 

discrimination. In addition, the committee has also held hearings 

on medical privacy, which is relevant to genetics. 

COMMITTEE HEARINGS ON GENETIC DISCRIMINATION

July 25, 1996: Advances in Genetics Research and Technologies: 

Challenges for Public Policy—Examining recent developments in 

genetics research, public policy issues with regard to access to and 

use of genetic information, and the impact of genetic technologies 

on certain sectors of industry, health care delivery systems, and the 

public. 


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May 21, 1998: Genetic Information and Health Care—Examining 

proposals to prohibit health care discrimination based on genetic 

information, including related measures on S. 89 and S. 422. 

July 20, 2000: Genetic Information in the Workplace—Examining 

issues relating to the development of Federal policy governing the 

treatment of an individual’s genetic information in the workplace 

in light of the recent Human Genome Project breakthroughs. 

July 25, 2001: Fulfilling the Promise of Genetic Research: Ensuring Nondiscrimination in Health Insurance and Employment—Examining S. 318, to prohibit discrimination on the basis of genetic 

information with respect to health insurance, and related genetics 

research issues regarding employment discrimination and prevention of disclosure of genetic information to third parties. 

Feb. 13, 2002: Protecting Against Genetic Discrimination: The 

Limits of Existing Laws—Examining the existing laws and proposed legislation necessary to protect genetic information in order 

to prevent genetic discrimination that may lead to loss of health insurance or employment discrimination, including S. 318 and S. 382, 

to prohibit discrimination on the basis of genetic information with 

respect to health insurance. 

COMMITTEE, FLOOR CONSIDERATION

Subsequent to HIPAA, both the HELP Committee and the full 

Senate have considered broader genetic discrimination legislation. 

In the 106th Congress, Senator Jeffords introduced the Patient’s 

Bill of Rights Act (S. 326), which included genetic nondiscrimination and privacy provisions applying to health insurance. The genetics provision in this legislation was a modified version of the 

‘‘Genetic Information Nondiscrimination in Health Insurance Act of 

1997’’ (S. 89), introduced by Senator Snowe in the 105th Congress. 

During the committee’s consideration of S. 326, Senator Dodd offered an amendment that would have limited the disclosure of predictive genetic information and prohibited employers from discrimination on the basis of genetic information. The amendment was not 

accepted. Senator Jeffords agreed to hold a hearing on genetic discrimination in the workplace, which he did on July 20, 2000. The 

Patient’s Bill of Rights legislation (S. 326), with the modified genetic nondiscrimination provision from S. 89, was approved by the 

HELP Committee on March 18, 1999 by a vote of 10 yeas to 8 nays. 

The full text of S. 326 was incorporated into Senate Amendment 

1232, to the Patient’s Bill of Rights (S. 1344), which was approved 

by the Senate on July 15, 1999. This bill was considered during a 

House/Senate conference, with House bill H.R. 2990, which did not 

produce a Conference Report for reasons other than genetic nondiscrimination. 

Also in the 106th Congress, on June 29, 2000, Senator Daschle 

offered Senate Amendment 3688, genetic nondiscrimination legislation he had previously introduced (S. 1322), to the Labor/HHS appropriations legislation (H.R. 4577). The amendment was not accepted. To the same legislation, Senator Jeffords offered Senate 

Amendment 3691, genetic nondiscrimination legislation (S. 543) introduced by Senator Snowe on March 4, 1999, and that amendment 

was approved. The provision was not included in the final Labor/ 

HHS report. 


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In the 107th Congress, Senator Daschle reintroduced the ‘‘Genetic Nondiscrimination in Health Insurance and Employment Act’’

(S. 318) on February 13, 2001. Senator Snowe reintroduced the 

‘‘Genetic Information Nondiscrimination in Health Insurance Act of 

2001’’ (S. 382) on February 15, 2001. 

On June 28, 2001, Senator Ensign offered Senate Amendment 

849, to the Patient’s Bill of Rights legislation (S. 1052) under consideration by the full Senate. The amendment was approved without objection. The amendment contained provisions relating to discrimination and privacy in health insurance and employment. The 

Senate did not appoint conferees on S. 1052, and there was no further action on this amendment. 

On March 6, 2002, Senator Snowe modified her legislation to reflect the release of the HHS medical privacy regulations and to include a new title II addressing employment discrimination (S. 

1995). Working from these two bills, the HELP Committee began 

to explore whether and how these bills could be merged into a 

singe bipartisan bill. 

In the 108th Congress, Senator Daschle reintroduced his bill as 

part of a broader civil rights bill ‘‘a Bill to Protect the Civil Rights 

of All Americans’’ (S. 16) on January 7, 2003. On May 13, 2003, 

Senator Snowe reintroduced her legislation from the 107th Congress (S. 1995) without modification. This legislation (S. 1053), was 

the bill that the committee moved to consider. During the May 21, 

2003 executive session, Chairman Gregg offered compromise language based on the Snowe and Daschle legislation as a manager’s 

substitute to S. 1053. Senate bill S. 1053, as modified by the manager’s substitute, was approved without objection by the committee 

on May 21, 2003. On October 14, 2003 the Senate approved S. 1053 

by a vote of 95 to 0. The House did not take up the legislation, and 

there was no further action on it. 

In the 109th Congress, Senator Snowe reintroduced the legislation passed in the 108th Congress with modifications that made 

corrections in dates and other technical changes. The Genetic Information Nondiscrimination Act of 2005, S. 306, was introduced on 

February 7, 2005. The HELP Committee approved S. 306 without 

objection on February 9, 2005. On February 16, 2005, the full Senate considered S. 306, as amended by Senate Amendment 13, a 

manager’s substitute. The Senate approved S. 306, as amended, by 

a vote of 98 to 0. The House again took no action on the bill. 

In the 110th Congress, Senator Snowe reintroduced the legislation approved by the Senate in the 109th Congress with modifications that made corrections in dates and other technical changes. 

The Genetic Information Nondiscrimination Act of 2007, S. 386, 

was introduced on January 22, 2007. The HELP Committee approved the bill with a Chairman’s substitute on January 31, 2007 

by a vote of 19 yeas and 2 nays. Voting in the affirmative were 

Senators Kennedy, Enzi, Dodd, Gregg, Harkin, Alexander, Mikulski, Isakson, Bingaman, Murkowski, Murray, Hatch, Reed, Roberts, 

Clinton, Allard, Obama, Sanders, and Brown. Voting in the negative were Senators Burr and Coburn. 


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IV. EXPLANATION OF BILL AND COMMITTEE VIEWS

Title I—Genetic Nondiscrimination in Health Insurance 

DEFINITIONS

The definitions of ‘‘family member,’’ ‘‘genetic information,’’ ‘‘genetic test,’’ and ‘‘genetic services’’ provide the foundation for this 

legislation. These terms are used in every section of title I and 

have the same definition in each instance. The committee wishes 

to emphasize that title I only applies to health insurance underwriting and eligibility practices and is not in any manner intended 

to regulate the delivery of medical care and treatment. 

The legislation includes ‘‘the occurrence of a disease or disorder 

in family members of the individual,’’ herein after referred to as ‘‘family medical history,’’ in the definition of genetic information. 

The committee intends for ‘’family medical history’’ to be understood as it is used by medical professionals when treating or examining patients. For example, the American Medical Association 

(AMA) has developed an adult family history form as a tool to aid 

the physician and patient to rule out a condition that may have developed later in life, which may or may not have been inherited. 

This form requests information about the patient’s brothers, sisters, and their children, biological mother, the mother’s brothers, 

sisters, and their children, maternal grandfather, maternal grandmother, biological father, the father’s brothers, sisters, and their 

children, paternal grandfather and paternal grandmother. The 

committee expects that the use of ‘‘family history’’ in this bill will 

evolve with the medical profession and the tools they develop in 

this area. 

The committee realizes that a family medical history could be 

used as a surrogate for a genetic trait by a health plan or health 

insurance issuer. A consistent history of a heritable disease in a 

patient’s family may be viewed to indicate that the patient himself 

or herself is at increased risk for that disease. For this reason, the 

committee believes it is important to include family medical history 

in the definition of ‘‘genetic information.’’ In so doing, the committee followed the recommendations of numerous leading experts 

in genetic science. 

A key element in the definition of genetic information is the term 

‘‘genetic test.’’ ‘‘Genetic test’’ is defined in the legislation to mean 

‘‘an analysis of human DNA, RNA, chromosomes, proteins, or metabolites, that detects genotypes, mutations, chromosomal 

changes.’’ This definition excludes ‘‘an analysis of proteins or metabolites that is directly related to a manifested disease, disorder, 

or pathological condition that could reasonably be detected by a 

health care professional with appropriate training and expertise in 

the field of medicine involved.’’ The committee is aware that many 

tests are used to determine existing diseases, disorders, and conditions, and does not intend to include in the definition of genetic information such tests when they indicate the presence of a manifested disease, disorder, or pathological condition. 

The committee recognizes that, as part of the underwriting process, an individual may be asked to be examined by a physician or 

take certain lab tests. The committee also recognizes that medical 

underwriting may not involve such an exam or new tests and may 


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instead be based on a medical records review or a review of previously-taken lab tests. For instance, a person applying for health 

insurance who has had a full physical six months prior, may simply 

supply the results of such prior tests to the insurance company 

rather than submit to retaking the same battery of tests. In this 

case, the committee intends that any analysis of proteins and metabolites that indicates a manifested disease, disorder, or pathological condition would still fall within the exception to ‘‘genetic test’’ in this section, regardless of the fact that the test had been conducted preceding the application for coverage. 

By including the exception to genetic test for a manifested disease, disorder, or pathological condition, the committee sought to 

draw a bright line between genetic information and information 

about a manifested disease, disorder, or pathological condition. In 

addition to genetic traits, there are other factors that may contribute to the manifestation of a disease or disorder. The committee 

believes there is great danger, especially in these early stages of 

scientific discovery, of genetic information being misapplied in the 

context of health insurance underwriting and thus believes it 

should be prohibited. While this distinction is important for purposes of this legislation, the committee recognizes that it may not 

be possible or even desirable in health care delivery or scientific research to isolate genetic information as it pervades health information. 

This legislation intentionally does not include in its definition of ‘‘genetic information’’ the results of analyses of proteins or metabolites that indicate a manifested disease, disorder, or pathological 

condition. The committee recognizes that, while it may have been 

easier to craft a single set of Federal rules governing discrimination based on all health information, rather than trying to isolate 

and define genetic information, State and Federal law already regulates the use of health information in rating and eligibility practices. With respect to group health plans, ERISA, the Public Health 

Service Act (PHSA), and the Internal Revenue Code (IRC) currently ban discrimination in eligibility or premiums based on the 

health-status of an individual in the group. This prohibition was 

enacted as part of the Health Insurance Portability and Accountability Act in 1996. In addition, States regulate rating and eligibility practices of insurance issuers in the individual market, a 

highly sensitive market with characteristics unique to each State. 

As the primary regulators of this market, States can reassess and 

change their regulations of this market to ensure that carriers will 

continue to offer products. The committee saw no rationale for supplanting the group market rules or pre-empting State rating requirements. Instead, the committee invested substantial time and 

effort circumscribing genetic information. 

The terms ‘‘genetic information’’ and ‘‘genetic test’’ address the 

substantive results of tests, and the legislation prohibits discrimination on the basis of these factors. The legislation also protects, 

in the same manner, against discrimination on the basis of an individual having taken a test. In addition, the legislation protects the 

activities associated with genetic information, including genetic 

counseling (such as obtaining, interpreting, or assessing genetic information) and genetic education. All these functions are protected 

under the definition of ‘‘genetic services.’’


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Sec. 101. Amendments to Employee Retirement Income Security Act 

of 1974 

The committee recognizes that ERISA Section 702(a)(1)(F) and 

702(b) currently prohibits a group health plan and a health insurance issuer offering group health insurance coverage in connection 

with a group health plan from discriminating—in eligibility for enrollment or premium contributions—against an individual in the 

group based on the individual’s health status-related factors, including genetic information. With this section, the committee intends to clarify and expand these protections, and the remedies and 

enforcement provided for these protections, for group health plan 

participants and beneficiaries governed by ERISA. 

Genetic Services: The committee believes that, in addition to discrimination based on actual genetic information, there is potential 

for discrimination based on the mere action of requesting or receiving a genetic service. For example, a health plan could potentially 

wrongly assume that a participant has a genetic disorder, such as 

Huntington’s disease, because the participant, or his or her family 

member, requested or received a genetic test for the disease. This 

assumption could also be made if an individual had participated in 

a clinical trial for a disease associated with a particular genotype. 

Thus, the term ‘‘genetic services’’ encompasses genetic services received as part of a clinical trial. This definition clarifies, within the 

existing prohibition banning discrimination in enrollment against 

an individual in the group, that the term genetic information includes ‘‘information about a request for or receipt of genetic services by an individual or family member of such individual.’’ Participation in a clinical trial in which genetic services are provided 

would also constitute ‘‘information about a request for or receipt of 

genetic services.’’ The committee’s interpretation regarding the inclusion of ‘‘information about a request for or receipt of genetics services by an individual or family member of such individual’’ applies in each section in which this provision appears, including sec. 102(a)(1)(B) 

with respect to health insurance issuers offering coverage in connection with a group health plan, sec. 2753(a) with respect to a 

health insurance issuer in the individual market, and section 103 

with respect to an issuer of a Medicare supplemental policy. 

Discrimination in Premiums Against the Group as a Whole: 

While current law protects individuals in a group from being 

charged premiums or contributions that are higher than the premiums or contributions for similarly situated individuals, there is 

no such protection in current law for the group as a whole. Thus, 

this section prohibits a health insurance issuer offering health coverage in connection with a group health plan from adjusting premium or contribution amounts for a group on the basis of genetic 

information concerning an individual in the group or a family 

member of the individual. 

The committee is aware that health plans and insurers use actual claims experience to set initial and renewal premiums for 

groups. And, among the claims experience that a health plan may 

use to set or renew premium rates are the costs, as opposed to the 

results, of genetic tests and services. The committee believes that 

the costs of medical items and services used by an individual do 

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ices’’ under this bill, and therefore are not banned for use by health 

plans to set or renew premiums rates for the group as a whole. 

The committee also recognizes that claims data used to set or 

renew premiums for the group as a whole are likely to include a 

range of information such as utilization, payment, and cost data for 

family members of individuals enrolled in the group. While genetic 

information is defined broadly in this bill to include ‘‘family history,’’ the committee does not believe, nor does it intend for this 

provision to prohibit a health plan from setting or renewing rates 

for the group as a whole based on the claims data concerning 

health status of members of the group who may also happen to be 

family members of other individuals in the group. The committee 

believes that the inclusion of family history in the definition of genetic information should not pose this problem because nothing in 

this legislation prohibits a health plan from taking into consideration, when setting or renewing premiums, the health information 

of each person enrolled in the group. 

The interpretation of this section 101(a)(2) applies in each section 

in which this provision appears in the bill, including sec. 

102(a)(1)(B) with respect to health insurance issuers offering coverage in connection with a group health plan. 

Limitation on Genetic Testing: Sec. 101(b) places limits on a 

group health plan’’s ability to request or require an individual, or 

the family member of the individual, to take a genetic test. As the 

decision to take a genetic test is a personal one and could be influenced by many factors, including whether or not any treatment exists for a particular disease, the committee included this prohibition to ensure that individuals would not feel compelled to take a 

genetic test. However, the committee also wishes to ensure that 

this provision does not interfere with health care practices that 

could be beneficial to the individual, so several clarifications of this 

provision are included in the legislation. For instance, this provision does not limit in any manner the authority of the treating 

health care professional to request that an individual or family 

member undergo a genetic test. However, the treating health care 

professional may not require the individual or family member to 

undergo a genetic test. The committee intends for the term ‘‘health 

care professional who is providing health care services with respect 

to an individual’’ to apply to any health care professional who is 

a member of the practice group from which a patient receives 

health care services. 

The committee believes that, given different motivations by and 

perceptions of health plans versus treating health care professionals, this distinction is warranted. However, the committee is 

also aware that some health plans go beyond the insurance function and engage in wellness and disease management programs; 

and the committee does not wish to discourage such efforts. Thus, 

section 101(b) makes it clear that this legislation does not limit the 

authority of a health care professional who is employed by or affiliated with the group health plan or health insurance issuer who is 

providing health care services to the enrolled individual as part of 

a wellness program from notifying such individual about the availability of a genetic test or providing information about the genetic 

test. 


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The term ‘‘wellness program’’ is defined by regulations promulgating ERISA’s nondiscrimination provisions under section 702. In 

summary, these regulations define a ‘‘wellness program’’ as one 

that does more than simply charging differential premiums based 

on health risk factors. For instance, a wellness program might include a rebate for not smoking, but it would also have to offer a 

smoking cessation program. The committee believes that the concept of a wellness program is important in the context of genetic 

discrimination to ensure that a health plan does not use a wellness 

program as a subterfuge to discriminate in insurance premiums 

based on genetic information. 

The provision prohibiting a health plan from requesting or requiring an individual to undergo a genetic test was included to protect health plan participants from actions that would allow a 

health plan to obtain genetic information to be used for the purposes of insurance discrimination. It only addresses the act of requesting or requiring an individual to undergo a test. The committee recognizes that this provision does not address the use, disclosure, or collection of existing test results and intends for the flow 

of genetic information to be governed by the HHS medical privacy 

rules and section 104 of title I of this legislation. 

A description of activities not covered by section 702(c)(1) (as 

added by section 101 of the bill) may be important in delineating 

the scope of this section. 

Subsection (c)(1) covers only the interaction between a health 

plan or a health insurance issuer offering health insurance coverage in connection with a group health plan and an individual or 

family member of an individual. 

Increasingly, information from genetic testing will be crucial to 

determining the therapy or preventive health care services most effective for a particular patient. For that reason, it is important to 

note that subsection (c)(1) does not preclude health care professionals from requesting or recommending that their patients undergo genetic tests or receive genetic services. The committee took 

great care to ensure that the legislation did not interfere with the 

ability of health professionals to provide care for their patients. Indeed, by giving patients greater confidence that they can undergo 

genetic testing without fear that their genetic information will be 

used for discriminatory purposes, the legislation will facilitate the 

appropriate use of genetic tests. The Rule of Construction in subsection (c)(2)(A) makes explicit that subsection (c)(1) does not apply 

to interactions between health care professionals and the patients 

they treat. 

Another feature of the exception in subsection (c)(2)(A) is that is 

not limited by the employment status of the health care provider. 

Thus, a physician is not barred from requesting that patients 

under his or her care undergo a genetic test regardless of whether, 

for example, that physician is in private practice or employed by 

an integrated health plan. 

Nor does subsection (c)(1) prohibit a health plan from making information about genetic tests available to physicians who provide 

health care services as part of that plan. Finally, subsection (c)(1) 

does not specify or limit the documentary evidence that a plan or 

health insurance issuer may require to substantiate payment for a 

claim. 


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Hypothetical examples may be helpful in illustrating the scope of 

subsection (c)(1). 

Hypothetical #1: Dr. Washington is providing health care services to Ms. Adams, whose mother and aunt both died of breast cancer. Dr. Washington counsels Ms. Adams that her risk of breast 

cancer may be elevated, and recommends that she undergo a genetic test for BRCA1, mutations in which are associated with an 

elevated risk of breast and ovarian cancer. Subsection (c)(1), as 

noted above, does not limit communications between health care 

professionals and the patients to whom they provide care. Lest 

there be any ambiguity in the scope of the prohibition under subsection (c)(1), the Rule of Construction in subsection (c)(2)(A) further clarifies that the ability of Dr. Washington to request or recommend that Ms. Adams undergo the BRCA1 genetic test is not 

limited by the legislation. 

Hypothetical #2: Ms. Jefferson has been diagnosed with breast 

cancer. Her physician, Dr. Madison, is considering the appropriate 

course of therapy for Ms. Jefferson. He knows that if her tumor 

overexpresses the HER2/neu receptor, then Ms. Jefferson would be 

a good candidate for treatment with Herceptin, a humanized 

monoclonal antibody against the HER2/neu receptor. Conversely, if 

Ms. Jefferson’s tumor does not overexpress HER2/neu, then 

Herceptin therapy would be contraindicated. Dr. Madison accordingly recommends to Ms. Jefferson that she undergo a genetic test 

for Her2/neu. Again, subsection (c)(1) does not apply to the interaction between Dr. Madison and Ms. Jefferson, and again, the Rule 

of Construction in subsection (c)(2)(A) further clarifies that the prohibition in subsection (c)(1) does not apply to this interaction. Dr. 

Madison is thus free to recommend that Ms. Jefferson undergo a 

genetic test for HER2/neu. 

Hypothetical #3: The Consolidated Mutual Insurance Company 

covers one colonoscopy every 10 years for beneficiaries above the 

age of 50. However, the plan covers the cost of an annual 

colonoscopy for beneficiaries of any age who have a mutation in one 

of several genes associated with elevated risk of hereditary 

nonpolyposis colorectal cancer (HNPCC). Mr. Monroe had a 

colonoscopy when he turned 50, the cost of which Consolidated Mutual covered. However, the following year, Mr. Monroe had a second colonoscopy for which he also sought reimbursement from Consolidated Mutual. Mr. Monroe claimed that Consolidated Mutual 

should cover the second colonoscopy on the grounds that a genetic 

test detected that he carries a mutation in one of the genes associated with elevated risk of HNPCC. Nothing in subsection (c)(1) prohibits Consolidated Mutual from requiring that Mr. Monroe provide 

evidence to show that he indeed did undergo the relevant genetic 

test, and that the results fell within the scope of conditions under 

which Consolidated Mutual’s policy rules provide coverage for 

colonoscopies performed more frequently than once per decade. 

Hypothetical #4: Consolidated Mutual also has a program to inform health professionals about the value of genetic testing in providing appropriate care to their patients. Accordingly, Consolidated 

Mutual provides informational brochures on genetic testing to the 

health care professionals who provide services covered under the 

plan. Again, nothing in subsection (c)(1) regulates the flow of inforVerDate Aug 31 2005 04:10 Apr 13, 2007 Jkt 059010 PO 00000 Frm 00021 Fmt 6659 Sfmt 6602 E:\HR\OC\SR048.XXX SR048

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mation between Consolidated Mutual and health professionals, so 

this communication is not prohibited. 

Hypothetical #5: Mr. Jackson holds a family health insurance 

policy with Consolidated Mutual that covers Mr. Jackson, his wife 

and his young son, Steven. Steven suffers from severe difficulties 

in breathing that are symptomatic of cystic fibrosis. Steven undergoes a ‘‘sweat test’’, a commonly performed analysis to detect abnormal levels of sodium and chloride ions in sweat. Steven’s test 

reveals significant abnormalities in the levels of these ions. The 

definition of ‘‘genetic information’’ in the legislation includes an exception for metabolic tests that are ‘‘directly related to a manifested 

disease, disorder, or pathological condition that could reasonably be 

detected by a health care professional with appropriate training 

and expertise in the field of medicine involved.’’ The sweat test is 

a metabolic test that directly relates to a manifested disease, cystic 

fibrosis. Thus, the results of the sweat test are not considered ‘‘genetic information’’ under section 101. Consolidated Mutual is thus 

not barred by this section from taking the results of the sweat test, 

or the fact of Steven’s manifested cystic fibrosis, into account in 

setting premiums for a policy under which Steven is covered, even 

if such policy also includes Steven’s parents. 

The interpretation of provisions in section 101 described above 

applies in each section in which identical provisions appear in the 

bill, including section 102 with respect to health insurance issuers, 

and section 103 with respect to an issuer of a Medicare supplemental policy. 

Application: This section applies to all non-governmental ERISA 

group health plans, including plans with less than two participants 

that are exempt from ERISA’s existing nondiscrimination provisions. The committee believes that since the requirements of this 

section do not impose an administrative burden and since they are 

applied to individual insurance, there is no rationale for excluding 

these groups from this section. This section also applies to retireeonly plans. The interpretation of this section also applies in each 

section in which this provision appears in the bill, including section 

102 with respect to health insurance issuers offering coverage in 

connection with a group health plan. 

Enforcement and Remedies: The legislation clarifies and 

strengthens remedies and enforcement available to all group health 

plan participants and beneficiaries governed by ERISA for violations of genetic discrimination under this section. Specifically, enforcement of this section is built on existing remedies under section 

502(a)(1) of ERISA, which provides ERISA plan participants with 

a private right of action, as well as the Secretarial enforcement 

mechanisms from title I of HIPAA, which address insurance portability and discrimination based on health-status. 

This legislation clarifies that, with respect to a group health 

plan’s violation of this section, a participant or beneficiary has the 

right to seek injunctive relief before exhausting administrative 

remedies if taking the time to pursue administrative remedies 

would cause irreparable harm to the participant’s health. The committee also recognizes that while access to health coverage for a genetic predisposition itself would not likely threaten a participant’s 

current health status, a health plan’s denial of eligibility under the 

plan based on genetic information, could potentially threaten other 


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aspects of an individual’s, or his or her beneficiary’s, health. Under 

current case law, a court may grant a participant or beneficiary the 

right to seek injunctive relief before exhausting administrative 

remedies on grounds other than that requiring exhaustion of administrative remedies would cause irreparable harm, as provided 

under this legislation. These have included cases where having to 

exhaust administrative remedies would be futile, where meaningful 

access to plan procedures has been denied and where the remedy 

sought is not available through the plan’s claims review process. 

S. 358 is not intended to limit the discretion of a court to grant 

a beneficiary the right to seek injunctive relief before exhausting 

administrative remedies on grounds such as those cited above, or 

on such other grounds as the court may find appropriate. Rather, 

the legislation is intended to establish that a determination by a 

court that a health plan’s violation of this section would cause irreparable harm shall always be considered sufficient grounds for 

the court to grant a participant or beneficiary the right to seek injunctive relief prior to the exhaustion of administrative remedies. 

In addition to injunctive relief, this legislation also clarifies the 

nature of relief available under section 502(a) with respect to a genetic discrimination violation under this Act. Where a participant 

or beneficiary obtains relief under ERISA for a genetic discrimination violation, the court has the discretion to reinstate coverage, 

retroactive to the date of the violation. The committee recognizes 

that most disputes over plan eligibility or premiums are resolved 

quickly and do not typically require legal action. The committee intends to clarify in statute that the court has the discretion to reinstate coverage retroactively with regard to violations of genetic discrimination. 

Should a participant or beneficiary recover benefits under section 

502(a)(1)(B) for a violation of the amendments made by section 101 

of this act, this legislation gives the court discretion to levy a penalty against the administrator for failure to comply with the requirements of this title. The amount of the penalty is not more 

than $100 for each day in the noncompliance period, and it is payable to the participant or beneficiary involved. The committee recognizes that, while the process is a departure from current law 

remedies, the level of remedy available under this provision for violations of genetic discrimination parallels what exists under current law for other HIPAA violations. In designing this provision, 

the committee was aware of similar provisions under ERISA where 

the court has the discretion to award penalties for a failure to provide plan documents or COBRA violations. 

The committee acknowledges that a private remedy is designed 

to primarily help the individual pursuing the remedy. Therefore 

the legislation applies the existing Secretarial enforcement mechanism and penalty structure created by HIPAA to the enforcement 

of genetic discrimination violations. The only changes this legislation makes to this model are to give enforcement authority to the 

Secretary of Labor rather than the Secretary of Treasury, and to 

convert the excise taxes to civil monetary penalties. Since DOL currently oversees HIPAA compliance and enforcement, and conducts 

plan audits, the committee believes that this model will encourage 

more efficient and timely enforcement of the requirements of genetic nondiscrimination. 


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This legislation does not alter or modify existing remedies or enforcement, or any interpretation thereof, for any provision of current law other than violations of genetic discrimination as defined 

under this legislation. For example, this legislation does not modify 

the remedies available for violations of other health-status related 

discrimination under section 702. 

Sec. 102. Amendments to the Public Health Service Act 

Group Insurance Market: The genetic nondiscrimination provisions that apply to insurance issuers offering coverage in connection with a group health plan are identical to the provisions created by section 101 of this act as amendments to ERISA. With one 

exception, there are duplicate provisions in the PHSA for each of 

the requirements in ERISA. Since ERISA provides the exclusive 

remedy for all ERISA group health plan participants, including 

those enrolled by a health insurance issuer offering coverage in 

connection with a group health plan, the legislation does not duplicate the remedies and enforcement provisions in the PHSA. However, the committee emphasizes that all group health plan participants and beneficiaries are entitled to the remedies and enforcement mechanisms under ERISA. 

Individual Insurance Market: This provision prohibits a health 

insurance issuer in the individual market from establishing rules 

of eligibility (including continued eligibility) or setting premium 

rates for an individual based upon genetic information (including 

information about a request for or receipt of genetic services by an 

individual or family member of such individual). The committee 

recognizes that currently there are no nondiscrimination protections in Federal law for the individual market and that States have 

the ability to extend genetic nondiscrimination protections to the 

individual insurance. However, the committee has chosen to create 

this Federal floor for several reasons. 

First, the committee had access to the Nation’s leading experts 

and scientists in the field of genetics, including those from the National Human Genome Research Institute of the NIH, to assist in 

crafting delicate public policy in a field that is fairly new and rapidly advancing. Second, due to the rapid advancement of the 

science of genetics, protections vary widely from State to State, providing some consumers with better protection than others. Third, 

the committee believes that there is a timely need for a national 

standard to prevent genetic discrimination, and consumers across 

the Nation should not have to wait for the actions of dozens of individual State legislatures. 

This legislation applies the same enforcement model that title I 

of HIPAA created for the enforcement of group-to-individual portability and other requirements for genetic discrimination violations, 

by an issuer in the individual market. Under that model, States 

are free to adopt the Federal standard or create a more protective 

standard. If a State fails to substantially enforce the Federal standard, the Secretary of HHS shall enforce the requirements against 

the insurance issuers in that State. To enforce their rights under 

this legislation, individuals may use whatever means, such as 

grievances and appeals, assistance from the State insurance commissioner’s office, or any other remedies that may be available 


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under State law, such as taking legal action, if the State’s law provides such a remedy. 

The committee believes that employees and dependents covered 

under State and local governmental group health plans should also 

be covered by the protections of this legislation. Under HIPAA, 

State and local governmental plans may opt out of the protections 

that would otherwise apply to group health plans, and some have 

exercised that option. The committee believes that this legislation 

provides important protections without imposing a regulatory or 

cost burden on the plan, and thus believes that an opt-out is both 

inappropriate and unnecessary. This legislation thus ensures its 

protections are applicable and enforceable on State and local governmental group health plans. 

Sec. 104. Privacy and Confidentiality 

Sec. 104(b). Compliance with certain confidentiality standards with respect to genetic information 

At a February 13, 2002 hearing before the HELP committee, the 

HHS Assistant Secretary of Planning and Evaluation testified 

about the interaction between genetic nondiscrimination legislation 

and the medical privacy rules. The Assistant Secretary testified 

that the HHS medical privacy rules cover all health information, 

including genetic information, in the same manner, and urged the 

committee not to craft legislation that creates a different set of privacy rules for genetic information. 

In general, the committee believes that treating all health information in a consistent or similar matter will encourage third-party 

payers to cover genetics tests, technologies, and services. After 

hearing much testimony and working with a wide range of stakeholders and consumer organizations, the committee was convinced 

that consistent treatment of all medical information is important in 

enabling genetics to become part of main-stream medicine. Finally, 

the committee concluded, especially with respect to the ‘‘use and 

disclosure’’ of information, that it is inherently difficult to separate 

genetic information from other medical information in the delivery 

of health care and medical research, and therefore inconsistent 

rules for the ‘‘use and disclosure’’ of different categories of health 

information would likely be burdensome and potentially harmful to 

patient care. 

In general, the legislation recognizes that the HHS medical privacy regulations apply to the ‘‘use and disclosure’’ of genetic information, provided that such regulations are not in conflict with this 

title. 

However, a provision in the medical privacy regulations pertaining to underwriting and insurance rating is inherently discriminatory, and thus inconsistent with the purpose of this legislation. Specifically, there is a provision in the privacy regulations, 

under the heading of ‘‘health care operations,’’ that allows, without 

prior consent, a covered entity to ‘‘use or disclose’’ genetic information for purposes of premium rating, underwriting, or establishing 

or renewing a contract for coverage or insurance. Since one of the 

purposes of this legislation is to prevent discrimination in premium 

rates, this provision prohibits a plan or issuer from using or disclosing genetic information for purposes of underwriting, deterVerDate Aug 31 2005 04:10 Apr 13, 2007 Jkt 059010 PO 00000 Frm 00025 Fmt 6659 Sfmt 6602 E:\HR\OC\SR048.XXX SR048

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mining eligibility to enroll, premium rating, or the creation, renewal or replacement of a plan, contract or coverage for health insurance or benefits. 

In addition, the legislation states that a covered entity shall not 

request, require, or purchase genetic information concerning a participant, beneficiary, or enrollee prior to the enrollment and in connection with such enrollment under the plan, coverage, or policy. 

This language was included because the HHS medical privacy regulations presume that covered health care entities possess health 

care information and thus the regulations focus on the ‘‘use and 

disclosure’’ of protected health information. Since health insurance 

issuers typically treat underwriting as a separate business function 

and process from coverage decisions and medical management, the 

committee believes that this important layer of protection will not 

adversely impact the delivery of patient care and health care improvement activities. 

The committee believes that if a covered entity is barred from 

using or disclosing genetic information for purposes of underwriting, they should not be able to collect such information in the 

first place as part of the underwriting, application, or some other 

pre-enrollment process or interaction. However, the committee also 

recognizes that there may be situations in which a health plan or 

insurance issuer obtains genetic information prior to enrollment, 

but not in connection with that particular enrollment. For instance, 

an individual seeking coverage under a plan currently may have 

been enrolled in the plan previously, and therefore the plan has 

likely, in making coverage determinations or conducting disease 

management activities, collected genetic information prior to the 

individual’s current enrollment. Or, if a family member of an individual enrolling for coverage under a plan is already a member of 

the plan, such plan would likely have collected genetic information 

‘‘prior to enrollment.’’ The committee did not intend to prohibit this 

type of collection and thus includes in the legislation the phrase 

‘‘and in connection with such enrollment’’ to clarify. However, the 

committee emphasizes that, regardless of the means by which genetic information is collected, whether in connection with enrollment or not, sections 101–104 of the legislation prohibits health 

plans and health insurance issuers from using genetic information 

to adjust premiums or determine eligibility. 

The committee understands that genetic information permeates 

health information and that covered entities may inadvertently or 

unintentionally acquire genetic information. For instance, a health 

insurance issuer may purchase another health plan and all of its 

medical records, or request medical records or previously taken lab 

tests for purposes of underwriting. Or, in filling out an application 

for insurance that includes a medical questionnaire, an individual 

may voluntarily offer additional health information, such as family 

medical information which is considered genetic information under 

this bill. Thus, a provision addressing ‘‘incidental collection’’ is included in the legislation that makes it clear that if a plan, or an 

issuer obtains genetic information incidental to the requesting, requiring, or purchasing of other information concerning an individual, such request, requirement, or purchase shall not be considered a violation if it is not obtained for purposes of underwriting 


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and any genetic information obtained incidentally is not used or 

disclosed in violation of the HHS medical privacy regulations. 

The legislation applies to all group health plans and issuers that 

are otherwise covered by the HHS medical privacy rules. Therefore, 

there are a very limited number of plans and issuers, such as a 

group health plan with less than 50 participants that self-administers, that are covered by the nondiscrimination provisions of this 

bill but not under this section. The committee believes that since 

the privacy provisions contained in this legislation are inextricably 

linked to and coordinated with the HHS privacy regulations, it 

would be difficult for an entity to comply with the requirements of 

this section without also complying with all of the medical privacy 

regulations. The committee did not wish to introduce for the first 

time such a substantial burden on very small plans. 

Covered entities under the genetic privacy and confidentiality 

standards of this legislation are subject to the same penalties and 

enforcement structure that exist for the HHS privacy regulations 

under sections 1176 and 1177 of the Social Security Act. 

The Secretary of HHS has the exclusive authority to enforce the 

privacy requirements of this section. As a result, enforcement of 

this legislation, with respect to a specific entity, may be split. For 

instance, for a group health plan, the Department of Labor will enforce the insurance discrimination provision under section 101 of 

this bill, but HHS will enforce the requirements of this section. The 

committee believes that, given that this provision is inextricably 

linked to the medical privacy rules, HHS is ideally situated to enforce these provisions against all covered entities. Moreover, HHS’s 

ability to enforce this section is further bolstered by its expertise 

in the medical privacy regulations, the fact that the agency is already enforcing in this area, and the fact that the agency has assigned the HHS Office of Civil Rights to focus on privacy enforcement. 

Long-term care insurance is not intended to be subject to section 

104. Since benefits for long-term care are ‘‘excepted benefits’’ under 

section 733(c)(2)(B) of ERISA, section 2791(c)(2)(B) of the PHSA, 

and section 9832(c)(2)(B) of the IRC, it has never been the intent 

of the bill to subject long-term care insurance to any of the bill’s 

prohibitions with respect to health insurance discrimination on the 

basis of genetic information or genetic services. ‘‘Excepted benefits,’’

including benefits for long-term care, are not subject to the provisions of sections 101 or 102 which track the HIPAA framework that 

exempts ‘‘excepted benefits’’ from its substantive provisions. Accordingly, long-term care insurance is not subject to section 104. 

TITLE II—EMPLOYMENT

Sec. 201. Definitions 

As a guiding principle, the Genetic Information Nondiscrimination Act of 2003 is designed to extend to individuals in the area of 

genetic discrimination the same procedures and remedies as are 

provided under Title VII of the Civil Rights Act of 1964, as amended. These individuals include employees and applicants working in 

the private sector, in Federal and State governments (including 

presidential and gubernatorial appointees), as well as congressional 

employees. The corresponding employers of these individuals, as 


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well as employment agencies, labor organizations, and joint labormanagement committees are covered by the legislation in the same 

manner as current law. 

As in title I of the legislation, ‘‘genetic information’’ is defined as 

information about an individual’s or family member’s genetic tests, 

or information about the occurrence of a disease or disorder in family members of the individual. Likewise, ‘‘genetic test’’ is defined in 

the same way under titles I and II, except that the Employment 

title does not include an exception for an analysis that is directly 

related to a manifested disease, disorder, or pathological condition. 

In making this distinction, the committee recognizes there are important and necessary uses for non-genetic health information in 

the health insurance setting that are not applicable in the employment context. 

Section 210 specifically provides that the parties ‘‘shall not be 

considered to be in violation of this title based on the use, acquisition, or disclosure of medical information that is not genetic information about a manifested disease, disorder, or pathological condition of an employee or member, including a manifested disease, disorder, or pathological condition that has or may have a genetic 

basis.’’ As stated in the discussion of title I, the committee realizes that 

a family medical history could be used as a surrogate for genetic 

traits by a health plan or health insurance issuer. A consistent history of a heritable disease in a patient’s family may be viewed to 

indicate that the patient himself or herself is at increased risk for 

that disease. For this reason, the Committee believes it is important to include family medical history in the definition of ‘‘genetic 

information.’’ In so doing, the committee followed the recommendations of numerous leading experts in genetic science. Further, the 

bill applies to spouses and adopted children of an individual because of the potential discrimination an employee or member could 

face because of an employer’s or other entities’ concern over potential medical or other costs and their effect on insurance rates. 

Secs. 202–205. Prohibited practices 

Generally, employers, labor organizations, employment agencies, 

and joint labor-management committees are prohibited from using, 

acquiring or disclosing the genetic information of an individual or 

his/her family members. 

Use of Genetic Information: ‘‘Use’’ of genetic information, as 

drafted in the legislation, utilizes the language of Section 703 of 

the Civil Rights Act of 1964, as amended, and the same forms of 

discriminatory acts are outlawed. These acts include refusing to 

hire or discharging a person based on the genetic information including family history of disease. For example, it would be unlawful for an employer to refuse to hire an otherwise healthy applicant 

because of a fear that he may develop Parkinson’s disease because 

of a family history of such disease. The prohibition also extends to 

limiting, segregating, or classifying an individual in a way that 

would deprive him or her of employment opportunities. 

Acquisition of Genetic Information: Banning the use of genetic 

information alone would not reach the full range of serious concerns that the Genetic Information Nondiscrimination Act is seeking to address. The committee recognizes that the fear of misuse 


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of genetic information and privacy concerns deter individuals from 

being tested for genetic disorders, seeking genetic services, or participating in important genetic research. Scientific advances in the 

field of genetics hold great promise for medical prevention and new 

treatments and therapies. As a matter of sound public policy, the 

committee is concerned that this promise will go unfulfilled if individuals are afraid to get genetic tests or seek genetic counseling out 

of fear that they will face discrimination in their employment. 

To this end, the legislation makes it unlawful for an employer, 

labor organization, employment agency, or joint labor-management 

committee to request, require, or purchase genetic information, except under limited circumstances. Most notably, this prohibition 

addresses the concerns raised in the case against Burlington 

Northern Santa Fe Railroad. The company, allegedly without employees’ consent or knowledge, conducted genetic tests on blood 

samples it had previously received from some workers. The U.S. 

Equal Employment Opportunity Commission filed suit against the 

company under the Americans with Disabilities Act, relying on the 

third prong of the definition of ‘‘disability’’ as ‘‘being regarded as 

having such an impairment.’’ The case was ultimately settled so 

the courts have not had the opportunity to interpret the full application of the ‘‘regarded as’’ prong to genetics discrimination. 

The committee’s decision to include a prohibition against acquiring genetic information was informed by witnesses who appeared 

before us, and existing law and regulations. Witnesses at the committee hearing on February 13, 2002, stressed the need to avoid 

unintended consequences and to anticipate the requirements of existing employment statutes in order to avoid conflicts. The committee has carefully considered the existing laws and regulations 

that touch on the flow of information in the workplace and incorporated five exceptions. 

The first exception addresses the so-called ‘‘water cooler problem,’’ in which an employer unwittingly receives otherwise protected genetic information in the form of family medical history 

through casual conversations with a worker. The committee recognizes that conversations among co-workers about the health of a 

family member are common and intends to prevent such normal 

interaction from becoming the basis of litigation under this Act. 

Without the exception, the committee is concerned that discussion 

in the workplace of a family member’s health condition that is genetically based could be interpreted as an employer requesting or 

requiring genetic information from an individual. Under the legislation, an employer, labor organization, employment agency, or 

joint labor-management committee will not violate the ban on acquiring genetic information where it ‘‘inadvertently requests or requires family medical history’’ of the individual or family member 

of the individual. 

The second exception—which preserves employer-sponsored 

wellness programs—is necessary to achieve the bill’s stated goal of 

encouraging employees to take advantage of genetic technologies 

and opportunities to improve human health without fear of discrimination by their employer. To qualify for the exception, this 

program must be a wellness program as defined under section 702 

of ERISA. Participation in the program must be voluntary and confidential, and safeguards must be in place to ensure that the sponVerDate Aug 31 2005 04:10 Apr 13, 2007 Jkt 059010 PO 00000 Frm 00029 Fmt 6659 Sfmt 6602 E:\HR\OC\SR048.XXX SR048

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soring employer, labor organization, employment agency, or joint 

labor-management committee does not have access to individually 

identifiable health information, as defined under the HHS medical 

privacy regulations. 

The committee is concerned that restrictions on information 

about the health condition of a family member would conflict with 

the certification procedures under Federal and State family and 

medical leave laws. For example, an employee seeking time off to 

care for a sick family member may be required to certify the request with a note from the treating physician. The doctor’s note 

may contain genetic information, which is defined for the purposes 

of this legislation to include family medical history. The third exception eliminates the potential for conflict with existing laws by 

exempting requests or requirements for family medical history 

when sought ‘‘to comply with the certification provisions of section 

103 of the Family and Medical Leave Act of 1993 (29 U.S.C. 2613) 

or such requirements under State family and medical leave laws.’’

The committee recognizes that family medical history can easily 

and inadvertently be obtained. The fourth exception, like the first, 

relates to the inadvertent acquisition of family medical history. The 

committee is concerned that the proscriptions of the legislation 

would be violated, for example, through the purchase of a local 

newspaper containing the obituary of an employee’s parent who 

died of breast cancer. This exception was included to satisfy the 

principle in the bill that the rules be clear and that the bill not provide a basis for frivolous claims. Specifically, the fourth exception 

provides an exemption where an employer, labor organization, employment agency, or joint labor-management committee ‘‘purchases 

documents that are commercially and publicly available (including 

newspapers, magazines, periodicals, and books, but not including 

medical databases or court records) that include family medical history.’’ In referring to ‘‘documents,’’ the committee is mindful of Rule 

34 of the Federal Rules of Civil Procedure that includes the same 

materials that are electronically available. 

The final exception to the rule against requesting, requiring, or 

purchasing genetic information protects genetic monitoring of biological effects of toxic substances in the workplace, but only in limited circumstances. The employer, labor organization, employment 

agency, or joint labor-management committee must give written 

notice. Unless the monitoring is required by Federal or State law, 

the individual must provide prior, knowing, voluntary and written 

authorization. The individual must be provided the results of the 

monitoring. The monitoring must be conducted in compliance with 

any genetic monitoring regulations, whether promulgated under 

the Occupational Safety and Health Act (or its state equivalent), 

the Federal Mine Safety and Health Act, or the Atomic Energy Act. 

Finally, the monitoring results may only be disclosed to the employer, labor organization, employment agency, or joint labor-management committee in the aggregate and where no individually 

identifiable information is included. 

Regardless of whether an exception applies, the bill makes clear 

that genetic information, once acquired, may not be used or disclosed in violation of the legislation. 


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17The advisability of applying existing administrative procedures to genetic discrimination 

claims was best described by Cari M. Dominguez, Chair of the U.S. Equal Employment Opportunity Commission in testimony before the committee: ‘‘We at the EEOC feel that the EEOC 

has an established and familiar administrative procedure, including a well-received mediation 

program, which has proven successful in resolving discrimination charges swiftly, to the satisfaction of all parties, and without litigation. * * * Where the EEOC finds cause to believe that 

discrimination has occurred, we have a conciliation procedure through which many charges are 

also resolved. Because it provides incentives and opportunities for settlement, the administrative 

process is much less costly and burdensome, both to those involved and to the judicial system, 

than a process that would permit immediate access to the courts. Moreover, during the past several years, the Commission has made changes to charge processing, enabling us to keep up with 

our current caseload as well as reduce our charge backlog. EEOC also has expertise in the development of employment nondiscrimination enforcement policies that shield workers from unlawful discrimination and ensure that legitimate needs are met.’’

To this end, the committee has taken advantage of the expertise and process of the EEOC. 

The legislation protects applicants or employees of employers defined under the Civil Rights Act 

of 1964, 42 U.S.C. 2000e(f), State employees, Federal employees, congressional employees, and 

employees as defined in 3 U.S.C. 411(c). Claimants are required to file a charge with the appropriate enforcement agency, within a certain time period, prior to filing a suit in court. The bill 

provides for the same compensatory and punitive damages available to prevailing plaintiffs 

under 42 U.S.C. 1981a. 

Sec. 206. Confidentiality of genetic information 

Faced with concerns about the disclosure of confidential genetic 

information, individuals may not take advantage of genetic tests, 

services or counseling, or participate in genetic research. The committee believes that there are very few instances when an employer, labor organization, employment agency, or joint labor-management committee would have a legitimate need to divulge the genetic information that may be in its possession. The legislation 

adopts the general rule that such information shall be maintained 

on separate forms and in separate medical files and be treated as 

a confidential medical record. This is consistent with the ADA’s requirements regarding the maintenance and treatment of medical 

information. 

Also as a general rule, an employer, labor organization, employment agency, or joint labor-management committee is prohibited 

under this legislation from disclosing genetic information. Both for 

practical reasons and in order not to subject these entities to conflicting legal obligations, five exceptions have been included in the 

legislation. The genetic information may be provided directly to an 

individual who receives genetic services. The information may also 

be disclosed to an occupational or health researcher for research in 

compliance with 45 CFR Part 46, in response to a court order (with 

certain limitations), to government officials investigating compliance with this title, and in connection with Federal or State family 

and medical leave certification provisions. The committee does not 

intend for this section to bar law enforcement authorities from conducting forensic analysis of DNA samples in their lawful possession 

for law enforcement purposes, nor to interfere with legitimate law 

enforcement functions, such as searches conducted pursuant to a 

warrant, acquisition of DNA samples pursuant to a legitimate court 

order (subject to the limitations in section 206(b)(3)), or analyses of 

DNA samples stored in repositories maintained by law enforcement 

authorities. 

Sec. 207. Remedies and enforcement 

The committee recognizes that an effective remedial scheme and 

proper enforcement are a necessary element in ensuring that the 

protections in this legislation are realized in the workplace.17


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Because the legislation expressly covers State employees, the 

committee wishes to review the record of State discrimination in 

genetics. Based on early genetic science, States enacted laws that 

provided for the sterilization of ‘‘undesirable’’ persons having presumed genetic ‘‘defects’’ such as mental retardation, mental disease, epilepsy, blindness, and hearing loss, among other conditions. 

The first sterilization law was enacted in the State of Indiana in 

1907. In the years following, many States enacted legislation that 

either incorporated provisions or drew inspiration from the first 

sterilization law. A majority of States adopted sterilization laws to 

‘‘correct’’ apparent genetic traits or tendencies. Many of these State 

laws have since been repealed, and many have been modified to include essential constitutional requirements of due process and 

equal protection. 

The Supreme Court’s earliest decision on the constitutionality of 

State sterilization statutes certainly does not reflect contemporary 

norms, but the case has never been officially overruled by the 

Court. Skinner v. Oklahoma, 316 U.S. 535 (1942). The current explosion in the science of genetics, and the history of sterilization 

laws by the States based on early genetic science, compels congressional action in this area. 

Sec. 208. Disparate impact 

Due to the unique nature of genetic information and our current 

understanding of this developing area of science, the committee has 

determined that only disparate treatment cases should be permitted under this legislation at this time. The bill contemplates 

that the science could change in the future and has called for the 

creation of a study commission 6 years after the date of enactment 

to review this issue. The Commission’s purpose is to advise Congress on the advisability of providing for a disparate impact cause 

of action in the future. 

Sec. 209. Construction 

As stated previously, it is the committee’s intent to provide clear 

rules of conduct to all parties in order to promote compliance and 

avoid needless or frivolous lawsuits. In most instances, the legislation is designed to work in conjunction with existing laws and not 

to override current protections, rights, or defenses. Several rules of 

construction have been included in the legislation to assist courts 

in interpreting congressional intent. 

The committee recognizes that both the ADA and the Rehabilitation Act of 1973 regulate the use of genetic information in some 

manner. The first rule of construction expressly states that nothing 

in title II shall be construed to limit the rights or protections of an 

individual under those two laws. Individuals remain free to seek 

redress for violations of the ADA, the Rehabilitation Act, and the 

Genetic Information Nondiscrimination Act. The committee emphasizes, however, that this legislation in no way alters the current 

law prohibiting double recovery of damages based on the same 

facts or a common occurrence. See, e.g., Anderson v. Group Hospitalization, 820 F.2d 465 (D.C. Cir. 1987); Skinner v. Total Petroleum, 859 F.2d 1439 (10th Cir. 1988); Kim v. Nash, 123 F.3d 1046 

(8th Cir. 1997); Atkinson v. Anadarko Bank and Trust Company, 

808 F.2d 438, 441 (5th Cir.) cert. denied 483 US 1032 (1987); 


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Squires v. Bonser, 54 F.3d 168 (3d Cir. 1995); and Mason v. Oklahoma Turnpike Authority, 115 F. 3d 1442 (10th Cir. 1997). 

The second rule of construction is included to ensure that claims 

against parties are brought in the capacity in which they act. The 

committee recognizes that an employer, labor organization, employment agency, or joint labor-management committee can act in its 

capacity as an employer, or in its capacity under ERISA as a plan 

sponsor, fiduciary, or plan administrator. The actions of an employer, labor organization, employment agency, or joint labor-management committee when taken in its capacity as a plan sponsor, 

fiduciary, or plan administrator, would be governed by title I of 

this legislation. Currently, courts must decide whether conduct of 

an employer violates ERISA or title VII of the Civil Rights Act of 

1964, depending on whether the employer was acting in its capacity as a group health plan or as an employer, respectively. The 

committee does not intend to extend liability under title II, where 

broader remedies may be more attractive than the remedies under 

title I, for violations of title I. The legislation should not be interpreted to change current law and courts will continue to evaluate 

the facts in light of existing precedent. 

The third rule of construction reiterates that the Genetic Information Nondiscrimination Act serves as a Federal floor for genetics 

rights and does not pre-empt Federal and State laws that provide 

equal or greater protections to individuals. This follows the long 

line of Federal employment, wage and hour, and other laws. The 

remaining rules of construction make clear that this legislation 

shall not be construed to interfere with the normal operation of 

several existing statutes and programs; specifically, these are the 

Armed Forces Repository of Specimen Samples for the Identification of Remains, applicable workers’ compensation laws, occupational and other health research pursuant to 45 C.F.R. Part 46, 

and regulatory actions by the Occupational Safety and Health Administration and the Mine Safety and Health Administration. 

V. COST ESTIMATE

MARCH 28, 2007. 

Hon. EDWARD M. KENNEDY, 

Chairman, Committee on Health, Education, Labor, and Pensions, 

U.S. Senate, Washington, DC. 

DEAR MR. CHAIRMAN: The Congressional Budget Office has prepared the enclosed cost estimate for S. 358, the Genetic Information Nondiscrimination Act of 2007. 

If you wish further details on this estimate, we will be pleased 

to provide them. The CBO staff contact is Shinobu Suzuki. 

Sincerely, 

PETER R. ORSZAG. 

Enclosure.—

S. 358—Genetic Information Nondiscrimination Act of 2007 

S. 358 would amend the Employee Retirement Income Security 

Act of 1974 (ERISA), the Public Health Service Act, and Title XVIII 

of the Social Security Act to prohibit the use of genetic information 

(including results of genetic tests and family history of disease) by 

employers in employment decisions and by health insurers and 


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health plans in making enrollment determinations and setting insurance premiums. 

CBO estimates that enacting the bill would increase the number 

of individuals who obtain health insurance by about 600 people per 

year, nearly all of whom would obtain insurance in the individual 

market. The bill would affect federal revenues because the premiums paid by some of those newly insured individuals would be 

tax-deductible. 

CBO estimates that enacting S. 358 would reduce revenues by 

less than $500,000 in each year from 2008 through 2017, by $1 million over the 2008–2012 period, and by $2 million over the 2008–

2017 period. (These estimates include reductions in off-budget receipts from Social Security payroll taxes of less than $500,000 over 

the 2008–2012 period, and slightly less than $1 million over the 

2008–2017 period.) The bill’s requirements would apply to Medicare Supplemental Insurance, which could affect direct spending 

for Medicare. However, we estimate that the bill would have no significant effect on direct spending. 

The bill would require the Secretaries of Health and Human 

Services (HHS), Labor, and the Treasury to issue regulations to 

carry out the provisions of this bill, and would require the Secretaries of HHS and Labor to enforce those provisions. In addition, 

six years after enactment, the bill would establish a commission to 

review the science of genetics and to make recommendations to the 

Congress on the need to establish a disparate impact standard for 

genetic discrimination. The bill would authorize the appropriation 

of such sums as necessary to establish the commission and to carry 

out the other provisions of the bill. Assuming the appropriation of 

the necessary amounts, CBO estimates that implementing S. 358 

would increase discretionary spending by less than $500,000 in 

2008 and by $2 million over the 2008–2017 period. 

S. 358 would restrict how State and local governments use genetic information in employment practices and in the provision of 

health care to employees. That limitation on state and local actions 

would be an intergovernmental mandate as defined in the Unfunded Mandates Reform Act (UMRA), but there is little indication 

that state, local, or tribal governments currently engage in or are 

likely to engage in the activities that would be prohibited by the 

bill. Consequently, CBO estimates that the costs of the mandates 

would not be significant and would not exceed the threshold established in UMRA ($66 million in 2007, adjusted annually for inflation). 

The bill contains private-sector mandates on health insurers, 

health plans, employers, labor unions, and other organizations. 

CBO estimates that the direct cost of those requirements would not 

exceed the annual threshold specified in UMRA ($131 million in 

2007, adjusted annually for inflation) in any of the first five years 

the mandates would be effective. 

The CBO staff contacts for this estimate are Shinobu Suzuki (for 

federal costs); Leo Lex (for the State and local impact), and David 

Auerbach (for the private-sector impact). This estimate was approved by Peter H. Fontaine, Deputy Assistant Director for Budget 

Analysis. 


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VI. APPLICATION OF LAW TO THE LEGISLATIVE BRANCH

Section 102(b)(3) of Public Law 104–1, the Congressional Accountability Act (CAA), requires a description of the application of 

this bill to the legislative branch. S. 358 prohibits discrimination 

on the basis of genetic information with respect to health insurance 

and employment. With respect to health insurance, the provisions 

of S. 358 would indirectly apply to the Federal Employees Health 

Benefits Program (FEHBP) which contracts with insurance issuers 

and provides coverage to Members and employees of the legislative 

branch. The impact of this legislation on the FEHBP may not be 

relevant, however, given that the FEHBP already has broad nondiscrimination rules in place, and given the fact that, pursuant to 

existing laws and regulations, eligibility for enrollment in the 

FEHBP is based solely on employment with the Federal Government, not medical conditions. With respect to employment, Executive Order 13145, issued February 10, 2000, prohibits discrimination in Federal employment based on genetic information, and current laws and regulations ensure that disqualification for Federal 

employment can only be based on job-related criteria. Through the 

CAA, these laws, and S. 358, would be applicable to the legislative 

branch. 

VII. REGULATORY IMPACT STATEMENT

The committee has determined that there will be minimal increases in the regulatory burden imposed by this bill. 

Title I of the bill generally builds on existing regulatory structures and industry practices. It is composed of several sections and 

applies to group health plans, group health insurance, insurers in 

the individual market, and issuers of Medicare supplemental policies. All non-governmental and many non-Federal, State and local 

governmental group health plans are subject to existing protections 

under ERISA, PHSA, and IRC that pertain to discrimination based 

on health-status. These plans are also currently subject to the HHS 

medical privacy rules. While the legislation adds to the substance 

of these existing requirements, it does not add any major new concepts or requirements, such as a notice requirement. Based on 

these factors, the committee has determined that there will be negligible regulatory impact with respect to group health plans. 

Although insurance issuers of Medicare supplemental policies 

and individual policies are not subject to Federal law banning genetic discrimination, many States have already passed laws in this 

area. In addition, the majority of these issuers are currently subject 

to the HHS medical privacy rules. Thus, the committee has determined that there will be minimal regulatory burden imposed with 

respect to insurance issuers Medicare supplemental policies and individual policies. 


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VIII. SECTION-BY-SECTION ANALYSIS

Title I—Genetic Non-Discrimination in Health Insurance 

Sec. 101. Amendments to Employee Retirement Income Security Act 

of 1974 

Subsection (a). Prohibition of Health Discrimination on the 

Basis of Genetic Information or Genetic Services 

Sec. 101(a)(1)—No Enrollment Restriction for Genetic Services. 

This provision amends ERISA 702(a)(1)(F) to include ‘‘information 

about a request for or receipt of genetics services by an individual 

or family member of such individual.’’

Sec. 101(a)(2)—No Discrimination in Group Premiums Based on 

Genetic Information. This provision amends ERISA 702(b) to prohibit a health insurance issuer offering group health coverage in 

connection with a group health plan from adjusting premium or 

contribution amounts for a group on the basis of genetic information concerning an individual in the group or a family member of 

the individual. 

Sec. 101(b)—Limitations on Genetic Testing. This section amends 

Section 702 of ERISA to include a prohibition on genetic testing. 

Specifically, this provision prohibits a group health plan or a health 

insurance issuer offering group health insurance coverage in connection with a group health plan from requesting or requiring an 

individual or a family member of such individual to undergo a genetic test. This section does not limit the authority of the treating 

health care professional to request that such individual or family 

member undergo a genetic test. Nor does it limit the authority of 

a health care professional who is employed by or affiliated with the 

group health plan or health insurance issuer and who is providing 

health care services to the enrolled individual as part of a wellness 

program (as defined under regulations promulgating ERISA Section 702 at 29 CFR 2590.702(f)) from notifying such individual 

about the availability of a genetic test or providing information 

about the genetic test. Finally, this section does not authorize or 

permit a health care professional to require that an individual undergo a genetic test. 

Application to All Plans. This provision applies the requirements 

of the amendments made by section 101 of the Genetic Information 

Nondiscrimination Act to small group health plans (and group 

health insurance coverage offered in connection with a group 

health plan) that are otherwise exempt, under Section 732(a) of 

ERISA, from the other non-discrimination prohibitions under Section 702 of ERISA. Therefore, the requirements of such amendments apply to a group health plan (and group health insurance 

coverage offered in connection with a group health plan) that, on 

the first day of the plan year, has less than two participants who 

are current employees for any plan year. Such amendments also 

apply to retiree only group health plans (and group health insurance coverage offered in connection with a group health plan). 

Section 101(c)—Remedies and Enforcement. This section amends 

Section 502 of ERISA to clarify and strengthen remedies available 

to group health plan participants for violations of the genetic nondiscrimination provisions added by title I. 


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(1) Injunctive Relief for Irreparable Harm—This provision clarifies that an ERISA plan participant or beneficiary can seek relief 

in court under Section 502(a)(1)(B) of ERISA for a violation of the 

amendments made by section 101 of this Act, prior to the exhaustion of the plan’s administrative remedies under Section 503 of 

ERISA. To qualify for such relief, a participant or beneficiary must 

demonstrate to the court, by a preponderance of evidence, that the 

exhaustion of administrative remedies would cause irreparable 

harm to the health of such participant or beneficiary. Any determinations made, either previously or while an action under this 

provision is pending, under the plan’s administrative remedies 

shall be given due consideration by the court. 

(2) Equitable Relief for Genetic Discrimination—This provision 

clarifies and expands the type of equitable relief and penalties 

available under Section 502 of ERISA for a violation of this Section. 

(A) Reinstatement of Benefits Where Equitable Relief Has Been 

Awarded—If a participant or beneficiary recovers benefits under 

Section 502(a)(1)(B) of ERISA for a violation of the amendments 

made by section 101 of this Act, this provision allows the court, in 

its discretion, to reinstate coverage retroactively. Specifically, 

where a participant or beneficiary has been wrongfully denied eligibility under the plan due to a violation of such section, the court 

can award reinstatement of a participant’s or beneficiary’s coverage, retroactive to the date of the denial of such eligibility. 

(B) Administrative Penalty Where Equitable Relief Has Been 

Awarded—If a participant or beneficiary recovers benefits under 

Section 502(a)(1)(B) for a violation of the amendments made by section 101 of this Act, this provision allows the court, in its discretion, to levy a penalty on the administrator who fails to comply 

with the requirements of this title. Such administrator can be held 

personally liable for a penalty in the amount of not more than $100 

for each day in the non-compliance period. Such penalty shall be 

payable to the participant or beneficiary involved. The non-compliance period is defined as the period beginning on the date that the 

failure, a violation of any of the provision of this Section, occurs 

and ending on the date that such failure is corrected. 

(3) Secretarial Enforcement Authority—Under current law, 

HIPAA’s existing nondiscrimination provisions are enforced by the 

personal remedies available under ERISA 502(a)(1) or (3). In addition, the Department of the Treasury and Internal Revenue Service 

may levy an excise tax against a group health plan for its failure 

to comply with HIPAA’s requirements. The Department of Labor is 

not currently authorized to impose penalties for HIPAA violations. 

This provision maintains the size and framework of the HIPAA excise tax, but transfers the enforcement authority to the Department 

of Labor solely for the purposes of enforcing this section. 

Amount of Penalty—Specifically, the Secretary of Labor may impose a civil penalty against a group health plan for any violation 

of this Section in the amount of $100 for each day in the noncompliance with respect to each individual to whom such failure relates. A higher penalty of $2,500 for each day of noncompliance 

shall be applied where there is one or more failure with respect to 

an individual involved and where the plan did not correct the failure within the specified time. A penalty of $15,000 shall be applied 


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if the violation under this title in any year is more than de minimis. 

Limitations—No penalty applies under this paragraph if the Secretary determines that the person did not know, or through reasonable diligence would not have known, that such failure existed. A 

penalty shall be imposed on any failures due to reasonable cause 

and not willful neglect; and if such failure is corrected within 30 

days of discovery. The overall limitation for unintentional failures 

due to reasonable cause shall not exceed the lesser of 10 percent 

of the amount paid or incurred by the employer during the preceding taxable year for group health plans or $500,000. The Secretary may waive all or part of any penalty imposed by this section 

if the penalty would be excessive relative to the failure involved. 

Sec. 101(d)—Definitions. This section adds new definitions to 

Section 733(d) of ERISA with respect to genetic nondiscrimination. 

Family Member—Means the spouse of the individual, a dependent child of the individual, and other individuals related by blood 

to the individual or the spouse or child. 

Genetic Information—Means information about an individual’s 

genetic tests, the genetic tests of family members of the individual, 

or the occurrence of a disease or disorder in family members of the 

individual. It does not include information about the sex or age of 

an individual. 

Genetic Test—Means an analysis of human DNA, RNA, chromosomes, proteins, or metabolites, that detects genotypes, 

mutations, or chromosomal changes. It does not mean an analysis 

of proteins or metabolites that does not detect genotypes, 

mutations, or chromosomal changes or an analysis of proteins or 

metabolites that is directly related to a manifested disease, disorder, or pathological condition that could reasonably be detected 

by a health care professional with appropriate training and expertise in the field of medicine involved. 

Genetic Services—Means a genetic test; genetic counseling (such 

as obtaining, interpreting, or assessing genetic information); or genetic education. 

Sec. 101(e)—Regulations and Effective Date. The Secretary of 

Labor shall issue final regulations not later than 1 year after enactment. The amendments made by this act shall apply to group 

health plans for plan years beginning 18 months after enactment. 

Sec. 102. Amendments to the Public Health Service Act 

Subsection (a)—Amendments Relating to the Group Market 

(1) Prohibition of Health Discrimination on the Basis of Genetic 

Information or Genetic Services—Section 2702(a)(1)(F) and 2702(b) 

of the Public Health Service Act currently prohibits a group health 

plan and a health insurance issuer offering group health insurance 

coverage in connection with a group health plan from discriminating—in eligibility for enrollment or premium contributions—

against an individual in the group based on the individual’s health 

status-related factors, including genetic information. In general, 

this section clarifies and expands this provision by prohibiting discrimination based on genetic information. 

(A) No Enrollment Restriction for Genetic Services—This provision clarifies within the existing prohibition banning discrimination 


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in enrollment against an individual in the group that the term ‘‘genetic information’’ includes ‘‘information about a request for or receipt of genetics services by an individual or family member of such 

individual.’’

(B) No Discrimination in Group Premiums Based on Genetic Information—This provision prohibits a health insurance issuer offering group health coverage in connection with a group health plan 

from adjusting premium or contribution amounts for a group on the 

basis of genetic information concerning an individual in the group 

or a family member of the individual. 

(2) Limitations on Genetic Testing—This section amends section 

2702 of the Public Health Service Act to include a prohibition on 

genetic testing. Specifically, this provision prohibits a group health 

plan or a health insurance issuer offering group health insurance 

coverage in connection with a group health plan from requesting or 

requiring an individual or a family member of such individual to 

undergo a genetic test. Section 102 does not limit the authority of 

the treating health care professional to request that such individual or family member undergo a genetic test. Nor does it limit 

the authority of a health care professional who is employed by or 

affiliated with the group health plan or health insurance issuer and 

who is providing health care services to the enrolled individual as 

part of a wellness program (as defined under regulations promulgating PHSA Section 2702 at 45 CFR 146.121(f)) from notifying 

such individual about the availability of a genetic test or providing 

information about the genetic test. Finally, this section does not 

authorize or permit a health care professional to require that an 

individual undergo a genetic test. 

Application to All Plans—This provision applies the requirements of the amendments made by section 102(a) of the Genetic Information Nondiscrimination Act to small group health plans (and 

group health insurance coverage offered in connection with a group 

health plan) that are otherwise exempt, under section 2721(a) of 

the Public Health Service Act, from the nondiscrimination prohibitions under section 2702. Therefore, the requirements of such 

amendments apply to a group health plan (and group health insurance coverage offered in connection with a group health plan) that, 

on the first day of the plan year, has less than two participants 

who are current employees for any plan year. Such amendments 

also applies to retiree-only group health plans (and group health 

insurance coverage offered in connection with a group health plan). 

(3) Remedies and Enforcement—This section amends section 

2722(b) of the Public Health Service Act to allow for enforcement 

of the requirements the amendments made by section 102(a) 

against health insurance issuers offering group health insurance 

coverage in connection with a group health plan. The enforcement 

mechanism is the same as that created by HIPAA to enforce existing nondiscrimination provisions against health insurance issuers 

offering group health insurance coverage in connection with a 

group health plan under section 2702 of the PHSA. In general, a 

State may require health insurance issuers to meet the requirements of HIPAA. If a State fails to substantially enforce a provision 

with respect to health insurance issuers, the Secretary of HHS 

shall enforce. 


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Secretarial Enforcement Authority Relating to Genetic Discrimination—In cases where the Secretary of HHS determines that a 

State has failed to substantially enforce the requirements of the 

amendments made by section 102(a) against a health insurance 

issuer offering group health insurance coverage, the Secretary has 

the authority to impose a civil monetary penalty on the issuer. 

Amount of Penalty—Specifically, the Secretary of HHS may impose a civil penalty against a group health plan for any violation 

of the amendments made by section 102(a) in the amount of $100 

for each day in the non-compliance with respect to each individual 

to whom such failure relates. A higher penalty of $2,500 for each 

day of non-compliance shall be applied where there is one or more 

failure with respect to an individual involved and where the plan 

did not correct the failure within the specified time. A penalty of 

$15,000 shall be applied where the violation under the amendments made by section 102(a) in any year is more than de minimis. 

Limitations—No penalty applies under this paragraph if the Secretary determines that the person did not know, or through reasonable diligence would not have known, that such failure existed. No 

penalty shall be imposed on any failures due to reasonable cause 

and not willful neglect; and if such failure is corrected within 30 

days of discovery. The overall limitation for unintentional failures 

due to reasonable cause shall not exceed the lesser of 10 percent 

of the amount paid or incurred by the employer during the preceding taxable year for group health plans or $500,000. The Secretary may waive all or part of any penalty imposed by this section 

if the penalty would be excessive relative to the failure involved. 

(4) Definitions—This section adds new definitions to section 

2791(d) of the PHSA with respect to genetic nondiscrimination. The 

definitions are identical to the definitions applying to group health 

plans under section 101. 

Subsection (b). Amendments Relating to the Individual Market 

(b)(1). Adds a new section 2753 to subpart 2 to title XXVII of 

PHSA relating to genetic nondiscrimination. 

Sec. 2753(a)—Prohibition on Genetic Information as a Condition 

of Eligibility. A health insurance issuer in the individual market 

may not establish rules for eligibility (including continued eligibility) for an individual to enroll for coverage based on genetic information (including information about a request for or receipt of 

genetic services by an individual or family member of such individual). This subsection also incorporates by reference the prohibition that currently applies under section 2701(b)(1)(B) of the Public 

Health Service Act to a group health plan and a health insurance 

issuer offering coverage in the group market against treating genetic information as a pre-existing condition. 

Sec. 2753(b)—Prohibition on Genetic Information in Setting Premium Rates. A health insurance issuer in the individual market 

shall not adjust the premium or contribution amounts for an individual on the basis of such individual’s genetic information (including information about a request for or receipt of genetic services). 

Sec. 2753(c)—Limitation on Genetic Testing. This provision prohibits a health insurance issuer in the individual market from requesting or requiring an individual or a family member of such inVerDate Aug 31 2005 04:10 Apr 13, 2007 Jkt 059010 PO 00000 Frm 00040 Fmt 6659 Sfmt 6602 E:\HR\OC\SR048.XXX SR048

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dividual to undergo a genetic test. This provision does not limit the 

authority of the treating health care professional to request that 

such individual or family member undergo a genetic test. Nor does 

it limit the authority of a health care professional who is employed 

by or affiliated with the group health plan or health insurance 

issuer and who is providing health care services to the enrolled individual as part of a wellness program (as defined under regulations promulgating PHSA section 2702 at 45 CFR 146.121(f)) from 

notifying such individual about the availability of a genetic test or 

providing information about the genetic test. Finally, this provision 

does not authorize or permit a health care professional to require 

that an individual undergo a genetic test. 

(2) Remedies and Enforcement.—This section amends section 

2761 of PHSA to establish the same enforcement mechanism and 

secretarial authority against health insurance issuers in the individual market as is provided for enforcing the genetic nondiscrimination provisions against health insurance issuers in the 

group market. 

Subsection (c). Elimination of Option of Non-Federal Governmental Plans to be Excepted From Requirements Concerning Genetic Information 

This subtitle creates an exception to the existing opt-out provision under section 2721(a)(1)(2) of the PHSA that provides nonFederal governmental plans the ability to opt out of certain requirements created by HIPAA. Therefore, all non-Federal governmental health plans must comply with the genetic nondiscrimination requirements created by this Act in the same manner as other 

non-governmental group health plans. 

Subsection (d)—Regulations and Effective Date 

Not later than 1 year after the date of enactment of this title, 

the Secretary of Labor and the Secretary of HHS (as the case may 

be) shall issue final regulations to carry out the amendments made 

by this section. The amendments made by this section shall apply 

to group health plans and insurance for plan years beginning after 

the date that is 18 months after the date of enactment of this title. 

The amendments made by this section shall apply to insurance in 

the individual market 18 months after date of enactment. 

Sec. 103. Amendments to Title XVIII of the Social Security Act Relating to Medigap 

Subsection (a). Nondiscrimination 

Sec. 103(a)(1)—Amends section 1882(s)(2) of the Social Security 

Act by adding the following: An issuer of a Medicare supplemental 

policy shall not deny or condition the issuance or effectiveness of 

the policy, and shall not discriminate in the pricing of the policy 

(including premium rate adjustments) of an individual on the basis 

of genetic information (or information about a request for, or receipt of, genetic services by such individual or family member of 

such individual). 

Sec. 103(a)(2)—Effective Date. Prohibition in (a)(1) applies for 

policy years beginning after the date that is 18 months after the 

date of enactment. 


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Sec. 103(b)(1)—Limitation on Genetic Testing. This provision 

amends 1882 of the Social Security Act to prohibit an issuer of a 

Medicare supplemental policy from requesting or requiring an individual or a family member of such individual to undergo a genetic 

test. This provision does not limit the authority of the treating 

health care professional to request that such individual or family 

member undergo a genetic test. Nor does it limit the authority of 

a health care professional who is employed by or affiliated with the 

issuer of the Medicare supplemental policy and who is providing 

health care services to the enrolled individual as part of a wellness 

program (as defined under regulations promulgating ERISA section 

702) from notifying such individual about the availability of a genetic test or providing information about the genetic test. Finally, 

this provision does not authorize or permit a health care professional to require that an individual undergo a genetic test. 

Definitions—The definitions of ‘‘family member,’’ ‘‘genetic information,’’ and ‘‘genetic test,’’ and ‘‘genetic services’’ are identical to 

the definitions applying to group health plans under section 101. 

This subsection includes the following additional definition: 

Issuer of a Medicare Supplemental Policy—includes a third-party 

administrator or other person acting for or on behalf of such issuer. 

Sec. 103(b)(2)—Conforming Amendment. The legislation requires 

an issuer to conform to and abide by the protections against genetic 

discrimination described in this section in order to be certified by 

the Secretary as an issuer of a Medigap policy. 

Sec. 103(c)—Transition Provisions. The Secretary of HHS identifies whether a State needs to change its statute or regulations to 

comply with this section. A State has until the earlier of the date 

the State changes its statute or regulations to conform to this section, or October 1, 2008 to make the necessary changes and will not 

be considered out of compliance until such date. The National Association of Insurance Commissioners (NAIC) regulations shall be 

considered to be the applicable NAIC model regulation if such regulations are updated in a timely manner to be consistent with the 

Genetic Information Nondiscrimination Act. If the NAIC does not 

modify its model regulations in the timeframe established, the Secretary of HHS shall, not later than October 1, 2008, promulgate the 

regulation. If a State requires conforming legislation but its legislature is not scheduled to meet in 2008, the date of required compliance specified by this paragraph is the first day of the first calendar quarter beginning after the close of the first legislative session of the State legislature that begins on or after July 1, 2008. 

For a State that has a 2-year legislative session, each year of such 

sessions shall be deemed to be a separate regular session of the 

State legislature. 

Sec. 104. Privacy and Confidentiality 

Sec. 104(a)—Applicability. The provisions in this section apply to 

all group health plans, health insurance issuers (including issuers 

offering coverage in connection with group health plans or individual health coverage), and issuers of Medicare supplemental policies as defined in previous sections of this Act and without any exception for small groups or a non-Federal governmental opt-out. 

Sec. 104(b). Compliance with Certain Confidentiality Standards 

with Respect to Genetic Information. 


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(1) In General—The medical privacy rules promulgated by HHS 

(45 CFR Parts 160 and 164; final rule) shall apply to the use and 

disclosure of genetic information. 

(2) Prohibition on Underwriting and Premium Rating—As an exception to (1), a group health plan, health insurance issuer, or 

issuer of a Medicare supplemental policy shall not use or disclose 

genetic information (including information about a request for or a 

receipt of genetic services by an individual or family member of 

such individual) for purposes of underwriting, determining eligibility to enroll, premium rating, or the creation, renewal or replacement of a plan, contract or coverage for health insurance or benefits. 

Sec. 104(c). Prohibition on Collection of Genetic Information. 

(1) In General—A group health plan, health insurance issuer, or 

issuer of a Medicare supplemental policy shall not request, require, 

or purchase genetic information for purposes of underwriting, determining eligibility to enroll, premium rating, or the creation, renewal or replacement of a plan, contract or coverage under the 

plan or for health insurance or benefits. 

(2) Limitation Relating to the Collection of Genetic Information 

Prior to Enrollment—A group health plan, health insurance issuer, 

or issuer of Medicare supplemental policy shall not request, require, or purchase genetic information concerning a participant, 

beneficiary, or enrollee prior to the enrollment, and in connection 

with such enrollment, of such individual under the plan, coverage, 

or policy. 

(3) Incidental Collection—Where a group health plan, health insurance issuer, or issuer of a Medicare supplemental policy obtains 

genetic information incidental to the requesting, requiring, or purchasing of other information concerning an individual, such request, requirement, or purchase shall not be considered a violation 

if it is not obtained for purposes of underwriting as defined under 

paragraph (1) and any genetic information obtained incidentally is 

not used or disclosed in violation of the HHS medical privacy regulations. 

Sec. 104(d)—Application of Confidentiality Standards. The requirements of this section apply only to group health plans, health 

insurance issuers, and issuers of Medicare supplemental policies 

that are otherwise covered under the HHS medical privacy regulations. Therefore, the health plan exceptions contained in the medical privacy regulations also apply with respect to the requirements 

under this section. The requirements of this section do not apply 

to genetic information that is not considered to be individuallyidentifiable under HHS medical privacy regulations. 

Sec. 104(e)—Enforcement. Covered entities under this section are 

subject to the same penalties that exist for medical privacy regulations under sections 1176 and 1177 of the Social Security Act for 

privacy and confidentiality violations of genetic information under 

section 104. 

Sec. 104(f)—Pre-emption. The pre-emption provision for this section is the same standard that exists for the medical privacy regulations. Specifically, a requirement under this section shall supersede any contrary provision of State law unless such provision of 

State law imposes requirements, standards, or implementation 

specifications that are more stringent than those imposed under 


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this section. No penalty, remedy, or cause of action to enforce such 

as State law that is more stringent shall be pre-empted by this section. This provision shall not be construed to establish a penalty, 

remedy, or cause of action under State law if it is not otherwise 

available under State law. 

Sec. 104(g)—Coordination with Privacy Regulations. The Secretary of HHS shall implement and administer this section in a 

manner that is consistent with the medical privacy regulations. 

Sec. 104(h)(1)—Definitions. The definitions of ‘‘family member,’’

‘‘genetic information,’’ ‘‘genetic services,’’ and ‘‘genetic test’’ are 

identical to the definitions in section 101 of this bill. However, a 

new definition of group health plan is included. 

(2) Group Health Plan/Health Insurance Issuer—These terms include only those plans and issuers that are otherwise covered 

under the HHS medical privacy regulations and under (d)(1) of this 

section. 

(3) Issuer of a Medicare Supplemental Policy—Means an issuer 

described in section 1882 of the Social Security Act. 

(4) Secretary—Means the Secretary of Health and Human Services. 

Sec. 105. Assuring Coordination 

(a) The Secretary of Health and Human Services, and the Secretary of Labor shall ensure, through the execution of an interagency memorandum of understanding, that regulations, rulings, 

and interpretations are administered to have the same effect when 

there are two or more agencies of jurisdiction. Such Secretaries 

shall pursue coordinated enforcement strategies and assign priorities in enforcement. 

(b) The Secretary of Health and Human Services shall have sole 

authority over section 104, the privacy and confidentiality standards pertaining to genetic information. 

Sec. 106. Regulations and Effective Date 

No later than 1 year after the date of enactment, the Secretaries 

of Labor and Health and Human Services shall issue final regulations. Except as provided in section 103 with respect to an issuer 

of a Medicare supplemental policy, the requirements of this act 

shall take effect 18 months after enactment. 

Title II—Employment 

Sec. 201. Definitions. The section defines the parties covered by 

the act—employer, employment agency, labor organization—and 

ensures that State, Federal and congressional employees receive 

the same protections. Family members are defined as the spouse 

or dependent child of an individual, and all other individuals related by blood to the individual or his/her spouse or dependant 

child. Genetic information is defined as information about genetic 

tests of an individual or his/her family member. Genetic information also means information about the occurrence of disease or disorder in family members of the individual. It does not, however, include information about the sex or age of an individual. The section 

defines genetic monitoring, services and tests consistent with title 

I. 


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Sec. 202. Employer Practices. An employer is prohibited from 

using genetic information to discriminate against an individual in 

employment. The section also makes it unlawful for an employer to 

request, require or purchase genetic information. Several specific 

exceptions are included: where an employer inadvertently requests 

or requires family medical history information; pursuant to an employer-sponsored wellness program; where the information relating 

to a family member is requested or required to comply with the certification provisions of Federal or State family and medical leave 

laws; where an employer purchases family medical history information that is publicly available through such items as newspapers, 

periodicals and books; or where the information is used for genetic 

monitoring of the biological effects of toxic substances in the workplace. Despite lawful acquisition of the information through these 

exceptions, the section makes clear that the employer still may not 

use or disclose the information in violation of the title. 

Sec. 203. Employment Agency Practices. This section extends parallel obligations and exceptions to employment agencies as apply to 

employers under sec. 202. 

Sec. 204. Labor Organization Practices. This section extends parallel obligations and exceptions to labor organizations as apply to 

employers under sec. 202. 

Sec. 205. Training Programs. This section extends parallel obligations and exceptions to joint labor-management committees as 

apply to employers under Sec. 202. 

Sec. 206. Confidentiality of Genetic Information. This section provides that an individual’s genetic information shall be treated and 

maintained as part of the individual’s confidential medical records. 

Disclosure is prohibited, except to: the individual; an occupational 

or health researcher; in response to an order of a court; to government officials investigating compliance with this title; or to the extent that disclosure is made in connection with the employee’s compliance with the certification provisions of section 103 of the Family and Medical Leave Act, or such requirements under State family and medical leave laws. 

Sec. 207. Remedies and Enforcement. The bill incorporates by reference the powers, remedies, and procedures set forth in title VII 

the Civil Rights Act of 1964, as amended. Similar powers, remedies 

and procedures are specified for State, Federal and congressional 

employees. 

Sec. 208. Disparate Impact. The bill prohibits claims based on 

disparate impact, and empanels a commission in 6 years to review 

the science of genetics and make recommendations to Congress regarding whether to provide a disparate impact cause of action 

under this act. 

Sec. 209. Construction. This section provides several rules of construction to clarify the intent of the committee and to assist courts 

in interpreting the title. The section makes clear that this title 

shall not be construed to limit the rights or protections of individuals under the Americans with Disabilities Act or the Rehabilitation Act of 1973. Similarly, the section clarifies that title II does 

not create violations for employers, employment agencies, labor organizations, or joint labor-management committees of provisions 

under title I. The section clarifies that the act sets the floor for individual rights and protections and does not limit the rights and 


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protections under other Federal or State laws. Workers compensation laws are neither expanded nor restricted by the bill. Finally, 

the section provides rules of construction to ensure the proper operation of Federal programs and laws, including the Armed Services 

Repository of Specimen Samples, occupational health and safety research, and workplace safety and health laws and regulations. 

Section 210. Medical Information That Is Not Genetic Information. The section clarifies that an employer, employment agency, 

labor organization or joint labor-management committee shall not 

be considered to be in violation of this title based on the use, acquisition, or disclosure of medical information of an employee or member that is not genetic information, about a manifested disease, disorder or pathological condition that has or may have a genetic 

basis. 

Sec. 211. Regulations. The EEOC is charged with issuing final 

regulations under this title within 1 year of enactment. 

Sec. 212. Authorization of Appropriations. Such sums as may be 

necessary. 

Sec. 213. Effective Date. Eighteen months after enactment. 

Title III—Miscellaneous Provision 

Sec. 301. Severability. If any provision of this act, or an amendment made by this Act, or the application of such provision or 

amendment is held to be unconstitutional, the remainder of this act 

shall not be affected. 

IX. CHANGES IN EXISTING LAW

In compliance with rule XXVI paragraph 12 of the Standing 

Rules of the Senate, the following provides a print of the statute 

or the part or section thereof to be amended or replaced (existing 

law proposed to be omitted is enclosed in black brackets, new matter is printed in italic, existing law in which no change is proposed 

is shown in roman): 

EMPLOYEE RETIREMENT INCOME SECURITY ACT OF 

1974 

* * * * * * * 

SEC. 502. (a) A civil action may be brought— (l) * * * 

* * * * * * * 

(m) * * * 

(n) ENFORCEMENT OF GENETIC NONDISCRIMINATION REQUIREMENTS.—

(1) INJUNCTIVE RELIEF FOR IRREPARABLE HARM.—With respect 

to any violation of subsection (a)(1)(F), (b)(3), or (c) of section 

702, a participant or beneficiary may seek relief under subsection 502(a)(1)(B) prior to the exhaustion of available administrative remedies under section 503 if it is demonstrated to the 

court, by a preponderance of the evidence, that the exhaustion 

of such remedies would cause irreparable harm to the health of 

the participant or beneficiary. Any determinations that already 

have been made under section 503 in such case, or that are 

made in such case while an action under this paragraph is 


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47 

pending, shall be given due consideration by the court in any 

action under this subsection in such case. 

(2) EQUITABLE RELIEF FOR GENETIC NONDISCRIMINATION.—

(A) REINSTATEMENT OF BENEFITS WHERE EQUITABLE RELIEF HAS BEEN AWARDED.—The recovery of benefits by a 

participant or beneficiary under a civil action under this 

section may include an administrative penalty under subparagraph (B) and the retroactive reinstatement of coverage 

under the plan involved to the date on which the participant or beneficiary was denied eligibility for coverage if—

(i) the civil action was commenced under subsection 

(a)(1)(B); and 

(ii) the denial of coverage on which such civil action 

was based constitutes a violation of subsection 

(a)(1)(F), (b)(3), or (c) of section 702. 

(B) ADMINISTRATIVE PENALTY.—

(i) IN GENERAL.—An administrator who fails to comply with the requirements of subsection (a)(1)(F), (b)(3), 

or (c) of section 702 with respect to a participant or 

beneficiary may, in an action commenced under subsection (a)(1)(B), be personally liable in the discretion 

of the court, for a penalty in the amount not more than 

$100 for each day in the noncompliance period. 

(ii) NONCOMPLIANCE PERIOD.—For purposes of clause 

(i), the term ‘‘noncompliance period’’ means the period—

(I) beginning on the date that a failure described 

in clause (i) occurs; and 

(II) ending on the date that such failure is corrected. 

(iii) PAYMENT TO PARTICIPANT OR BENEFICIARY.—A 

penalty collected under this subparagraph shall be 

paid to the participant or beneficiary involved. 

(3) SECRETARIAL ENFORCEMENT AUTHORITY.—

(A) GENERAL RULE.—The Secretary has the authority to 

impose a penalty on any failure of a group health plan to 

meet the requirements of subsection (a)(1)(F), (b)(3), or (c) 

of section 702. 

(B) AMOUNT.—

(i) IN GENERAL.—The amount of the penalty imposed 

by subparagraph (A) shall be $100 for each day in the 

noncompliance period with respect to each individual 

to whom such failure relates. 

(ii) NONCOMPLIANCE PERIOD.—For purposes of this 

paragraph, the term ‘‘noncompliance period’’ means, 

with respect to any failure, the period—

(I) beginning on the date such failure first occurs; and 

(II) ending on the date such failure is corrected. 

(C) MINIMUM PENALTIES WHERE FAILURE DISCOVERED.—

Notwithstanding clauses (i) and (ii) of subparagraph (D): 

(i) IN GENERAL.—In the case of 1 or more failures 

with respect to an individual—


bajohnson on PRODPC74 with HEARING
48 

(I) which are not corrected before the date on 

which the plan receives a notice from the Secretary 

of such violation; and 

(II) which occurred or continued during the period involved; the amount of penalty imposed by 

subparagraph (A) by reason of such failures with 

respect to such individual shall not be less than 

$2,500. 

(ii) HIGHER MINIMUM PENALTY WHERE VIOLATIONS

ARE MORE THAN DE MINIMIS.—To the extent violations 

for which any person is liable under this paragraph for 

any year are more than de minimis, clause (i) shall be 

applied by substituting ‘‘$15,000’’ for ‘‘$2,500’’ with respect to such person. 

(D) LIMITATIONS.— (i) PENALTY NOT TO APPLY WHERE FAILURE NOT DIS- COVERED EXERCISING REASONABLE DILIGENCE.—No 

penalty shall be imposed by subparagraph (A) on any 

failure during any period for which it is established to 

the satisfaction of the Secretary that the person otherwise liable for such penalty did not know, and exercising reasonable diligence would not have known, that 

such failure existed. 

(ii) PENALTY NOT TO APPLY TO FAILURES CORRECTED

WITHIN CERTAIN PERIODS.—No penalty shall be imposed by subparagraph (A) on any failure if— (I) such failure was due to reasonable cause and 

not to willful neglect; and 

(II) such failure is corrected during the 30-day 

period beginning on the first date the person otherwise liable for such penalty knew, or exercising 

reasonable diligence would have known, that such 

failure existed. 

(iii) OVERALL LIMITATION FOR UNINTENTIONAL FAIL- URES.—In the case of failures which are due to reasonable cause and not to willful neglect, the penalty imposed by subparagraph (A) for failures shall not exceed 

the amount equal to the lesser of— (I) 10 percent of the aggregate amount paid or 

incurred by the employer (or predecessor employer) 

during the preceding taxable year for group health 

plans; or (II) $500,000. 

(E) WAIVER BY SECRETARY.—In the case of a failure 

which is due to reasonable cause and not to willful neglect, 

the Secretary may waive part or all of the penalty imposed 

by subparagraph (A) to the extent that the payment of such 

penalty would be excessive relative to the failure involved. 

SEC. 702. PROHIBITING DISCRIMINATION AGAINST INDIVIDUAL PARTICIPANTS AND BENEFICIARIES BASED ON HEALTH STATUS. 

(a) IN ELIGIBILITY TO ENROLL.— (1) IN GENERAL.* * * 

(A)* * * 

* * * * * * * 


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(F) Genetic information (including information about a 

request for or receipt of genetic services by an individual or 

family member of such individual). 

* * * * * * * 

(b) IN PREMIUM CONTRIBUTIONS.—

(1) IN GENERAL.—* * * 

(2) CONSTRUCITON.—Nothing in paragraph (1) shall be construed—

(A) to restrict the amount that an employer may be 

charged for coverage under a group health plan, except as 

provided in paragraph (3); or 

* * * * * * * 

(3) NO DISCRIMINATION IN GROUP PREMIUMS BASED ON GENETIC INFORMATION.—For purposes of this section, a group 

health plan, or a health insurance issuer offering group health 

insurance coverage in connection with a group health plan, 

shall not adjust premium of contribution amounts for a group 

on the basis of genetic information concerning an individual in 

the group or a family member of the individual (including information about a request for or receipt of genetic services by an 

individual or family member of such individual). 

(c) GENETIC TESTING.—

(1) LIMITATION ON REQUESTING OR REQUIRING GENETIC TESTING.—A group health plan, or a health insurance issuer offering 

health insurance coverage in connection with a group health 

plan, shall not request or require an individual or a family 

member of such individual to undergo a genetic test. 

(2) RULE OF CONSTRUCTION.—Nothing in this part shall be 

construed to—

(A) limit the authority of a health care professional who 

is providing health care services with respect to an individual to request that such individual or a family member 

of such individual undergo a genetic test; 

(B) limit the authority of a health care professional who 

is employed by or affiliated with a group health plan or a 

health insurance issuer and who is providing health care 

services to an individual as part of a bona fide wellness 

program to notify such individual of the availability of a 

genetic test or to provide information to such individual regarding such genetic test; or 

(C) authorize or permit a health care professional to require that an individual undergo a genetic test. 

(d) APPLICATION TO ALL PLANS.—The provisions of subsection 

(a)(1)(F), (b)(3), and (c) shall apply to group health plans and 

health insurance issuers without regard to section 732(a). 

* * * * * * * 

SEC. 733. DEFINITIONS. 

(a) GROUP HEALTH PLAN.—

(1) IN GENERAL.—* * * 

* * * * * * * 

(d) OTHER DEFINITIONS.—For purposes of this part—


bajohnson on PRODPC74 with HEARING
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(1) * * * 

* * * * * * * 

(4) * * * 

(5) FAMILY MEMBER.—The term ‘‘family member’’ means with 

respect to an individual—

(A) the spouse of the individual; 

(B) a dependent child of the individual, including a child 

who is born to or placed for adoption with the individual; 

and 

(C) all other individuals related by blood to the individual or the spouse or child described in subparagraph (A) 

or (B). 

(6) GENETIC INFORMATION.—

(A) IN GENERAL.—Except as provided in subparagraph 

(B), the term ‘‘genetic information’’ means information 

about—

(i) an individual’s genetic tests; 

(ii) the genetic tests of family members of the individual; or 

(iii) the occurrence of a disease or disorder in family 

members of the individual. 

(B) EXCLUSIONS.—The term ‘‘genetic information’’ shall 

not include information about the sex or age of an individual. 

(7) GENETIC TEST.—

(A) IN GENERAL.—The term ‘‘genetic test’’ means an analysis of human DNA, RNA, chromosomes, proteins, or metabolites, that detects genotypes, mutations, or chromosomal changes. 

(B) EXCEPTIONS.—The term ‘‘genetic test’’ does not 

mean—

(i) an analysis of proteins or metabolites that does 

not detect genotypes, mutations, or chromosomal 

changes; or 

(ii) an analysis of proteins or metabolites that is directly related to a manifested disease, disorder, or 

pathological condition that could reasonably be detected by a health care professional with appropriate 

training and expertise in the field of medicine involved. 

(8) GENETIC SERVICES.—The term ‘‘genetic services’’ means—

(A) a genetic test; 

(B) genetic counseling (such as obtaining, interpreting, or 

assessing genetic information); or 

(C) genetic education. 

* * * * * * * 

PUBLIC HEALTH SERVICE ACT 

* * * * * * * 

SEC. 2702. PROHIBITING DISCRIMINATION AGAINST INDIVIDUAL PARTICIPANTS AND BENEFICIARIES BASED ON HEALTH STATUS. 

(a) IN ELIGIBILITY TO ENROLL.—

(1) IN GENERAL.—* * * 


bajohnson on PRODPC74 with HEARING
51 

(A) * * * 

* * * * * * * 

(F) Genetic information (including information about a 

request for or receipt of genetic services by an individual or 

family member of such individual). 

* * * * * * * 

(b) IN PREMIUM CONTRIBUTIONS.—

(1) IN GENERAL.—* * * 

(2) CONSTRUCTION.—Nothing in paragraph (1) shall be construed—

(A) to restrict the amount that an employer may be 

charged for coverage under a group health plan, except as 

provided in paragraph (3); or 

* * * * * * * 

(3) NO DISCRIMINATION IN GROUP PREMIUMS BASED ON GE- NETIC INFORMATION.—For purposes of this section, a group 

health plan, or a health insurance issuer offering group health 

insurance coverage in connection with a group health plan, 

shall not adjust premium or contribution amounts for a group 

on the basis of genetic information concerning an individual in 

the group or a family member of the individual (including information about a request for or receipt of genetic services by an 

individual or family member of such individual). 

(c) GENETIC TESTING.—

(1) LIMITATION ON REQUESTING OR REQUIRING GENETIC TESTING.—A group health plan, or a health insurance issuer offering 

health insurance coverage in connection with a group health 

plan, shall not request or require an individual or a family 

member of such individual to undergo a genetic test. 

(2) RULE OF CONSTRUCTION.—Nothing in this part shall be 

construed to—

(A) limit the authority of a health care professional who 

is providing health care services with respect to an individual to request that such individual or a family member 

of such individual undergo a genetic test; 

(B) limit the authority of a health care professional who 

is employed by or affiliated with a group health plan or a 

health insurance issuer and who is providing health care 

services to an individual as part of a bona fide wellness 

program to notify such individual of the availability of a 

genetic test or to provide information to such individual regarding such genetic test; or 

(C) authorize or permit a health care professional to require that an individual undergo a genetic test. 

(d) APPLICATION TO ALL PLANS.—The provisions of subsections 

(a)(1)(F), (b)(3), and (c) shall apply to group health plans and 

health insurance issuers without regard to section 2721(a). 

SEC. 2721. EXCLUSION OF CERTAIN PLANS. 

(a) EXCEPTION FOR CERTAIN SMALL GROUP HEALTH PLANS.—* * 

* 

(b) LIMITATION ON APPLICATION OF PROVISIONS RELATING TO

GROUP HEALTH PLANS.—


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(1) IN GENERAL.—* * * 

* * * * * * * 

(2) TREATMENT OF NONFEDERAL GOVERNMENTAL PLANS.—

(A) ELECTION TO BE EXCLUDED.—øIf the plan sponsor¿ 

Except as provided in subparagraph (D), if the plan sponsor of a nonfederal governmental plan which is a group 

health plan to which the provisions of subparts 1 through 

3 otherwise apply makes an election under this subparagraph (in such form and manner as the Secretary may by 

regulations prescribe), then the requirements of such subparts insofar as they apply directly to group health plans 

(and not merely to group health insurance coverage) shall 

not apply to such governmental plans for such period except as provided in this paragraph. 

* * * * * * * 

(D) ELECTION NOT APPLICABLE TO REQUIREMENTS CON- CERNING GENETIC INFORMATION.—The election described in 

subparagraph (A) shall not be available with respect to the 

provisions of subsections (a)(1)(F) and (c) of section 2702 

and the provisions of section 2702(b) to the extent that such 

provisions apply to genetic information (or information 

about a request for or the receipt of genetic services by an 

individual or a family member of such individual). 

* * * * * * * 

SEC. 2722. ENFORCEMENT. 

(a) STATE ENFORCEMENT.—

(1) STATE AUTHORITY.—* * * 

* * * * * * * 

(b) SECRETARIAL ENFORCEMENT AUTHORITY.— (1) LIMITATION.—* * * 

* * * * * * * 

(2) * * * 

* * * * * * * 

(3) ENFORCEMENT AUTHORITY RELATING TO GENETIC DISCRIMINATION.—

(A) GENERAL RULE.—In the cases described in paragraph 

(1), notwithstanding the provisions of paragraph (2)(C), the 

following provisions shall apply with respect to an action 

under this subsection by the Secretary with respect to any 

failure of a health insurance issuer in connection with a 

group health plan, to meet the requirements of subsection 

(a)(1)(F), (b)(3), or (c) of section 2702. 

(B) AMOUNT.—

(i) IN GENERAL.—The amount of the penalty imposed 

under this paragraph shall be $100 for each day in the 

noncompliance period with respect to each individual 

to whom such failure relates. 

(ii) NONCOMPLIANCE PERIOD.—For purposes of this 

paragraph, the term ‘‘noncompliance period’’ means, 

with respect to any failure, the period—


bajohnson on PRODPC74 with HEARING
53 

(I) beginning on the date such failure first occurs; and 

(II) ending on the date such failure is corrected. 

(C) MINIMUM PENALTIES WHERE FAILURE DISCOVERED.—

Notwithstanding clauses (i) and (ii) of subparagraph (D): 

(i) IN GENERAL.—In the case of 1 or more failures 

with respect to an individual—

(I) which are not corrected before the date on 

which the plan receives a notice from the Secretary 

of such violation; and 

(II) which occurred or continued during the period involved; 

the amount of penalty imposed by subparagraph (A) by 

reason of such failures with respect to such individual 

shall not be less than $2,500. 

(ii) HIGHER MINIMUM PENALTY WHERE VIOLATIONS

ARE MORE THAN DE MINIMIS.—To the extent violations 

for which any person is liable under this paragraph for 

any year are more than de minimis, clause (i) shall be 

applied by substituting ‘‘$15,000’’ for ‘‘$2,500’’ with respect to such person. 

(D) LIMITATIONS.—

(i) PENALTY NOT TO APPLY WHERE FAILURE NOT DISCOVERED EXERCISING REASONABLE DILIGENCE.—No 

penalty shall be imposed by subparagraph (A) on any 

failure during any period for which it is established to 

the satisfaction of the Secretary that the person otherwise liable for such penalty did not know, and exercising reasonable diligence would not have known, that 

such failure existed. 

(ii) PENALTY NOT TO APPLY TO FAILURES CORRECTED

WITHIN CERTAIN PERIODS.—No penalty shall be imposed by subparagraph (A) on any failure if—

(I) such failure was due to reasonable cause and 

not to willful neglect; and 

(II) such failure is corrected during the 30-day 

period beginning on the first date the person otherwise liable for such penalty knew, or exercising 

reasonable diligence would have known, that such 

failure existed. 

(iii) OVERALL LIMITATION FOR UNINTENTIONAL FAILURES.—In the case of failures which are due to reasonable cause and not to willful neglect, the penalty imposed by subparagraph (A) for failures shall not exceed 

the amount equal to the lesser of—

(I) 10 percent of the aggregate amount paid or 

incurred by the employer (or predecessor employer) 

during the preceding taxable year for group health 

plans; or 

(II) $500,000. 

(E) WAIVER BY SECRETARY.—In the case of a failure 

which is due to reasonable cause and not to willful neglect, 

the Secretary may waive part or all of the penalty imposed 


bajohnson on PRODPC74 with HEARING
54 

by subparagraph (A) to the extent that the payment of such 

penalty would be excessive relative to the failure involved. 

* * * * * * * 

Subpart 3—General Provisions 

SEC. 2761. ENFORCEMENT. 

(a) STATE ENFORCEMENT.—

(1) STATE AUTHORITY.—

* * * * * * * 

ø(b) SECRETARIAL ENFORCEMENT AUTHORITY.—The Secretary 

shall have the same authority in relation to enforcement of the provisions of this part with respect to issuers of health insurance coverage in the individual market in a State as the Secretary has 

under section 2722(b)(2) in relation to the enforcement of the provisions of part A with respect to issuers of health insurance coverage 

in the small group market in the State.¿. 

(b) SECRETARIAL ENFORCEMENT AUTHORITY.—The Secretary shall 

have the same authority in relation to enforcement of the provisions 

of this part with respect to issuers of health insurance coverage in 

the individual market in a State as the Secretary has under section 

2722(b)(2), and section 2722(b)(3) with respect to violations of genetic nondiscrimination provisions, in relation to the enforcement of 

the provisions of part A with respect to issuers of health insurance 

coverage in the small group market in the State. 

* * * * * * * 

SEC. 2791. DEFINITIONS. 

(a) GROUP HEALTH PLAN.—

(1) DEFINITIONS.—* * * 

* * * * * * * 

(d) OTHER DEFINITIONS.— (1) APPLICABLE STATE AUTHORITY.—* * * 

* * * * * * * 

(14) * * * 

(15) FAMILY MEMBER.—The term ‘‘family member’’ means 

with respect to an individual—

(A) the spouse of the individual; 

(B) a dependent child of the individual, including a child 

who is born to or placed for adoption with the individual; 

and 

(C) all other individuals related by blood to the individual or the spouse or child described in subparagraph (A) 

or (B). 

(16) GENETIC INFORMATION.—

(A) IN GENERAL.—Except as provided in subparagraph 

(B), the term ‘‘genetic information’’ means information 

about—

(i) an individual’s genetic tests; 

(ii) the genetic tests of family members of the individual; or 

(iii) the occurrence of a disease or disorder in family 

members of the individual. 


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(B) EXCLUSIONS.—The term ‘‘genetic information’’ shall 

not include information about the sex or age of an individual. 

(17) GENETIC TEST.— (A) IN GENERAL.—The term ‘‘genetic test’’ means an analysis of human DNA, RNA, chromosomes, proteins, or metabolites, that detects genotypes, mutations, or chromosomal changes. 

(B) EXCEPTIONS.—The term ‘‘genetic test’’ does not 

mean—

(i) an analysis of proteins or metabolites that does 

not detect genotypes, mutations, or chromosomal 

changes; or 

(ii) an analysis of proteins or metabolites that is directly related to a manifested disease, disorder, or 

pathological condition that could reasonably be detected by a health care professional with appropriate 

training and expertise in the field of medicine involved. 

(18) GENETIC SERVICES.—The term ‘‘genetic services’’ means— (A) a genetic test; 

(B) genetic counseling (such as obtaining, interpreting, or 

assessing genetic information); or 

(C) genetic education. 

* * * * * * * 

TITLE XXVII—REQUIREMENTS RELATING TO HEALTH 

INSURANCE COVERAGE 

PART A—GROUP MARKET REFORMS

SUBPART 1—PORTABILITY, ACCESS, AND RENEWABILITY

REQUIREMENTS

* * * * * * * 

PART B—INDIVIDUAL MARKET RULES

SUBPART 1—PORTABILITY, ACCESS, AND RENEWABILITY

REQUIREMENTS

* * * * * * * 

SUBPART ø3¿ 2—Other Requirements 

SEC. 2751. STANDARDS RELATING TO BENEFITS FOR MOTHERS AND 

NEWBORNS. 

(a) IN GENERAL.—* * * 

* * * * * * * 

SEC. 2752. REQUIRED COVERAGE FOR RECONSTRUCTIVE SURGERY 

FOLLOWING MASTECTOMIES. 

* * * * * * * 

SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON THE BASIS 

OF GENETIC INFORMATION. 

(a) PROHIBITION ON GENETIC INFORMATION AS A CONDITION OF

ELIGIBILITY.—A health insurance issuer offering health insurance 

coverage in the individual market may not establish rules for the 


bajohnson on PRODPC74 with HEARING
56 

eligibility (including continued eligibility) of any individual to enroll in individual health insurance coverage based on genetic information (including information about a request for or receipt of genetic services by an individual or family member of such individual). 

(b) PROHIBITION ON GENETIC INFORMATION IN SETTING PREMIUM

RATES.—A health insurance issuer offering health insurance coverage in the individual market shall not adjust premium or contribution amounts for an individual on the basis of genetic information concerning the individual or a family member of the individual 

(including information about a request for or receipt of genetic services by an individual or family member of such individual). 

(c) GENETIC TESTING.—

(1) LIMITATION ON REQUESTING OR REQUIRING GENETIC TESTING.—A health insurance issuer offering health insurance coverage in the individual market shall not request or require an 

individual or a family member of such individual to undergo 

a genetic test. 

(2) RULE OF CONSTRUCTION.—Nothing in this part shall be 

construed to—

(A) limit the authority of a health care professional who 

is providing health care services with respect to an individual to request that such individual or a family member 

of such individual undergo a genetic test; 

(B) limit the authority of a health care professional who 

is employed by or affiliated with a health insurance issuer 

and who is providing health care services to an individual 

as part of a bona fide wellness program to notify such individual of the availability of a genetic test or to provide information to such individual regarding such genetic test; or 

(C) authorize or permit a health care professional to require that an individual undergo a genetic test. 

* * * * * * * 

SOCIAL SECURITY ACT 

* * * * * * * 

Sec. 1882. 

(a)(1) * * * 

* * * * * * * 

(o) The requirements of this subsection are as follows: 

(1) * * * 

* * * * * * * 

(4) The issuer of the medicare supplemental policy complies with 

subsection (s)(2)(E) and subsection (x). 

* * * * * * * 

(s)(1) * * * 

* * * * * * * 

(2)(A) * * * 

* * * * * * * 

(E)(i) An issuer of a medicare supplemental policy shall not deny 

or condition the issuance or effectiveness of the policy, and shall not 


bajohnson on PRODPC74 with HEARING
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discriminate in the pricing of the policy (including the adjustment 

of premium rates) of an eligible individual on the basis of genetic 

information concerning the individual (or information about a request for, or the receipt of, genetic services by such individual or 

family member of such individual). 

(ii) For purposes of clause (i), the terms ‘‘family member’’, ‘‘genetic 

services’’, and ‘‘genetic information’’ shall have the meanings given 

such terms in subsection (x). 

* * * * * * * 

(w) 625 DEVELOPMENT OF NEW STANDARDS FOR MEDICARE SUPPLEMENTAL POLICIES.—

(1) IN GENERAL.—

* * * * * * * 

(x) LIMITATIONS ON GENETIC TESTING.—

(1) GENETIC TESTING.—

(A) LIMITATION ON REQUESTING OR REQUIRING GENETIC

TESTING.—An issuer of a medicare supplemental policy 

shall not request or require an individual or a family member of such individual to undergo a genetic test. 

(B) RULE OF CONSTRUCTION.—Nothing in this title shall 

be construed to—

(i) limit the authority of a health care professional 

who is providing health care services with respect to an 

individual to request that such individual or a family 

member of such individual undergo a genetic test; 

(ii) limit the authority of a health care professional 

who is employed by or affiliated with an issuer of a 

medicare supplemental policy and who is providing 

health care services to an individual as part of a bona 

fide wellness program to notify such individual of the 

availability of a genetic test or to provide information 

to such individual regarding such genetic test; or 

(iii) authorize or permit a health care professional to 

require that an individual undergo a genetic test. 

(2) DEFINITIONS.—In this subsection: 

(A) FAMILY MEMBER.—The term ‘‘family member’’ means 

with respect to an individual—

(i) the spouse of the individual; 

(ii) a dependent child of the individual, including a 

child who is born to or placed for adoption with the individual; or 

(iii) any other individuals related by blood to the individual or to the spouse or child described in clause 

(i) or (ii). 

(B) GENETIC INFORMATION.—

(i) IN GENERAL.—Except as provided in clause (ii), 

the term ‘‘genetic information’’ means information 

about—

(I) an individual’s genetic tests; 

(II) the genetic tests of family members of the individual; or 

(III) the occurrence of a disease or disorder in 

family members of the individual. 


bajohnson on PRODPC74 with HEARING
58 

(ii) EXCLUSIONS.—The term ‘‘genetic information’’ shall not include information about the sex or age of 

an individual. 

(C) GENETIC TEST.— (i) IN GENERAL.—The term ‘‘genetic test’’ means an 

analysis of human DNA, RNA, chromosomes, proteins, 

or metabolites, that detects genotypes, mutations, or 

chromosomal changes. 

(ii) EXCEPTIONS.—The term ‘‘genetic test’’ does not 

mean—

(I) an analysis of proteins or metabolites that 

does not detect genotypes, mutations, or chromosomal changes; or 

(II) an analysis of proteins or metabolites that is 

directly related to a manifested disease, disorder, 

or pathological condition that could reasonably be 

detected by a health care professional with appropriate training and expertise in the field of medicine involved. 

(D) GENETIC SERVICES.—The term ‘‘genetic services’’

means—

(i) a genetic test; 

(ii) genetic counseling (such as obtaining, interpreting, or assessing genetic information); or 

(iii) genetic education. 

(E) ISSUER OF A MEDICARE SUPPLEMENTAL POLICY.—The 

term ‘‘issuer of a medicare supplemental policy’’ includes a 

third-party administrator or other person acting for or on 

behalf of such issuer. 

* * * * * * * 

Æ 


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