Genetic Tests and Health Insurance:

Results of a Survey

October 1992

OTA-BP-H-98

NTIS order #PB93-101756
Recommended Citation:

U.S. Congress, Office of Technology Assessment, Genetic Tests and Health Insurance:

Results of a Survey-Background Paper, OTA-BP-BA-98 (Washington, DC: U.S. Government Printing Office, October 1992).
Foreword

As we increase our knowledge of human genetic diseases and improve our ability to

diagnose and predict them, concern about denial or restriction of health care insurance is often

raised. Yet little is known about either health insurers’ attitudes toward reimbursement for

genetic tests or policies for using test results in underwriting. To assess these views and

practices, OTA surveyed commercial insurers, Blue Cross and Blue Shield plans, and health

maintenance organizations that offer individual or medically underwritten group policies.

OTA undertook the survey in support of its assessment Cystic Fibrosis and DNA Tests:

Implications of Carrier Screening, which was published in August 1992. That report—

requested by the House Committee on Science, Space, and Technology, the House Committee

on Energy and Commerce, and Representative David R. Obey—focuses on survey results

specific to cystic fibrosis carrier screening. This background paper summarizes information

about cystic-fibrosis and presents additional results that pertain to the broader topic of health

insurers’ practices and attitudes toward genetic information and genetic tests for diseases other

than cystic fibrosis. It presents survey findings related to:

. how health insurers view information from various sources+. g., genetic tests, other

medical tests, or family histories-in underwriting decisions;

. current and future policies toward reimbursing consumers for the costs of genetic tests;

and

. expectations about the impact and use of genetic

health insurance.

OTA was assisted in preparing the survey instrument

tests and genetic information on

and background paper by a panel

of advisors, contractors, workshop participants, and reviewers selected for their expertise and

diverse points of view. We gratefully acknowledge the contribution of each of these

individuals. OTA, however, remains solely responsible for the contents of this background

paper.

Ill
Cystic Fibrosis and DNA Tests: Implications of Carrier Screening

Advisory Panel

Jessica G. Davis, Panel Chair

Co-Director, Division of Human Genetics

New York Hospital

Cornell University Medical College

New York, NY

Arthur L. Beaudet

Professor

Howard Hughes Medical Institute

Baylor College of Medicine

Houston, TX

Debra L. Collins

Genetic Counselor

University of Kansas Medical Center

Kansas City, KS

Beth A. Fine

Genetic Counselor/Clinical Instructor

Northwestern University Medical School

Chicago, IL

Lym D. Fleisher

Attorney

Sidley & Austin

Chicago, IL

Arthur Lifson

Vice President

CIGNA Companies

Hartford, CT

Robert F. Murray, Jr.

Professor

Department of Pediatrics and Child Health

Howard University School of Medicine

Washington, DC

Mark V. Pauly

Executive Director

Leonard Davis Institute of Healh Economics

University of Pennsylvania

Philadelphia, PA

Susan Poling

Parent

Silver Spring, MD

Clark C. Havighurst Thomas K. Reed, Jr.

William Neal Reynolds Professor of Law chairman

Duke University School of Law Vivigen, Inc.

Durham, NC Santa Fe, NM

John Z. Jacoby, III

Clinical Assistant

The Cystic Fibrosis Center

St. Vincent’s Hospital and Medical Center

New York, NY

Angkle Khachadour

General Counsel

Hastings College of the Law

San Francisco, CA

Katherine W. Klinger

Vice President, Science

Integrated Genetics

Framingham, MA

Philip R. Reilly

President

Shriver Center for Mental Retardation, Inc.

Waltham, MA

Joseph D. Schulman

Director

Genetics & IVF Institute

Fairfax, VA

NOTE: OTA is grateful for the valuable assistance and thoughtful critiques provided by the advisory panel members. The panel does

not, however, necessarily approve, disapprove, or endorse this report. OTA assumes full responsibility for the report and the

accuracy of its contents.

iv
Genetic Tests and Health Insurance—Results of a Survey

OTA Project Staff

Roger C. Herdrman, Assistant Director, OTA Health and Life Sciences Division

Michael Gough, Biological Applications Program Manager

Robyn Y. Nishimi, Project Director

Margaret A. Anderson, Analystl and Contractor

Ellen L. Goode, Research Analyst

Kathi E. Hanna, Senior Analyst

Sheryl M. Winston, Research Analyst

Administrative Staff

C6cile Parker, Office Administrator

Linda Rayford-Joumiette, PC Specialist

Jene kwis, Administrative Secretary

Contractors

Gary B. Ellis, Editor, Silver Spring, MD

John M. Boyle, Schulrnan, Ronca & Bucuvalas, Inc., Silver Spfig, MD

1 Through December 1991
Contents

Page

Chapter 1. Introduction *.. ... . ... e.. o.. ... ... ... ... ... ... ... o .. o o e o o o e o o o. 1

HEALTH INSURANCE AND GENETICS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

SCOPE AND ORGANIZATION OF THIS BACKGROUND PAPER . . . . . . . . . . . . . . . . . . . 2

CHAPTER 1 REFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

Chapter 2. Profile of Respondents ..0.0,.0 ..0...0,. . . . . . . . . . . . . . . . . . . . . . . . . . . . .00....0. ● 3

RESPONDENT PROFILE . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Commercial Health Insurers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Blue Cross and Blue Shield Plans . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Health Maintenance Organizations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

TREAMENT OF APPLICATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Commercial Health Insurers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Blue Cross and Blue Shield Plans . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Health Maintenance Organizations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

CHAPTER PREFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Chapter 3. Underwriting Practices . . . . . . . . . ● **.*.*... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

UNDERWRITING PRACTICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

FACTORS UNINSURABILITY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Information on Specific Conditions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Inquiries About Genetic Conditions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

Effect of Genetic Test Results uninsurability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Effect of Genetic Information uninsurability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

CHAPTER PREFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

Chapter 4. Coverage and Reimbursement . . . . . . . . . . . . . . . . . . . . . . . . . ● .0..0.0. . 25

REIMBURSEMENT FOR GENETIC TESTS AND SERVICES . . . . . . . . . . . . . . . . . . . . . . . . 25

COVERAGE FOR CYSTIC FIBROSIS CARRIER TESTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

ECONOMIC ANALYSIS OF GENETIC TESTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27

PERSPECTIVES ON FUTURE REIMBURSEMENT FOR GENETICTESTS . . . . . . . . . . . 28

CHAPTER PREFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29

Chapter 5. General Attitudes Toward Genetic Tests and Information . . . . . . . . . . . . . . . . . . 31

IMPACT OF GENETIC TESTS ON BUSINESS PRACTICES . . . . . . . . . . . . . . . . . . . . . . . . . . 31

ATTITUDES TOWARD GENETIC INFORMATION.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

USE OF GENETIC TESTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33

CHAPTER 5 REFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34

Appendix A. Survey Method ...*,.** ● .*...*.. ..,....0, . . . . . . . . . . . . . . . . . . . . . . . 

. . 

. . ● OO.*O 37

Appendix B. Qualitative Comments From the Survey .00.0... ● .0..0,0. ● ..0..... . . . . . . . . 39

Appendix C. Survey Instruments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ● ..00... ● 0..0.00 ..0.0.. 41

Appendix D. Acknowledgements ● .0...0. ● .0.....0 . . . . . . . . . . . . . . . . . . . . . . . . . . . ● .0...... ● . . 76

Appendix E. Acronyms and Glossary . . . . . . . . . .*,.,..**. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77

Tables

Table Page

2-l. Respondent Profile:Companies That Offer Individual or Medically Underwritten

Group Coverage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

2-2. Number of Applications Received by OTA Survey Respondents . . . . . . . . . . . . . . . . . . . . . . 4

2-3. Number of People Insured by OTA Survey Respondents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

3-1. Factors in Determining lnsurability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

3-2. Treatment of Applicants with Specific Conditions: Commercials and HMOs . . . . . . . . . . . 14

3-3. Treatment of Applicants with Specific Conditions: BC/BS plans . . . . . . . . . . . . . . . . . . . . . . 15

vi
3-4.

3-5.

3-6.

3-7.

3-8.

3-9.

Page

Inquiries About Genetic Conditions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

Effect of Genetic Test Results on Insurability: Commercials and HMOs . . . . . . . . . . . . . . . 17

Effect of Genetic Test Results uninsurability: BC/BS plans . . . . . . . . . . . . . . . . . . . . . . . . . . 18

Effect of Genetic Test Informationon Insurability: Commercials and FIMOs . . . . . . . . . . . 20

Effect of Genetic Information uninsurability: BC/BSpkms. . . . . . . . . . . . . . . . . . . . . . . . . . 21

Coverage of a Family Member with Family History of Disease: Commercials

and HMOs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

3-10. Coverage of a Family Member with a Family History of Disease: BC/BS plans . . . . . . . . 23

4-1. Reimbursement for Genetic Tests and Genetic Counseling . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

4-2. Coverage for Cystic Fibrois Carrier Tests . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28

4-3. Economic Analyses of Genetic Tests and Genetic Counseling by Insurers . . . . . . . . . . . . . . 28

4-4. Projected Reimbursement Practices by Insurers in 5 and 10 Years . . . . . . . . . . . . . . . . . . . . . 29

5-1. Impact of Genetic Tests on Insurers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

5-2. Genetic Information as Medical Information on Preexisting Conditions . . . . . . . . . . . . . . . . 32

5-3. General Attitudes of Insurers Toward Genetic Information and Genetic Tests. . . . . . . . . . . 32

5-4. Projected Use of Genetic Tests by Insurers in 5 and IO Years . . . . . . . . . . . . . . . . . . . . . . . . . 34

5-5. Projected Use of Genetic Information by Insurers in 5 and IO Years . . . . . . . . . . . . . . . . . . . 35
Chapter 1

Introduction

Health insurance in the United States is not

monolithic. U.S. health care financing, which totaled more than $800 billion in 1991, is a mixture of

public and private finds. For the majority of

Americans, however, access to health care-and the

health insurance that makes such access possibleis provided through the private sector. Privately

financed health insurance for medical expenses

covers more than 189 million persons through

self-funded companies, commercial insurance companies, Blue Cross and Blue Shield (BC/BS) plans,

and managed care programs (e.g., health maintenance organizations (HMOS) and preferred provider

organizations) (l). Among these entities, business

practices vary widely within and among the categories, and each is subject to different State or Federal

regulations (2).

The majority of Americans obtain health insurance through employment-either directly as employees or as family members of the employed. Most

people covered in this manner obtain health insurance as members of large groups, with no diagnostic

tests or physical examinations required for entry

(i.e., no medical underwriting). Some individuals,

however, obtain health insurance through small

groups, which require some diagnostic tests or

physical examinations, on which the insurance

contract’s coverage and costs are based. Finally,

persons without group coverage can seek individual

health insurance from commercial insurers, BC/BS

plans, or HMOS.

Organizations that medically underwrite individual or group policies classify risks on actuarial data.

Currently, about 10 to 15 percent of individuals with

health care coverage are medically underwritten.

This selection process—i.e., differentiation based on

medical characteristics-is an integral part of the

insurance mechanism. Risk classification is the

foundation, in fact, for the concept of private

insurance.

In the coming years, an increasing number of

underwriting decisions and reimbursement policies

will revolve around the tests, information, and

services arising from the Human Genome Project.

The number of DNA-based tests for genetic disorders and predispositions will almost certainly expand by an order of magnitude in the next decade.

How insurers view such tests will affect their

utilization. This background paper describes results

from a 1991 OTA survey of U.S. health insurers’

attitudes toward genetic tests and genetic information—both how they currently view information

from various sources (e.g., genetic tests, other

medical tests, or family histories) in underwriting

decisions and how they might reimburse consumers

for genetic tests. It also reports data on the role health

insurers expect genetic tests and genetic information

will play in their business practices over the coming

decade.

HEALTH INSURANCE AND

GENETICS

Perhaps the most widely raised social question

stemming from the Human Genome Project is what

effect genetic tests have (and will have) on health

care access in the United States. Consumers fear

exclusion from health care coverage due to genetic,

or other, factors. Because health care access involves

private health insurance for most citizens, concern

focuses on this market.

Some commentators speculate that, overall, genetic analyses will mean fewer people will have

access to private health insurance because such tests

identify or refine risks. They argue genetic tests, in

precluding more and more people from health

insurance, will provide the best reason yet for a

nationalized health care system. Others contend,

however, that genetic assays could rule out an

individual’s risk for a disorder and hence increase

access to health care coverage. That is, making use

of genetic information would allow insurers to better

assess risks, with the result that individuals at

elevated risk will pay more (or be denied access), but

people with low risk will pay less. Still others point

out that as the number of identified genes increases,

so will the number of people who will be identified

as at risk, which could spread risk. The ultimate

impact of genetic tests, then, will depend, in part, on

the practices and attitudes of insurers toward tests

for genetic disorders, as well as the morbidity and

mortality associated with particular conditions (2).

–l–
2 ● Genetic Tests and Health Isurance: Results of a Survey

SCOPE AND ORGANIZATION OF

THIS BACKGROUND PAPER

For its assessment, Cystic Fibrosis and DNA

Tests: Implications of Carrier Screening (2), OTA

found a paucity of information about health insurers’

current attitudes and policies toward genetic tests or

any future role such tests might play in their business

practices. To gain some understanding about these

issues, OTA surveyed commercial insurers, BC/BS

plans, and selected HMOS that offered individual or

medically underwritten group policies in June 1991.

This survey did not extend to large group contracts

or to the practices and attitudes of self-funded

companies, which cover the largest percentage of

individuals who have private health care benefits.

Results from OTA’s survey of health insurers

apply to a small slice of the insured population-the

12.7 million people who have individual or medically underwritten group coverage provided through

survey respondents. Further, most of the information

presented in the following chapters should not be

construed to represent either the numbers or percentages of commercial entities, BC/BS plans, or HMOS

that have dealt with the issues presented. Respondents were asked how they would treat certain

conditions or scenarios presented (currently or in the

future, depending on the questions), not whether

they, in fact, had made such decisions.1

This background paper reports the complete

results from OTA’s survey of health insurers, but

does not analyze them in a public policy context.

That analysis is presented in the aforementioned

report for which this survey was undertaken (2).

Chapter 2 of the background paper describes general

characteristics of the respondents and the populations they serve. Following this, data related to

genetic tests, genetic information, and underwriting

are discussed in chapter 3. Chapter 4 presents data

about health insurers’ policies toward reimbursing

consumers for various genetic tests and services, and

chapter 5 examines insurers’ overall attitudes toward

current and future use of genetic tests and information. Appendix A details the survey method, including population selection, and appendix B presents

verbatim comments made by respondents in space

provided for open ended statements. Survey instruments are reproduced in appendix C.

1.

2.

CHAPTER 1 REFERENCES

Health Insurance Association of America, Source

Book of Health Insurance Data 1991 (Washington,

DC: Health Insurance Association of America, 1991).

U.S. Congress, Office of Technology Assessment,

Cystic Fibrosis and DNA Tests: Implications of

Carrier Screening, OTA-BA-532 (Washington, DC:

U.S. Government Printing Office, August 1992).
Chapter 2

Profile of Respondents

In 1991, OTA conducted a survey of commercial

health insurers, Blue Cross and Blue Shield (BC/BS)

plans, and health maintenance organizations (HMOS)

as part of its report, Cystic Fibrosis and DNA Tests:

Implications of Carrier Screening (4). The survey

collected information on insurers underwriting

practices and use of medical screening for individual

and medically underwritten group policies. Additionally, it sought information about how insurers

view and use genetic information and genetic tests,

especially DNA-based tests for cystic fibrosis (CF)

mutations. A 1986 OTA survey targeted a similar

population, but the data collected for that survey

focused on general medical testing (especially for

the human immunodeficiency virus (HIV)), and did

not examine genetic tests and genetic information

(3).

RESPONDENT PROFILE

General industry profile questions asked by OTA

included the number of people respondents insure in

their plans, the number of applications received, and

how those applications were rated. This chapter

presents such data for each of the three populations

OTA surveyed.1 Appendix A describes how the

population samples were derived.

Commercial Health Insurers

In the United States, approximately 1,250 forprofit companies are in the business of writing major

medical expense policies (2), but increasingly few

health insurers write policies for individuals or

medically underwritten groups (4). Of 225 commercial health insurers initially mailed a survey, 81

insurance companies responded that they offered

neither individual nor medically underwritten group

policies. Of the 51 responding companies that did

offer such policies, 29 companies offered individual

coverage, 37 respondents offered medically underwritten group policies, and 15 companies offered

both (table 2-l). Thirty-eight companies also wrote

disability insurance, and 42 wrote life insurance.

None of the companies included Medigap policies or

statistics in their responses. (Medigap policies are

designed to supplement Medicare coverage for the

elderly.)

As an aggregate population, responding companies reported receiving a total of 940,745 applications for individual health insurance in 1990. The

annual volume of applications ranged from 50 to

368,350 applications per company (table 2-2). Four

companies alone accounted for 564,475 applications, or more than half the annual volume of the

entire survey population. Responding companies

reported receiving 625,134 applications for medically underwritten group coverage, with a range of

100 to 100,000 applications. Responding companies

reported insuring a total of 2 million people under

individual policies, and 2.3 million under medically

underwritten group policies (table 2-3).

Companies also were asked to indicate the distribution of persons they covered under self-funded

administrative policies, individual policies, medically underwritten groups, and large groups. All

respondents had business encompassing these practices, but the proportions among companies varied

widely.

The client mix within any single responding

commercial insurer varied. People covered under

self-funded administrative policies comprised between 1 and 70 percent of clients covered by

commercial respondents, with an average of 25

percent. Two to 1OO percent of persons were covered

through individual policies, with an average of 50

percent. The percentage of persons who were

covered under medically underwritten group policies of commercial insurers ranged from 1 to 100

percent and averaged 62 percent. Finally, commercial insurers responding to the OTA survey covered

6 to 96 percent of people under large group policies,

with an average of 44 percent.

Blue Cross and Blue Shield Plans

Surveys were sent to both the medical director and

the chief underwriter for 72 of the 73 BC/BS plans.

(Puerto Rico’s plan was excluded,) BC/BS plans

often operate under considerably different condi1 For chapters 2 through 5, the numbers in the text might not total 100 percent or sum to the actual number of responses for a particular survey

population because “no response‘‘ is not included in the discussion, but is presented in the table.

-3-
4 ● IGenetic Tests and Health Insurance: Results of a Survey

Table 2-l—Respondent Profile: Companies That Offer Individual or Medically Underwritten Group Coverage

BC/BS plansunderwriters/

Commercial insurers medical directors HMOS

(n= 51) (n= 29/18) (n= 23)

Individual policies . . . . . . . . . . . . . . . . . . . . . . 29 companies 25/18 plans 11 HMOS

Medically underwritten group policies . . . . . . 37 commpanies 21/15 plans 20 HMOS

Nongroup/open enrollment . . . . . . . . . . . . . . . NA 8/7 plans NA

NA - Not applicable.

SOURCE: Office of Technology Assessment, 1992.

Table 2-2—Number of Applications Received by OTA Survey Respondents

BC/BS plansunderwriters/

Commercial insurers medical directors HMOS

Individual policies . . . . . . . . . . . . . . . . . . . . . . 940,745 261,1 86/303,692 69,554

(range: 50 to 368,350) (range: 512 to 47,380)/ (range: 24 to 43,000)

(range: 9 to 120,000)

Medically underwritten group policies . . . . . . 625,134 103,726/1 01,391 414,977

(range: 100 to 100,000) (range: 1,200 to 19,000)/ (range: 150 to 350,000)

(range: O to 34,000)

Nongroup/open enrollment . . . . . . . . . . . . . . . NA 29,360/1 3,768 NA

(range: 60 to 25,000)/

(range: O to 6,168)

NA = Not applicable.

SOURCE: Office of Technology Assessment, 1992.

tions from commercial carriers. Some plans hold

open enrollment periods, all are regionally based,

and many enjoy significant shares of their local

health insurance market. These factors play a pivotal

role in underwriting policies. Twenty-nine chief

underwriters completed a survey and 18 medical

directors returned surveys. Some overlap exists

between the two populations, so the reported data are

not additive, but are treated as two populations.2 In

addition to inquiring about medically underwritten

groups and individuals, the BC/BS survey instrument asked how the questions applied to a third

category: nongroup open enrollment policies.3

Of the 29 BC/BS plans represented by the

underwriter survey, 25 of 29 write individual policies and 21 of 29 offer medically underwritten group

policies. Eight of 29 BC/BS surveys returned by

chief underwriters represented plans that offer open

enrollment; each of these eight offers continuous,

year-round open enrollment (table 2-l).

All 18 BC/BS plans represented by the medical

director survey write individual policies, and 15

plans also offer medically underwritten group policies. Seven represented plans that offer continuous,

year-round open enrollment. Twelve States require

BC/BS plans to offer an open enrollment period—

i.e., all applicants must be accepted for coverage

regardless of their health status and with no medical

underwriting. Three BC/BS plans represented by the

underwriter survey also provide disability insurance

and six wrote life insurance; 1 plan represented by

the medical director survey also provides disability

insurance and 1 wrote life insurance.

The responding BC/BS plans represented by the

underwriter survey received 261,186 applications

for individual health insurance in 1990, with a range

of512 to 47,380 applications. The medical director

sample revealed that 303,692 individual insurance

applications were received by these respondents,

with a range of 9 to 120,000. BC/BS underwriters
Chapter 2--Profile of Respondents ● 5

Table 2-3-Number of People Insured by OTA Survey Respondents

BC/BS plansunderwriters/

Commercial insurers medical directors HMOS

Individual policies . . . . . . . . . . . . . . . . . . . . . . 2.0 million 1.7 million/1.4 million 306,861

(range: 171 to 240,000) (range: 1,500 to 690,559)/ (range: 350 to 258,945)

(range: O to 324,800)

Medically underwritten group policies. . . . . . 2.3 million 2.4 million/671 ,385 4.2 million

(range: 1,000 to 382,000) (range: l,039 to 1,592,000)/ (range: 1,501 to 2 million)

(range: O to 205,144)

Nongroup/open enrollment . . . . . . . . . . . . . . . NA 645,164/1 34,878 NA

(range: 550 to 51 2,477)/

(range: 675 to 43,589)

NA - Not applicable.

SOURCE: Office of Technology Assessment, 1992.

reported their plans received a total of 103,726

individual applications, with a range of 1,200 to

19,000 applications; medical directors reported receiving 101,391 medically underwritten group applications, with a range of O to 34,000. Finally, a

total of 29,360 applications were received by underwriters during open enrollment, with a range of 60 to

25,000 applications received. Medical directors

reported they received 13,768 applications during

open enrollment, with a range of O to 6,168.

Underwriters for BC/BS plans responding to the

OTA survey reported that their plans insure 1,736,270

people through individual policies, 2,394,703 in

medically underwritten groups, and 645,164 under

open enrollment contracts. Medical directors at

BC/BS plans responding to the OTA survey said

their plans insure 1,383,166 through individual

policies, 671,385 in medically underwritten groups,

and 134,878 under open enrollment contracts.

Based on the survey responses of chief underwriters, the fraction of persons covered through selffunded policies ranged from 1 to 62 percent, with an

average of 23 percent. One to 49 percent of BC/BS

clients were covered by individual policies, with an

average of 14 percent. The percentage of persons

covered under medically underwritten group policies ranged from 4 to 73 percent, and averaged 20

percent. Finally, underwriters from BC/BS plans

responding to the OTA survey covered 19 to 82

percent of people under large group policies, with an

average of 44 percent.

For BC/BS medical directors who responded to

the OTA survey, a range of O to 66 percent of clients

were covered under self-funded policies, with an

average of 24 percent. One to 49 percent of persons

were covered under individual policies, with an

average of 15 percent. Coverage under medically

underwritten group policies for this survey population ranged from 4 to 60 percent, with an average of

14 percent. Clients covered under large group

policies also varied widely, ranging from 10 to 73

percent, with an average of 46 percent.

Health Maintenance Organizations

As of December 1990, there were 569 HMOS in

the United States. OTA sent surveys to the 50 largest

HMOS, as well as a sample of 28 plans that were the

largest HMOS within a State or the largest by HMO

model type. (Four HMO types exist: the staff plan,

group plan, network plan, and the individual practice

association plan.) Forty-three surveys were returned,

of which 20 neither offered individual policies nor

medically underwrite groups. Of the 23 HMOS

responding that do offer such coverage, 11 HMOS

accept individuals and 20 medically underwrite

groups (table 2-l). Eighteen of the 23 HMOS

responding are federally qualified plans. Of the 23

respondents, 1 wrote disability policies, and 4 wrote

life insurance.

As a group, responding HMOS received 69,554

applications for individual coverage in 1990, with a

range of 24 to 43,000; 414,977 applications were

received for medically underwritten group coverage,

with a range of 150 to 350,000. Survey respondents

covered a total of 306,861 individual members, with

membership ranging from 350 to 258,945. Those

HMOS that offer medically underwritten group

policies cover about 4.2 million people under such

policies, with a range of 1,501 to 2 million people.
6 ● Genetic Tests and Health Isurance: Results of a survey

The percentage of persons within each HMO

covered under self-funded policies ranged from O to

61 percent, with an average of about 4 percent (20 of

the responding 43 HMOS had no self-funded policies). Zero to 34 percent of persons were covered

through individual policies, with an average of 3

percent (11 HMOS had no individual policies). The

percentage of persons covered under medically

underwritten group policies ranged from O to 100

percent, and averaged 68 percent. Finally, HMOS

responding to the OTA survey covered O to 99

percent of their clients under large group policies,

with an average of 25 percent.

TREATMENT OF APPLICATIONS

The outcome of underwriting is risk classification, the final evaluation of whether the applicant for

insurance will be covered on a standard or substandard basis, or not at all. Not all insurers view specific

conditions the same. A medical condition or impairment that makes an applicant uninsurable to one

insurer could be excluded from coverage by another,

be included in a policy at a rated (higher-priced)

premium, or be ignored altogether. This section

describes data related to the treatment of applications for existing clientele. Chapter 3 describes data

on how respondents would treat applications under

specific scenarios.

Commercial Health Insurers

Most applicants for individual health insurance

are classified as standard and can purchase coverage

without additional premiums or limitations (i.e.,

exclusions). Over half (18 of 29) of commercial

insurers responding to the OTA survey provided

standard coverage to at least 60 percent of their

individual applicants. Three-quarters of the respondents (30 of 38) underwriting small groups also cover

60 to 100 percent of group members on a standard

basis.

Substandard policies can include an exclusion

waiver, a rated premium, or both. Exclusion waivers

temporarily or permanently exclude a medical condition from coverage. The exclusion may be for a

specific condition, such as gallstones, or for an entire

organ system, such as reproductive disorders. More

than half (18 of 29) of responding commercial

insurers reported that O to 19 percent of their

individual policies carried an exclusion waiver.

(Information on the duration of the waiver was not

gathered in this survey.) Four companies imposed

exclusions for 20 to 34 percent of their individual

coverage applicants. Thirty-three of 38 commercial

respondents that offer medically underwritten group

coverage required exclusion waivers for O to 20

percent of applicants.

Sixteen of 29 commercial insurers that offer

individual coverage reported that the increased risk

associated with 1 to 20 percent of their applicants

required a rated premium. The cost of additional

premiums usually ranges from 25 to 100 percent of

the standard premium, although some insurers use

higher ratings (l). In this survey, OTA found that 18

commercial companies that offer medically underwritten group coverage never charge applicants a

rated (higher priced) premium.

All 39 companies that offer individual policies

declined some portion of applicants; responses

ranged from 2 to 22 percent of applicants. Similarly,

all 27 companies offering medically underwritten

group coverage declined between 1 and 30 percent

of applicants for these policies.

Blue Cross and Blue Shield Plans

Although BC/BS plans generally do not screen for

high-risk applicants as exhaustively as do commercial carriers, the risk classification that is used once

a high-risk applicant is identified varies little from

the approach used by commercial carriers (3). A

majority of BC/BS plans represented by the underwriter survey (17 of 25) do not offer standard

coverage for their individual applicants; 7 BC/BS

plans reported offering standard rates for 25 to 85

percent of individual applicants. About half (11 of

21) of BC/BS plans offering medically underwritten

group coverage do not offer standard rates to any

applicants. Seven respondents offer standard rates to

10 to 25 percent of applicants for medically underwritten group coverage.

For BC/BS plans represented by a medical

director survey, 10 of 18 plans that offer individual

coverage do not offer standard coverage to any

applicants. Five of the 18 plans that offer individual

coverage did so at standard rates to 60 percent or

more of all applicants. For medically underwritten

groups, one-third (5 of 15) of plans do not offer

standard coverage to any applicants. Four of 15

BC/BS plans represented by a medical director

survey that offer medically underwritten group

coverage offered standard rates to less than 30

percent of applicants. Another four BC/BS plans
Chapter 2-Profile of Respondents ● 7

offered standard rates to more than 75 percent of

applicants.

BC/BS plans generally do not offer coverage at

standard rates to open enrollment applicants; seven

of eight BC/BS underwriters that work for plans with

open enrollment reported that applicants for this

type of coverage are not offered standard rates.

Three of seven BC/BS medical directors that work

for plans with open enrollment said they do not offer

individual coverage to any applicants at standard

rates. Most plans attempt to hold down premium

rates for open enrollment subscribers by providing

less comprehensive benefits relative to medically

underwritten applicants. Others require open enrollment subscribers to pay higher premiums than

underwritten applicants for identical coverage. Open

enrollment coverage of high-risk applicants usually

entails waiting periods before initial benefits may be

paid and may impose limitations on coverage of

preexisting conditions (3).

The majority of BC/BS plans represented by

underwriter surveys (23 of 25) offering individual

coverage do so with standard rates, but with

exclusion waivers for O to 50 percent of applicants.

However, of the 21 plans offering medically underwritten group coverage, over half (14 plans) do not

offer coverage at standard rates with an exclusion

waiver to any applicants. The remaining five responding plans offered this coverage to less than 10

percent of applicants. None of the eight BC/BS

underwriters plans offered open enrollment coverage at standard rates with an exclusion waiver,

Eight of 18 BC/BS plan medical directors said

their plans do not offer standard coverage with an

exclusion waiver to anyone applying for individual

coverage; the remaining eight BC/BS plans offer

standard coverage with an exclusion waiver to less

than 27 percent of applicants for individual coverage. Eight of 15 medical directors of BC/BS plans

that offer medically underwritten group policies said

they do not offer standard coverage with an exclusion waiver to any applicants; the remaining seven

BC/BS plans offer this type of coverage to less than

11 percent of all medically underwritten group

applicants. For open enrollment, a majority (5 of 7)

of medical directors from BC/BS plans that offer

such coverage said they offer standard rates with an

exclusion waiver to any open enrollment applicant.

Underwriters from 15 of the 25 BC/BS plans

offering individual policies responded that more

than 50 percent of their applicants are offered

coverage at a standard premium but with a waiting

period, as do 13 of 21 BC/BS plans offering

medically underwritten group coverage. Underwriters at four of eight BC/BS plans offering open

enrollment said their plans offer applicants standard

rates, but require waiting periods.

Medical directors from 11 of the 18 BC/BS plans

that write individual coverage said more than 58

percent of their plans’ applicants are offered policies

at a standard premium but with awaiting period. Six

of 18 BC/BS plans do not offer standard rates with

a waiting period to any medically underwritten

group applicants, but medical directors from six

other BC/BS plans reported their plans offer such

coverage to more than 65 percent of their applicants.

Three of 7 BC/BS plans offering open enrollment do

not give standard rates with a waiting period to any

applicants, while two of seven give this coverage to

all applicants.

Requiring a rated premium with no waiting period

or exclusion waiver was uncommon for plans

offering individual coverage-only one plan covered applicants this way among surveys returned by

chief underwriters. Although a majority of chief

underwriters at BC/BS plans that medically underwrite groups (12 of 21) reported they never offered

applicants a rated premium with no waiting period or

exclusion waiver, a few plans did: 6 did less than 50

percent of the time and 2 did for more than 80

percent of their applicants. However, no plans

offering open enrollment covered applicants this

way.

No medical directors from the 18 BC/BS plans

that write individual policies offered such coverage

at a rated premium without a waiting period or

exclusion waiver. Similarly, medical directors from

11 of 15 BC/BS plans said they never offered

medically underwritten group coverage with a rated

premium and no waiting period or exclusion waiver.

A majority (5 of 7) of medical directors from BC/BS

plans offering open enrollment said they did not

offer this type of coverage to any applicant.

Only 1 of the 25 underwriters from BC/BS plans

offering individual coverage responded he or she did

so with a rated premium and an exclusion waiver—

to 1 percent of applicants. Underwriters from 22 of

25 BC/BS plans offering individual coverage said

their plans did not cover any applicants with a

waiting period and a rated premium. Six BC/BS
8 ● Genetic Tests and Health Isurame: Results of a Survey

plans offering medically underwritten group policies covered less than 25 percent of applicants with

a waiting period and a rated premium, but 13 plans

represented by underwriters never offered this coverage. No open enrollment plans offered coverage

with a waiting period or an exclusion waiver and a

rated premium.

None of the medical directors from BC/BS plans

that offer individual policies said their plan covered

any applicants with a rated premium and an exclusion waiver. Medical directors from 12 of 15 BC/BS

plans that offer medically underwritten group policies said their plans do not cover any applicants with

a rated premium and an exclusion waiver. Fifteen of

18 medical directors from BC/BS plans that offer

individual coverage said their plans do not cover any

applicants with a waiting period and a rated premium. Medical directors from 10 of the 15 BC/BS

plans that offer medically underwritten group coverage said their plans do not cover any applicants with

a waiting period and a rated premium.

For BC/BS plans represented by the underwriter

population, 19 of 21 plans that offer individual

coverage declined applicants between O and 25

percent of the time. Nearly all responding underwriters from BC/BS plans (20 of 21) said they declined

applicants less than 35 percent of the time. Medical

directors from 15 of the 18 BC/BS plans that offer

individual coverage reported their plans declined

applicants between O and 25 percent of the time.

Thirteen of the 15 BC/BS plans returned by a

medical director declined applicants for medically

underwritten group coverage less than 3 percent of

the time.

Health Maintenance Organizations

All 11 HMOS offering individual coverage accept

more than 50 percent of their applicants at standard

rates. Three-quarters (16 of 20 respondents) of those

HMOS offering medically underwritten group coverage offer standard rates to more than 50 percent of

their applicants. The majority of HMOS offering

individual coverage (9 of 11) do not use exclusion

waivers, and a similar proportion of HMOS offering

medically underwritten group coverage (15 of 20)

also do not use exclusion waivers. Similar proportions were found for HMOS covering applicants with

rated premiums: 10 of the 11 HMOs offering

individual coverage and 13 of the 20 offering

medically underwritten coverage never provide

coverage with a rated premium.

Clearly, HMO practices are either to accept

applicants or to decline them. Rarely did HMO

survey respondents report accepting an applicant

with a restriction on the policy. More than half of

responding HMOS that offer individual coverage (6

of 11) declined applicants less than 25 percent of the

time. The remaining 5 respondents declined applicants for coverage less than 45 percent of the time.

For HMOS offering medically underwritten group

coverage, the proportion of declined applicants was

similar: 15 of the 20 offering medically underwritten

group coverage declined coverage less than 25

percent of the time.

CHAPTER 2 REFERENCES

1,

2.

3.

4.

Health Insurance Association of America, A Course in

Individual Health Insurance: Parts A and B (Chicago,

IL: Health Insurance Association of America, 1983).

Iglehart, J. K., “The American Health Care System—

Private Insurance,’ New England Journal of Medicine

326:1715-1720, 1992.

U.S. Congress, Office of Technology Assessment,

Medical Testing and Health Insurance, OTA-H-384

(Washington, DC: U.S. Government Printing Office,

August 1988).

U.S. Congress, Office of Technology Assessment,

Cystic Fibrosis and DNA Tests: Implications of

Carrier Screening, OTA-BA-532 (Washington, DC:

U.S. Government Printing Office, August 1992)
Chapter 3

Underwriting Practices

An underwriter’s objective is to know as much cants. A majority of BC/BS plans (20 of 25)

about the applicant’s health status as the applicant. represented by an underwriter survey never required

Any health insurance policy based on medical a family history of individual applicants or mediunderwriting requires the applicant (and each family cally underwritten group applicants (19 of 21), or

member for famiIy policies) to complete a health open enrollment applicants (7 of 8). Sixteen of 18

history questionnaire and to release medical records. BC/BS plans represented by medical directors did

In some-cases, insurers might also require physical not require a family history of any individual

examinations or laboratory tests. applicants. Fourteen of 15 BC/BS plans represented

by the underwriter population did not require one

UNDERWRITING PRACTICES from any medically underwritten group applicants.

The same holds true for HMOS, with 9 of 11 that

For commercial health insurers offering individ- offer individual coverage not requiring a family

ual coverage, the majority (23 of 29) surveyed by history of any applicants and 14 of 20 never

OTA required a personal health history of all requiring one of medically underwritten group

applicants. The same is true for commercial compa- applicants.

nies offering medically underwritten coverage: 29 of

37 required one of all applicants. Of those commercial insurers requiring a family

health history, six routinely request information

For Blue Cross and Blue Shield (BC/BS) plans about the applicant’s parents, and five respondents

represented by the underwriter survey, 22 of 25 plans request information about an applicant’s spouse and

offering individual coverage required a personal children. Of the few BC/BS plans represented by an

health history of all applicants; 17 of 21 plans underwriter survey that required a family history,

offering medically underwritten group coverage information on an applicant’s spouse and children is

required one of all applicants. Underwriters at six of most often requested. Four required information

the eight BC/BS plans with open enrollment cover- about a spouse and five seek information about

age said their plans did not require a personal history children. Health histories on spouse (2 plans) and

from any applicants. Sixteen of 18 BC/BS plans children (2 plans) are the only ones used by BC/BS

represented by a medical director survey required a plans represented by medical directors. Finally, for

personal health history of all applicants. Thirteen of HMOS using a family history, information is ob15 BC/BS plans represented by a medical director

survey required one of all applicants as well. Of

those BC/BS plans from medical directors that had

open enrollment, 4 of 6 did not require a personal

health history from any applicants. For health

maintenance organizations (HMOS), 7 of 11 plans

offering individual coverage required a personal

health history of all applicants. Nine of 20 HMOS

required one of all medically underwritten group

applicants; all of the remaining plans required a

personal health history for less than 40 percent of

their applicants.

Family health histories were required of all

individual applicants for 14 of 29 commercial

insurers; 12 individual insurers did not require one

of any applicants. For commercial insurers offering

medically underwritten group coverage, nearly half

(16 of 37) did not require a family history from any

applicants, while 12 required one from all applitained most often on an applicant’s spouse (6 plans)

and children (6 plans).

Varying widely are company procedures pertaining to the proportion of applicants required to

provide further evidence of their health status

through an attending physician statement (APS),

physical examination, or blood/urine test. The standard APS form calls for a complete description of a

patient’s complaints, any abnormal findings (including laboratory and other test results), treatment or

operations, present condition, if known, and other

medical information with a bearing on an applicants

health, such as smoking or alcohol use. For children

under 6 months of age, additional information might

be sought regarding birth weight and the presence of

any disease or abnormality (2).

For both medically underwritten groups and

individual policies, the APS is the most common

-9-

297-912 0 - 92 - 2 : QL 3
10 ● Genetic Tests and Health Insurance: Results of a Survey

supplemental source of information for underwriting

beyond the health data provided directly through the

insurance application (2). For individual applicants,

a quarter of commercial insurers (10 of 39) required

an APS for less than 25 percent of applicants, 12

required one for between 25 and 50 percent of

applicants, and 9 for over 50 percent of applicants.

Twenty-four commercial plans required an APS for

less than 25 percent of medically underwritten group

applicants.

Overall, close to half (12 of 25) of underwriters

from BC/BS plans offering individual coverage

required an APS for less than 25 percent of

applicants; 13 of 21 offering medically underwritten

coverage required an APS for less than 25 percent of

applicants. Underwriters from seven of the eight

BC/BS open enrollment plans said they never

required an APS of applicants. Eight of 18 BC/BS

plans for the medical director population required an

APS for 25 to 50 percent of individual applicants,

seven required one from less than 25 percent of

applicants. Medical directors from all 15 BC/BS

plans that offer medically underwritten group coverage said they required an APS for less than 50

percent of applicants. Over half the HMOS (6 of 11)

that offer individual coverage required an APS for

50 to 75 percent of applicants, while four required

one for less than 20 percent of applicants. Fifty

percent (10 of 20) of HMOS did not require an APS

for any medically underwritten group applicants, 8

required them for less than 10 percent of applicants.

For commercial companies, an APS was triggered

most often by reports of any significant (39 companies) or selected (31 companies) diagnosis or

symptoms on the application, or because of a

Medical Information Bureau, Inc. (MIB) report (26

companies). Applications for individual insurancehealth, life, or disability-carry an explanation

about MIB. MIB’s reports alert a potential insurer to

omissions or misrepresentation of facts by an

applicant (3). In the BC/BS underwriter/medical

director surveys, any significant (19 plans/1 1 plans)

or selected (16 plans/10 plans) diagnosis or symptoms reported on the application triggered an APS.

Twelve HMOS required an APS because of any

significant diagnosis or symptoms in the application, and 11 HMOS required one because of selected

diagnoses or symptoms.

Physical examinations of individual health insurance applicants are much less common than other

underwriting practices. Five of 29 commercial

insurers did not require physical exams of any

individual applicants, 22 required a physical exam of

less than 40 percent of applicants. Thirty-four of 37

companies required a physical exam from less than

25 percent of medically underwritten group applicants.

Seventeen of 25 BC/BS plans represented by the

medical director population did not require a physical exam of any individual applicants. Physical

exams are not required of any medically underwritten group applicants in 16 of 21 BC/BS plans.

Medical directors at 10 of 18 BC/BS plans that offer

individual coverage said their plans did not require

a physical exam of any applicants. The remaining

plans required them of less than 20 percent of

applicants. Of the 15 BC/BS plans represented by

the medical director population, 12 do not require a

physical exam of any medically underwritten group

applicants. For the 11 HMOS that write individual

policies, physical exams are required for less than 30

percent of applicants. Only one of 20 HMOS requires

a physical exam for medically underwritten group

coverage.

If commercial insurers require a physical exam, it

is usually triggered because of selected diagnoses or

symptoms reported on an application (21 plans), or

an MIB report (22 plans). Underwriters at six BC/BS

plans reported that selected diagnoses or symptoms

in the application, and any significant diagnosis or

symptoms in the APS, can trigger a physical exam.

Four BC/BS plans represented by the medical

director population said that any significant diagnosis or symptoms in the APS prompts a physical

exam, as they can for four HMOS.

Insurers generally use the standard blood tests and

urinalysis that are commonly ordered by physicians

as part of a general physical evaluation. Such panels

can detect indicators of use of illicit drugs, as well as

nicotine and prescription medications for diabetes,

heart disease, and hypertension. The insurer’s interest in prescription medicine is twofold; fist, to

identify applicants who are not forthcoming in their

health history questionnaire and, second, to determine whether known hypertensive applicants, for

example, are conscientiously following prescribed

treatment (2).

Twenty of 29 commercial companies required

blood or urine screens of less than 30 percent of

individual applicants; 33 of 37 commercial compa-
Chapter 3-Underwriting Practices . 11

nies required blood or urine screens of less than 30

percent of medically underwritten group applicants.

Eleven commercial companies did not require them

of any medically underwritten group applicants.

Blood or urine screens are not required of individual

applicants by underwriters at 20 of 25 BC/BS plans.

Nineteen of 21 BC/BS plans represented by an

underwriter survey did not require blood or urine

screens of any medically underwritten group applicants. Medical directors from 15 of 18 BC/BS plans

said they did not require blood or urine screens from

any individual applicants; all 15 plans that offer

medically underwritten group coverage never required a blood or urine screen. Nine of the 11 HMOS

that offer individual coverage said blood or urine

screens are required of less than 20 percent of

applicants. Nineteen of 20 HMOS never required

them of any medically underwritten group applicants.

FACTORS IN INSURABILITY

Insurability is not just a matter of health status;

several factors are involved in an underwriter’s

decision to acceptor deny an application, to exclude

coverage for a condition, or to charge a higher

premium. When asked to indicate which nonmedical

underwriting factors could affect acceptance of an

individual application, commercial insurers most

commonly cited smoking habits, age, and occupation. For medically underwritten group applicants,

insurers cited age, occupation, and sex (table 3-l).

An individual applicant’s smoking status is considered ‘‘important’ or ‘‘very important” by 24 of

29 commercial insurers. Twenty-three of 29 commercial insurers offering individual insurance said

age was important or very important. An applicant’s

occupation is important or very important to 21 (41

percent) insurers of individuals. Eighteen (35 percent) commercial insurers of group applicants consider age, occupation, and gender to be important

factors in determnining insurability.

Personal and family medial histories were the

most important factors in determnining insurability

for respondents regardless of whether they were

from a commercial insurer, HMO, or BC/BS plan.

For commercial insurers, for example, all individual

and group insurers thought a personal history of

significant conditions was very important. However,

only 16 of 29 individual insurers and 17 of 37

commercial group insurers thought a family medical

history was important. Insurers of both individuals

and groups found genetic predispositions as well as

carrier risk for genetic diseases to be relatively

unimportant. Genetic predisposition was a very

important criterion to 4 of 29 commercial insurers

that offer individual policies, important to 6, unimportant to 3, and never used by 16. Eighteen of 37

group insurers found genetic predispositions to be

important, with an equal number never using it in

determining insurability. Carrier risk for genetic

disease was considered important in determining

insurability by 7 of 29 companies that insured

individuals and by 10 of 37 group insurers. Similar

results were obtained for BC/BS plans and HMOS

(table 3-l).

Information on Specific Conditions

When certain conditions are detected either in an

examination or an application, how do they affect

the rating of applicants by insurers? The majority of

commercial insurers would not accept individual

applicants with standard rates for any of the conditions listed in the OTA survey (table 3-2). A large

proportion would decline the applicant. Fewer

applicants with hypertension were declined than

those who had cerebrovascular disease, diabetes, or

cystic fibrosis (CF). HMOS generally accepted

individual applicants with the listed conditions, but

often with an exclusion waiver and a rated premium.

Eight of 11 HMOS that offer individual coverage

declined individual applicants with hemophilia and

CF (table 3-2). Individual applicants with the listed

conditions were most often declined coverage from

BC/BS plans (table 3-3). Those applicants with

hypertension were declined least often, while applicants with hemophilia and sickle cell anemia were

declined most often.

Commercial insurers declined to cover the majority of medically underwritten groups with members

who had one of the conditions in table 3-2, except for

groups with applicants who had hypertension. In

fact, medically underwritten groups with appliants

who had hypertension were frequently accepted with

standard rates by commercial insurers, BC/BS plans,

and HMOS (tables 3-2 and 3-3). When medically

underwritten group policies were accepted with

applicants having one of the other conditions listed

in the OTA survey, most BC/BS plans required

either a rated premium or a waiting period (table

3-3), and again, applicants were most often declined
12 ● Genetic Tests and Health Insurance: Results of a Survey

Table 3-l—Factors in Determining Insurability

Question: For each category of coverage, please indicate the importance of each of the following factors in determining insurability (not

in rating):

Very Never

Respondent important Important Unimportant used No responsea

Individual policies

Age

Occupation

Smoking status

Lifestyle

sex

Financial/credit status

Personal medical history of

significant conditions

Family medical history of

Significant renditions

Genetic predisposition to

significant conditions

Carrier risk for genetic

disease

Commercials

HMOS

BC/BS U

b

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS - U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS - U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS - U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

11 (38%)

o ( o%)

o ( o%)

3 (17%)

3 (lo%)

o ( 0%)

o ( 0%)

o ( o%)

9 (31%)

1 ( 9%)

3 (12%)

3 (17%)

1 ( 3%)

o ( o%)

1 ( 4%)

1 ( 6%)

5 (17YO)

o ( o%)

o ( 0%)

1 ( 6%)

2 ( 7%)

o ( 0%)

o ( 0%)

o ( o%)

29(100%)

9 (82%)

22 (88%)

16 (89%)

5 (1 7%)

1 ( 9%)

o ( o%)

o ( 0%)

4 (14%)

o ( o%)

1 ( 4%)

o ( o%)

2 ( 7%)

o ( o%)

o ( o%)

o ( 0%)

12 (41%)

3 (27%)

9 (36%)

6 (33%)

18 (62%)

2(1 8%)

3(12 )

6 (33%)

15 (52%)

5 (45%)

9 (36%)

5 (28%)

10 (34%)

3 (27%)

5 (20%)

5 (28%)

4 (14%)

o ( o%)

3 (12%)

5 (28%)

11 (38%)

o ( 0%)

o ( %)

o ( o%)

o ( o%)

o ( 0%)

1 ( 4%)

o ( 0%)

11 (38%)

o ( 0%)

6 (24%)

4 (22%)

6 (21%)

3 (27%)

2 ( 8%)

3 (1 7%)

5 (17YO)

2 (18%)

2 ( 8%)

3 (1 7%)

5(1 7%)

7 (64%)

7 (28%)

4 (22%)

7 (24%)

3 (27%)

10 (40%)

3(1 7%)

2 (71%)

1 ( 9%)

4 (16%)

1 ( 6%)

3 (lo%)

2(1 8%)

6 (24%)

1 ( 6%)

7 (24%)

2 (18%)

7 (28%)

3(1 7%)

9 (31%)

3 (27%)

o ( o%)

o ( 9%)

o ( 0%)

o ( 0%)

o ( o%)

o ( o%)

9 (31%)

2 (18%)

4 (16%)

4 (22%)

3 (lo%)

1 (18%)

5 (20%)

1 ( 6%)

6 (21 %)

1 (18%)

5 (20%)

1 ( 6%)

for coverage by BC/BS plans when they had tions about genetic conditions? OTA asked insurers

cerebrovascular disease, hemophilia, or sickle cell whether questions on genetic conditions were inanemia. eluded in either a personal history, a family history,

Inquiries About Genetic Conditions

or neither. For individual policies, the majority of

commercial insurers did not inquire about any of the

Do applications for either individual or medically listed genetic conditions in either the personal or

underwritten group insurance coverage contain ques- farmily history (table 3-4). Five of 29 commercial
Chapter 3-Underwriting Practices ● 13

Table 3-l—Factors in Determining Insurability-Continued

Question: For each category of coverage, please indicate the importance of each of the following factors in determining insurability (not

in rating):

Very Never

Respondent important Important Unimportant used No responsea

Medically underwritten group policies

Age

Occupation

Smoking status

Lifestyle

sex

Financial/credit status

Personal medical history of

significant conditions

Family medical history of

significant conditions

Genetic predisposition to

significant conditions

Carrier risk for genetic

disease

a Percentages may not add to 100 due to rounding.

bBC/BS plan-u represents the underwriter population and BC/BS plans-M, the medical director population.

SOURCE: Office of Technology Assessment, 1992,

insurers that offer individual coverage inquired More than half of commercial insurers (26 of 37)

about Tay-Sachs, Huntington disease, sickle cell that offer medically underwritten group coverage

anemia, and CF in the personal history; 7 insurers never inquired about the listed genetic conditions in

inquired about hemophilia in the personal history. either the personal or family history. Eight commerHowever, genetic conditions were of greater interest cial insurers responded that they inquired about all

to HMOS and BC/BS plans. Inquiries in the personal of the genetic conditions in OTA’s survey in the

history about hemophilia were the most common. personal history. Fewer HMOS and BC/BS plans
]4 ● Genetic Tests and Health Insurance: Results of a Survey

Table 3-2—Treatment of Applicants with Specific Conditions: Commercials and HMOS

How would you normally treat either an individual policy applicant or medically underwritten groups that disclosed the following renditions

in an examination(s) or application:

Accepted Accepted Accepted

with with without

Accepted exclusion exclusion exclusion

with waiver at waiver waiver

standard standard at rated at rated No

Respondent rates rates premium premium Declined responsea

Individual policles

Hypertension Commercials

HMOS

Diabetes mellitus Commercials

HMOS

Cerebrovascular Commercials

disease HMOS

Hemophilia Commercials

HMOS

Cystic fibrosis Commercials

HMOS

Sickle cell Commercials

anemia HMOS

Medically underwltten

group policies

Hypertension Commercials

HMOS

Diabetes mellitus Commercials

HMOS

Cerebrovascular Commercials

disease HMOS

Hemophilia Commercials

HMOS

cystic fibrosis Commercials

HMOS

Sickle cell Commercials

anemia HMOS

2 (7%)

1 (9%)

o (o%)

o (o%)

o (o%)

1 (5%)

aPercentages may not add to 100 due to rounding.

SOURCE: Office of Technology Assessment, 1992.

that offered medically underwritten group coverage

were interested in the genetic conditions than the

HMOS and BC/BS plans that offered individual

coverage. More than half of all HMOS did not

inquire about the listed conditions in either the

personal or family history. Similar numbers were

found from responding underwriter and medical

directors of BC/BS plans (table 3-4).

Effect of Genetic Test Results on Insurability

Do genetic test results have an effect on insurability? When presymptomatic testing reveals the likelihood of a serious, chronic future disease (e.g.,

Huntington disease) 17 of 29 commercial insurers

would decline an individual applicant, while 8

would accept the applicant at standard rates (table

3-5). Fifteen of 37 commercial insurers that cover

medically underwritten groups would decline the

applicant, however, 10 insurers would accept the

group at standard rates (table 3-5).

Underwriters at 11 of 25 BC/BS plans that

provide individual coverage said they would decline

an applicant if presymptomatic testing revealed a

likelihood of disease (e.g., Huntington disease); 6

would accept the applicant at standard rates. The
Chapter 3-Underwriting Practices ● 15

*OJ 
16 ● Genetic Tests a ~Health Insurance: Results of a Survey

Table 3-4-inquiries About Genetic Conditions

Personal Family No

Question Respondent history history Neither response

Does your company specifically

Inquire, for each category of

coverage, about the following

conditions In the application

for health Insurance in the

personal history, family history,

or neither:

individual policies

Hemophilia

Tay-Sachs

Huntington disease

Sickle ceil anemia

Cystic fibrosis

Medically underwritten

group policies

Hemophilia

Commercials

HMOS

BC/BS plans-Ub

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Tay-Saohs

Huntington disease

Sickie cell anemia

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS planS-U

BC/BS plans-M

cystic fibrosis Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

7 (24%)

6 (55%)

14 (56%)

7 (39%)

5 (17%)

4 (36%)

10 (40%)

8 (44%)

5 (17YO)

4 (36%)

10 (40%)

7 (39%)

5 (1 7%)

5 (46%)

12 (48%)

8 (44%)

5 (17’?40)

5 (46%)

13 (52%)

8 (44%)

8 (22%)

6 (30%)

11 (52%)

7 (47940)

8 (22%)

5 (25%)

9 (43%)

7 (47%)

8 (22%)

5 (25%)

9 (43%)

7 (47%)

8 (22%)

7 (35%)

11 (52%)

7 (47%)

8 (22%)

6 (30%)

11 (52%)

7 (47%)

o ( o%)

o ( o%)

o ( o%)

o ( o%)

o ( o%)

2 ( 9%)

o ( o%)

o ( o%)

o ( o%)

1 ( 9%)

o ( o%)

o ( o%)

o ( 0%)

1 ( 9%)

o ( o%)

o ( o%)

o ( o%)

1 ( 9%)

o ( o%)

o ( o%)

2 ( 5%)

1 ( 5%)

o ( o%)

o ( 0%)

2 ( 5%)

1 ( 5%)

o ( o%)

o ( o%)

2 ( 5%)

1 ( 5%)

o ( o%)

o ( o%)

2 ( 5%)

1 ( 5%)

o ( o%)

o ( o%)

2 ( 5%)

1 ( 5%)

21 (73%)

4 (36%)

9 (36%)

11 (61%)

23 (79%)

5 (46%)

13 (52%)

10 (560/.)

23 (79%)

5 (46%)

13 (52%)

11 (61%)

23 (79%)

4 (36%)

12 (48%)

10 (56%)

23 (79%)

4 (36%)

11 (44%)

10 (56%)

26 (70%)

12 (60%)

9 (43%)

8 (53%)

26 (70%)

13 (65%)

11 (52%)

8 (53%)

26 (70%)

13 (65%)

11 (52%)

8 (53%)

26 (70%)

11 (55%)

10 (48%)

8 (53%)

26 (70%)

12 (60%)

10 (48%)

8 (53%)

o ( o%)

o ( o%) . ,

a Percentages my not add to 100 due to rounding.

1 (3%)

1 (9%)

2 (8%)

o (o%)

1 (3%)

1 (9%)

2 (8%)

o (o%)

1 (3%)

1 (9%)

2 (8%)

o (o%)

1 (3%)

1 (9%)

1 (4%)

o (0%)

1 (3%)

1 (9%)

1 (4%)

o (0%)

bBC/BS plans-U represents the underwriter population and BC/BS plans-M, the medical director population.

SOURCE: Office of Technology Assessment, 1992.
Chapter 3-Underwriting Practices ● 17

Table 3-5-Effect of Genetic Test Results on Insurability: Commercials and HMOS

How would individual policies and medically underwritten policies normally be affected by the following findings:

Accepted Accepted Accepted

with with without

Accepted exclusion exclusion exclusion

with waiver at waiver waiver

standard standard at rated at rated No

Respondent rates rates premium premium Declined responsea

Individual policles

Presymptomatic

testing reveals the

likelihood of a serious

chronic future disease

Risk oriented testing

reveals that an individual carries markers

associated with a

serious, chronic future

disease

Carrier testing

reveals the possibility

that offspring may have

a serious, ohronic

condition or disease

Prenatal diagnosis

reveals fetus affected

with a serious, chronic

rendition or disease

Medically underwritten

group policies

Presymptomatic

testing reveals the

likelihood of a serious

chronic future disease

Risk oriented testing

reveals that an individual carries markers

associated with a

serious, chronic future

disease

Carrier testing

reveals the possibility

that offspring may have

a serious, chronic

condition or disease

Prenatal diagnosis

reveals fetus affected

with a serious, chronic

condition or disease

Commercials

HMOS

Commercials

HMOS

Commercials

HMOS

Commercials

HMOS

Commerials

HMOS

Commercials

HMOS

Commercials

HMOS

Commercials

HMOS

a Percentages may not add to 100 due to rounding.

SOURCE: Office of Technology Assessment, 1992.

effect of such a test result would cause a medically matic testing revealed predisposition for future,

underwritten group application to be declined by 9 chronic disease predisposition, while 5 would accept

of 21 underwriters at BC/BS plans (table 3-6). the applicant at standard rates. Six of 15 BC/BS

plans would decline medically underwritten group

Medical directors at 8 of 18 BC/BS plans said they coverage because of presymptomatic test results,

would decline individual coverage if presympto- and 3 would accept the applicant at standard rates.
18 . Genetic Tests and Health Insurance: Results of a Survey

●

c

0

( V
Chapter Underwriting Practices ● 1 9

Of the 11 HMOS that cover individuals, 4 would

decline an applicant if presymptomatic testing

revealed the likelihood of a chronic, future disease

and 2 would accept the applicant at standard rates.

Six of 20 HMOS that cover medically underwritten

groups would do so at standard rates, while 5 HMOS

would decline the application.

When risk-oriented testing reveals that an individual carries markers associated with a serious, chronic

future disease (e.g., predisposition to heart disease)

12 of 29 commercial insurers would accept individual applicants at standard rates; 5 would decline

coverage. The use of an exclusion waiver to exclude

the condition would be used by four plans, while five

plans would use a rated premium rather than an

exclusion waiver. More than half of commercial

insurers (21 of 37) that cover medically underwritten

groups would accept the applicant at standard rates,

8 would offer standard rates but would have an

exclusion waiver for the specific condition.

If an individual applicant is found to carry

markers for a chronic, future disease, 10 of 25

BC/BS plans represented by an underwriter survey

would accept the application at standard rates, while

5 would decline coverage. Similar proportions were

found for medically underwritten group coverage,

with underwriters at9of21 BC/BS plans responding

that an application would be accepted at standard

rates, and 4 responding that coverage would be

declined.

The results of risk-oriented testing did not affect

individual insurability at 8 of 18 BC/BS plans

represented by the medical director population, as

they would be accepted with standard rates. However, medical directors at 5 of 18 plas said they

would decline coverage because of evidence of

disease markers. One-third of underwriters at BC/BS

plans (5 of 15) that cover medically underwritten

groups said they would accept such groups at

standard rates even if disease markers were detected

within the group; 3 would decline such applications.

Four of 11 HMOS that accept individuals for

coverage would still do so at standard rates even if

risk-oriented testing revealed the possibility of a

serious, chronic future disease. Half of the HMOS

(10 of 20) that cover medically underwritten groups

would do so at standard rates in light of such

risk-oriented testing results; 3 would deny the

application.

When carrier tests reveal the possibility that

children may have a serious, chronic condition or

disease, 16 of 29 commercial insurers would accept

the applicant with standard rates, but 6 would

decline the applicant. Three commercial insurers

would accept the individual applicant with an

exclusion waiver (presumably for the specific condition revealed by carrier testing). Over half of

commercial insurers that provide coverage to medically underwritten groups (22 of 37) would accept

the applicant with standard rates, while 8 would

decline coverage.

Ten of 25 BC/BS plans represented by the

underwriter population would accept an individual

applicant at standard rates even if carrier tests

revealed that children might have a serious condition

or disease; 3 would decline coverage. A waiting

period would be used by six BC/BS plans for

individual applicants. Nine of 21 BC/BS plans

represented by a medical director survey would

provide coverage at standard rates to medically

underwritten groups with members who had carrier

test results; 4 would require a waiting period.

Results of carrier testing would not affect insurability or rating for individual applicants at 7 of 18

BC/BS plans represented by a medical director

survey, while 2 plans would require an exclusion

waiver and 2 would require a waiting period. Similar

proportions were found for medical directors at

BC/BS plans (table 3-6).

Carrier test results would not cause any of the 11

HMOS that accept individual applicants to decline

coverage; 6 would accept at standard rates and one

HMO would accept the applicant with an exclusion

waiver and charge a rated premium. Nine of the 20

HMOS that provide medically underwritten group

coverage would do so at standard rates in light of

carrier test results, and three would decline coverage.

If prenatal diagnosis reveals a fetus is affected

with a serious, chronic condition or disease, 19 of 29

commercial insurers would decline an applicant. Six

commercial insurers would accept the individual

applicant at standard rates. It should be noted

however, that if a pregnant woman is already

covered, her baby is covered at birth (l), so the

prenatal diagnosis would affect coverage only for

pregnant women who are not currently covered.

Twenty-four of 37 commercial insurers that cover
20 ● Genetic Tests and Health Insurance: Results of a Suvey

Table 3-7—Effect of Genetic Test Information on Insurability y: Commercials and HMOS

aPercentages may not add to 100 due to rounding.

SOURCE: Office of Technology Assessment, 1992.

medically underwritten groups would decline coverage, while 6 would accept at standard rates.

Underwriters at 14 of 25 BC/BS plans would

decline coverage to individual applicants if prenatal

diagnosis revealed the fetus had a serious condition

or disease, 5 would accept the applicant at standard

rates. Thirteen of 21 BC/BS plans represented by the

underwriter population would decline a medically

underwritten group application as a result of such a

prenatal diagnosis. A similar distribution of medical

directors would decline coverage due to prenatal test

results (table 3-6).

Four of 11 HMOS that offer individual coverage

would decline an applicant if prenatal test results

revealed a fetus had a serious condition, and only 1

would accept the applicant at standard rates. Eight of

20 HMOS that cover medically underwritten groups

would decline the application, while 4 HMOS would

accept the application with standard rates.

Effect of Genetic Information on Insurability

How do health insurers treat applicants that are

asymptomatic but have family histories of genetic

conditions? OTA found that a family history of a

genetic condition did not always mean the applicant

would be declined. In fact, the majority of such

applicants would be accepted at standard rates. The

majority of commercial insurers accepted individual

applicants at standard rates when a family history of

a genetic condition was revealed (table 3-7). Applicants for commercial health insurance who had a

family history of hemophilia, Tay-Sachs, sickle cell

anemia, CF, ADA deficiency (“Bubble Boy disease”), and Down syndrome all would be accepted

at standard rates more than 80 percent of the time.

Fifty-nine percent of individual applicants for commercial insurance with a family history of Huntington disease and 79 percent with a history of

Duchenne muscular dystrophy would be accepted at

standard rates. The majority of HMOS accepted

individual applicants at standard rates when they

were asymptomatic, but had a family history of a

genetic condition (table 3-7). The majority of

underwriters and medical directors from BC/BS

plans responding to the OTA survey accepted

individual applicants at standard rates regardless of

family history for genetic conditions (table 3-8).
Chapter Underwriting Practices ● 2 1
22 ● Genetic Tests and Health Insurance: Results of a Survey

Table 3-9-Coverage of a Family Member with Family History of Disease: Commercials and HMOS

For individual policy applicants only, how would the coverage of a family member (e.g., spouse or adopted child) be affected if the policy

applicant was negative, but the family member was asymptomatic but had a family history of:

Accepted Accepted Accepted

with with without

Accepted exclusion exclusion exclusion

with waiver at waiver waiver but

standard standard at rated at rated No

Respondent rates rates premium premium Declined responsea

Sickle cell Commercials 25 (86%) 1 ( 3%)

anemia HMOS 8 (73%) o ( o%) o ( 0%)

1 ( 3%)

o ( 0%)

1 ( 3%) 2 ( 7%)

o ( o%) 3 (27%)

a Percentages may not add to 100 due to rounding.

SOURCE: Office of Technology Assessment, 1992,

How would coverage decisions be handled for a

family member on an individual insurance policy

when the applicant had a family member who was 1.

asyrnptomatic but had a family history of genetic

conditions? Commercial insurers appear to handle

applications the same whether it is a family member 2.

or the individual applying for the policy who has the

family history of genetic disease (table 3-9): The

majority of applications would be accepted at

standard rates regardless of the specific genetic 3.

condition. Similar results were found for responding

HMOS, as well as underwriters and medical directors from BC/BS plans (table 3-10).

CHAPTER 3 REFERENCES

Payne, J., Health Insurance Association of America,

Inc., Washington, DC, personal communication, January 1992.

U.S. Congress, Office of Tchnology Assessment,

Medical Testing and Health Insurance, OTA-H-384

(Washington, DC: U.S. Government Printing Office,

August 1988).

U.S. Congress, Office of Technology Assessment,

Cystic Fibrosis and DNA Tests: Implications of

Carrier Screening, OTA-BA-532 (Washington, DC:

U.S. Government Printing Office, August 1992).
Chapter Underwriting Practices ● 2 3
Chapter 4

Coverage and Reimbursement

Will health insurers pay for voluntary screening

and followup counseling? And will health insurance

companies authorize payment for prenatal screening

or testing of newborn children? Answers to these

questions carry significant cost implications. They

also will likely affect the degree to which carrier

screening for cystic fibrosis (CF) becomes commonlace, since many people will be unwilling to pay

out-of-pocket the costs of the assays (1). From the

perspective of the commercial laboratory that provides genetic tests to medical providers and patients,

the issue of reimbursement is crucial to business—

current and future.

OTA asked health insurers covering individuals

and medically underwritten groups about their

coverage of certain genetic tests and services. Are

they covered ‘at patient request,” where there is no

family history (i.e., screening)? Are they covered

‘‘only if medically indicated, ’ where a family

history exists? Or, are they “not covered”?

REIMBURSEMENT FOR GENETIC

TESTS AND SERVICES

No commercial company reimburses for CF

carrier tests for screening purposes. The survey also

found that carrier tests for CF—as well as for

Tay-Sachs and sickle cell-are not covered for any

reason by 12 of 29 commercial insurers that offer

individual coverage. Twelve respondents (41 percent) cover CF carrier assays if medically indicated.

With respect to prenatal tests for CF, about 41

percent (12 respondents) that write individual policies reimburse for such tests when medically indicated.

For the 37 commercial companies offering medically underwritten group policies, carrier tests for

CF (and, again, for sickle cell or Tay-Sachs) are not

covered by any company when done solely at patient

request. CF mutation analysis is covered by 24 of 37

companies if medically indicated. Ten companies

offering medically underwritten group coverage do

not cover any of the carrier or prenatal tests asked

about in OTA’s survey. Sixty-two percent of companies (23 respondents) that offer medically underwritten group policies cover prenatal tests for CF when

medically indicated (table 4-l).

Two of 25 Blue Cross and Blue Shield (BC/BS)

plans offering individual coverage would reimburse

CF carrier screening at patient request. Sixteen of

these BC/BS plans (64 percent) cover them if they

are medically indicated and seven do not cover them.

Three of 25 BC/BS plans cover prenatal testing for

CF at a patient’s request, seven if medically indicated, and three not at all. Of 21 BC/BS plans

offering coverage to medically underwritten groups,

CF carrier screening is covered at patient request by

only 2 companies (10 percent), if medically indicated by 11 companies (52 percent), and not at all by

8 companies (38 percent) (table 4-l). Data on

coverage for CF prenatal tests by BC/BS plans that

cover medically underwritten groups are also presented in table 4-1.

For the 11 health maintenance organizations

(HMOS) that offer health insurance to individuals, 1

HMO (9 percent) covers CF carrier tests at patient

request and 7 HMOS (64 percent) reimburse for them

if medically indicated. For the 20 HMOS that offer

medically underwritten group contracts, 1 HMO (5

percent) covers CF carrier tests at patient request, 13

respondents (45 percent) reimburse for them if

medically indicated, and 2 (10 percent) do not cover

them at all. Table 4-1 presents these results as well

as how HMOS cover prenatal tests for CF.

From OTA’s survey results, it is evident that

carrier and prenatal tests often are not covered under

individual and medically underwritten group policies unless they are medically necessary-i. e.,

unless a family history exists. Such policies can have

a significant impact on both the rate at which CF

carrier screening becomes routine and the ultimate

utilization of CF mutation analysis.

OTA found that genetic counseling was not

covered by 18 commercial companies offering

individual coverage and 17 offering medically

underwritten group coverage. Six commercial insurance companies offering individual policies and 16

that medically underwrite groups cover genetic

counseling only if it is medically indicated. Two

commercial companies offering each type of cover-

–25–

297-912 0 - 92 - 3 : QL 3
26 ● Genetic Tests and Health Insurance: Results of a Survey

Table 4-l-Reimbursement for Genetic Tests and Genetic Counseling

At Medically

patient indicated

Question Respondent request oniy Not revered No responsea

Do your standard Individual policles and medically underwritten

pollcies provide coverage for:

Individual pollcies

Carrier tests for CF?

Carrier tests for Tay-Sachs?

Carrier tests for sickle

Cell trait?

Prenatal tests for CF?

Prenatal tests for

Tay-Sachs?

Prenatal tests for

sickle cell anemia?

Prenatal tests for

Down syndrome?

Genetic counseling?

Commercials

HMOS

BC/BS plans-ub

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BCLBS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BCLBS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

age (individual and medically underwritten) reimburse for genetic counseling performed at patient

request (table 4-l). Similar results for BC/BS plans

and HMOS are also presented in table 4-1.

COVERAGE FOR CYSTIC

FIBROSIS CARRIER TESTS

In contrast to questions that inquire about what the

respondent’s company policy would be, respondents

were also asked whether they were aware if their

organization had ever actually reimbursed for CF

carrier tests. Regardless of the type of respondent,

CF carrier testing has been reimbursed at roughly the

same frequency for all (table 4-2). For commercial

insurers, 11 of the 51 respondents (22 percent) said

their companies had reimbursed for such tests, and

35 respondents (69 percent) indicated their companies had not. Of the 23 HMOS that responded to the

OTA survey, 7 (30 percent) had reimbursed for CF

carrier testing, and 14 (61 percent) had not. Of the 29

BC/BS plans represented by the underwriter survey,

7 (24 percent) had reimbursed for CF carrier testing,

and 18 (62 percent) had not. Five of the 18 (28

percent) BC/BS plans represented by a medical

director survey had reimbursed for CF carrier

testing, and 12 (67 percent) had not.
Chapter 4-Coverage and Reimbursement . 27

Table 4-l—Reimbursement for Genetic Tests and Genetic Counseling Continued

At Medically

patient indicated

Question Respondent request only Not covered No responsea

Medically underwritten groups

Carrier tests for CF?

Carrier tests for Tay-Sachs?

Carrier tests for sickle

cell trait?

Prenatal tests for CF?

Prenatal tests for

Tay-Sachs?

Prenatal tests for

sickle cell anemia?

Prenatal tests for

Down syndrome?

Genetic counseling

Commercials

HMOS

BC/BS planS-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

Commercials

HMOS

BC/BS plans-U

BC/BS plans-M

a Percentages may not add to 100 due to rounding.

bBC/BS plans represents the underwriter population and BC/BS plans-M, the medical director Population.

SOURCE: Office of Technology Assessment, 1992.

ECONOMIC ANALYSIS OF

GENETIC TESTS

To determine whether insurance companies have

looked into the economic implications of various

genetic tests, OTA asked if companies had ever

conducted an economic analysis of the costs and

benefits of various testing schemes. OTA found that

no commercial insurer had conducted an economic

analysis of the costs and benefits of carrier or other

genetic tests as part of applicant screening. In

addition, no commercial company had conducted an

economic analysis of the costs and benefits of

genetic counseling of carriers who are covered. One

commercial company reported it had done an

analysis of the costs and benefits of carrier tests as

part of prenatal coverage, but 48 of 51 companies

had not (table 4-3).

Survey respondents from HMOS had not conducted an economic analysis of the costs and

benefits of carrier testing for either applicant screening or prenatal coverage, No economic analysis had

been conducted by HMOS on genetic testing for

applicant screening. One company conducted an

economic analysis of the costs and benefits of

genetic counseling of carriers who are covered.

Similar results were found for BC/BS plans. One

of the 29 BC/BS plans represented by an underwriter
28 ● Genetic Tests and Health Insurance: Results of a Survey

Table 4-2-Coverage for Cystic Fibrosis

Carrier Tests

Respondent Yes No No responsea

Commercials . . . . . . . . 11 (22%) 35 (69%) 5 ( 9%)

HMOS . . . . . . . . . . . . . . 7 (30%) 14 (61%) 2 ( 9%)

BC/BS plans-Ub

. . . . . . 7 (24%) 18 (62%) 4 (14%)

BC/BS plans-M . . . . . . 5 (28%) 12 (67%) 1 ( 5%)

a Percentages may not add to 100 due to rounding.

bBC/BS plans-u represents the underwriter population and BC/BS plansM, the medical director population.

SOURCE: Office of Technology Assessment, 1992.

survey had conducted an economic analysis of the

costs and benefits of genetic counseling of carriers

who are covered, and 1 had conducted an economic

analysis of carrier testing as part of prenatal coverage. None of the BC/BS plans represented by the

underwriter survey had conducted an economic

analysis of carrier or genetic testing as a part of

applicant screening.

One of the 18 BC/BS plans represented by the

medical director survey had conducted an economic

analysis of carrier testing as part of prenatal coverage. Otherwise, none of the medical directors at the

responding BC/BS plans had conducted an economic analysis of carrier or genetic testing as part of

applicant screening, or of genetic counseling of

carriers who are covered.

PERSPECTIVES ON FUTURE

REIMBURSEMENT FOR

GENETIC TESTS

As new genetic tests come on line, will insurers

alter their claims payment practices? When asked if

they would alter claims payment practices in the

next 5 years, nearly half of commercial insurers (23

of 51; 45 percent) considered it ‘‘very unlikely,”

while one quarter (12; 24 percent) found it “somewhat likely”; only two companies thought it was

likely (table 4-4). When commercial insurers were

asked to project ahead a decade, 23 of 51 companies

responded that it would be very or somewhat likely

that their company would alter claims payment

practices as new genetic tests came on line; 28

companies thought it would be somewhat or very

unlikely.

Underwriters from 10 BC/BS plans responded it

was ‘‘somewhat likely” that claims payment practices would be altered as new genetic tests came on

line, 9 thought it ‘‘somewhat unlikely’ and 7

thought it was “very unlikely.” More BC/BS

underwriters thought it was ‘‘somewhat likely” (11

of 29) in 10 years. Six BC/BS plans represented by

an underwriter survey thought it was “very likely”

and seven thought it ‘‘very unlikely. ”

Table 4-3-Economic Analyses of Genetic Tests and Genetic Counseling by Insurers

Question Respondent Yes No No responsea
Chapter 4-Coverage and Reimbursement ● 2 9

Medical directors from 4 of 18 BC/BS plans

responded that it was ‘‘somewhat likely’ that

claims payment practices would be altered as new

genetic tests came on line. However, nine medical

directors from BC/BS plans thought it was “somewhat unlikely’ that payment practices would be

altered. In 10 years, seven underwriters from BC/BS

plans thought it was “somewhat likely” and six

thought it was “somewhat unlikely” (table 4-4).

Seven of 23 HMOS thought it was “very likely”

or “somewhat likely” that they would alter their

claims payment practices as new genetic tests came

on line, nine HMOS thought it would be “very

unlikely” and five responded it would be “somewhat unlikely. ” In 10 years, only two HMOs

thought it would be “very likely” they would alter

claims payment practices, five HMOS responded it

would be ‘somewhat likely, ’ eight thought it would

be “somewhat unlikely” and five thought it would

be “very unlikely.”

CHAPTER 4 REFERENCES

1. U.S. Congress, Office of Technology Assessment,

Cystic Fibrosis and DNA Tests: Implications of

Carrier Screening, OTA-BA-532 (Washington, DC:

U.S. Government Printing Office, August 1992).

2. U.S. Congress, Office of Technology Assessment,

Genetic Counseling and Cystic Fibrosis Carrier

Screening-Results of a Survey, OTA-BP-BA-97

(Washington, DC: U.S. Government Printing Office,

September 1992).

Table 4-4—Projected Reimbursement Practices by Insurers in 5 and 10 Years

Very Somewhat Somewhat Very

Question Respondent likely likely unlikely unlikely No responsen
Chapter 5

General Attitudes Toward Genetic Tests and Information

Besides current or anticipated reimbursement

practices for genetic tests, OTA also asked several

questions to gauge health insurers’ general attitudes

toward genetic tests and genetic information. This

chapter reports results from these questions. Additionally, general attitudes of respondents can be

gleaned from the verbatim comments offered by

some respondents, presented in appendix B.

IMPACT OF GENETIC TESTS ON

BUSINESS PRACTICES

As genetic tests become widely available, one

important consideration for insurers will be the

financial impact such tests might have on their

business. OTA asked survey participants about

whether they believed certain scenarios involving

the availability of genetic tests would lead to a

negative financial impact for their company.

The majority of commercial insurers (30 of 51; 59

percent) said a negative financial impact would not

occur if genetic tests were widely available to the

medical community. A majority of chief underwriters at Blue Cross and Blue Shield (BC/BS) plans (20

of 29; 69 percent) responded similarly, as did 6 of 18

medical directors at BC/BS plans (33 percent).

Respondents from health maintenance organizations

(HMOS), however, were equally divided in their

opinions of whether widespread availability of

genetic tests to the medical provider community

would result in a negative financial impact for their

HMOS (table 5-l).

In contrast, table 5-1 shows that a clear majority

of respondents from commercial insurers, BC/BS

plans, and HMOS thought a negative financial

impact would likely occur if genetic tests were

widely available, but had constraints on insurers’

access to the results. Similarly, a majority of survey

respondents from all populations clearly thought a

negative financial impact would result for their

companies if the availability of genetic tests resulted

in adverse claims or underwriting results due to

adverse selection (table 5-l). A handful of respondents among the total survey population also wrote in

that a negative financial impact also would be likely

if genetic tests became mandated benefits for which

they would not ordinarily have reimbursed.

ATTITUDES TOWARD

GENETIC INFORMATION

As discussed in chapter 3, health insurers that

offer individual or medically underwritten group

policies clearly weigh several factors in determining

both insurability and rating. Included among the

factors that respondents considered “very importable 5-1—impact of Genetic Tests on Insurers

Question Respondent Yes No No response~

Under what conditions would a

negative financial impact be likely

to occur for your company (check

all that apply):

Widespread availability of Commercials

genetic tests to the medical HMOS

provider community.

BC/BSplans-Ub

BC/BS plans-M

Widespread avdlability of Commercials

genetic tests with constraints HMOS

on insurers’ access to BC/BS plans-U

results. BC/BS plans-M

Adverse claims or under- Comrnercials

writing results from HMOS

antiselection. BC/BS plans-U

BC/BS plans-M

19 (37%)

10 (44%)

7 (24%)

6 (33%)

34 (67%)

16 (70%)

17 (59%)

11 (61%)

2 ( 7%)

1 ( 6%)
32 ● Genetic Tests and Health Insurance: Results of a Survey

Table 5-2-Genetic Information as Medical Information or Preexisting Conditions

Agree Agree Disagree Disagree

Question Respondent strongly somewhat somewhat strongly No responsee

a percentages may not add to 100 due to rounding.

bBC/BS plans-U represents the chief underwriter population and BC/BS plans-M, the medical director population.

SOURCE: Office of Technology Assessment, 1992.

Table 5-3-General Attitudes of Insurers Toward Genetic Information and Genetic Tests

Agree Agree Disagree Disagree

Statement Respondent strongly somewhat somewhat strongly No responsea

SOURCE: Office of Technology Assessment, 1992.

tant’ or “important,’ were personal medical history of significant conditions, family medical history of significant conditions, and carrier risk for

genetic disease-although the importance respondents placed on any single factor varied. Many, in

fact, considered certain factors unimportant or never

used them in decisionmaking.

Overall, how do health insurers view genetic

information, regardless of the source (i.e., a positive

test or elevated risk for carrier status or disease

because of a known family history)? Results from

OTA’s survey found a majority of respondents, both

as an aggregate population and as individual subsets,

agreed with the statement, ‘‘Genetic information is

no different than other types of medical information” (table 5-2). Underscoring this finding are

results that the majority of health insurers, collectively, agree ‘‘strongly’ or “somewhat” that genetic conditions such as cystic fibrosis (CF) or

Huntington disease are preexisting conditions, but

that carrier status for diseases such as Tay-Sachs or

CF is not a preexisting condition (table 5-2).

Third-party payers already use genetic information in making decisions about individual policies or

medically underwritten groups, and health insurers

clearly believe it is fair for them to have access to

information known to the applicant. Survey respondents were asked whether ‘an insurer should have the

option of determining how to use genetic information in determiningg risks.” A majority of all

respondents agreed strongly or somewhat with this

statement (table 5-3).

OTA also sought the reactions of commercial

insurers, HMOS, and BC/BS plans to a hypothetical

situation based on a real life case. Respondents were

asked to indicate whether they “agree” strongly, ”
Chapter S---General Attitudes Toward Genetic Tests and Information ● 33

‘‘agree somewhat, “ “disagree somewhat,” or “disagree strongly,’ with:

Prenatal diagnosis indicates the fetus is affected

with cystic fibrosis; the couple decides to continue

the pregnancy. The health insurance carrier, which

paid for the tests, informs the couple they will have

no financial responsibility for the CF-related costs

for the child.

For commercial vendors, three medical directors (6

percent) agreed strongly or somewhat. Thirteen

individuals (25 percent) in this population disagreed

somewhat and 34 (67 percent) disagreed strongly.

Among medical directors at HMOS, 3 respondents

(13 percent) agree to some extent, but 18 respondents (78 percent) disagreed, 15 (65 percent) of them

strongly. For chief underwriters of BC/BS plans, six

respondents agreed (21 percent), either strongly or

somewhat. Eight BC/BS chief underwriters (28

percent) indicated they disagreed somewhat, and 14

(48 percent) disagreed strongly. Among medical

directors of BC/BS plans, 1 (6 percent) agreed

strongly, 1 (6 percent) agreed somewhat, and 15 (84

percent) disagreed strongly or somewhat.

USE OF GENETIC TESTS

Health insurers do not need genetic tests to find

out genetic information. Currently, it is less expensive to ask a question or request medical records, and

applicants disclose genetic information as part of the

battery of questions they respond to in personal and

family history inquiries. OTA is unaware of any

insurer who currently underwrites individual or

medically underwritten groups and requires carrier

or presymptomatic tests (e.g., for Huntington or

adult polycystic kidney diseases) (1,2), although

OTA’s survey findings indicate that insurers generally believe that it is fair for them to use genetic tests

to identify those at increased risk of disease, and that

they should decide how to use that information in

risk classification (table 5-3). Thus, what about the

possibility of requiring genetic tests as a condition of

coverage in the future?

Even a decade from now, OTA’s survey found

that the majority of respondents do not expect to

require genetic tests of applicants-whether or not

they have a family history of serious genetic

conditions-nor do they anticipate requiring carrier

assays. Requiring carrier screening as a condition of

consideration for insurance is viewed as even more

remote than mandating genetic assays for those who

have family histories of serious disorders (table 5-4).

For example, OTA found that a minority of

commercial insurers who responded believe it will

be “very likely” (2 respondents; 4 percent) or

“somewhat likely” (17 respondents; 33 percent)

that in 10 years they will require genetic testing for

applicants who have a family history of serious

conditions. No BC/BS chief underwriter considered

it ‘‘very likely’ that its plan would require genetic

testing in the next decade for applicants who had

family histories of serious disorders. Medical directors at BC/BS plans were of a similar opinion: No

medical director viewed mandatory genetic testing

of applicants with family histories as very likely

before the turn of the century (table 5-4).

Of medical directors at HMOS, 3 of 23 (13

percent) thought their HMO would require applicants to have a genetic test if a family history of a

serious disorder existed, and 5 others (22 percent)

said they considered it “somewhat likely ” tests

would be required in this manner-again, in the next

10 years. A similar distribution of responses was

revealed when respondents were queried about

requiring carrier tests for applicants at risk of passing

on serious genetic conditions to their offspring (table

5-4).

Few respondents believe their company will

require genetic tests in either 5 or 10 years, but what

about optional testing? Commercial health insurers

and BC/BS plans do not anticipate that optional

testing or screening will be part of their company’s

policy in 5 or 10 years. It is interesting to note that

a majority of HMO-based medical directors who

responded to OTA’s survey said they considered it

“very likely’ or ‘‘somewhat” likely that their

HMO would offer optional genetic testing and

carrier testing in 10 years (12 respondents; 52

percent) (table 5-4). The difference in response

between the HMO population versus the commercial

insurers and BC/BS plans could reflect HMOS’

longer standing history with and emphasis on

managed and preventive care.

Thus, over the next decade, OTA’s survey indicates the vast majority of health insurers that offer

individual coverage or medically underwrite groups

do not anticipate requiring applicants to undergo

genetic screening for disease, predisposition, or

carrier status. Thus, whether or not genetic information is available to health insurers hinges on whether
34 ● Genetic Tests and Health Insurance: Results of a Survey

Table 5-4-Projected Use of Genetic Tests by Insurers in 5 and 10 Years

Very Somewhat Somewhat

Question

Very

Respondent likely likely unlikely unlikely No responsea

Require genetic testing for

applicants with familiy

histories of serious

conditions?

Require carrier tests for

applicants at risk of

transmitting serious genetic

disease to offspring?

Require genetic testing for

appicants with no known risk

of genetic disease?

Offer optional genetic

testing and carrier

testing?

SOURCE: Office of Technology Assessment, 1992.

individuals who seek personal policies, or are part of

medically underwritten groups, become aware of

their genetic status because of general family

history, because they have sought a genetic test “

because of family history, or because they have been

screened in some other context (2). Even then, a

majority of respondents to OTA’s survey reported 2.

they thought it “somewhat unlikely” or “very

unlikely” that they would be using genetic information for underwriting (table 5-5).

CHAPTER 5 REFERENCES

Raymond, H. E., Health Insurance Association of

America, Washington, DC, personal communication,

December 1991.

U.S. Congress, Office of Technology Assessment,

Cystic Fibrosis and DIVA Tests: Implications of

Carrier Screening, OTA-BA-532 (Washington, DC:

U.S. Government Printing Office, August 1992).
Chapter 5 General Attitudes Toward Genetic Tests and Information ● 35

Table 5-5-Projected Use of Genetic Information by Insurers In 5 and 10 Years

Very Somewhat Somewhat Very

Question Respondent likely likely unlikely unlikely No responsea

How likely do you think It is that your

company/HMO will In the next 5 years:

In the next 10 years:
Appendix A

Survey Method

OTA conducted and managed all aspects of the survey,

with input and advice on the survey instrument and study

design from a contractor, industry officials, the Advisory

Panel, and workshop participants.

Study Design

The OTA survey of health insurers was conducted by

mail from June 21 to September 29, 1991. The general

approach was similar to a 1987 survey OTA conducted for

the report Medical Testing and Health Insurance (4,5),

although the target population differed slightly, as did the

method of ensuring anonymity and confidentiality.

Survey Populations

The overall survey population derived from three

sources. The commercial health insurer population was

obtained from a Health Insurance Association of America

HIAA) list of member companies that offer policies to

either individuals or medically underwritten groups. The

Blue Cross and Blue Shield (BC/BS) survey population

was derived from the BC/BS Association’s directory (l),

and the health maintenance organization (HMO) population was derived from the Group Health Association of

America (GHAA) 1991 National Directory of HMOs (2).

For the commercial insurers, OTA sent a copy of the

survey and an HIAA letter of endorsement to medical

directors of the 225 commercial health insurers identified

by HIAA as those that offered either individual or

medically underwritten group coverage. The list OTA

obtained was 4 years old and in that time well over half

of those companies had stopped offering individual

coverage (3). The reported response rate for commercial

insurers reflects those respondents who returned surveys

stating they did not offer either type of coverage, but

makes no adjustment for nonrespondents who might also

not offer such coverage.

Both the chief underwriter and the chief medical

director at 72 of 73 BC/BS plans (Puerto Rico was

excluded) were sent surveys; a letter of endorsement from

the national BC/BS Association also accompanied this

survey. Finally, OTA sent surveys to medical directors at

the 50 largest HMOS, as well as to an additional 28 plans

that were not among the 50 largest U.S. plans, but were the

largest HMO within a State or the largest by HMO model

type. (Four HMO model types exist: the staff, group,

network, and independent practice association model

plans.)

A followup letter was mailed to those whose replies

were not received within 3 weeks of the first mailing.

Questionnaire Development

Three separate survey questionnaires were developed

to account for slight variations in the types of products

each population offers, but the substance of the questions

was the same (app. C). The instruments contained some

items comparable to the 1987 OTA survey performed for

Medical Testing and Health Insurance (4). Representatives of HIAA, BC/BS Association, and GHAA reviewed

multiple drafts of the questionnaires and provided input

on industry practices.

Confidentiality

A respondent identification number was placed on the

last page of each questionnaire. This permitted improved

sample tracking and allowed identification of duplicate

returns. The numbered sticker was affixed using a peel-off

label that could be removed by respondents who wished

to remain anonymous. Respondents were encouraged to

leave the peel-off label on the survey and informed that it

would be removed after receipt. After OTA received the

questionnaires, the peel-off labels were removed, making

the data both anonymous and confidential.

Sample Disposition

Fifty-one commercial insurers that underwrite individual or medically underwritten groups responded. An

additional 81 commercial insurance companies responded

that they no longer wrote either type of policy. The overall

response rate among the 225 organizations was 59

percent. Of the 72 BC/BS surveys sent out, 29 chief

underwriters completed a survey (40 percent response

rate), as did 18 chief medical directors (25 percent

response rate). Of the 78 surveys sent to HMOS, 43

surveys were returned (55 percent response rate); 20 of

these respondents offered neither individual nor medically underwritten groups.

1.

2.

3.

Appendix A References

Blue Cross and Blue Shield Association Directory

(Chicago, IL: Blue Cross and Blue Shield Association,

1990).

Group Health Association of America, 1991 National

Directory (Washington, DC: GHAA, 1991).

Raymond, H., Health Insurance Association of America, Washington DC, personal communication, December 1991.

-37-
38 ● Genetic Tests and Health Insurance: Results of a Survey

4. U.S. Congress, Office of Technology Assessment, 5.

AIDS and Health Insuranc-An OTA Survey, NTIS

PB88-170204 (Springfield, VA: National Tchnical

Information Service, February 1988).

U.S. Congress, Office of Technology Assessment,

Medical Testing and Health Insurance, OTA-H-384

(Washington, DC: U.S. Government Printing Office,

August 1988).
Appendix B

Qualitative Comments From the Survey

Space was provided at the end of the questionnaire for

any general comments a respondent wished to make.

Additionally, several respondents wrote opinions, concerns, and suggestions related to an item in the margin.

These open-ended comments of the survey participants

provide additional detail and context on current attitudes

and concerns among health insurers about genetic tests

and genetic information. Where necessary for clarification, bracketed text has been added by OTA.

1.

2.

3.

4.

5.

6.

Commercial Health Insurers

So far so good. As long as no one [i.e., other insurance

companies] is testing we are not at risk beyond that

contemplated by our rate structure. As soon as genetic

predisposition is employed on a widespread basis we

will be forced to follow suit.

We currently do not employ genetic testing for

underwriting. However, if it ever becomes a nationally accepted policy, we would utilize it judiciously in

order to remain competitive.

Genetic testing should be on a level playing field (i.e.,

applicants and insurers should have equal access to

the same information to prevent antiselection).

Considering the thousands of other significant medical impairments insurance companies must contend

with, the incidence of genetically transmitted disease

is a relatively insignificant matter!

Individuals with genetic impairments should not be

excluded from health coverage. Federally subsidized

plans may be needed to supplement what is available

from commercial carriers.

Required genetic testing to obtain health insurance in

general will not be beneficial to applicants for health

insurance or to insurance companies. Rated group

premiums should be adequate in most cases to

compensate for extra risk. If an applicant at high risk

to serious genetic disease submits genetic test results

on his own which are favorable, then group premium

can be adjusted appropriately downward.

7. Our company has more than 1 million health insurance policies in force for individuals and families. The

great majority of these are guarantee-issue hospital

indemnity policies with waiting periods (ordinarily 1

year) for preexisting conditions. For this part of our

business, every applicant is eligible at standard rates.

I completed the questionnaire as it pertained to a much

smaller segment of our business. This is a medically

underwritten, hospital-medical-surgical policy with a

lifetime aggregate benefit, in most instances, of 1

million dollars. We will receive about 36,000 applications for this kind of policy in ’91. Underwriting is

performed from the application and APS [attending

physician statement] information. We do not use

paramedical exams or tests, and have no plans for

genetic testing. We are not an MIB member [Medical

Information Bureau, Inc.] .

8. If possibility of future disease is 100 percent from

testing we might consider using info for underwriting.

If it is only a lesser probability, then I doubt if we

could use that info.

9. Although incremental in its effect on indemnity

industry, the genetic testing referenced will ultimately

expand to numerous additional conditions. A broad

view of insurance industry cost/risk should be taken

from the inception to provide satisfactory protection

from additional burden to the premium paying public.

10. This questionnaire appears to me to be poorly

conceived and executed; many of the questions appear

to be unfairly loaded or betray an ignorance of

customary health insurance underwriting practices.

Genetic testing is an important societal issue, and

intellectually flawed and/or politically motivated

exercises seem unlikely to advance the public good in

this, or any other, area.

11. This survey appears entirely premature. The insurance

industry is not considering screening for genetic

diseases. No testing is available yet that is practical.

We just want to underwrite symptomatic genetic

conditions just like everything else.

12. As an insurer, we are not anxious to begin testing for

underwriting purposes; however, if an applicant has

already taken the test, it is critically important that we

have the opportunity to access the test results.

13. We have no plans to perform genetic tests on our

applicants. If, however, a genetic test has been done

it is extremely important that we know what the

applicant knows about his or her own condition.

Adverse selection against any one company could

jeopardize its financial status and ability to pay future

claims.

14. This was a lot of information you requested to be

answered in a relatively short period of time!

Blue Cross and Blue Shield Plans

1. Our answer regarding coverage of persons or families

at risk for serious genetic disorders is predicated on

-39 -
40 ● Genetic Tests and Health Insurance: Results of a Survey

our State-mandated requirement to offer some type of

coverage to all applicants.

2. Not all questions were completed since we currently

3

do not require testing of any kind or family history

information in our medical underwriting process. We

do not specifically inquire on the application for

coverage about genetic conditions listed in the survey.

However, applicants with these known conditions are

not considered standard risks and would be declined

coverage with our company. Payment for some

genetic testing is covered under some of our health

insurance policies depending on the diagnosis and if

the services are determined to be medically necessary.

The responses are a result of our “Corporate Medical

Policy Committees‘‘ input. Our corporation is nonprofit and is founded on a social/community mission

and responsibility. Therefore, we accept all applicants. Due to fiscal difficulties, we are considering

implementing a waiting period of one year even in our

group business. We will still accept all but apply the

waiting period.

4. Our position on treatment of genetic testing and

5.

6,

applying such information in our- underwriting-practices will be directly affected by the position of the

other insurers. This is necessary to assure that adverse

selection is avoided.

While I do not support insurer-required genetic

testing, I feel insurers must be permitted to use

applicant-initiated testing results on the same basis as

other medical information.

Currently we rider individuals with certain conditions. In 1992, we plan to stop “ridering” and begin

“risk adjusting premiums.’ At that time, we will

become much more concerned about genetic disorders. However, we do not anticipate requiring genetic

testing.

7.

8.

9.

10.

1.

This survey was answered with 1990 statistics; it

excludes LTC [long-term care] as a line of business.

The only “open enrollment” for individual plan

members is limited to noneligible group members;

Hawaii does not medically underwrite groups.

The questions asked do not take a number of factors

into account (i.e., it is not stated if currently covered,

requesting coverage, are symptoms and treatment

currently being rendered, etc.)

Our underwriting practices and decisions are highly

regulated by the State Department of Insurance, which

severely limits our ability to consistently apply sound

and equitable risk evaluation techniques.

The public should demand that health insurers and

employers follow their earlier mission of spreading

risk rather than avoiding risk. Additionally, coverage

for genetic testing should be provided if medically

necessary; criteria which probably need to be refined.

If my responses seem confusing, be aware that we ask

for medical histories from nongroup applicants [as a

method of collecting data], but we are resolute in

neither denying coverage nor rating surcharges for

high risk individuals. Of course, we don’t make a lot

of profit with these practices.

Health Maintenance Organizations

As an IPA-fee-for-service [independent practice association] HMO in our State, we can not exclude

preexisting conditions. Therefore, we are at a distinct

disadvantage with other competitors in the field who

are permitted such an approach. We therefore are

always experiencing adverse selection and show

hemophiliacs, AIDS patients, etc.—far in excess of

random population statistics.
Appendix C

Survey Instruments

As part of the 1992 assessment Cystic Fibrosis and each population, but the substance for all three questionDNA Tests: Implications of Carrier Screening, OTA ties was unchanged. The following are reproductions of

surveyed commercial health insurers that offer policies to the survey questionnaires. For Blue Cross and Blue Shield

individuals or medically underwritten groups, Blue Cross plans, identical surveys were sent separately to chief

and Blue Shield plans, and selected health maintenance underwriters and medical directors, but only the former is

organizations. The instruments were tailored slightly for reproduced.

-41–
..—.

42 ● Genetic Tests and Health Insurance: Results of a Survey

CONGRESSIONAL OFFICE OF TECHNOLOGY ASSESSMENT

SURVEY OF HEALTH INSURERS’ ATTITUDES AND PRACTICES

REGARDING GENETIC TESTING FOR CYSTIC FIBROSIS

Aim: MEDICAL DIRECTOR

e Respond bv July 15.1991

The Congressional Office of Technology Assessment (OTA) is contacting health insurers who offer

individual coverage in a national survey of attitudes and practices regarding cystic fibrosis screening. This

questionnaire has been directed to you as the person in your organization whose responsibilities include

medical decisionmaking. We request your assistance in answering some questions about genetic testing

and medical decisionmaking in your company. If you are not the Medical Director, we would appreciate

it if you would please forward the questionnaire to the appropriate person.

For the purposes of this survey, OTA has adopted the fallowing definitions:

By carrier testing we mean testing an unaffected individual to reveal the

possibility that off-spring may have a serious chronic condition or disease

(e.g., cystic fibrosis or sickle ceil disease).

By we mean testing applicants or policyholders for certain

in erited characteristics either presymptomatically to reveal future serious h

chronic disease (e.g., for Huntington’s disease or for risk oriented

Purpo_ses (e.9., predisposition to heart disease).I

This is an important study that has been requested by the U.S. Congress, and is designed to represent the

attitudes and practices of health insurers We need to know how insurers view the technologies of genetic

testing in terms of their current and future applications in health insurance.

Please read each question and mark the space that most nearly corresponds to your answer. Please feel

free to qualify your answers. Space has been provided at the end for comments and opinions that you feel

are not adequately represented by the survey questions. The survey responses will be kept strictly

anonymous as well as confidential.

PLEASE NOTE: This survey focuses on two health insurance ovulations-(1) Individuals who seek

insurance independently and without any association with an empl oyer or membership group of any kind;

and (2)underwritten groups ~ i.e., those groups whose members must be medically underwritten.

******************

Conversions should be excluded from your responses. In addition, we prefer that you exclude Medigap

insurance from your responses. If because of reporting or other reasons, you must include Medigap

policies, please check the box below:

[ ] YES, Medigap policies and statistics are included in our responses to this survey.
Appendix C Survey Instruments . 43

Do you offer coverage for either individuals or medically underwritten groups?

Yes (1)

No (2)

IF YOU ARE NOT OFFERING EITHER OF THESE TYPES OF COVERAGE, THIS COMPLETES

YOUR SURVEY. THANK YOU VERY MUCH. PLEASE RETURN IT IN THE PRE-ADDRESSED

POST-PAID ENVELOPE.

SECTION 1: INDIVIDUAL AND GROUP STATISTICS

Individual

Policies

Medically

Underwritten

Groups

1. What is the a proximate number of persons

that you curr ntly insure through: en1

2. What is the approximate number

of applications received b your company

per year for coverage under .

3. What portion of those applications are:

a. Accepted at standard rates

b. Covered with an exclusion waiver, but

standard premium

c. Coverd with. a rated premium, but not

exclusion waiver

d. Covered with an exclusion waiver and a

rated premium

e. Declined by your company

f. Other (SPECIFY)

TOTAL

%

%

%

%

%

%

%

1 00%

%

%

%

%

%

%

%

%

100%
44 ● Genetic Tests and Health Insurance: Results of a survey

SECTION 11: UNDERWRITING PRACTICES

4. For each category of coverage, please estimate the proportion of all health insurance applicants

from whom you require:

Individual Medically

Policies Underwritten

Groups

a A personal health history % %

b. A family health history % %

IF A FAMILY HISTORY IS REQUIRED, ON WHOM WOULD INFORMATION BE REQUESTED.

CHECK ALL THAT APPLY.

‘ spouse (1)

Parents 2)(

Grandparents (3)

Siblings (4) I Children (5)

. Other (SPECify) (6)

c. An attending physician statement (APS) % %

IF AN APS IS REQUIRED FOR ANY INDIVIDUALS, WHICH OF THE FOLLOWING WOULD

TRIGGER THE REQUIREMENT. CHECK AU THAT APPLY.

I I

Any Significant diagnosis or symptoms reported on application (1)

Selected diagnoses or symptoms reported on application (2)

An significant conditions reported in family history (3)

Selected conditions reported in family history (4)

M.I.B. report (5)

d. Physical exam: % %

IF AN EXAM IS EVER REQUIRED, WHICH OF THE FOLLOWING WOULD TRIGGER THE

REQUIREMENT. CHECK AU THAT APPLY.

Any significant diagnosis or symptoms reported on application (1)

Selected diagnoses or symptoms reported on application (2)

Any significant conditions reporded in family history (3)

Selected conditions reported in family history (4)

M.I.B. report (5)

Any significant diagnosis or symptoms identified in APS (6)

e. Blood or urine screens: % %
Appendix C-Survey Instruments ● 45

5. For each category of coverage, please indicate the importance of each of the following factors in

determining insurability (not in rating):

I = Very important; 2 = Important; 3= Unimportant; 4 = Never Used

Individual Medically

Policies Underwritten

Groups

a. Age

b. Occupation

c. Smoking status

d. Lifestyle

e. Sex

f. Financial/credit status

g. Personal medical history of

significant conditions

h. Family medical history of

significant conditions

i. Genetic predisposition to

significant conditions

j. Carrier risk for genetic diseases

6. How would you normally treat either an individual policy applicant or medically underwritten

groups that disclosed the following conditions in an examination(s) or application:

1 = Accepted with standard rates; 2 = Accepted with exclusion waiver at standard rates;

3 = Accepted with exclusion waiver at rated premium;

4 = Accepted without exclusion waiver but at rated premium; 5 = Declined

individual Medically

Policies Underwritten

Groups

a. Hypertension

b. Diabetes mellitus

c. Cerebrovascular disease

d. Hemophilia

e. Cystic fibrosis

f. Sicide cell anemia
— —

46 ● Genetic Tests and Health Insurance: Results of a Survey

SECTION Ill: GENETIC CONDITIONS

7. Does your company specifically inquire, for each category of coverage, about the following conditions in the application for health insurance in the personal history, family history, or neither

1 = Personal history only; 2 = Family history; 3 = Neither

Individual Medically

Policies Underwritten

Groups

a Hemophilia

b. Tay-Sachs

c. Huntington’s disease

d. Sickle cell anemia

e- Cystic fibrosis

f. Any other genetic disease (SPECIFY)

8. For individual policy applicants only how would the appication normally be treated if a policy

applicant was asymptomatic but had a family history :of:

1 = Accepted with standard rates; 2 = Accepted with exclusion waiver at standard rates;

3 = Accepted with exclusion waiver at rated premium;

4 = Accepted without exclusion waiver but at rated premium; 5 = Declined

individual

Policies

a Hemophilia

b. Tay-Sachs

c. Huntington’s disease

d. Sickle cell anemia

e. Cystic fibrosis

f. Duchenne muscular dystrophy

g. ADA deficiency (“Bubble Boy disease”)

h. Down Syndrome
Appendix C- Survey Instruments ● 47

9. For individual policy applicants only how would the coverage of a family member (e.g., spouse

or adopted child) be affected if the policy applicant was negative, but the family member was

asymptomatic but had a family history of:

1 = Accepted with standard rates; 2 = Accepted with exclusion waiver at standard rates;

3 = Accepted with exclusion waiver at rated premium;

4 = Accepted without exclusion waiver but at rated premium; 5 = Declined

Individual

Policies

a. Hemophilia

b. Tay-Sachs

c. Huntington’s disease

d. Sickle cell anemia

e. Cystic fibrosis

f. Duchenne muscular dystrophy

g. ADA deficiency (“Bubble Boy disease”)

h. Down Syndrome

10. Do your standard individual policies and medically underwritten policies provide coverage for:

1 = At patient request; 2 = On/y if medically indicated; 3 = Not covered

Individual Medically

Policies Underwritten

Groups

Carrier tests for

a Cystic fibrosis

b. Tay-Sachs

c. Sickle ceil trait

Prenatal tests for:

d. Cystic fibrosis

e. Tay-Sachs

f. Sickle cell anemia

g. Down Syndrome

h. Other (SPECIFY)

Genetic counseling
48. Genetic Tests and Health Insurance: Results of a Survey

II. How would individual policies and medically underwritten policies normally be affected by the

following findings:

1 = Accepted with standard rates; 2 = Accepted with exclusion waiver at standard rates;

3 = Accepted with exclusion waiver at rated premium;

4 = Accepted without exclusion waiver but rated premium; 5 = Declined

Individual Medically

Policies Underwritten

Groups

a. Presmptornatic testing reveals

the likelihood of a serious,

chronic future disease (e.g., for

Huntington’s disease)

b. Risk oriented testing reveals

that an individual carries

markers associated with a

serious, chronic future disease

(e.g., predisposition to heart

disease)

c. Carrier testing reveals the

possibility that off-spring may

have a serious, chronic condition

or disease

d. Prenatal diagnosis reveals

fetus affected with a serious,

chronic condition or disease

SECTION IV: GENERAL ATTITUDES

12. To your knowledge, has your company ever reimbursed for carrier testing for cystic fibrosis?

Yes (1)

No (2)

13. Has your company ever conducted an economic analysis of the costs and benefits of:

Yes No

a Carrier testing as part of applicant screening 1 2

b. Genetic counseling of carriers who are covered 1 2

c. Carrier testing as part of prenatal coverage 1 2

d. Genetic testing as part of applicant screening 1 2

14. Under what conditions would a negative financial impact be likely to occur for your company:

(CHECK AU THAT APPLY)

a Widespread availability of genetic tests to the medical/provider community (1)

b. Widespread availability of genetic tests with constraints on insurers’ access to the results (2)

c. Adverse claims or underwriting results from antiselection (3)

d. Other (SPECIFY) (4)
Appendix C-Survey Instruments . 49

15. How likely do you think it is that your company will:

very Somewhat Somewhat Very

Likely Likely Unlikely Unlikely

In the next 5 years:

a. Require genetic testing for applicants with family histories of serious

conditions 1

b. Require carrier tests for applicants

at risk of transmitting serious genetic 

diseases to offspring 1

c. Require genetic testing for applicants with no known risk to genetic

disease 1

d. Offer optional genetic testing and

carrier testing 1

e. Use information derived from genetic

tests for undewriting 1

f. Alter claims payment practices as

new genetic tests come on line 1

In the next 10 years:

g. Require genetic testing for applicants with family histories of serious

conditions 1 2 3 4

h. Require carrier tests for applicants

at risk of transmitting serious genetic

diseases to offspring 1 2 3 4

i. Require genetic testing for

applicants with no known risk to

genetic disease 1 2 3 4

j. Offer optional genetic testing and

carrier testing 1 2 3 4

k. Use information derived from genetic

tests for underwriting 1 2 3 4

1. Alter claims payment practices as

new genetic tests come on line 1 2 3 4

2 3 4

2 3 4

2

2

2

2

3

3

3

3

4

4

4

4
50 ● Genetic Tests and Health Insurance: Results of a Survey

16. Please indicate whether you:

Agree Agree Disagree Disagree

strongly somewhat Somewhat Strongly

a. It’s fair for insurers to use genetic

tests to “identify individuals with in

creased risk of disease. 1 2 3 4

b. An insurer should have the option of

determining how to use genetic information in determining isk s. r 1 2 3 4

c. Genetic conditions, such as cystic

fibrosis or Huntington’s disease, are

pre-existing conditions. 1 2 3 4

d. Carrier status for genetic condtions,

such as cystic fibrosis or Tay-Sachs,

are pre-existing conditions. 1 2 3 4

e. Genetic information is no different than

other types of medical information. 1 2 3 4

f. Prenatal diagnosis indicates the fetus

is affected with cystic fibrosis; the coupie

decide to continue the p regnancy.: The

health insurance carrier, w hich paid for

the tesks, informs the couple they will

have no financial responsibility for th e

cystic fibr~”s-reiat costs for the child. 1

g. Through prior genetic testing, the

husband is known to be a carrier for

cystic fibrosis. Before having children,

the wife seeks genetic testing for cystic

fibrosis . The insurance company

declines to pay for the testing , since

there is no history of cystic fibrosis in

her family. 1 2 3 4

3 4
Appendix C-Survey Instruments . 51

SECTION V: DEMOGRAPHICS

17. What is your job title?

18. Which of the fallowing lines of insurance does your company underwrite?

Health 1

Disability 2

Life 3

19. What percent of persons under health insurance policies issued by your company are in policies

classified as:

Self-insured Administration %

Individual %

Medically Underwritten Groups %

Large Groups %

TOTAL 100%
52 ● Genetic Tests and Health Insurance: Results of a Survey

Thank you very much for your cooperation in answering our questions. We would also like to give you an

opportunity to give us as any other opinions, concern% or suggestions related to genetic testing and

insurance that you feel our questions did not address These comments will be strictly anonymous but

may be incorporated in our report to Congress. Please write these comments below.

We have attached a peel-off identification number on the questionnaire. This is the only link between the

companies who were sampled and the questionnaires returned. We would prefer that you leave the

identification number on the questionnaire when you return it. Our staff will remove the label upon receipt,

making the questionnaire entirely anonymous. . no companies and question -

. naires will be retained. The label from the completed questionnaire is designed to eliminate your company

from those that we will have to recontact.

However, if this temporary identification makes you uncomfortable, then peel off the label before returning

the questionnaire. We appreciate your help and we want you to feel comfortable in participating in the

survey.

PEEL OFF LABEL WITH SAMPLE

IDENTIFICATION HERE

PLEASE RETURN THE QUESTIONNAIRE IN THE POSTAGE PAID RETURN ENVELOPE SENT WITH THE

QUESTIONNAIRE. IF THE ENVELOPE HAS BEEN LOST, THE RETURN ADDRESS IS:

Margaret Anderson

Biological Applications Program

Office of Technology Assessment

U.S. Congress

Washington, DC 20510-8025
Appendix C-Survey Instruments . 53

CONGRESSIONAL OFFICE OF TECHNOLOGY ASSESSMENT

SURVEY OF HMOS’ ATTITUDES AND PRACTICES

REGARDING GENETIC TESTING FOR CYSTIC FIBROSIS

ATTN: MEDICAL DIRECTOR

e Respond by July 19.1991

The Congressional Office of Technology Assessment (OTA) is contacting health insurers and HMOS who

offer individual coverage in a national survey of attitudes and practices regarding cystic fibrosis screening.

This questionnaire has been directed to you as the person in your organization whose responsibilities

include medical decisionmaking. We request your assistance in answering some questions about genetic

testing and medical decisionmaking in your company. If you are not the Medical Director, we would

appreciate it if you would please forward the questionnaire to the appropriate person.

For the purposes of this survey, OTA has adopted the fallowing definitions:

By carrier testing we mean testing an unaffected individual to reveal the

possibility that off-spring may have a serious chronic condition or disease

(e.g., cystic fibrosis or sickle cell disease).

By we mean testing applicants or Policyhdders for certain

inherited characteristics either presymptomatically to reveal future serious

chronic disease (e.g., for Huntington’s disease or for risk oriented

purposes (e.g., predisposition to heart disease .

This is an important study that has been requested by the U.S. congress and is designed to represent the

attitudes and practices of health insurers and HMOS. We need to know how insurers view the technologies

of genetic testing in terms of their current and future applications in health insurance.

Please read each question and mark the space that most nearly corresponds to your answer. Please feel

free to qualify your answers. Space has been provided at the end for comments and opinions that you feel

are not adequately represented by the survey questions. The survey responses will be kept strictly

anonymous as well as confidential.

PLEASE NOTE: This survey focuses on two HMO populations-(1) non-conversion selfpayers who seek HMO membership independency and. without any association with an employer or

membership group of any kind; and (2) i.e., those groups whose members

must be medically underwritten.

● ☛☛☛☛☛☛☛☛☛☛☛☛☛☛☛☛☛

Conversions should be excluded frorn your responses. In addition, we prefer that you exclude applicants

for supplemental Medicare coverage from your responses. If because of reporting or other reasons, you

must include Medicare policies, please check the box below:

[ ] YES, Medicare policies and statistics are included in our responses to this survey.
.

54 ● Genetic Tests and Health Insurance: Results of a survey

SECTION 1: BACKGROUND

1. Do you offer coverage for either self-paying individuals (other than on a conversion basis) or

medically underwritten groups?

Yes (1)

No (2)

IF YOU ARE NOT OFFERING EITHER OF THESE TYPES OF COVERAGE, THIS COMPLETES YOUR

SURVEY. THANK YOU VERY MUCH. PLEASE RETURN IT IN THE PRE-ADDRESSED POSTAGE-PAID

ENVELOPE.

2. Is your plan federally qualified? [ ] Yes (1) [ ] No (2)

If no, is Federal qualification pending? [ ] Yes (1) [ ] No (2)

If yes, do you have a non-federally qualified subsidiary [ ] Yes (1) [ ] No (2)

3. Does your plan have an open enrollment period (i.e., no medical screening) for self-payers?

[ ]Yes (1) [ ] No (2)

If yes, is it continuous? [ ] Yes(1) [ ] No (2)

4. Which model type is your plan? Check all that apply, but if more than one type is offered, indicate

which is primary, secondary, etc. by the number of patients covered.

Staff Model Plan

Group Model Plan

Network Model Plan

IPA Model Plan
Appendix C-Survey Instruments ● 55

SECTION 11: INDIVIDUAL AND GROUP STATISTICS

5.

6.

7.

What is the approximate number of persons

that you currently insure through:

What is the approximate number

of applications received by your company

per year for coverage under

What portion of those applications are:

a.

b.

c.

d.

e.

f.

Accepted at standard rates

Covered with an exclusion waiver, but

standard premium

Covered with a rated premium, but

not exclusion waiver

Covered with an exclusion waiver and

a rated premium

Declined by your company

Other (SPECIFY)

Individual Medically

Policies Underwritten

Groups

%

%

%

%

%

%

%

%

%

%

%

%

%

%

%

TOTAL 100% 1 00%

%
56 ● Genetic Tests and Health Insurance: Results of a Survey

SECTION Ill: UNDERWRITING PRACTICES

8. For each category of coverage, please estimate the proportion of ail HMO applicants from whom

you require:

Individual Medically

Policies Underwritten

Groups

a A personal health history % %

b. A family health history % %

IF A FAMILY HISTORY IS REQUIRED, ON WHOM WOULD INFORMATION BE REQUESTED.

CHECK ALL THAT APPLY.

“ spouse (1)

Parents 2)(

‘ Grandparents (3)

Siblings (4)

Children (5)

. Other (SPECIFY) (6)

c. An attending physician statement (APS) % %

IF AN APS IS REQUIRED FOR ANY INDIVIDUALS, WHICH OF THE FOLLOWING WOULD

TRIGGER THE REQUIREMENT. CHECK ALL THAT APPLY.

I I

Any significant diagnosis or symptoms reported on application (1)

Selected diagnoses or symptoms reported on application (2)

An significant conditions reported in family history (3)

Selectedconditions reported in iiy history (4)

M.I.B. report (5)

d. Physical exam: % %

IF AN EXAM IS EVER REQUIRED, WHICH OF THE FOLLOWING WOULD TRIGGER THE

REQUIREMENT. CHECK AULL THAT APPLY.

Any significant diagnosis or symptoms reported on application (1)

Selected diagnoses or symptoms reported on application (2)

, Any significant conditions reported in family history (3)

Selected conditions reported in family history (4)

M.i.B. report (5)

Any significant diagnosis or symptoms identified in APS (6)

e. Blood or urine screens: % %
Appendix C-Survey Instruments . 57

9. For each category of coverage, please indicate the importance of much of the following factors in

determining insurability (not in rating):

1 = Very impotiant; 2 = Important; 3= Unimportant; 4 = Never used

Individual Medically

Policies Underwritten

Groups

a. Age

b. Occupation

c. Smoking status

d. lifestyle

e. Sex

f. Financial/credit status

g. Personal medical history of

significant conditions

h. Family medical history of

signifcant conditions

i. Genetic predispositbn to

significant conditions

j. Carrier risk for genetic diseases

10. How woould you normally treat either an individual policy applicant or medically underwritten

groups that disclosed the fallowing conditions in an examination(s) or application:

1 = Accepted with standard rates; 2 = Accepted with exclusion waiver at standard rates;

3 = Accepted with exclusion waiver at rated premium;

4 = Accepted without exclusion waiver but at rated premium; 5 = Declined

Individual Medically

Policies Underwritten

Groups

a. Hypertension

b. Diabetes mellitus

c. Cerebrovascular disease

d. Hemophilia

e. Cystic fibrosis

f. Sickle ceil anemia
58 ● Genetic Tests and Health Insurance: Results of a Survey

SECTION IV: GENETIC CONDITIONS

11.

12.

Does your comany specifically inquire, for each category of coverage, about the fallowing conditions in the HMO application in the personal history, family history, or neither:

a

b.

c.

d.

e.

f.

1 = Personal history only; 2 = Family history; 3 = Neither

individual Medically

Policies Underwritten

Groups

Hemophilia

Tay-Sachs

Huntington’s disease

Sickle ceil anemia

Cystic fibrosis

Any other genetic disease (SPECIFY)

For individual policy applicants only how would the application normally be treated if a policy

applicant was asymptomatic but had a family history of:

1 = Accepted with standard rates; 2 = Accepted with exclusion waiver at standard rates;

3 = Accepted with exclusion waiver at rated premium;

4 = Accepted without exclusion waiver but at rated premium; 5 = Declined

Individual

Policies

a Hemophilia

b. Tay-Sachs

c. Huntington’s disease

d. Sickle cell anemia

e. Cystic fibrosis

f. Duchenne muscular dystrophy

g. ADA deficiency (“Bubble Boy disease”)

h. Down Syndrome
Appendix C-Survey Instruments . 59

13. For individual policy applicants only how would the coverage of a family member (e.g., spouse

or adopted child) be affected if the policy applicant was negative, but the family member was

asymptomatic but had a family history of:

1

a

b.

c.

d.

e.

f.

9.

h.

= Accepted with standard rates; 2 = Accepted with exclusion waiver at standard rates;

3 = Accepted with exclusion waiver at rated at premium;

4 = Accepted without exclusion waiver but at rated premium; 5 = Declined

Individual

Policies

Hemophilia

Tay-Sachs

Huntington’s disease

Sickle cell anemia

Cystic fibrosis

Duchenne muscular dystrophy

ADA deficiency (“Bubble Boy disease”)

Down Syndrome

14. Do your standard individual policies and medically underwritten policies provide coverage for:

1 = At patient request; 2 = Only if medically indicated; 3 = Not covered

Carrier tests for

a Cystic fibrosis

b. Tay-Sachs

c. Sickle cell trait

Prenatal tests for:

d. Cystic fibrosis

e. Tay-Sachs

f. Sickle cell anemia

g. Down Syndrome

h. Other (SPEClfY)

Individual Medically

Policies Underwritten

Groups

Genetic counseling
 ● Genetic Tests and Health Insurance: Results of a Survey

15. How would individual policies and medically underwritten policies normally be affected by the

following findings:

1 = Accepted with standard rates; 2 = Accepted with exclusion waiver at standard rates;

3 = Accepted with exclusion waiver at rated premium;

4 = Accepted without exclusion waiver but at rated premium; 5 = Declined

Individual Medically

Policies Underwritten

Groups

a Presymptomatic testing reveals

the likelihood of a serious,

chronic future disease (e.g., for

Huntington’s disease)

b. Risk oriented testing reveals

that an individual carries

markers associated with a

serious chronic future disease

(e.g., predisposition to heart

disease)

c. Carrier testing reveals the

possibility that off-spring may

have a serious, chronic condition

or disease

d. Prenatal diagnosis reveals

fetus affected with a serious,

chronic condition or disease

SECTION V: GENERAL ATTITUDES

16. To your knowledge, has your company ever reimbursed for carrier testing for cystic fibrosis?

Yes (1)

No (2)

17. Has your company ever conducted an economic analysis of the costs and benefits of:

Yes No

a Carrier testing as part of applicant screening 1 2

b. Genetic counseling of carriers who are covered 1 2

c. Carrier testing as part of prenatal coverage 1 2

d. Genetic testing as part of applicant screening 1 2

18. Under what conditions would a negative financial impact be likely to occur for your company:

(CHECK ALL THAT APPLY)

a Widespread availabilty of genetic tests to the medical/provider community (1)

b. Widespread availability of genetic tests with constraints on HMOS’ access to the results (2)

c. Adverse claims or underwriting results from antiselection (3)

d. Other (SPEClfY) (4)
Appendix C-Survey Instruments ● 61

19. How Iikely do you think it is that your HMO will:

Very Somewhat Somewhat Very

Likely Likely Unlikely Unlikely

In the next 5 years:

a. Require genetic testing for applicants with family histories of serious

conditions 1 2 4

b. Require carrier tests for applicants

at risk of transmitting serious genetic

diseases to offspring 1 2 4

c. Require genetic testing for applicants with no known risk to genetic

disease 1 2 4

d. Offer optional genetic testing and

carrier testing 1 2 4

e. Use information derived from genetic

tests for underwriting 1 2 4

f. Alter claims payment practices as

new genetic tests come on line 1 2 4

in the next 10 years:

g. Require genetic testing for applicants with family histories of serious

conditions 1 2 3 4

h. Require Carrier tests for applicants

at risk of transmitting serious genetic

diseases to offspring 1 2 3 4

i. Require genetic testing for

applicants with no known risk to

genetic disease 1 2 3 4

j. Offer optional genetic testing and

Carrier testing 1 2 3 4

k. Use information derived from genetic

tests for underwriting 1 2 3 4

1. Alter claims payment practices as

new genetic tests come on line 1 2 3 4

3

3

3

3

3

3
62 ● Genetic Tests and Health Insurance: Results of a Survey

20. Please indicate whether you:

Agree Agree Disagree Disagree

Strongly somewhat Somewhat Strongly

a. It’s fair for HMOS to use genetic

tests to identify individuals s with in d

creased risk of disease. 1

b. An HMO should have the option of

determining how to use genetic information in determining risks. 1

c. Genetic conditions,such as cystic

fibrosis or Huntington’s disease, are

pre-existing conditions. 1

d. Carrier status for genetic conditions,

such as cystic fibrosis or Tay-Sachs,

are pre-existing conditions. 1

e. Genetic information is no different than

other types of medical information. 1

f. Prenatal diagnosis indicates the fetus

is affected with cystic fibrosis; the couple

decide to continue the pregnancy . The

HMO, which paid for the tests, informs

the couple they will have no financial

responsibility for the cystic fibrosisrelated costs for the child. 1

g. Through prior genetic testing, the

husband is known to be a carrier for

cystic fibrosis. Before having children,

the wife seeks genetic testing for cystic

fibrosis The HMO declines to pay or

the testing, since there is no history of

cystic fibrosis in her family. 1

2

2

2

2

2

2

2

3

3

3

3

3

3

4

4

4

4

4

4

4
Appendix C-Survey Instruments . 63

SECTION Vl: DEMOGRAPHICS

21.

22.

23.

What is your job title?

Which of the fallowing lines of insurance does your company urderwrite?

Health 1

Disability 2

Life 3

What percent of persons under HMO policies issued by your company are in policles

as:

Self-insured Administration

Individual

Community-rated Groups

Experience-rated Groups

TOTAL

%

%

%

%

100%
64 ● Genetic Tests and Health Insurance: Results of a Survey

Thank you very much for your cooperation in answering our questions. We would also like to give you an

opportunity to give us as any other opinions, concerns or suggestions related to genetic testing and

insurance that you feel our questions did not address These comments will be strictly anonymous but

may be incorporated in our report to Congress. Please write these comments below.

We have attached a peel-off identification number on the questionnaire. This is the only link between the

companies who were sampled and the questionnaires returned. We would prefer that you leave the

identification number on the questionnaire when you return it. Our staff will remove the label upon receipt,

making the questionnaire entirely anonymous. . .

.

ill The label from the completed questionnaire is designed to eliminate your company

from those that we will have to recontact.

However, if this temporary identification makes you uncomfortable, then peel off the label before returning

the questionnaire. We appreciate your help and we want you to feel comfortable in participating in the

survey.

PEEL OFF LABEL WITH SAMPLE

IDENTIFICATION HERE

PLEASE RETURN THE QUESTIONNAIRE IN THE POSTAGE PAID RETURN ENVELOPE SENT WITH THE

QUESTIONNAIRE. IF THE ENVELOPE HAS BEEN LOST, THE RETURN ADDRESS IS:

Margaret Anderson

Biological Applications Program

Office of Technology Assessment

U.S. Congress

Washington, DC 20510-8025
Appendix C-Survey Instruments . 65

CONGRESSIONAL OFFICE OF TECHNOLOGY ASSESSMENT

SURVEY OF HEALTH INSURERS’ ATTITUDES AND PRACTICES

REGARDING GENETIC TESTING FOR CYSTIC FIBROSIS

e Respond by July 19.1991

The Congressional Office of Technology Assessment (OTA) is contacting health insurers who offer

individual coverage in a national survey of attitudes and practices regarding cystic fibrosis screening. This

questionnaire has been directed to you as the person in your organization whose responsibilities include

underwriting. We request your assistance in answering some questions about genetic testing and

underwriting in your company. If you are not the Chief Underwriter, we would appreciate it if you would

please forward the questionnaire to the appropriate person.

For the purposes of this survey, OTA has adopted the following definitions:

By carrier testing, we mean testing an unaffected individual to reveal the

possibility that off-spring may have a serious chronic condition or disease

(e.g., cystic fibrosis or sickle cell disease).

By genetic testing, we mean testing applicants or policyholders for certain

inherited characteristics either presymptomatically to reveal future serious

chronic disease (e.g., for Huntington’s disease or for risk oriented

purposes (e.g., predisposition to heart disease .)

This is an important study that has been requested by the U.S. Congress, and is designed to represent the

attitudes and practices of health insurers. We need to know how insurers view the technologies of genetic

testing in terms of their current and future applications in health insurance.

Please read each question and mark the space that most nearly corresponds to your answer. Please feel

free to quaify your answers. Space has been provided at the end for comments and opinions that you feel

are not adequately represented by the survey questions. The survey responses will be kept strictly

anonymous as well as confidential.

***************** ●

Conversions should be excluded from your responses. In addition, we prefer that you exclude Medigap

insurance from your responses. If because of reporting or other reasons, you must include Medigap

policies, please check the box below:

[ ] YES, Medigap policies and statistics are included in our responses to this survey.

************ 

Does your plan have an o n enrollment period?

\ \

YES (1)

\ \

NO (2)

If yes, is it continuous. YES (1) NO (2)
66 ● Genetic Tests and Health Insurance: Results of a Survey

SECTION 1: INDIVIDUAL AND GROUP STATISTICS

lndividual/Non- Medically Nongroup

group Policies Underwritten Open

Groups Enrollment

1. What is the approximate number of persons

that you currently insure through:

2. What is the approximate number

of applications received by your company

per year for coverage under:

3. What portion of those applications are:

a. Accepted at standard rates without exclusion waiver or waiting period % 0/0 0/0

b. Covered with an exclusion waiver, but

standard premium % % %

c. Covered with a waiting period, but

standard premium % % %

d. Covered with a rated/risk-adjusted

premium, but not exclusion waiver or

waiting period % %0 0/0

e. Covered with an exclusion waiver and a

rated/risk-adjusted premium % % %

f. Covered with a waiting period and a

rated/risk-adjusted premium % % %

g. Declined by your company % % %

h. Other (SPECIFY) % % %

% _ % %

% - % 0/0

TOTAL 100?40 100’%0 10070
Appendix C-Survey Instruments ● 67

SECTION II: UNDERWRITING PRACTICES

4. For each category of coverage, please estimate the proportion of all health insurance applicants

from whom you require:

lndividual/Non- Medically Nongroup

group Policies Underwritten Open

Groups Enrollment

a. A personal health history % % %

b. A family health history % % %

IF A FAMILY HISTORY IS REQUIRED, ON WHOM WOULD INFORMATION BE REQUESTED.

CHECK ALL THAT APPLY.

c. An attending physician statement (APS) % % %

IF AN APS IS REQUIRED FOR ANY INDIVIDUALS, WHICH OF THE FOLLOWING WOULD

TRIGGER THE REQUIREMENT. CHECK ALL THAT APPLY.

[ ] Any significant diagnosis or symptoms reported on application (1)

[ ] Selected diagnoses or symptoms reported on application (2)

[

Any significant conditions reported in family history (3)

Selected conditions reported in family history (4)

[ ] M.I.B. report (5)

d. Physical exam: % % 0/0

IF AN EXAM IS EVER REQUIRED, WHICH OF THE FOLLOWING WOULD TRIGGER THE

REQUIREMENT. CHECK ALL THAT APPLY.

Any significant diagnosis or symptoms reported on application (1)

Selected diagnoses or symptoms reported on application (2)

Any significant conditions reported in family history (3)

I

Selected conditions reported in family history (4)

M.I.B. report (5)

] Any significant diagnosis or symptoms identified in APS (6)

e. Blood or urine screens: % % 0/0

PLEASE ANSWER THE FOLLOWING QUESTIONS (#5-1 1) AS THEY APPLY TO YOUR MOST COMMONLY

PURCHASED PRODUCT. IS THIS PRODUCT (CHECK ONE):

Traditional (1

PPO (2)

HMO (3)
68 ● Genetic Tests and Health Insurance: Results of a Survey

5. For each category of coverage, please indicate the importance of each of the following factors in

determining insurability (not in rating):

1 = Very important; 2 = Important; 3 = Unimportant; 4 = Never used

lndividual/Non- MedicalIy

group Policies Underwritten

Groups

a. Age —

b. Occupation

c. Smoking status —

d. Lifestyle

e. Sex

f. Financial/credit status

g. Personal medical histoty of

significant conditions

h. Family medical history of

significant conditions

i. Genetic predisposition to

significant conditions

j. Carrier risk for genetic diseases

6. For each category of coverage, how would you normally treat these policies if they disclosed the

following conditions in an examination(s) or application:

1 = Accepted with standard rates; 2 = Accepted with exclusion waiver at standard rates;

3 = Accepted with waiting period at standard rates;

4 = Accepted with exclusion waiver at rated/risk-adjusted premium;

5 = Accepted without exclusion waiver or waiting period but at rated/risk-adjusted premium;

6 = Accepted with waiting period at rated/risk-adjusted premium; 7 = Declined

lndividual/Non- Medically Nongroup

group Policies Underwritten Open

Groups Enrollment

—

—

—

a. Hypertension

b. Diabetes mellitus

c. Cerebrovascular disease

d. Hemophilia

e. Sickle cell anemia
Appendix C-Survey Instruments ● 69

SECTION Ill: GENETIC CONDITIONS

7. Does your company specifically inquire, for each category of coverage, about the following conditions in the application for health insurance in the personal history, family history, or neither:

1 = Personal history only; 2 = Family history; 3 = Neither

lndividual/Non- Medically Nongroup

group Policies Undenrwritten Open

Groups Enrollment

a. Hemophilia

b. Tay-Sachs

c. Huntington’s disease

d. Sickle cell anemia

e. Cystic fibrosis

f. Any other genetic disease (SPECIFY)

8. For individual policy applicants only how would the application normally be treated if a policy

applicant was asymptomatic but had a family history of:

1 = Accepted with standard rates; 2 = Accepted with exclusion waiver at standard rates;

3 = Accepted with waiting period at standard rates;

4 = Accepted with exclusion waiver at rated/risk-adjusted premium;

5 = Accepted without exclusion waiver or waiting period but at rated/risk-adjusted premium;

6 = Accepted with waiting period at rated/risk-adjusted premium; 7 = Declined

lndividual/Nongroup Policies

a. Hemophilia

b. Tay-Sachs

c. Huntington’s disease

d. Sickle ceil anemia

e. Cystic fibrosis

f. Duchenne muscular dystrophy

g. ADA deficiency (“Bubble Boy disease”)

h. Down Syndrome
70 ● Genetic Tests and Health lnsurance: Results of a Survey

9. For individual policy applicants only how would the coverage of a family member (e. g., spouse

or adopted child) be affected if the policy applicant was negative, but the family member was

asymptomatic but had a family history of:

1 = Accepted with standard rates; 2 = Accepted with exclusion waiver at standard rates;

3 = Accepted with waiting period at standard rates;

4 = Accepted with exclusion waiver at rated/risk-adjusted premium;

5 = Accepted without exclusion waiver or waiting period but at rated/risk-adjusted premium;

6 = Accepted with waiting period at rated/risk-adjusted premium; 7 = Declined

lndividual/Nongroup Policies

a. Hemophilia

b. Tay-Sachs

c. Huntington’s disease

d. Sickle cell anemia

e. Cystic fibrosis

f. Duchenne muscular dystrophy

g. ADA deficiency (“Bubble Boy disease”)

h. Down Syndrome

10. For each category of coverage, do your standard policies provide coverage for:

1 = At patient request; 2 = Only if medically indicated; 3 = Not covered

lndividual/Non- Medically Nongroup

group Policies Underwritten Open

Groups Enrollment

Carrier tests for

a Cystic fibrosis

b. Tay-Sachs

c. Sickle cell trait

Prenatal tests for:

d. Cystic fibrosis

e. Tay-Sachs

f. Sickle cell anemia

g. Down Syndrome

h. Other (SPEClFY) —

Genetic counseling
Appendix C-Survey instruments ● 71

11. For each category of coverage, how would these policies normally be affected by the following

findings:

1 = Accepted with standard rates; 2 = Accepted with exclusion waiver at standard rates;

3 = Accepted with waiting period at standard rates;

4 = Accepted with exclusion waiver at rated/risk-adjusted premium;

5 = Accepted without exclusion waiver or waiting period but at rated/risk-adjusted premium;

6 = Accepted with waiting period at rated/risk-adjusted premium; 7 = Declined

lndividual/Non- Medically Nongroup

group Policies Underwritten Open

Groups Enrollment

a Presymptomatic testing reveals

the likelihood of a serious,

chronic future disease (e.g., for

Huntington’s disease)

b. Risk oriented testing reveals

that an individual carries

markers associated with a

serious, chronic future disease

(e.g., predisposition to heart

disease)

c. Carrier testing reveals the

possibility that off-spring may

have a serious, chronic condition

or disease

d. Prenatal diagnosis reveals

fetus affected with a serious,

chronic condition or disease

SECTION IV: GENERAL ATTITUDES

12. To your knowledge, has your company ever reimbursed for carrier testing for cystic fibrosis?

Yes (1)

No (2)

13. Has your company ever conducted an economic analysis of the costs and benefits of:

Yes No

a. Carrier testing as part of applicant screening 1 2

b. Genetic counseling of carriers who are covered 1 2

c. Carrier testing as part of prenatal coverage 1 2

d. Genetic testing as part of applicant screening 1 2

14. Under what conditions would a negative financial impact be likely to occur for your company:

(CHECK ALL THAT APPLY)

a. Widespread availability of genetic tests to the medical/provider community (1)

b. Widespread availability of genetic tests with constraints on insurers’ access to the results (2)

c. Adverse claims or underwriting results from antiselection (3)

d. Other (SPECIFY) (4)
72 ● Genetic Tests and Health Insurance: Results of a Survey

15. How likely do you think it is that your company will:

Very Somewhat Somewhat Very

Likely Likely Unlikely Unlikely

In the next 5 years:

a. Require genetic testing for applicants with family histories of serious

conditions 1

b. Require carrier tests for applicants

at risk of transmitting serious genetic

diseases to offspring 1

c. Require genetic testing for applicants with no known risk to genetic

disease 1

d. Offer optional genetic testing and

carrier testing 1

e. Use information derived from genetic

tests for underwriting 1

f. Alter claims payment practices as

new genetic tests come on line 1

In the next 10 years:

g. Require genetic testing for applicants with family histories of serious

conditions 1 2 3 4

h. Require carrier tests for applicants

at risk of transmitting serious genetic

diseases to offspring 1 2 3 4

i. Require genetic testing for

applicants with no known risk to

genetic disease 1 2 3 4

j. Offer optional genetic testing and

carrier testing 1 2 3 4

k. Use information derived from genetic

tests for underwriting 1 2 3 4

1. Alter claims payment practices as

new genetic tests come on line 1 2 3 4

3 4

3 4

3

3

3

3

4

4

4

4
Appendix C-Survey Instruments . 73

16. Please indicate whether you:

Agree Agree Disagree Disagree

Strongly Somewhat Somewhat Strongly

a. It’s fair for insurers to use genetic

tests to identify individuals with increased risk of disease. 1 2 3 4

b. An insurer should have the option of

determining how to use genetic information in determinining risks. & 1 2 3 4

c. Genetic conditions, such as cystic

fibrosis or Huntington’s disease, are

pre-existing conditions. 1 2 3 4

d. Carrier status for genetic conditions,

such as cystic fibrosis or Tay-Sachs,

are pre-existing conditions. 1 2 3 4

e. Genetic information is no different than

other types of medical information. 1 2 3 4

f. Prenatal diagnosis indicates the fetus

is affected with cystic fibrosis; the couple

decide to continue the pregnancy. The

health insurance carrier, which paid for

the tests, informs the couple they will

have no financial responsibility for the

cystic fibrosis-related costs for the child. 1 2

g. Through prior genetic testing, the

husband is known to be a carrier for

cystic fibrosis. Before having children,

the wife seeks genetic testing for cystic

fibrosis. The insurance company

declines to pay for the testing, since

there is no history of cystic fibrosis in

her family. 1 2

3 4
74 . Genetic Tests and Health Insurance: Results of a Survey

SECTION V: DEMOGRAPHICS

17. What is your job title?

18. Which of the fallowing lines of insurance does your company underwrite?

Health 1

Disability 2

Life 3

19. What percent of persons under health insurance policies issued by your company are in policies

classified as:

Self-insured Administration %

Individual %

Small Groups %

Large Groups %

TOTAL 100%
Appendix C--Survey Instruments . 75

Thank you very much for your cooperation in answering our questions. We would also like to give you an

opportunity to give us as any other opinions, concerns, or suggestions related to genetic testing and

insurance that you feel our questions did not address. These comments will be strictly anonymous but

may be incorporated in our report to Congress. Please write these comments below.

We have attached a peel-off identification number on the questionnaire. This is the only link between the

companies who were sampled and the questionnaires returned. We would prefer that you leave the

identification number on the questionnaire when you return it. Our staff will remove the label upon receipt,

making the questionnaire entirely anonymous. no linkage between companies and question-

. The label from the completed questionnaire is designed to eliminate your company

from those that we will have to recontact.

However, if this temporary identification makes you uncomfortable, then peel off the label before returning

the questionnaire. We appreciate your help and we want you to feel comfortable in participating in the

survey.

PEEL OFF LABEL WITH SAMPLE

IDENTIFICATION HERE

PLEASE RETURN THE QUESTIONNAIRE IN THE POSTAGE PAID RETURN ENVELOPE SENT WITH THE

QUESTIONNAIRE. IF THE ENVELOPE HAS BEEN LOST, THE RETURN ADDRESS IS:

Margaret Anderson

Biological Applications Program

Office of Technology Assessment

U.S. Congress

Washington, DC 20510-8025
Appendix D

Acknowledgments

OTA would like to thank the members of the advisory panel and external reviewers for their review of draft materials

related to this background paper during the course of the assessment, Cystic Fibrosis and DNA Tests: Implications of

Carrier Screening. In addition, OTA acknowledges the following additional reviewers and workshop participants for their

assistance in developing and reviewing drafts of the survey instrument:

Marsha Gold Harvie E. Raymond

Group Health Association of America Health Insurance Association of America

Washington, DC Washington, DC

Cystic Fibrosis, Genetic Screening, and Insurance

February 1, 1991

Norman Fost, Workshop Chair

University of Wisconsin School of Medicine

Madison, WI

Rob Bier

American Council of Life Insurance

Washington, DC

John M. Boyle (contractor)

Schulrnan, Ronca & Bucuvalas, Inc.

Silver Spring, MD

R. Alta Charo (contractor)

University of Wisconsin Law School

Madison, WI

Elizabeth A. Conway

Blue Cross and Blue Shield Association

Washington, DC

Jeffrey L. Fox (contractor)

Washington, DC

Barry R. Furrow

Widener University School of Law

Wilmington, DE

Robert M. Greenstein

University of Connecticut Health Center

Farmington, CT

Dennis Hodges

Group Health Association of America

Washington, DC

Nancy Kass

Johns Hopkins University

Baltimore, MD

Angele Khachadour

Hastings College of the Law

San Francisco, CA

Jude C. Payne

Health Insurance Association of America

Washington, DC

Robert J. Pokorski

North American Reassurance Co.

Westport, CT

–76-
Appendix E

Acronyms and Glossary

APS

BC/BS

DNA

GHAA

OTA

Acronyms

—attending physician statement

—Blue Cross and Blue Shield

-deoxyribonucleic acid

-Group Health Association of America

—Health Insurance Association of America

-Office of Technology Assessment

—Medical Information Bureau, Inc.

Glossary of Terms

Adverse selection: The tendency of persons with poorer

than average health expectations to apply for or

continue insurance to a greater extent than persons

with average or better health expectations. Also known

as ‘‘antiselection. ”

Allele: Alternative variants of a gene that occur at a given

site (e.g., at a site for eye color there might be alleles

resulting in blue or brown eyes); alleles are inherited

separately from each parent.

Carrier: An apparently unaffected individual who possesses a single copy of a recessive gene obscured by a

dominant allele; a heterozygote.

Community rating: A method of determining premium

rates based on the allocation of total costs without

regard to past group experience. Community rating is

required of federally qualified health maintenance

organizations.

Cystic fibrosis (CF): A life-shortening, recessive disorder affecting the respiratory, gastrointestinal, reproductive, and skeletal systems, as well as the sweat

glands. CF is caused by mutations in the CF gene that

affect the CF gene product, cystic fibrosis transmembrane conductance regulator (CITR). Individuals with

CF possess two mutant CF genes.

Cystic fibrosis carrier: An individual who possesses one

CF mutation and one normal CF gene. CF carriers

manifest no symptoms of the disorder. See carrier.

Cystic fibrosis carrier screening: The performance of

tests on persons for whom no family history of CF

exists to determine whether they have one aberrant CF

gene and one normal CF gene. See cystic fibrosis

screening.

Cystic fibrosis screening: The performance of tests to

diagnose the presence or absence of the actual disorder,

in the absence of medical indications of the disease or

a family history of CF. Many States screen newborns

for genetic disease, but only Colorado and Wisconsin

routinely screen for CF. See cystic fibrosis carrier

screening.

Deoxyribonucleic acid (DNA): The molecule that encodes genetic information. DNA is a double-stranded

helix held together by weak bonds between base pairs

of nucleotides.

DNA: See deoxyribonucleic acid.

Dominant: In genetics, referring to a situation where only

one copy of an allele is necessary for the effect (e.g.,

disease) to be expressed.

Genetic counseling: A clinical service involving educational, informational, and psychosocial element to

provide an individual (and sometimes his or her

family) with information about heritable conditions.

Genetic counseling is performed by genetics specialists, including physicians, Ph.D. clinical geneticists,

genetic counselors, nurses, and social workers.

Genetic test: An assay to reveal whether an individual has

an inherited disorder, predisposition to such a disorder,

or is a carrier for one.

Health maintenance organization (HMO): A health

care organization that serves as both payer and

provider of comprehensive medical services, provided

by a defined group of physicians to an enrolled,

fee-paying population.

Huntington disease: A chronic, dominant inherited

disorder characterized by involuntary movements of

the extremities and progressive dementia; age of onset

is usually between 40 and 50 years of age.

Open enrollment: A health insurance enrollment period

during which coverage is offered regardless of health

status and without medical screening. Open enrollment

periods are characteristic of some Blue Cross and Blue

Shield plans and health maintenance organizations.

Preexisting condition: A condition existing before an

insurance policy goes into effect and commonly

defined as one which would cause an ordinarily

prudent person to seek diagnosis, care, or treatment.

Prenatal testing: Assay performed after conception but

before birth-usually via amniocentesis or chorionic

villus sampling-to assess the status of the fetus.

Rated premium: A premium with an added surcharge

that is required by insurers to cover the additional risk

associated with certain medical conditions. Rated

premiums usually range from 25 to 100 percent of the

standard premium,

Recessive: In genetics, referring to a situation where two

copies of an allele are necessary for the effect (e.g.,

disease) to be expressed.

Sickle cell anemia: A recessive disorder affecting red

blood cell flow through the circulatory system, causing

complications in numerous organ systems. Sickle cell

anemia predominantly occurs in individuals of African

descent.

–77–
-

78 ● Genetic Tests and Health Insurance: Results of a Survey

Sickle cell trait: Sickle cell carrier status. dominan tly occurs among Jews of Eastern and Central

Single-gene disorder: Hereditary disorder caused by a European descent and populations in the United States

single gene (e.g., CF, Huntington disease, Tay-Sachs and Canada descended from French Canadian andisease, sickle cell anemia). cestors.

Tay-Sachs disease: A lethal, recessive disorder affecting Underwrite: The process by which an insurer determines

the central nervous system which results in mental whether and on what basis it will accept an application

retardation and early death. Tay-Sachs disease pre- for insurance.

* U.S. GOVERNMENT PRINTING OFFICE : 1992 0 297-912 : QL 3