that you're all here with us i want to say to my colleagues on the committee that i'm humbled and honored to have the chance to work with you and lead the subcommittee i hope to be worthy of your confidence and trust one of the very first things that i did when i was given this opportunity was to meet with my friend and colleague congressman kline from minnesota who will serve as the republican brand new member he and i have worked together on this committee as well as the armed services committee and i feel honored to have a chance to work with someone for whom i have so much respect and it is our i'm not sure our agenda that we welcome got to the business of the subcommittee fairly and in a way that benefits the people that we all represent there will certainly be times when we have bigger risk disagreements but i'm committed and i think i know congressman kline is committed to the notion that we will pursue many disagreements in a civil fair and responsible way and well possible we will find ways to work together i believe that the small running is a hearing that will focus on one of those ways where working together is very much within our reach  subcommittee is given responsibility for the issues that arise out of americans in the workplace whether it's their health insurance while they are working or retired whether it's the nature of their employment relationship with their employer the relationship between collective bargaining organizations and employers or the area of pension benefits for people whether they're in a union or not whether they're management labor or what have you this is a lot of responsibility that we have been given and i believe that when speaker pelosi took the gathered us from summer chairman of the subcommittee mr boehner and said that she wanted to proceed in the spirit of partnership rather than partisanship that's against hearing marks the first effort of what i hope of the many by our subcommittee to proceed in that spirit i believe there is an emerging five partisan consensus addressing the issues that we will address this morning that we're so honored to have chairwoman slaughter and congresswoman digger here to talk about i think there's a consensus in our country that when a person goes to apply for a job that he or she should not be denied a job because their family has a history of diabetes i think there's an emerging consensus in the country that when a woman is working for a company that she shouldn't have to pay more for her health insurance than her peers because there's a family history of breast cancer in her family i think there's an emerging consensus in the country that no person should be told they're going to get fired if they don't agree to a genetic test i think there's an emerging consensus in the country that if you have taken a genetic test and there is genetic information out there available to you it should only be given the information should only be given to people to whom you consent that it be given and the test should only be taken under circumstances in which you consent these principles were included in legislation which was identical to the legislation mr slaughter mrs they are talking about today for approved by the senate ninety eight to nothing president bush has strongly indicated that he is in support of these principles so i think this is an excellent place for us to start our efforts to find ways that we can work together and improve the conditions of americans in the workplace congratulations to you mr chairman you and i have had the opportunity to work together on this committee and the armed services point out and i found you always to be fair and forthright and i'm sure that that relationship will continue i'm looking forward to doing that work with you i do have to admit to you and to everyone that i would much prefer to be sitting in this chair the next chair however given that i'm happy to be sitting next to you and i do think that there will be opportunit us to work together and dance agenda for the american people in some cases not a cases of you know i have agreed we're just going to agree to to disagree i'm i think that this morning's hearing is important and i thank the chairman for moving forward with what i'm sure will be the regular order of business in the subcommittee in the committee on education and labor as a whole as we examine the range of issues within our subcommittee and be they labor health pensions  otherwise and as the chairman has pointed out there is a broad range of issues which will be addressing i hope that we'll be mindful of the importance of the hearing and the markup processes and that we will begin and continue any legislative journey with a close contemplat of the facts let me now turn to the issue before us today at this hearing protecting workers from genetic discrimination at the outset i think the title days here in nevada is the proposition that all members of the subcommittee as the chairman has pointed out republican or democrat would endorse namely that no employee should face discrimination on the basis of his or her genetic makeup indeed on any characteristic either than his or of qualifications for on the ability to do the job the idea that a person might face at adverse job consequences or risk their health insurance status because of the possibility that they might someday develop an illness is simply unacceptable nor should the fear of those consequences deter any individual from seeking the fullest and that's medical screening and treatment available i think these are points on which we can and will all agree i will say i'm not sure that the cases the made that imposition of a broad new federal mandate on employers insurers with respect to genetic discrimination is necessary we'll hear from witnesses today that many fear that their genetic information become public or may be used against them in some fashion i won't call that fear unfounded but i will say that before we consider broad reform for health insurance and employment laws when you determine whether there is a real problem here and if so which is the best way to solve it  claim of genetic discrimination brought by the e r c of which i'm aware and i think one of our witnesses today was in fact a point of in that case the matter was settled quickly and efficiently by the yellow sea which recovered two point two million dollars for the pla existing law again that is the only documented case of alleged criminal action vine employer in the private sector for which we have details but that was five years ago and since that time to my knowledge there has been no surge of lawsuits claiming  discrimination by employers or insurers is a growing problem despite the fact that our knowledge of the human genome and it is truly miraculous what we've been able to discover and access to that information has grown exponentially in that time indeed to the extent there was a concern with the actions of a single employer some would say the system worked exactly the way it should have again under existing law if you assume for the sake of argument that some legislative action is necessary and as i said to my mind the jury is still out on that question the question then becomes whether from this action should say if there are legitimate concerns that genetic information is being misused or otherwise present a risk it would seem a matter of simple common sense to target any solution to the actual problem to go after a mosquito with a machine gun and considering my past a career in the marine corps that's not necessarily a bad idea that's a grant from a school with a machine gun may not be the best way to solve the problem and almost surely work will create others s which i guarantee is sure as we're sitting here none of us have yet thought of in that light some of them suggested that with respect to health insurance and insurance coverage there may be greater consensus as to what legislative steps are helpful or necessary if that  the case a strong argument could be made for moving forward with insurance provisions on which there is agreement we can then more closely examine issues relating much employment and the broad use of genetic information in the workplace and then finally and i must assure all of you what i promised the chairman this will be the longest opening statement i will ever make as a ranking member but finally won today is an examination of the issue of genetic nondiscrimination generally we will soon hear from two of our colleagues and i'm excited to see them here today clean our good friend and committee colleague mrs biggert who i think is going to join us later in the hearing about one specific piece of legislation the genetic information nondiscrimination act i welcome their comments on a solution they have put forward i would say that as we approach this issue i hope we are mindful that the committee process and senate provide a forum for close examination of a bill with the goal of perfecting a legislative product and improving whatever bill if any ultimately comes before all of us on the floor of the house too often we hear quote the devil is in the details on an issue as important as this one it bears reminding that this committee is charged with making sure that the details are right i opened my comments by expressing my admiration for our chairman and i would close by saying the same rob i look forward to working with you and the members of this committee and i yield back john thank you very much for the compliment items percentage of the rules are there members of the committee are welcome to make opening statements without objection will be considered in the record section we can pursuant to the third committee rules which are incorporated by reference in the subcommittee members will be recognized for questioning in order of seniority for those present at the gavel thereafter members will be recognized in order of appearance at the hearing one of now turn to our colleagues who come to testify this morning let me commend them for taking a very difficult issue for negotiating with all of the different interests and conducting really an exhaustive and comprehensive process to produce a piece of legislation that i think is visionary but also very carefully balanced and i protecting want to say to cheer on the slaughter that her years of devotion to this cause i'm confident are going to come to fruition very very soon and with that i would recognize the chairwoman of the rules committee  years has enjoyed the sponsorship of most of committee chairs and i certainly want to say how wonderful is being rewarded places who work with much bigger both of us have toiled mightily in the field for twelve you let me thank you again and i hope i discussing this morning will lead to the timely and exciting package of a strong genetic nondiscrimination legislation that we've all been waiting for the genetic information nondiscrimination act or benign coverage to a healthy individual or charging that person higher premium based solely on a genetic predisposition to develop a disease plan time in the future and we're talking about thirty or forty years or in favor of nondiscrimination legislation along the lines they wrote and i quote the legacy of the nation has the potential to affect people's lives in terms of job insurance but there is another dimension as well wide spectrum of health related organizations and aircraft today we have over one hundred eighty one shows both democrats and republicans standing behind this veil the senate has passed it twice welcome home a member of our first committee mrs bigger crimes all right it will be joining us for the question period today and when the second panel comes off and we thank you mrs biggert for your efforts to address the very valid concerns of the business hearing and allowing me to participate and i also want to thank  subcommittee and the full committee to support this vital legislation this is right i was only address the public's fears for genetic discrimination and how it's a serious problem preventing americans from utilizing genetic testing i will focus my testimony on how technology can save lives and money and why i think the savings will be important not just for businesses but also for employees and their families and finally i want to address some of the concerns of the business community genetic testing it is the foundation of personalized and preventative medicine that focuses on catching diseases earlier when they're cheaper and easier to treat hearing tailoring treatment to each of our for example many women who test positive for the brock one mutation have up to an eighty five percent chance of getting breast cancer and many choose to have a mastectomy before the onset of the disease which significantly reduces the chance that they will get breast cancer and across a roughly twelve thousand dollars this option dramatically reduces breast cancer treatment costs that can run into hundreds of thousands of dollars and even for women who have already developed breast cancer genetic testing can lead to serious cost savings for example the breast cancer drugs a risk across twenty five thousand dollars a year but there is a simple genetic that will predict whether or not this drug will effectively treat that cancer thereby saving precious time and energy and money i took the example of breast cancer to help to make the point that genetic testing can be deployed today to reduce health care costs but we're not just talking about tests for press cancer we're talking about a thousand genetic tests that can predict whether an individual is more likely to get  this information would be to employer did wellness programs which by their very nature focus on preventive measures measures and think about how much employers could save on health care for keeping their employees healthy and productive and i know that this is at the heart of the debate within the employer community it's a clash between those who see this legislation as a way to reduce health care costs versus those lawsuits so i would like to address the concerns of those employers by outlining what is required for an employer to be liable under this bill genetic nondiscrimination isn't like race or  sex discrimination it's not apparent you can't tell somebody kinetic makeup from looking at them you have to search it out in order for an employer to be liable under this act he or she would have to intentionally or deliberately go looking for genetic information and then use that against an employee employer really would have to go out of his or her way to discriminate i understand the concerns of the skeptics in the business community my record  everyone involved worked in good faith on this issue and these groups can trust that i will continue to give them their to give their concerns fair and honest consideration however i do believe it's important to point out that this that the bill introduced in the hundred ninth congress congress which is the same bill as today is already a compromise bill that accommodates many of the concerns in the business community had previous to the previous version of the legislation damage caps so i think that this legislation is much more friendly than h r nine hundred ten from the hundred names congress mr chairman in passing this legislation we have a unique opportunity to improve the health and lives of the american people but we were never on a walk to great promise of the human genome project if americans are too afraid to undergo an addict testing i'd like to give you just one short example i was doing a television interview and a reporter asked me that she should undergo genetic testing because she had the wit to see if she had the predisposition for fell over bear ovarian cancer which is in some cases a high predisposition businesses will never realize the benefits and savings of gene based and so it's time the house joins the senate and the president supporting this critical bill and i thank you thank you both very much for your testimony i wanted to pick up  very well is the chilling effect on genetic research that's taking place right now because so many americans have this fear that mistakes are just talked about that if they take a genetic test that the information will be shared with people that they don't want to have it and they'll be consequences for them or their employment or their health insurance that they do not wish to have would make a prediction for us as to what you think would happen if we don't pass this legislation what negative impact  think it would have failure to pass this legislation on the evolution of genetic research i see your strategy going affect already in the states are now both talked about the numbers of people that have come to us as well as the number of physicians who have said we recommend have patients not to have it here let me make one point again i want to make sure this is terribly important not a single one of us in this room not the president really comes here a corporation not the c e o of any health insurer is  from this it affects every single human being alive the idea to discriminate against some of them who have had a test is it appallingly bad one wonders what would happen if we required all have already told us that people will not sign up for a research project and if people will not have a test or is a terrifying the case of all very breast cancer they will find a way to get the test and try to pay for it themselves and try to keep the information private it's an underground medical phenomenon that is going on you only have to talk to a few people who've expressed a fear of what happened for them to understand the baker one of the concerns that was raised about our discussions with the well was what about an employer inadvertently acquired genetic material what was the underlying bill do in that case if an employer inadvertently people exhaust third ministre to remedies is not correct right and i finally read the bill correctly in cases where the secretary of labor is deciding on penalties against a health insurer an employer or the secretary of labor has discretion to reduce fifty thousand dollars for an employee with fifteen to one hundred employees one hundred thousand for prayer with a hundred to two hundred employees and two hundred thousand between two hundred and five hundred employees and thirty three hundred thousand from play with more commitments anyone is welcome to answer ask any question they wish of the members but to the extent that we can get the members on their way and get to the expert panel we should please if you have questions for the members he's still free and i start with my friend mr klein thank you mr chairman and thank you ladies for being here this is a very unusual position especially with a very powerful large charwoman of the rules committee to be sitting to be sitting there trying to be here for a long time i know you have and i want to commend both of you for your for the energy and passion that you put into this dimension issue just popped up during the chairman's questions and that's the issue of preemption here do you are you saying that this legislation would provide common law common standard if you will nationwide and would create the fifty states o that an employer who intentionally gets genetic information and intentionally discriminates against a potential our current employee because of that that's what this legislation as it is and out not accidental or unintentional  boon to people but also can be used as a burden on those people and the law should always catch up with the thief in emerging research and technology and you're right on top of things and i just want to thank both of you thank you fielding and let me l there's no i'm happy to see that this is actually going to the legislative process now you know the mapping of the human genome science of genetics i believe represent one of the most important vance's in medicine is going to profoundly affect the way medicine is practiced in the future  and i think this debate highlights an inherent basic problem we have in our health care system and i want to highlight that and that is we currently have in a position of managed care ensure merit medicare into these insurance companies the employers as well as governmental entities and bodies between the doctor and the patient and that is a problem because a lot of very sensitive information flows through that system that can be abused or leaked out in some fashion that could be harmful to patients and i think it's a put never a good look at that that broad picture as we approach this this legislation i'm going to ask a question out i don't know you don't need to answer this now but i think it's a question that we as a  committee need to into tain as we go forward roseboro if passed push employers and insurance companies and other entities that utilize sensitive health information out of that business for fear of lawsuits or as a result of lawsuits so that we eventually gets a point where we have just the doctor and the patient now dealing with sensitive information and these other entities simply dealing with actuarial data and statistical information only and so that's a question i think we need to entertain as we go forward in this debate again i want to thank you i'm looking forward to working with you on the bill that presents a cause and i go back thank you very much ms biggert have that you have been persistence in this and i and i thank you for that and i'd like to actually ask you something that maybe you're better  able to answer them and their witnesses who will be coming which has to do with why a bill that makes such eminent good sense has been so slow to move i mean this is something  that we know existing protections are are minimal we know this is consistent with not only the health insurance portability act and with the american with disabilities act and any number of other principle the pieces of legislation principle principle pieces of law out there but clearly there has been something tests to the public but something is standing in the way and i'm wondering if you could characterize what it is that we've been up against here and why we can't why it's at this late date we haven't done it yet is getting these so nobody is finding out what they might be predisposed to nobody is in the trial so we're not kind of finding the cure for the just diseases that we should be able to  y it's like a search circular that it's going around and around there's still testing so there's no no problems of discrimination i think a lot of people fear the unknown in fact when i started out asking people you know what they want to get genetic test and so many people said i just don't want to know i'm afraid to find out even so that even though you said this is the right man for a long time it really hasn't until recently and we see all these cases on television you know  have to catch up with it and i think this is a case where where we haven't caught up with our rules and regulations and how to deal with it and i think we're taking their time and working with the business community and with the insurers you know have associations that have the fears i mean there are a lot of businesses doing this on their own and you're going to hear from here someone today so we have to kind of separate out those that the whole community has problems with the panel think  this is an exciting committee where the nuts and bolts of of the large committee will be and i've pushed the opportunity to share with you i want to commend each of you as well for the work that you've done in bringing this issue forward as a physician though i would i would be remiss if i didn't say th science will be will be beyond us but i did have couple specific questions i want to commend you for many many items not the least of which is the importance of clinical trials and making certain that folks are concerned or anxious or reticent about participating in clinical trials and i know that that you say that this still protect individuals in clinical trials and i've i should've spent more time reviewing it but i can't find that's the stick specifically i explicitly stated with you if you or your staff could could be able  really make us think hey go i have a couple of very specific questions and again i'd it may be that that that your staff may be able to help me more but i i know that it that is it's not oftentimes explicitly a genetic test in spite of the fact that as you say genetic tests oftentimes can reveal clinical situations that would benefit from from treatment preventable sorts of treatment opportunity have had some input into that i think it's important that we not limit the ability of an insurance company for example to highlight and recommend the types of her tests or screening tests that they would see as appropriate for there for the in charge to s clarity to the hiring practices of people and in particular i'm most concerned with this type of discrimination heavily affecting african americans who are purported to be genetically predisposed to sickle cell disease or to jewish americans who are predisposed to take a sex disease this predisposition particularly with regard to sickle cell disease does not guarantee that every african american with the genetic signature will manifest the disease in h r or ninety three the genetic information nondiscrimination act of two thousand and seven also known as gina introduced by representatives what is an incentive to wreck discriminatory practices using genetic information as the basis for the discrimination the human genome project produced details maps of twenty three pieces of human chromosome and sequence ninety nine percent of the three billion nucleotide bases that make up the human genome the sequence information should  just a vacation of genes underlying disease raising hopes for genetic therapy securities but this scientific accomplishment is not without potential problems the central abuse and pit potential misuse which is why we're here today the ethical social and legal implications of these technical the vet technological advances have been the subject of significant scrutiny and concern however they have yet to be answered the question of how we legally protect our citizens from discrimination if at all the answers to all the questions were available we wouldn't be here today mr chairman my constituents in the eleventh district of new york the borough of brooklyn suffer from an abnormally high unemployment right throughout new york city according to the two thousand and one study by the community service inside a crisis a black male unemployment and joblessness in new york the study finds that city wide unemployment rate third at eight point five percent in two thousand three but for many groups of the rocket it was considerably higher it includes teens at twenty eight point seven percent young adults thirteen point one percent black the twelve point nine percent hispanics at nine point six percent and these concern would be compounded as we move forward with such a technologically advanced society should genetic information be able to flow seamlessly between employers and those that have the capacity to get this information out and i think the comments are very well taken that there is a risk that genetic testing in the wrong hands could be a trojan horse for another form of discrimination to face on race or ethnicity and we don't ever want that to happen  is recognized for five minutes thank you very much chairman andrews good to see you good to be back on the committee the for the the panel and the definition of bill the family members to find to in from genetic discrimination for example prenatal screening suggests an unborn child carries a genetic marker for an element that child is still potentially the victim of discrimination on the basis of his or her genetic makeup as is the parent insurance coverage or treatments could be limited based on the results of those genetic tests until the child is called born to end of quote the parent or a pending adoption is completed and that while i'd like to ask my reading the language corrupt correctly and if so i would hope that there would be bro consensus by my colleagues at this is a loophole we should close to give this bill serious legislative consideration treatments to have a family and that's why that was planned to make sure that it covers all all children i'm not sure you can answer the question is expecting there's really no testing done that said this child may be you know has a genetic marker indicating that there's going to be an issue or a high probability of an issue a health consistent with other several rules and regulations you would be open to having that clarified here because it appears that in this legislation that you may be trying to create a car about and saying the genetic discrimination will be allowed for these cases because you're clearly exempting it so why don't we just clarify it and say that it would also apply to  important but i think that this is a loophole that that needs to be closed and i like to work with the i'm preparing an amendment that we can put into the bill to to cover and deal with that issue right thank you aren't any laws in pennsylvania presently that prohibit dish genetic discrimination neither the health insurance or employment but one of them a personal note i can remember about a year and a half ago as i was starting of thirty first year in the military when the world changed for me and my young three year old daughter was diagnosed with a malignant brain tumor and you know you go through the typical reaction bill was not that i have much that had goes a long way towards my daughter when she has her child is not going to be worried about a genetic testing think necessary review process so that her child would be able to know if there is a free food election towards it without her having to be have concerns for our family or others that we people who disapprove of region or other type of discrimination in the from connecticut some people think we have a genetic test of sort of being obsessed with insurance so i actually does have a question i want to ask you about the fact it's pretty clear that life insurance is exempted from the reach of th a lot of employers who are involved with their workers at the time purchasing life insurance either through a benefit structure that they have or offer to their employees and looking at the employment provisions in the limitation on acquisition i mean if i'm just trying to visualize that there certainly could be instances where workers are in the push in the process of trying to sign up think that is an issue that we're going to have to we're going to have to discuss are fifty states have different laws here are some stronger some not and so i can i can see some potential messed up so thank you for clarifying that i want to thank both of our colleagues for the generous amount and this is one of the better examples of how to do regular order our two colleagues have spent an enormous amount of time on this issue they've met with all different groups that have a stake and interest in the issues i think they produce a foxhole well balanced legislative product and needs every answered all our questions here this morning so we thank you and at this point we'll go to the second panel mistake or you're welcome to join us on the the committee and the slaughter we will see  ok all right ladies and gentlemen we're going to proceed to the second panel i would first of all thank all sort of witnesses for spending time with us today i know each of the four of you're busy and have much to do with your work and your family and we're glad you took time with us you will notice in front of you know there is a panel of lights we asked of whether this is to limit their statements to five minutes or less your written statements will without objection be entered into the is the dean and marjorie cooke professor of law at the university of maryland school of law in baltimore maryland she has written and published and lectured extensively on the areas that are in front of us today and she has a nice in show business she's hold testimony about his concern about his children and how they were affected by his ordeal welcome mr asher was how that person is the vice president for cooperate affairs in the chief privacy officer for i b m incorporated was educated at princeton university in new jersey which explains a great deal about her success and life and her success at i b m and we look forward to hearing her view as someone responsible for these issues and one of subcommittee thank you very much for the opportunity to be with you today as chairman enters mentioned i've been working for about the last thirteen years on issues involving the ethical legal and social implications of information and i have the pleasure of sharing the committee on genetic information in the workplace which was a joint workshop of and i h the department of energy and the national action plan on breast cancer in the late one nine that in fact developed the framework for many of the state and federal legislative proposal most recently my research is focused on the use of genetic information in the courtroom i'd like to begin by putting in context our concerns about genetic discrimination in the workplace almost twenty years ago congress committed to investing in the human genome project because it shared the vision of a revolution a revolution in medicine that would improve the health of all americans their goal was not to provide health insurer and employer tools to weed out individual that someday would generate large health care costs to date close to three and a half billion dollars has been appropriated to fund genomic research for the american people to return on this may never be able to make the transition from the research laboratory to the doctor's office and in the early days of the human genome project he still was concerned about social risks associated with scientists ability to sequence and interpret d n a and yet we are yet to achieve a federal law to safeguard genetic information so the tremendous promise of gentleman and ham strung by fear first how extensive is the fear and why does it matter i think in the interests of time i'll just point out again that congresswoman slaughter mentioned a number of polls that have been taken in the last few years that that the fear is real she also mentioned that genetic discrimination has a significant impact on biomedical research and some attention on health care decision making although we move forward as mentioned earlier in less individuals that my fan effect are willing to participate in clinical trial fear that information will become available to a misuse by employers or insurers has in still participation including a two thousand and three and i a study a family at risk for a certain form of colon cancer nearly half of the family members as fifty percent risk for inheriting a cancer inducing occasion associated with colon cancer were not willing to participate in any aspect of the study because of fear of discrimination now where does this come from and is it justified perhaps it would be helpful to place these questions in historical context in the only nineteen twenty congress relied on genetic science and the genetic inferiority of racial afte neck and disadvantaged groups to restrict immigration into this country it was in part the scientific justification for killing millions during the holocaust during the early one nine hundred seventy s in this country african americans who are carriers for the gene little time if i might if i have another minute on why we aren't seeing the cases and some of the concerns about the employer over the course all right yes of course the ok of course your statement without objection has been entering the record in great thank you so why do we have currently so little evidence of widespread discrimination in fact in fact some of our good that's why we don't need the legislation it is true that in recent years we've not been able to quantify the incidence of genetic discrimination by first we don't have widespread utilization of genetic services second individual often will not know or understand the underlying basis for an decision third without clear legal remedies healthy individuals with the genetic predisposition for a medical condition may be adverse to risking their loss of privacy for themselves these circumstances finally as a matter of law discrimination cases that that don't resolve themselves the trial court level never are formally reported so there are as my final in my delineate in there for you that currently under hipaa under the a d l and under title seven there are a loophole the legislation attempts to close and so as a matter of public legislation needs clued and finally the un do burden on the business community i would just like to and with two points first if we are to assume that employers are complying with these political fall state laws currently on the books then a federal wrong should not represent a significant new burden secondly and lawyers and those representing the insurance community have long maintained they are not currently using genetic information to charmin eligibility or employment status if so a federal prohibition should not burden these practices it would simply prevent misuse and integrate into compliance efforts should me i am not aware of any data that demonstrates increased costs when lawyers for complying with the state laws so in summary it is my hope that passage of a comprehensive law well move us forward to honoring our commitment to improving our understanding of genetics and the positive impact on the health of all americans thank you thank you ron a very much go thank you my name is dave a share i am now fifty two years old and had been employed by burlington northern santa fe railroad for over twenty six years as well as a member of the brotherhood of maintenance way during that time i was born and the year two thousand to married my wife debbie nineteen eighty six i have three daughters cal take care kristen we now live in reno nevada after relocating there three and a half years ago from the cook nebraska my jobs within the company during that time included such positions as a labor truck driver just a foreman machine operator and foreman i was appointed to a safety committee and continue to serve on that committee for over twelve years i held such positions as maintenance of oil representative vice chairman and then safety and health and rules facilitator up to the time of my departure from the company i was also selected as the cook division employee of the year in one nine had always had a great working relationship with all my coworkers as well as with the upper management team prior to my departure from the company i began experiencing numbness pain and tingling sensation to my right hand when the numbness began to move through my hand and up into my arm and into my upper bicep i went to see a doctor who referred me to a specialist it was determined that i had developed work related carpal tunnel syndrome for which surgery was necessary after meeting with the operating surgeon i received a letter from corporate headquarters stating that they were not satisfied with the initial test results and that they required further testing and a subsequent visit to under ologist i  my hands x rays and another nerve conductor study performed the results again confirm that i had carpal tunnel syndrome the surgery was required and that the condition was work related within three weeks of the surgery i received a certified letter from the management and for was text he demanded that i undergo more extensive testing and that an appointment was already stepped for me getting included in this letter where the requirement of safety rule as twenty six dots three which gives the medical department the authority to require an employee to meet all requirement that forth by the medical department and that everyone must comply with the instructions or face consequences of disciplinary action for being on the insubordinate employee after receiving the letter i immediately contacted the company medical case manager with whom i had been dealing and i read my and of her that i had already seen for medical professional undergone two nerve conductor studies had received six separate actual rate of each hand and now the company was demanding that i see yet not this doctor and undergo yet another nerve conductor study with more x rays when i pressed for an explanation i was told that as far as she understood more information concerning my medical condition was needed i went to the appointment as i had been ordered during the procedure seven vials of my blood  and the doctor once again confirmed that i did suffer the effects of carpal tunnel syndrome and that the condition is work related in a matter of a few days i would learn from a coworker who had refused to submit to that same order and who also had been diagnosed with carpal tunnel syndrome said i had been subjected to a genetic test of the blood which was taken from me this was done without my knowledge and without my consent i found my step myself in a state of disbelief an carefully devise scheme where my employer would benefit greatly by trying to prove that carpal tunnel syndrome was a genetic disorder rather than a work environment related condition they could relieve themselves of any financial obligations to the employees who suffer work related injuries within the workplace this was a very difficult concept for me to accept my attitude toward the company became very negative my moods of anger and depression resulting from the myself but my families when they go out into the workplace the constant worry what i would go to find another job to to this point in my life and to be able to obtain insurance for my family seems to me  answer mountable class this was a very trying time in my life one of the most heart wrenching moment the curd when my little seven year old daughter kristen began crying one night because she was scared daddy was lose jobs and her little world would be turned upside down how do you explain to a young child that you could lose your job not because of what you have done to your employer but because of what your employer has done to you with this new science of genetic information is a great asset when left in responsible hands but it can also be very devastating when put into the hands of the wrong people i am fearful of the power that corporations including insurance companies would have if they were allowed to subject their employees and policyholders to genetic testing and then make decisions based on what is learned in those tests we have laws to protect us from people wire tapping our phone stealing our mail and defrauding our bank account how can we allow employers to steal the blood of their employees and use it to discriminate through the predispositions discovered through the information learn not genetics  it is my personal belief that individuals are hired on the basis of their abilities and their capabilities to do the job not on the basis of their genetic makeup or he stree it has now been over five years since i had the opportunity to testify before the health education labor and pensions committee in regards to genetic discrimination to this day i have never received confirmation of what happens to the private eye of the blood taken from me i have been denied health insurance since i am on a regular occupational disability and there are still no laws protecting individuals from an employer demanding an employee to be genetically tested there have been many important events that have occurred in this five year time period most notably nine eleven and the aftermath which follow as important of an event that this has been in our nation's history i still strongly believe that the need for the passage of legislation that protects all americans from genetic discrimination is as important today as it was five years ago mr chairman through the tactics of deception intimidation lying and stealing the county to which i had given twenty six years of my life took from me something they can never give back and that is the very essence of my  genetic makeup and conclusion if employers and insurance companies and the like are able to have this type of power and control over their employees and clients then who will be able to have a job or affordable insurance if any insurance at all i want to thank for the committee for the opportunity to testify and i urge enactment on legislation to protect american citizens from the genetic discrimination thank you mr usher thank you and  let me say how sure how proud i am sure your family is of you that you shown the integrity and strength to come tell your story in a way that will hopefully help others avoid the difficulties you face i'm sure your family's very proud of you in a very fine job thank you this person racan thank you and good morning mr chairman and members of the committee my name is hearing pierce i am the chief privacy officer and vice president of corporate affairs at i b m and we are honored to have been asked to come and share our experience with our own policies and offer our views on h r four ninety three the genetic information nondiscrimination act we appear here in support of the need for this legislation i b m is a globally integrated enterprise with three hundred forty thousand employees around the world we provide access to health care coverage for more than five hundred thousand employees are family members and dependents we follow rigorous health privacy policies and practices and we do not let me clarify we do not seek to collect genetic information on october two thousand and five i b m became the first major corporation to my knowledge to make genetic nondiscrimination part of our official employment policy as our chairman and c e o sam palmisano said in his letter to all employees it has been i d s longstanding policy not to discriminate against people because of their heritage or who they are a person to notice make up may be the most fundamental expression of both so we are taking this step because it is the right thing to do for the sake of the innovation that lies just over the horizon and because it is entirely consistent with our values and who we are as a company the entire note that mr palm is on a road to our employees is attached as an appendix to my written statement which i've submitted to the record in our party i b m has taken the position that genetic information will not be used in hiring in determining employees eligibility for health care coverage or in making other employment decisions the reaction among our employees among health and privacy expert and others to our position has been positive i personally reviewed about one hundred letters from different employees to our chairman appreciating the moves that we made and one particular for example was an employee who has huntington's in his family who thanked the company thank i b m for making the certainty that he could work in a company and not have to face the risk or the uncertainty of any consequences but he asked the question which which made us think you know what about his child what about his children and that really rose to my attention as really an example of why we potentially were would need more policy in the united states so far i have to say in terms of cost to us as an employer we have not experienced as i said any negative actions reactions or any any cost that i can point to related to our position on this issue the reasons for making genetic privacy part of our broader discrimination protections were clear to us first we believe that a person's genetic profile should be treated the same as other innate human characteristics such as one's rank gender national origin sexual orientation age or physical abilities simply stated a person's genetic profile is as natural and inseparable from who they are as any other physical traits or attributes second it is even more important to protect people's genetic privacy as medicine and science further reveal the relationship between specific diseases and individuals should make genetic fingerprint we would i b m know those because our own experts and technologies are involved in a range of efforts from gene sequencing to personalized medicine we even have a computer game blue gene for example our hearts are experts in health care and life sciences are collaborating with researchers at centers around the world such as the mayo clinic's and the carolyn scott institute in sweden to unlock the molecular roots of disease with the he of genetic data there's little disagreement we believe in congress or across the country that each of us should be protected from discrimination based on our genetic makeup as we discovered in setting up on policy at i b m there is value in security in clarifying that such discrimination will not be practiced or tolerated a powerful reason for congress to act on genetic discrimination nondiscrimination now is that this issue's bound to become a bigger challenge as we move into the future of information based medicine in  new age genetic screening will be used more routinely in the diagnosis and treatment of disease and test results will increasingly exist an electronic or digital format by setting a national policy we may even improve patient care people with genetic predisposition for diseases such as diabetes or heart disease could seek preventative treatment without fear of the consequences to their employment or access to health insurance by sabotaging that none of us can be discriminated against on the basis of the genes we are born with we also will create a safe foundation for future therapies that could repair or address the genetic defects that might make us prone to particular diseases of genetic medicine is probably closer than we think we need to create the social and legal environment that will be conducive to it when we instituted our policy in two thousand and five many people asked why do we need such protections now before genetics discrimination is a why concern are like oh some of the comments you've heard before by saying that you know for our answer was that we had a sense of what is going on in the environment out there and for us the answer was also that matters of policy are not about reacting to external pressures but following the logic of our compan inherent values in i b m s early days we instituted equal opportunity policies that prohibit discrimination on the basis of race or gender that was decades before such policies were mandated by law and we did it because it was the right thing to inconsistent with our own d n a as an organization in that light it's the right time for congress to address this issue and we support h r four ninety three and would offer a few observations which are in a written statement and i'll conclude with a practical observation is that as we all know any legislation that expands requirements or liability can have unintended consequences and congress should closely monitor implementation of the law by the responsible action scenes and there should be a watchful eye against unnecessarily expansive interpretation and the resulting burdens that might be imposed we believe that protecting genetic privacy and protecting against on discrimination is a compelling issue though at the moment and therefore we appear in support of h r four ninety three thank you for the opportunity to testify this morning although this is not a legislative hearing we are aware of that represented a bigger representative slaughter event for those h r forty nine three the coalition commander the goals of that bill and we hope to continue working with the sponsors the members of th fact that we have heard again this morning about contact at burlington northern in two thousand and two thousand and one serves for me to underscore the rare and an repeated nature of that event we believe then and now that the bill is a remedy in search of a problem nevertheless it appears that you have decided that federal legislation and as a coalition that opposes employment discrimination we do not oppose the fell however we do believe the proposed can be strengthened and we wish to work with you to craft a more effective and more meaningful pill for example we share the concerns of some of the prior witnesses we hope represented a very good makes very clear in future drafts of the bill that this law is directed solely against intentional and deliberate discrimination we believe that it should we hope representative slaughter clarifies your position so that the bill have nationally preempted effect there should be one standard and it should be your standard we agree with representative price that one of the unforeseen consequences is that beneficial medical outcomes may be in peril we concur with the written statement the professor rossum for which states that employer should be able to collect genetic information if they can show that such information is relevant to the job worker safety required and we agree with knowledge a list that rather than one focused on illicit conduct and sent there has never been an opportunity for lawsuits without there being losses we do not want new causes of action particularly for technical violation without your due deliberation and i raised the point because the proposed bill could be improved we think by greater attention to the implications of some of the proposition for a few more examples the definition the family member is virtually limitless including press conference rights removed we do not think that is what you intended but that is what is there there is a new requirement for confidential segregated recordkeeping of genetic information this thing which from health information even to laymen could make that distinction we hope that these rare documents can be included with other confidential health records in already confidential brother are not permitted there should be an exception permitting the acquisition of such information if relevant to the job if collected pursuant to law and retains and confidential files the information should not be the issue the misuse of the information should be issues i mentioned the story number of state law the subcommittee knows the virtues and the importance of preemptive federal standards if new burdens are put on employers of least let them have a single standard and finally please remember there will be a time not too far off i hope when the rapid function trammell dissemination of genetic information will research or limit the free flow of life giving information make discrimination illegal not knowledge thank you for this opportunity mr chairman i'll be happy to answer any questions you thank you very much mr fishman thank you to each of our four witnesses bill that mr snyder and we figured introduce would be penalize the flow of genetic information and therefore retard and prohibit scientific progress he agreed with our conclusion i soon you don't and if you disagree explain to us the basis for your disagreement and we're not reaching the promise of where we need to go and if we currently have thirty four states that have laws where supposedly there aren't any cases being brought his argument flow of genetic information for a lot of our purposes for research do you think there's more of a problem with it being retarded by people being afraid to sign up for clinical trials were or by the limitations put on employer use of the material in this bill so what i think at the very basis of this bill and the very african principle we need to remember is yes if in fact there is an understanding that an employee thinks something behind someone's back it was doing something in secrecy and one of the arguments of why he may not have more of this we don't know about it is because it may be things done he happened to found out and that's why there is those real burdens and actual costs in implementing the policy to i b m it's been about a year and a half since we instituted our corporate policy and i can say we have experienced anything in our own policy  politics fairly broad it's talked about nondiscrimination in our employment decisions and health insurance coverage decisions of the global policy we have not experienced any significant cost we have studied the legislation that has been discussed today we do have some observations on some of the issues in terms of practical implementation which would be which are reflected in my written statement and i've touched on the implementation for example segregated recordkeeping if you get into specifics and and point to certain things that are not related to the principle here which is prevention of harm to the to all of us profession of harm in terms of employment or health insurance there's you know good  can come to agreement on that but overall we have not your sin is there anything in the bill that we've been talking about today that would in any way materially alter the business practices of i b m given the fact you've adopted this policy already we've  on my experience i would highly recommend that he doesn't do it and i just said you're empowering someone to find things out about you that you don't even know yourself and that is very powerful information that they can obtain from genetics testing and you have no idea how much more was there how much goodness these people have in their heart this to what they're going to do  i mean it could be used for good things like i say if it's in the hands of professional medical people it's a great discovery it's a good thing but if you let that type of information get into the hands of the wrong people it's a devastating experience and i'm not saying that that burlington northern as a company is a bad company what i'm saying is that the people who were in the leadership of that company at that time made some very poor choice but i am concerned and i know some of my colleagues are but we're not on it intentionally ourselves do some damage when we pass this legislation so if i could turn to mr session here briefly  keeping in mind that we are trying to have legislation that would prevent discrimination and indicated i think in your written testimony that there would be with us legislation  example does not include language like cancer that in executive order thirteen one forty five i think that nothing in this order shall require the civic benefits for any employee that specific benefit be provided for any employee or dependent under any insurance program nor could any employer be sued for failing to provide a particular form of coverage ok thank you very much for that  m has imposed as far impose limitations on how they use genetic information and some perhaps may not be subject to some lawsuits which we we my concern when we pass legislation and i hope as we work together as a chairman coming from a labor background i'm acutely concerned about any discrimination in the workplace whether it's age race or gender specific and today we're presented with an issue appropriate for our time and the amazing scientific we've made as a society discrimination based on our genetics we saw the finest i was presented with that age old question regarding the fine line between scientific advancement and practice in our lives what we plan to do with the knowledge that we do we use our desperate for good finding cures for one think about diseases or making one more comfortable in the workplace or would use our knowledge in ways to discriminate differentiate the value between people when do we overstep that line and interfere with the natural world business person states or testimony we legislate based on hindsight i'd like to go further in that in argue that we incorporated a preemption in the process as well look at issues such as affirmative preemption in case an event should occur these laws exist to protect individuals the value of our laws and how we are able to analyze them for improvement it luther's or pollen have the potential to be harmful or haven't in the  case studies presented today proven to hurt people but the laws are trying to protect well then we must fix them and of course we cannot preempt everything but when we have discovered instances where laws are not working it seems to me it is our and i apologize for that that that that never should have happened then and today that no worker should be able subjected to that but i was a panelist pondering the answer to your first question perhaps like in response to your want to me it's my understanding that legislation in a prior post cannot prevent we have laws against bank robbery but they don't prevent bank robbery we have a law we should have a lot of prevent the nonconsensual disclosure of genetic information or the use  information in employment decisions that's what this law should be can we prevent and abuse well i wish you guys right way to do it at the heart of what happened but i have no problem our coalition has no problem with the law respect one another and we can pack on live being want and that doesn't necessarily mean that people sigma ties and figure out ways to hurt one another that's bad i think we have to put in perspective that this debate has been going on when we were first trying to craft a proposal it didn't look like that it was significantly stronger at least from the perspective of many and that's it's been years and years and years of compromise where we're really sitting at a table where most people and most people on both sides are applauding it and at least making i would argue a very significant social policy statement  might have not been able to do twenty years ago but we have seen this progression to the point where we can also say that we are not going to tolerate misuse of information i would personally be making the stronger some of that information may be defined over broadly and you have a thought on how we might pare that down and what are the consequences of it overbroad or definition or over inclusive definition well i think  of the core issues and we need for example in in setting our own policy we did a very simple thing because we ourselves were not sure how to define it and we didn't want to kind of go down a road and then have  legislate in a different way and we had the word genetics to our equal employment opportunity policy alongside the other fundamental attributes that define us all as people so gender race except for a and we  to see how operationally you know practically things would work in terms of the legislation i don't have a specific suggestion other than to say that from an employer context we want to be very  careful in how we manage data i've been involved in managing data and information policy for a decade now and operationally when you say let's collect data and apply certain policies to it it's going to important that we know what the data is that we're talking about and the water cooler exception for example that was mentioned earlier by one of the members ring point because if you do inadvertently come into contact with information even if you're not looking for it you need to not be held to to a standard here that is higher than than what if you are consciously seeking arranging access to such information by the provision of health insurance coverage then it's absolutely relevant that we be held to a standard for managing that kind of data and managing carefully so i think it's clarity between that kind of information that's coming into your possession by virtue of arranging for employment or health insurance coverage versus water cooler a kind of casual conversation sort of thing like in the workplace you can mention to somebody that your your mother has breast cancer therefore the chances are higher that sort of thing which take the day frankly an operational challenge to figure out how do you actually manage to them discussion about when we made that recommendation over ten years ago i remember asking the scientists at the time what they're actually anything that they knew about that would actually need that and at the time there really wasn't  so there could be in the future and you would want to hold that up again there should always be consent of the individual because an employee might decide i would rather walk away from a job then get information family history and there is no tax three generations of people working in a mine for example all that develop some sort of disease or might just on the assumption made about that but there might not be any sort of test relevant for i don't know why we're not and i have a home for on function about why we're not seeing the lawsuits but i don't understand why all of a sudden they would jump up in this startle context when we haven't been seeing that my  definition portion of the legislation the the bill defines a family member as a child including a child born to or adopted by an individual and some of the members raise concerns about this  legislation doesn't cover the unborn and it is my understanding that it does because of the the the the shield that as i said before the we have to keep in mind that  mother's current insurance and in practice no provider of health coverage would improperly act against the unborn interest but because of the sheer will of the mother in the fact that after birth the child is fully protected would you agree with that interpretation on prenatal genetic testing and i think that as a reality most of the churn out of testing going on in this country is being done on women when they're pregnant that is the captive audience historically and all my work in this area my assumption has always been that if you had tested woman while she was pregnant and there was some sort of genetic abnormality it would it would reflect into either the woman or the partner the father in their circumstance that would have implications on the air insurance employment it could be implications on employment or not with respect to the fe that i can answer more accurately it is our position that the historical record indicates that when these issues have been raised in a legal forum they have found adequate relief let me restate that  who rejected an applicant or terminated an employee on the basis of a genetic marker would face certain enforcement both from the individual and from the e e o c and would just  this discrimination against federal employees only and not the one that is for actually what might might might come out with respect to the executive order was the exception in that that provided that nothing in the executive order could be construed outset of this hearing the ranking member talked about his desire to build regular order as we move toward considering legislation i share that goal and i think we've taken to a good step towards the snorting we've had a lot of views expressed some questions raised and w