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STATEMENT

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SENATE COMMITTEE OF LABOR AND HUMAN RESOURCES Advances in Genetic Research and Technologies:

Challenges for Public Policy Presented by Martha W. Volner, MSW, Director of Health Policy

JULY 25, 1996 •

Mr. Chairman and Committee Members: The Alliance of Genetic Support Groups, the nation's voice of the consumer genetics community wishes to thank you for the opportunity to present our testimony to the committee on the issues we view as central to all discussion about genetic policy/technology: discrimination against people who have genetic disorders and access to treatments which have been created by the technologies. These two issues are very much entangled. The more the technology advances, the greater become our chances that a treatment will be discovered. The more the technology advances, the more likely we are to experience discrimination. The more we are discriminated against, the more likely we are to be denied access to the treatments which the technology created.

Every human being is born with a set of genes. By the fascinating chance of human reproduction, most people are born with what is considered an average set of genes which are expressed in an average physiology. Others are not. Those who are born with the more usual genes ought not be too smug. All of us are carrying so-called "deleterious" genes -- usually estimated at between 4 and 8. Should we have the misfortune to marry another person who happens to carry a matching deleterious gene and should we have the further luck to have those two genes meet, we can have a child with a recessive genetic disorder. This is not our fault nor the fault of the child. It happens.

As technology progresses -- and we applaud and celebrate the technology --, we discover that more and more of the maladies that beset us in later life are also regulated by the genes we happen to have inherited. Even if we should come to the place where we can accurately predict which of the genes we've inherited will ultimately cause our death, is there anyone who would suggest that we ought to stop reproducing? After all, we will all have something wrong with us sooner or later.

For those of us whose deficient genes have made an earlier debut, we have found that insurance companies and employers would prefer to spare themselves the cost of our care. As competition in the insurance industry has increased, the incentive for companies to weed out those who could cost them more becomes ever greater. As corporations look for ways to trim, higher insurance rates look less and less attractive. Insurers and employers also have incentive to avoid people whose problematical genes will be making a later debut. As technologies for identifying genetic composition become ever more sophisticated, potential for a greater and greater portion of the society to be left out in the cold increases. Ultimately, we could all become ineligible. '

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This, of course, won't work. Those of us who currently find ourselves in this situation, we can also tell you about people who cannot become employed because they must stay poor enough to qualify for Medicaid and Medicare. We can tell you about people who have insurance which covers everything but the disorder which they have. We can tell you about families whose insurance does not cover the member who has a genetic disorder. We can tell you about companies which have refused to pay claims for treatments of genetic disorders. We can tell you about people who are stuck in dead-end jobs because they cannot transport their health insurance policies. We can tell you about families w~ have had to sell homes to pay for care. We can tell you about people who have not received ' existing medication because they can't afford to buy it. We can tell you about people who have had to chose between medications and food to eat. Unless we are able to find work with a large employer where no questions are asked, we cannot get insurance and we cannot change jobs.

The insurance industry will piously tell you that they don't do genetic testing. Literally speaking, this is true. But they don't have to. All they need to do is require you to submit your medical records, ask what you've been treated for during the last five years, or inquire about the cause of death of your parents. They can get a fairly good genetic reading with a few simple questions, sparing themselves the additional cost of genetic testing. Thus, we end up being denied access to the technology we have waited so long to obtain.

A number of states -- thirteen at last count -- have passed laws prohibiting genetic discrimination. We, however, believe that this is be America's last bastion of pervasive discrimination and that the Federal government is obligated to take a finn moral stand, protecting the Civil Rights of people who have genetic disorders.

In order to do this, we advocate the unequivocal prohibition of genetic discrimination in all aspects of the community, be they medical, career, legal or educational. In looking at a number of the pending bills, we want especially to urge you to ensure that disclosure of genetic infonnation is not a condition of employment, insurance, or school admission. Unless this provision is spelled out, any discrimination legislation will have a loophole so large as to render it meaningless. We also believe that legislation must spell out a prohibition against genetic discrimination, no matter how the infonnation is obtained. Further, penalties for violations must be stiff enough so that the statute has teeth.

The wonderful scientific advances have accelerated the need for statutory protection. This is an issue whose time has come. We hope you will not delay in enacting strong legislation to prohibit genetic discrimination.

Thank you very much.