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Genetic Privacy Should Be Protected

Earlier this year we celebrated the half-century anniversary of the discovery of the building blocks of life. The now-fabled discovery of Crick and Watson in the spring of 1953 came in the form of a humble one-page paper published in a science journal, yet it permanently changed the course of biological science. The color of our eyes and the treatment of disease are now understood through the lens of genetics. Four simple amino acids in the shape of a double helix changed everything.

Then in the mid-1980s, scientists undertook the Human Genome Project. The project set out to map our genetic information and has

only recently been finished, almost perfectly coinciding with the anniversary of the discovery that started it all. In the years since Crick and Watson’s discovery, and even more so since the reality of the Human Genome Project has begun to settle into our collective conscience, there have been reservations with what we will do with this new information we are uncovering. Unlocking our genetic code unleashes new power. And power produces new responsibilities in protecting the privacy of our genetic information.

Concerns about the misuse of this power are already hindering the potential of the Human Genome Project. Fear of discrimination, even potential discrimination, particularly in employment and health insurance, threatens society’s ability to use new genetic technologies to improve human health and the scientific community’s ability to conduct research needed to understand, treat and prevent disease. Even though insurance companies are beginning to cover genetic testing and counseling, people are not taking advantage because they are concerned about how the information could be used against them or their offspring. Women have refused to participate in a National Institutes of Health-sponsored clinical trial on breast cancer. Physicians are advising patients to skip tests or pay for them out of pocket because they do not know whether genetic information is protected under the law. [IMGCAP(1)]

As the chairman of the Senate Health, Education, Labor and Pensions Committee, one of my top priorities is to ensure that the full potential of the Human Genome Project is realized. I’ve been working for more than a year to bring together divergent views and proposals to meld into a single, strong bipartisan bill that prevents genetic discrimination in health insurance and employment. I’m pleased to say that last month, the HELP Committee approved unanimously the Genetic Information Non-Discrimination Act. This legislation enjoys broad support, including Sens. Edward Kennedy (D-Mass.) and Bill Frist (R-Tenn.), as well as Sens. Tom Daschle (D-S.D.) and Olympia Snowe (R-Maine), the original sponsors of genetic nondiscrimination legislation.

A key component of the legislation is its privacy provisions. Although current law already contains medical privacy rules covering genetic information, our bill addresses some additional concerns and closes loopholes that are unique to genetics. First, it protects the privacy of genetic information at work. It specifically prohibits the use of genetic information in making employment decisions, and it ensures that information is treated with the utmost confidentiality. Second, the bill prohibits health plans from collecting, using or disclosing genetic information for purposes of underwriting. The legislation also prohibits a health insurer from requiring an enrollee to take a genetic test or using the information to charge a higher premium or keep someone out of the plan. These protections were carefully crafted to ensure that genetic technologies can move unhampered into the medical mainstream where they will benefit society.

Some argue that the need for such protections has not yet been proven. However, these critics seem to be ignoring the few, albeit egregious, cases that have occurred so far. At present, genetic information is in the gray area of federal employment protection. Discriminatory use of some, but not all, forms of a person’s genetic information are grounds for lawsuits. As more is known over time about the relationship between genetics, behavior and worker performance, there will undoubtedly be novel legal theories of liability under existing laws. Some of those will be successful and others will not. A primary purpose of legislating in the employment area is to set clear rules of conduct that everyone can understand so that workers are not subject to abuse and employers are not overwhelmed with frivolous lawsuits.

In addition, those expressing concern for new federal protective legislation may not fully realize the important potential of human genetics, even though they stand to benefit as much as other stakeholders from scientific advances that will further revolutionize the medical field. With no silver bullet solution in sight to cure what ails our expensive and troubled health care system, health care purchasers should welcome, not hinder, reasonable legislation that fosters medical advances that can lead to prevention and cure disease. With this potential in mind, I urge critics to take a second look at the legislation.

We must enable the Human Genome Project to realize its full potential. With a clear federal standard in place, I believe this will be made possible. I am pleased that President Bush has expressed support for legislation of this type on several occasions. After recess, the Senate will take up this legislation where I expect it will pass easily. It is my hope the House will soon take up this important legislation.

Sen. Judd Gregg (R-N.H.) is chairman of the Health, Education, Labor and Pensions Committee.

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