Landmark legislation aims to thwart ‘genetic information’ discrimination

Today, we stand on the verge of enacting major civil rights legislation. Unlike in the past, this time the Congress has an opportunity to act before discrimination becomes entrenched in our culture and millions suffer needlessly. This landmark legislation — the Genetic Information Nondiscrimination Act — will prevent millions from being denied equity in employment and health coverage. But despite the opportunity before us, some insist that we can postpone action.

Genetic discrimination is particularly egregious because it is so patently intentional. Unlike other forms of bias, genetic discrimination is not based upon an obvious, visible trait. To discriminate, one must actively seek out information on which to act. In the past our knowledge of genetics was limited and there simply was not much information to act upon. How that has changed! Since the remarkable completion of the Human Genome Project in 2003, scientists are rapidly gaining the knowledge of genetics that will help us treat, and even prevent, disease.

As we were beginning to see the genetic code unlocked, I heard of the potential for harm from one of my constituents, Bonnie Lee Tucker. Ten years ago, Bonnie Lee wrote me about her fear of having the BRCA test for breast cancer, even though nine women in her immediate family had been diagnosed with breast cancer, and she herself had survived the disease. She feared undergoing a BRCA test because she worried it would ruin her daughter’s ability to obtain insurance in the future. Bonnie was certainly not alone in having this concern. In fact, when the National Institutes of Health offered women genetic testing, nearly 32 percent of those who were offered a test for breast cancer risk declined to take it, citing concerns about health insurance discrimination.

So we must think carefully about how genetic information will be used.  Until recently many of the diseases linked to genes — such as Huntington’s disease — caused those at risk to forgo genetic tests because the potential harm was so great.
Yet today so much has changed.  We are making tremendous strides in medicine. The promise of both treatment and cure for many diseases lies before us, and genetic science is crucial to that advancement.

We also now recognize that for many of our most significant diseases — such as heart disease and cancer — genetics is but one factor in their development. Thus the consequences of avoiding genetic tests are far greater when you consider that millions are losing the opportunity to learn more about their risk and embark on a course of action to address it.

So genetic information must be a vital key in both preventing and treating disease. That certainly fits in the approach we must take to health care today — to encourage and empower Americans to act proactively to improve their health. However, few Americans will either participate in genetic research or take a genetic test if the consequences place their health coverage or employment at risk.

So the impediment of discrimination will block a remarkable new leap in medicine unless we act. Recognition of that fact is growing — including among both employers and health plan providers. Indeed IBM has recently adopted a policy of genetic nondiscrimination, and has called for passage of this legislation.

For years I have worked with my colleagues in this effort — and today, together with Sens. Kennedy and Enzi and Reps. Biggert and Slaughter, and a total of 249 Senate and House members — we are close to succeeding at last. The president has given his strong support to passage of this bipartisan legislation. Yet, how much longer will it be?

I recently received a letter from a constituent of mine facing a very similar situation to Bonnie Lee Tucker’s — 10 years after I first began working to protect Americans from genetic discrimination. She wrote, in watching the continued struggle to enact legislation, “Where does that leave me? Should I wait to do the testing until the Act is passed? How long do I need to wait?”

It has been 10 years.  Let us not make her and millions more continue to wait.

Snowe is a member of the Subcommittee on Health Care of the Finance Committee.


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