Statement of Francis Collins on President Clinton's Announcement to End Genetic Discrimination in Health Insurance

July 1997

Today the President will throw his unequivocal support behind the moral principle that information about possible future health risks contained in our DNA, the hereditary material, should not be used to discriminate against healthy individuals who currently hold or apply for a health insurance policy.

Robust public policies that prevent genetic discrimination serve us all, including families with hereditary disorders and health researchers. The targets of genetic discrimination today are those who carry gene alterations that, for better or worse, appear at the top of our list of scientific discoveries. But in time, we could all find ourselves in a similar situation. There are no perfect genetic specimens. We each carry from a few to a few dozen DNA changes in the complex and diverse encryptions of our genetic code that place us at risk for disease. As a leader of the Human Genome Project, it is my job to see that we find them all.

The Human Genome Project is an international research effort to characterize human DNA in detail, to map every gene in our full genetic complement, and to spell out, letter by letter, the instructions contained in our hereditary language. We began this task almost seven years ago and expect to complete it on time by 2005. We did not undertake this historic project to tell "family secrets" about an individual's genetic profile, and, consequently, for them to suffer discrimination or stigmatization. We are pursuing the Human Genome Project because it gives us extraordinarily powerful tools with which to understand why people become ill. For many illnesses, it provides the best hope for a detailed understanding and ultimate cure. Nearly every human disease has its roots in changes in DNA. Most of us have never heard of some of those diseases. But increasingly, we are teasing apart the genetic and environmental contributions to common disorders such as cancer, diabetes, Alzheimer's disease, mental illness, asthma, heart disease and so on.

As a gene hunter, I have reveled in the excitement of tracking down disease genes, knowing that one day those discoveries would help find a way to treat or prevent human illness. But until now, that excitement was always tempered by the unfortunate reality that those same discoveries could put people at risk of losing access to medical care by virtue of losing access to affordable insurance. The President's support of federal legislation prohibiting genetic discrimination in health insurance promises to end that. From the outset, leaders of the Human Genome Project have recognized the unique power of genetic technologies and the need to examine and address their ethical, legal and social implications (ELSI) before these technologies are broadly deployed to general medical practice. Indeed, the project's ELSI Working Group, along with the National Action Plan on Breast Cancer, has examined problems relating to the use of genetic information by health insurers and came up with a set of recommendations for policy actions that have been embraced by policy makers at the federal level, including the President and members of both parties in the House and Senate. This work (Science, Vol. 270, 391-93, 1995) provides the framework for the legislative initiative being endorsed by the President today.

The President's timely action comes during a revolution in genetics research, when scientists and research participants are forming new partnerships to understand and overcome inherited disease. To unravel the complexities of those diseases, the American public will have more opportunities to participate in health research. Protection of research volunteers against genetic discrimination is critical if federally sponsored biomedical research is to continue in good faith.

I applaud the steps announced today to end genetic discrimination in health insurance before it becomes a social crisis.

Sharon Durham

Last updated: April 12, 2011