Hi folks. I know all of us have our hands full with all of the challenges confronting our country. But I wanted to take a moment to share some good news with you about a bill that was blocked by members of the Republican House leadership during the last 12 years but that now looks like it's finally going to pass: the Genetic Information Non-discrimination Act, or GINA (HR493).
I think that GINA is a clear example of legislation that a vast majority of Americans want to pass and that a Democratically-controlled congress is going to deliver on.
Simply put, GINA makes it illegal for group health plans and health insurers to deny coverage to a healthy individual or charge him or her higher premiums based solely on a genetic predisposition to a specific disease. The legislation also bars employers from using individuals' genetic information when making hiring, firing, job placement or promotion decisions.
Many examples of genetic discrimination already exist. A few years ago a woman in North Carolina was firedafter a genetic test had revealed her risk for a lung disorder. Let me give you some more examples of genetic discrimination going on across the country:
*In the 1970s, many African-Americans were denied jobs and insurance based on their carrier status for sickle cell anemia, despite the fact that a carrier lacked the two copies of a mutation necessary to get sick.
*In 1998, Lawrence Livermore Laboratories in Berkeley was found to have been performing tests for syphilis, pregnancy, and sickle cell on employees without their knowledge or consent for years.
*In 2000, the Burlington Northern Santa Fe Railroad performed genetic tests on employees without their knowledge or consent.
Faced with this recent history, it is clear that we need this legislation for two reasons. First of all, it is critical to remember that simply carrying a given genetic mutation almost never guarantees that one will fall ill. A genetic flaw simply confers a level of risk upon the carrier.
Given that scientists cannot accurately predict when or whether a carrier will develop a genetic disorder, it seems both criminal and illogical to allow this information to be used by health insurers or employers for discriminatory purposes.
But what is more, if we want the potential of cutting edge genetic technology to be realized, we need to make genetic testing something that is commonplace, rather than something that is feared. We need people to participate in clinical trials. But sadly, ongoing genetic discrimination is making men and women less likely to be tested every day.
In a recent 2006 Cogent Research poll , 66% of respondents said they had concerns about how their genetic information would be stored and who would have access to it. 72% agreed that the government should establish laws and regulations to protect the privacy of individuals’ genetic information. And 85% said that without amending current law, employers would use this information to discriminate.
In a 2003 editorial, Dr. Francis Collins and James Watson illustrated just how damaging a lack of public participation in clinical trials will be for research into genetic disorders. They wrote:
Genetic discrimination has the potential to affect people’s lives in terms of jobs and insurance, but there is another dimension as well: It can slow the pace of the scientific discovery that will yield crucial medical advances. ... Without protections in place, individuals who do agree to participate [in studies] will represent a self-selected group that could skew research results, producing a negative impact on all of us who look to genetics to help find better ways of diagnosing, treating, and preventing disease.
The stakes are high in this fight. There are currently over 15,500 recognized genetic disorders affecting 13 million Americans, and every one of us is estimated to be genetically predisposed to between 5 and 50 serious disorders. Fifteen percent of all cancers, for example, have an inherited susceptibility, and ten percent of adult chronic diseases (like heart disease and diabetes, America’s top killers) have a genetic component.
Fortunately, there are already genetic tests for over 1000 diseases, and hundreds more are under development. To give you an idea of the potential that exists, consider that genetic tests can tell a woman with a family history of breast cancer if she has the genetic mutation that can cause it, long before the cancer develops.
But for these exciting scientific advances to continue, and for the potential of this technology to be realized, we need to make genetic testing something that is commonplace, rather than something that is feared. It is my hope that that is what GINA is going to do.
GINA will do more than stamp out a new form of discrimination, as important as that is. It will help our country to be a leader in a field of scientific research that holds as much promise as any other in history.
I am testifying today at the Committee on Education and Labor (Subcommittee on Health, Employment, Labor and Pensions) about this legislation and I will be tied up in Rules Committee hearing this afternoon. If you have any questions, comments, feedback on this legislation, please let me know in the comment thread. As always my staff and I will be reading all of your comments, and I will try to answer any questions you may have on this legislation, when I can find time in between my hearing today.
Thank you so much again for making me feel welcome in this community. - LMS