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Genetics and the Politics of Discrimination

Whether the individual wishes to gain that knowledge through genetic tests and whether she feels comfortable knowing potentially scary things about herself should be up to the person to decide.
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About eight years ago, my mom's sister Linda discovered she had breast cancer. It progressed quickly and she died. And then a couple of months ago, my mom's other sister, Joanie, found out that she too had breast cancer. After briefly consoling my mom, I started in on an interrogation. I demanded the date and results of her last mammogram and whether her doctor had performed a manual exam or offered up any pertinent opinions. I also mentioned my two aunts and their terrible diagnoses to a friend, an OB/GYN, who, knowing I'm an Ashkenazi Jew and therefore more liable to carry the mutation on the BRCA 1 or BRCA 2 chromosome that dramatically ups one's odds of developing breast or ovarian cancer (, suggested I find out if my mother had been genetically tested for the mutation. If she was negative, my friend explained. I'd be negative as well. So I called my mom back and, telling her again how sorry I was about Joanie, picked up the grilling where I'd left off.

My mom isn't one for genetic tests, certain as she is that between God and her trusted doctor, her mammary glands are in the best of hands. As for me, I want to take any test that'll help zero in on my odds of developing breast or ovarian cancer, knowing that I'll gain information to help me make impactful health decisions (e.g. if the test showed the mutation, I could be more diligent with self breast exams or, more drastically, choose a pre-emptive mastectomy or ovariectomy). And as the mother of three daughters, I wanted to know for their gene-sharing sake. So I made an appointment with a reproductive geneticist in Chicago and saw him at the beginning of April.

The doctor sat me down in his office for a pre-testing counseling session. He asked a bunch of questions, keyed the answers into a computer program, and told me my odds of developing breast cancer based simply upon the way my life had unfolded. Then, even before unpacking a mail-in blood kit and filling out extensive paperwork, before drawing my blood into beakers and telling me it'd be around a month before we got the results, he wondered not only what I might do with potentially alarming information but, equally importantly, if I was prepared to let my insurance company in on budding catastrophes lurking within my genes.

Having covered several rounds of IVF, as well as services from pediatric MRIs to middle-aged chiropracty, I have faith in my insurance company. Even so, the geneticist explained, whether or not to share this information with my insurer was an important decision, since there was nothing to prevent it from denying coverage to a person with even a genetic risk for a disease. He explained that we were talking about denial of future coverage, or even employment opportunities, based upon potentialities. I hesitated, thought about paying the $480 or risk being denied coverage or forced to pay inflated premiums. I imagined being forced to duke it out with our insurance company even as I struggled to recover from the voluntary removal of my breasts and ovaries. Surely they'd take it easy on a vulnerable, anxious and sore woman. Of course I knew they wouldn't. Yet I indicated that I'd like them to go ahead and bill my insurance company. I was curious how Blue Cross would handle it. And anyway, maybe I'd end up taking steps that'd reduce more significant costs, both financial and health-related. Maybe they'd end up glad I'd had the test and consider it a wonderful diagnostic tool rather than as a means of sniffing out high-risk policy-holders.

On April 24, a couple weeks after I'd seen the geneticist and one day before the annual celebration of National DNA Day (, Congress overwhelmingly approved a bill to outlaw genetic bias. This legislation, called the Genetic Information Nondiscrimination Act (GINA), specifically prohibits health insurance companies from denying benefits or employers from making hiring or firing decisions based upon a person's genetic information. Representative Louise Slaughter (D-NY), recognizing the rapid development of genetic technologies as well as the potential for genetic discrimination, first introduced a bill to protect a person's genetic information 13 years ago. It had languished, however, with employers worried about being sued over an insurance company violating the bill. There were also a few vocal opponents in Congress, namely Senator Tom Coburn (R-OK). Coburn finally agreed to allow the bill to go forward after language protecting employers from such lawsuits was included. Although he still hasn't signed the bill, President Bush has indicated that he plans to do so.

And then earlier this afternoon, I received a call from my geneticst telling me that, good news, my tests for the mutations on BRCA 1 and BRCA 2 came back negative. I told him how relieved I was, and also asked him what he thought about GINA. He mentioned that it was great in theory, but mentioned concerns over insurers trying to hoist therapies upon those they insure based upon genetic tests that may or may not tell the whole story. I have my own concerns about insurers or employers pressuring people into undergoing tests that they are either uncomfortable with, or don't really care about one way or the other. It seems that genetic decoding, like any other medical test, is a highly personal choice, but one bearing extraordinary implications. Whether the individual wishes to gain that knowledge, whether she feels comfortable knowing potentially scary things about herself should be up to the person to decide and, from there, incumbent upon her insurer to pay for.

There has been much talk about genetic tests being used among various racial and ethnic populations to help pinpoint the possibility of mutations and then, hopefully, cut a burgeoning disease off before it has a chance to blossom. There has also been talk about a future in which there are genetic haves and have-nots based upon their respective access to genetic therapies. People envision a dystopic future in which a super-race emerges, a race tweaked and planned by use of genetic therapies at the embryonic stage. But that isn't what I'm talking about here, that isn't what GINA addresses. Rather, it provides for one more incredibly powerful tool in the healthcare arsenal, a tool that should be wielded by the individual and paid for by the insurer as a prophylactic and, ultimately, cost-minimizing technique.

As for me, I'm happy with my various decisions to learn more about my genetic condition and to notify my insurance company that I was doing so. I'm also mightily relieved that it is getting tougher for my faithful insurer to fail me now.