Recently, I’ve been trying to work my way through a sizable stack of magazines that have accumulated in my apartment. So while walking on the treadmill in the gym, I’ve been catching up on the fashion and beauty articles in Glamour, Elle, and Marie Claire. Mostly I like to look at the columns devoted to new beauty products and the pictorials telling me what heel height is “in” for the next season. One of my favorites is the splurge vs. steal section where one magazine throws up pics of trendy outfits including jewelry and shoes and tells you what was a splurge and what was a steal. I like to see if I have anything resembling these trends at home. I am a product of my generation. I really can’t explain the appeal to anyone that didn’t spend his or her teens hanging at the mall.
I’ve noticed lately that these magazines also attempt to highlight issues in women’s health beyond the regular articles featuring questions you are too embarrassed to ask your doctor. I was about 20 minutes into my walk when I turned the page and skimmed over a headline that caught my attention in the May 2010 issue of Marie Claire. Anne Wojcicki, one of the co-founders of 23andMe, a genetic testing firm was interviewed about her life as an entrepreneur in the biotech industry. I read through the article and my first thought was disappointment. I was so disappointed. I felt that the author should have focused on the controversy surrounding the impending sales of these test kits at retailers such as Walgreen’s. Instead, the focus was on Wojcicki—her hair color and clothing preferences, the way she and her husband live in a humble home considering their measurable wealth, and her background and ultimate success as a businesswoman. While I applaud the journal for highlighting her as an individual, they glossed over the controversy surrounding the release of this technology and presented a completely one-sided account. I suppose that given the magazine I found it in, I shouldn’t have expected riveting journalism.
I think that if I had not read an article earlier the same week announcing the sale of the kits, produced by a few companies including 23andMe, then I wouldn’t have been nearly so disappointed with the Marie Claire piece. I had no idea that such tests were in development let alone ready to be stocked in pharmacies. I think the principle is a good one—using a swab, you collect some saliva and send it off to the company for analysis and find out if you are at risk for heart disease, diabetes, some cancers, etc. Each company is a bit different, but using your DNA, they determine if you have genes for a host of diseases including ones that are not preventable, such as Alzheimer’s. You get a report from the company giving you the statistics and your risks for developing these conditions in the future based on your unique gene profile.
While I am a proponent of what is being called “personalized medicine,” I understand why these at-home gene test kits are currently a subject of debate with the FDA. First, I would like to note that you can easily undergo genetic testing by a licensed doctor and speak with a genetic counselor. I know this because I’ve had friends who are pregnant and it seems like all of them have gone in for tests because of a history of miscarriage or other reproductive issues. So tests like these are not novel. They have been around in the healthcare community for quite awhile. In Marie Claire, Wojcicki is quoted as saying, “the paternalism of the medical industry is insane. But scientific advances are changing all that." You have got to be kidding me! I personally think that her company and others like 23andMe are offering a service without proper support for their customers. The information that they are giving to people is potentially life altering and could also cause great emotional distress. If I found out that I had a gene that increased my risk for Alzheimer’s, for example, I would have to take that into account when I considered getting married and having a family. Furthermore, a small study by the Coriell Institute for Medical Research in New Jersey, gave 44 participants a genetic screen much like the ones the FDA is currently scrutinizing. Interviews with the study participants found that one-third had shared their results with a doctor. Of these, half received behavior or lifestyle recommendations from their doctors based on the test results, but a quarter of these patients said that their physicians “didn't know what to make of the information.” I think that the customers of these at-home kits may not completely understand the results because even clinicians aren’t 100% clear on the role that behavioral factors like diet have on many of the conditions these tests examine. Also, similar studies have shown that the participants didn’t make any significant changes in their lifestyles based on genetic test results that they hadn’t already begun to make.
The bottom line for me is that it is irresponsible to give a person this information without proper education and a medical support system that could help the individual make lifestyle changes. Wojcicki’s assertion that the medical community is attempting to somehow control patients by not supporting these gene-testing kits is absurd. I think that if these kits were offered and used under the direction of knowledgeable healthcare professionals equipped to help counsel the patient, the controversy would be hampered or not exist at all. For me the controversy is in giving this information to someone who won’t know what it means or what to do with it in order to try to prevent developing disease.
