Tuesday, April 28, 2015

We can extract secrets from genes, but should we?

From page A10 | July 14, 2013 |

Here’s something that hasn’t gotten as much publicity as I would expect: There is a gene associated with Alzheimer’s disease.
I learned this quite by accident, after I impulsively signed up to have my genes decoded. It’s not as simple as “you have the gene, you get Alzheimer’s,” but the gene may be a marker for the disease or involved in its development.
I’ll start at the beginning of this story when, a couple of months ago, I fell prey to that attractive word “free.” Someone in Davis had landed 100 free genetic screenings from 23andMe, an upcoming company that analyzes part of your DNA (normally for $99) and performs genetic research. The catch was that I had to sign up quickly.
I raced through the written warnings and details, pausing only to consider whether I might have trouble buying insurance if I turned out to carry the gene for an expensive disease. I decided that at my age (66), with Medicare already in place, I had little to lose.
I was thrilled that the company promised details about ancestry. Although I’m not the type to meticulously reconstruct a family tree, I am curious about where my relatives came from before they lived in Berlin (my father’s family) and Sicily (my mother’s). I knew that 23andMe also would furnish health information, but I didn’t spend time imagining what that might be.
Three weeks later a perfectly packaged little tube arrived, ready for me to spit into it, put it into the prepaid box and send it to 23andMe. Again, I read little. I spit and sent.
Three weeks later, while I was visiting my grandkids in Chicago, I got a message saying that my health data was available, although ancestry would take a couple more weeks. I rushed to the web page that offered my results.
This page contains five columns. On the left are the names of gene-related diseases. Next comes a column with stars to indicate how certain 23andMe is of its result. Four stars means very certain. The other columns are devoted to comparing “typical” results to the ones from my DNA.
For example, I am slightly more likely than most people to get colon cancer, but less likely to fall prey to melanoma or Crohn’s disease.
The results that pulled me up short, however, were for the first disease on the list: Alzheimer’s. Instead of “my numbers” I found four stars (indicating certainty about the results) and a picture of a padlock.
It turns out that for this dreadful, incurable disease (and several others, like Parkinson’s), the company wants you to read their information carefully before you click on the padlock and take a look.
So I read. This is when I first learned that there are genetic markers for Alzheimer’s. No one-to-one correlation exists between having the APOE4 gene and getting the disease, but the gene implies increased risk, double that of other people — or more.
At the same time, results regarding Alzheimer’s may not be reliable because researchers don’t yet understand what causes the disease. Genes may be a side issue, not the causative factor.
Finally willing to slow down, I watched 23andMe’s videotape about Alzheimer’s disease. Then I returned to the home page and stared at the lockbox that concealed my results.
While doing so, I thought about my recent reaction to negative results on a different kind of medical test. For six months — even when I didn’t consciously think about the test — I felt distressed and sad until, finally, a second test allowed me to relax.
I’ve told myself that if I plan to get older, I need to learn how to deal with health worries in a more balanced manner, but I’m not there yet, not at all.
I sat down with my husband, my daughter and my son-in-law and told them about 23andMe. We discussed how knowing about a potential medical problem gives you time to take preventive measures. Although nothing works yet to delay or slow the progression of Alzheimer’s, new drugs are being studied all the time.
I thought, “Maybe it would be good to know my results.”
My husband, the person who knows me best, hesitated. He reminded me how tense I had been about my other health issue. We also thought about the fact that my results might give our children information about their risk, and their children’s risk, that they might not want.
I kept the lockbox closed, and instead contacted the company to ask how long they would keep my results. They told me they don’t plan to erase anything, except at the request of the customer.
This gives me time to think the whole thing over, to learn to manage my tendency to worry about health, as I’ve already committed to do, and to look into the issue of genetic testing and how to handle your personal results.
For now, count me as a person who has not opened her lockbox. If others in Davis have made a different choice, I’d love to hear about it. In the meantime, I’m reading ferociously about personal genetics — likely a big topic in the next few years — and you may see more columns from me about this soon.
— Marion Franck lives in Davis with her family. Reach her at [email protected]





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