Tuesday, June 21, 2011
What's wrong with finding out and releasing my ApoE status?
In a recent blog post, I stated that I intended to publish my ApoE status on the blog when I get the results back from 23andMe.com. I was surprised to find that some people objected to this. One associate said that by publishing information about my genetic status, I would be "normalizing" the dissemination of information that should be confidential. That sets a bad precedent for the use of personal genomic data. Another individual emailed me the following suggestion: "Instead of posting your results, maybe you would consider instead the value of not doing so at the request of an 'anonymous' reader and keeping the information private in order to stimulate debate about finding out about a disease process for which there is no cure." Finally, "jd" commented in the original post about the wisdom of getting the test done at all: "Why would you do that? If you come back 4/4 or 3/4, that'll be hanging over you the rest of your life. If there were a cure for Alzheimer's, that'd be different."
And so, I pose this question to readers: Is there not intrinsic value in knowledge about one's genome, regardless of whether or not a related disease predisposition can be treated? Also, if I am willing to release my personal genetic information to the public, what harm am I causing myself or anyone else? At this point, I intend to find out my ApoE status when the information is made available to me, and I intend to discuss the results on this blog when I get them. But, if anyone can make a convincing argument otherwise, I am willing to be convinced. I await comment.