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.

6 comments:

Anonymous said...

Dear Brian

Knowledge is usually good, so if you want to know your ApoE gene status, by all means go for it. Public sharing is different, though. Do you want all possible insurance firms from which you might someday want a policy (life, health insurance, even auto) to know if you are at higher risk for AD? Do you want future potential employers to know? I would hesitate to make this public.

Doug Miller posting as anonymous without even trying to convince Google I have a valid password.

jd said...

I would listen to "anonymous."

Soluman said...

Of course you should find out your status, that shouldn't be in doubt. At the very least, it might help you plan your retirement a little better.

As for sharing your status, putting the insurance concerns aside for the moment, I don't think that it's different from sharing any other disease risk factor you might have. Would you hesitate about sharing that you have high cholesterol or a family history of colon cancer?

The fear about repercussions from insurance companies may have a basis, but it rests on the assumption that our current health care reform will be overturned, since insurers will not be allowed to adjust premiums based on risk under the new law.

Could future employers discriminate against you based on your ApoE status? That's a possibility you might want to consider.

My sense is that there is no really compelling reason not to share your status, just some nebulous worst-case-scenario reasons.

Agent86 said...

The Enchiridion
By Epictetus
Written 135 A.C.E.
Translated by Elizabeth Carter

1. Some things are in our control and others not. Things in our control are opinion, pursuit, desire, aversion, and, in a word, whatever are our own actions. Things not in our control are body, property, reputation, command, and, in one word, whatever are not our own actions.

The things in our control are by nature free, unrestrained, unhindered; but those not in our control are weak, slavish, restrained, belonging to others. Remember, then, that if you suppose that things which are slavish by nature are also free, and that what belongs to others is your own, then you will be hindered. You will lament, you will be disturbed, and you will find fault both with gods and men. But if you suppose that only to be your own which is your own, and what belongs to others such as it really is, then no one will ever compel you or restrain you. Further, you will find fault with no one or accuse no one. You will do nothing against your will. No one will hurt you, you will have no enemies, and you not be harmed.

http://is.gd/3126Qb

--A86

Anonymous said...

I wouldn't worry so much about your posting your ApoE status - you MAPT haplotype is another story...

Marie said...

Brian,

Finding out I have a predisposition to an untreatable disease would have the potential to make me very unhappy and constantly unhappy. I want to be happy. And, more than likely, it would cause me to go through the rest of life hoping science *might* come up with a cure or treatment before it's too late. I don't want to live like that, so I don't want to know my genome. Plus, I'm 54 and just tickled pink I made it this far based on what I know about my ancestors' ailments.

As to your second question, well, I'll just sign myself

Your humble observer,
Marie