Comments on: Personal genomics: a voyage of exploration

By: Keith Grimaldi

Keith Grimaldi — Tue, 27 Jul 2010 15:02:32 +0000

Mostly the health related information seems quite bland because a) we don’t know all the variants or enough about them, b) how gene x gene interactions affect risk, c) ditto gene x environment, and d) because most of us will be in or around the average risk anyway.

There are those though who for some diseases have an apparently high genetic risk, a very good example of this is Blaine Bettinger and his diabetes risk plus family history. This DID motivate him to change his lifestyle and to good effect according to subsequent posts and tweets.(Blaines post, well worth a 2nd, 3rd or 4th read is at bit.ly/4Bnysh, and Daniel also commented at bit.ly/bXXk0e)

So overall I agree with you, “for the most part” not terribly useful in a direct health benefit way, but I think, as you seem to be saying, that there are indirect health benefits through simply learning about the processes of genetics, environment and health. Of course you can get this information from many other places but the crucial difference is that here it is about you – you will read it again and again and with much more attention. This is another type of motivation – even though the GAO expert (Dr James Evans) claims that the motivation claim is fantasy (Evans clearly is a medical genetics expert but equally clearly is not a personal genetics expert, it’s a pity that the GAO did not find one to provide balance).

The other crucial thing you say is “Is it harmful? Again, so far the answer is a resounding no”. There is an ever growing number of personal testimonies on the internet about personal genetic testing (boosted I think by the $99 offer of 23andME!), plenty postive, some are underwhelmed, some disapoointed, but no reports of harm. The anti-DTC brigade have been shouting potential harm for nearly 10 years now, and you can be sure that they have been searching for it, and would have shouted it from the roof tops had they found it (viz Rob Stein vain attempt to find negative testimony – bit.ly/crnWPq ).

By: LJ

LJ — Tue, 27 Jul 2010 14:11:30 +0000

Yes, that last point is a good one. I too am concerned that existing access issues will bifurcate/stratify the allocation of any benefits that do arise. But I think that’s probably the subject of another post!

By: Caroline Wright

Caroline Wright — Tue, 27 Jul 2010 13:48:53 +0000

Yes, I see your point! I think what I meant with “self-knowledge” would be better expressed as “self-betterment” so I’ve amended that. I’m still not convinced that the information is really very empowering, as it doesn’t offer you the chance (or, in most cases, the motivation!) to do something you couldn’t do before, nor does it give you any greater authority over, or responsibility for, your own health.

I agree that this kind of information MIGHT ultimately transform healthcare, though I personally have my doubts about how universal that could, should or will ever be.

By: LJ

LJ — Tue, 27 Jul 2010 13:34:04 +0000

I think that you make an excellent point. I may be overly preoccupied by semantics here, but I do find it interesting that you make a distinction between “empowerment” and “self-knowledge” on the one hand, and the benefits of consumer genomics you outline on the other. I would argue that offering the public an independent interface with the new realm of genomics IS empowering and does contribute to self-knowledge. Taking a long view, this may be the among the most important roles of these companies –that they help transform our healthcare system into one in which personal understanding and agency emerge as more common features of patient-provider interactions. Might they even help to close the gaping deficit in most public school science curricula? Perhaps that’s taking it a bit far.

Not altogether different from what you’re saying–just a reflection.