Mary pointed out to me the twitterverse (for personal genomics anyway) topic of discussion today:

@westr: On “DTC genetic tests neither accurate in their predictions nor beneficial to individuals” http://bit.ly/m88dhf Not much new here.. #pm101

The article, titled “DTC genetic tests neither accurate in their predictions nor beneficial to individuals,”
basically points to a study and a survey. The study looked at risk assessments reported by several DTC testing companies and found them less than perfectly accurate. Well, welcome to genetics and genomics. As the tweet suggests, there’s nothing new here. We know they aren’t particularly predictive/accurate. Perhaps, you might say, ‘I’ know they aren’t accurate because I’m a biologist in genomics, but from a recent focus group I participated in, I’d say that most consumers of DTC tests probably have the same understanding. In my focus group, which I won’t go into too much detail for privacy reasons, I’d say to the last person, they understood clearly that the risk assessments were to be take with a grain of salt. My focus group consisted of one person with a biology background, me. The rest were stay-at-home moms, business consultants, office managers and computer programmers, i.e. a pretty clear cross section of the average citizen. To the last one, they thought the information interesting, sometimes helpful, but were pretty savvy about what it all meant.

The second part of that title… not helpful? Obviously, I’d disagree with that. The vast majority of the risk assessments have been (so far, with more research, that will change) of no real help to me, yet the caffeine response data did get me to reduce my caffeine consumption, and a direct reduction in my high blood pressure. The lactose intolerance assessment did bring to light that yes, my husband is lactose intolerant. Also, with two adopted children who have _no_ ancestry or medical family history, someone is going to tell me that’s not helpful for us? The tests have given our daughters a sense of who they are they didn’t have before, and a ‘family’ health history they could never get. I’m a little taken aback that one could call these tests ‘unhelpful.’

The second part is a survey. Over 60% of the clinical geneticists surveyed in Europe felt that whole genome scans carried out by DTC companies should be banned.

Wow. I’ve always thought this attitude is paternalistic on the part of medical professionals, and I still do. It’s the basic view that they are protecting us from ourselves. The thing is, I understand protecting me from a faulty or fraudulent product, but not from data. Also, I own my body (and my DNA is part of it) and I give permission to my doctor whether they test/view/examine my body. It’s not the other way around. I shouldn’t have to go to a doctor to get permission to find out about my own body. Especially when that test brings no physical harm whatsoever.

Anyway, to read more about this, you can check out Gene Expression. I also suggest Daniel’s post at Genetic Future for a sober and thorough review of the press release. I’ll be adding other links on the discussion as I find them.