I'm an MD Clinical Geneticist, a specific, AMA-recognized, board-certified medical specialty. I'm weighing in here to give some educated, authoritative information, just in case anyone wants that. Of the 10 comments so far added to this discussion, not one has the facts right. I was recently shown a doctor’s blog site where the level of misunderstanding displayed in the comments by doctors was just as alarming. Today, I want to make several important points:
1. Legitimate genetic testing is extremely useful when it provides you with a) actionable, specific information about your illness or that of a relative which you may also be liable to, b) a clear understanding of the root causes of your medical condition, even if there is no disease-specific recourse available at this time. Genetic testing that provides you with vague, imprecise, inaccurate, or over-interpreted information about your future risks is, in my opinion, of very limited value, and may, in some circumstances do harm.
2. Legitimate genetic testing is often excluded from your health insurance coverage, or severely restricted requiring lots of hoop-jumping and appeals of ill-informed coverage denials. Some very large insurance companies have blanket policies that limits your access to tests that may be valuable to you, unless you're willing and able to pay out of pocket for them. In my view, legitimate genetic tests are treated differently by the 3rd-party-payer industry than "mainstream" tests, even though they have, in the right hands, just as much potential to inform the healthcare process. The "direct-to-consumer" tests, being on the average much less medically useful, and the lack of clear distinction between them and medically indicated genetic tests, I believe make the insurers shy further away from even legitimate testing.
3. Don't confuse "direct to consumer" with "not all that useful" or vice versa. At present, there is significant overlap between those groups, but that's the result of market forces and some FDA oversight of the useful sort, not because the mode of marketing a product is an inevitable indicator of its usefulness.
(continued next post)