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4.  The trained professionals who are most in a position to help you understand the complexities and nuances of genetic testing, and the massive advances in technology and very useful information just around the corner, are Board-certified Clinical Geneticists and Board-certified Genetic Counselors.  They often work as a team. Unfortunately, they/we are, in my experience, the proverbial stepchildren of medical insurance/reimbursement system. These highly trained professionals cannot bill the system sufficiently (in the case of Genetic Counselors, not at all) to even break even.  They must be subsidized as a loss-leader to whatever system thy operate in.  That's why there are so few of us in existence, and why you never see us in independent private practice, the model that remains the "ideal" of American medical hegemony. Ironically, as our society enters yet another period of expanded need for professional genetics information in our daily lives, the number of new Clinical Geneticists graduating is dropping, and the number who drop out of practice to do something that can be gainfully remunerated is increasing, particularly, but not exclusively, outside of the medical school setting. 

5.  There are too few of us in the Medical Genetics community to get the system changed for the better, and many of us are restricted in our advocacy roles by our professional affiliations and receipt of limited government funds subsidizing our patient work.  The patients and others who stand to benefit from advances in genetic technology and knowledge are the ones who will have to advocate for change.  At present, that population, as evidenced by the comments here and even those on physicians' groups blog comments, doesn't even know enough to begin, let alone understand how to define itself.  I don't know what the solution is, but I do know that Americans need to decide if they want to move forward accurately informed about Genetics, or just perpetuate myths and ignorance.  If the former, they need to advocate for the professionals who can make it happen. 

6.  Thanks to OPB and Dave Miller for getting the discussion going!

posted 2 years, 9 months ago
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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. 

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posted 2 years, 9 months ago
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