Wednesday, March 25, 2009

So Good that You Have to Break the Law!

I was asked today by a reporter if I ever gave the thought to the argument that the DTC tests were so groundbreaking, so very vital a technology that the LAWS HAD TO BE BROKEN.

For the betterment of society, these DTC companies HAD to break the law. It was their Moral imperative.

Really? Hmmm......let me see.

Francis is glad these companies are out there raising awareness about genetics. I don't share his thoughts.

1) These companies put their genetic data out as fact. Not exactly raising awareness in the right way.

23andME does rate articles, but that being said, it isn't exactly and independent evaluation. Navigenics gives you rates or likelihoods, which people often don't get. I say the awareness is often hype and confusion, not a true understanding. The recent Cogent study presented at SACGHS bears this out. Great! These companies painted a flawed and confusing picture for the public.

Shouldn't NIH/NHGRI/HHS and leading academic centers be doing the education of the public?

2) These companies broke the law for the betterment of society?

Ok, I ask how is society better from this testing. We now agree as a scientific community that SNPs aren't everything. They may in fact only be a little of the picture. With the recent studies showing family history and blood pressure as better predictors of MI instead of a VERY SCIENTIFICALLY VALID SNP. So I ask, how are we better because of these company breaking the law? We aren't. New York Agrees with me I am certain other states will as well

Sufferage? Yes, Change The Law! Jim Crowe? Yes, break the Law.
DTC testing of patients? Not so clear that it is a moral imperative to make a few quick bucks........on a clinically unvalidated tool.

3) Current research methods are flawed and thus 23andME breaks the mold.

Again, is this needed? Is it ok to violate current international agreements on research in the name of moral imperative? NO. Social networking research over the internet, I think Coriell is doing this. I am certain Academic Centers with IRBs can do this as well. If research partners have IRBs that is good. But if research is done on these companies own, they need an IRB. How is it ok to break these agreements and standards of research?

It is NOT OK.

The Sherpa Says: This bull$h!t argument that these guys are breaking the law as a moral imperative makes me double over and laugh. Is society that foolish to believe this? I for one am not.

No comments: