Thursday, March 12, 2009

Europe plans on regulating DTC....US is Studying it.

Interestingly in a news article in the European Journal of Human Genetics, it seems to me that even the people arguing against regulations are doing so in a very "Not so convincing way"

Those that are arguing for regulations are making a clear case. My guess is that they have been the ones arguing for about 30 they have a little experience with ELSI issues in genetics....

The end of the news article makes it clear that at minimum, there will be a place for genetics professionals in the governmental regulatory organizations to develop such guidance. This seems to me to be a reasonable approach.

I have argued in the past that these companies should be getting regulated. And they should. In fact, there are already laws on the books to provide such regulations. You can call them old, or outdated or perhaps relics of a paternalistic age.......But that does not change the very fact that these laws exist.

So, if you want them changed, go to the government or vote. We have done such things. Think Repeal of Prohibtion.......But it seems to me that the government at least in Europe is looking to bone up on its own genomics expertise and my guess is that they will load their panels with those less apt to agree with DTC.......

Now with President Obama looking to evaluate effectiveness of technologies for healthcare, the issue with DTC and "Personal Genomics" is bound to be brought up......It looks like NEIHS is already gearing up to study it....

02-HG-102 Direct to Consumer (DTC) Personal Genomics--Ethical, Legal and Social Implications Research. Direct-to-consumer marketing of targeted genetic scans for particular disease mutations and for ancestry-informative markers has been available for several years, and a growing number of companies now offer direct-to-consumer (DTC) personalized genomic services based on more comprehensive genomic analyses. The emergence of these DTC genetic testing services raises many issues: Are such services a generally positive advance that empowers the public, or are they premature? What is the potential for consumers to be educated, helped, confused, or even misled by these services? How do those who use these services react to the information they receive? How do health care providers deal with this information? Research is needed to address these and other issues related to DTC marketing of genetic tests. HHGRI Contact: Dr. Jean McEwen, 301-402-7997,

The Sherpa Says: Don't you think that HGP should have spent more money on this?

1 comment:

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