25 July 2010

Our DNA: Accessing or owning it?

The FDA held hearings July 19-20 on oversight of laboratory-developed tests.

Tracing the Tribe has read articles on the hearings, but believes those hearings focused on medical genetic testing and not on ancestral genetic genealogy, which has a large number of very active, vocal consumers interested in the issue.

International Society of Genetic Genealogy (ISOGG) director Katherine Borges heads a non-profit organization of more than 7,000 members in the US and 60 other countries. She was a speaker.

Her remarks are reproduced in a Huffington Post column by Megan Smolenyak Smolenyak, who wrote (DTC refers to direct-to-consumer tests):

Normally, I would expound upon my reasons, but one of the speakers today articulated the perspective of genetic genealogists (and other DTC test consumers) so well that I asked whether I could share her remarks here, and she kindly agreed.
Megan is involved in genetic genealogy as an author and consumer of DTC DNA tests. Tracing the Tribe is another of those genetic genealogy customers.

Katherine's remarks were mainly about DNA testing for genealogical, ancestral and anthropological purposes, while the FDA hearings focused on medical genetic testing. There is a difference.

Said Katherine:

Our (ISOGG's) mission is to promote and educate members and the general public about the use of DNA testing for genealogical and ancestry purposes. We are comprised of serious enthusiasts who represent an active core of the estimated one million people who have taken DTC tests for genealogy and ancestry purposes since their inception about ten years ago.

As the name of our society implies, our focus is primarily upon using DTC tests for genealogy, but a growing segment of our membership also use personal genome tests to trace health-related information within their families.

However, testing for ancestry and anthropology is far and away the largest segment of the DTC genetic testing market. This clearly does not fall under FDA's area of responsibility. Our concern is that FDA should not attempt to expand its regulatory authority beyond its proper domain of medical applications, and it should assure that its actions in the medical area do not inadvertently impact the non-medical applications.

Tracing the Tribe recommends readers access the link above to read Katherine's complete remarks.

On media articles focusing on sensationalistic cases, Katherine added:

Many of the articles I've read have been biased, reflecting the author's views without presenting voices from both sides of the issue. For example, just last week, a DC area reporter was looking for stories from consumers of DTC testing for an article to be published in anticipation of this meeting. He was contacted by several individuals who had positive testing experiences, but he did not follow up on these contacts. He told another consumer that he was specifically seeking negative experiences.
She also addressed medical groups who seek to limit access to medical information not under their direct control, that participatory genome study at some institutions means individuals cannot access their own genetic information.

Read her complete statement at the link above for more information.

Those interested in the issue should know there is an online petition - which does not include a clause referencing ancestral genetic genealogy, but focuses solely on medical genetic testing. However, many signers (read the comments at the link) are commenting only on the genetic genealogy issue not represented in the petition.

Perhaps the FDA is only concerned with medical DNA testing and not ancestral or anthropological genetic genealogy?

I'm sure we'll all be paying close attention to future developments.

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