Tuesday, July 7, 2009

UK - House of Lords calls for gene testing "Code of Conduct"

BBC News' online article "Call for tougher gene test rules" states that,
"The House of Lords Science and Technology Committee said a code of conduct was needed to stop bogus claims being made. The report also said the tests, which predict the risk of disease later in life, needed to be more thoroughly reviewed before being marketed."
The article goes on to say,
"Health firms have already started to exploit the issue by offering genetic testing, which can give people an idea of the risk they face of getting a range of diseases from heart disease to Alzheimer's. The committee said it was concerned that unproven claims were being made and that individuals were not being offered the proper support and counselling to understand and cope with the results."

Unfortunately, the article does not state or cite examples of "exploitation" and any "unproven claims". However, it does state that NHS staff need additional training to meet the "increasing demands" of people worried about their test results. Again, the article is non-specific about just what the "demands" are and where the test results were obtained.

Friday, July 3, 2009

US - The Illusive Gold Standard in Genetic Ancestry Testing

"The Illusive Gold Standard in Genetic Ancestry Testing" published in the 3 Jul 2009 issue of Science Magazine calls for federal (US) regulation of genetic ancestry DNA testing. The authors are: Sandra Soo-Jin Lee, Deborah Bolnick, Troy Duster, Pilar Ossorio, and Kimberly Tallbear.

Dr. Blaine Bettinger provides an overview and critique on the article in his blog, "The Genetic Genealogist".

The article cites the American Society of Human Genetics' recommendations on ancestry testing but injects opinion as well with statements like, "...the false assumption that contemporary groups are reliable substitutes for ancestral populations..." and "...the lack of transparency regarding the statistical methods that companies use to determine test results".

The authors suggest that federal agencies should set industry standards and be responsible for accountability although they acknowledge that "how these regulations will be put in place is going to be a struggle between various parties that have shown little indication that there will be a compromise that will be acceptable to all."

Two press releases were issued as a result of the article: "
Stanford Bioethicist and Colleagues Call for Federal Regulation of Genetic Ancestry Testing" and "Tougher controls sought for DNA ancestry testing" in which the latter cites the now defunct company, AncestrybyDNA.