UK - The Human Genetics Commission Principles and Consultation Questions

The Human Genetics Commission released today "A Common Framework of Principles for direct-to-consumer genetic testing services: Principles and Consultation Questions". A copy can be downloaded here.

The purpose of the document:

"promote high standards and consistency in the provision of direct-to-consumer genetic tests amongst commercial providers at an international level in order to protect the interests of people seeking genetic tests and their families. They will identify where individual companies and or national jurisdictions should have defined measures in place and the nature of those measures. " - pg 1

"The HGC is not a regulatory body. It hopes that these Principles will lead to the development of codes of practice that take account of existing regulatory structures where the need for additional regulation or legislation is revealed to be necessary."

Excerpt that references ancestry testing:

"Other tests can also provoke anxieties, such as ancestry tests that offer fundamental information about identity and ethnicity."

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.