In addition to Google's corporate sponsorship of nearly 2 million pounds last year, Google co-founder Sergey Brin has taken his support of the genome-testing company 23andMe, which his wife co-founded, to new personal heights by becoming one of its customers. Last week Brin publicly posted on his blog that DNA testing of his saliva sample by 23andMe had detected that he possesses a gene mutation which causes him to have what he explained is 'a markedly higher chance of developing Parkinson's disease in my lifetime than the average person', admitting that 'the exact implications of this are not entirely clear'. He wrote that his increased chances are 'somewhere between 20 per cent to 80 per cent depending on the study and how you measure'.
Among the results, a match was found on Brin's LRRK2 gene for the variant sequence G2019S, associated with an increased risk for Parkinson's. Parkinson's disease is a neuro-degenerative disorder of the central nervous system that often impairs speech and movement. Brin's mother and her aunt suffered from the condition but Brin said he was sceptical that it was genetic. When he agreed to have his DNA analysed by the California-based company, he had not intended to test for this condition.
However, Brin considers himself 'fortunate' to have learned 'early in his life' at 35 that he has this mutation so that he may take preventative steps 'to reduce his odds' of developing the disease, such as through exercise, which studies suggest may help. Brin added that he can now personally research and prepare himself and his family as well as use some of his Google fortune (an estimated $15.9 billion US) to help fund medical research into Parkinson's.
Brin's surprising move to disclose his personal DNA-testing result so publicly exemplifies his belief that genetic data should be shared as an open-source informational tool for everyone to mutually learn and benefit from discoveries of ways to improve their lifestyles in light of known genetic information. This comes at a time when the predominantly unregulated direct-to-consumer genetic testing industry has come under fire by authorities and scientists to crackdown with strict new regulation.
Online direct-to-consumer genomic scans like those offered by 23andMe are advertised as recreational or 'lifestyle' services that help you learn about your genetic identity. While some of the tests screen for non-medical characteristics, like the ability to smell asparagus in one's own urine, others like Brin's G2019S mutation can reveal personal information that bears serious medical diagnostic implications.
Experts warn that bogus tests may cause individuals needless anxiety or false complacency. Many serious medical conditions like heart disease are caused by a complex interplay of multiple environmental and multiple genetic factors. The predictive value of isolated genetic information must be placed within this context, and the implications for many genetic tests are not fully understood. Critics advocate legally requiring genetic counselling and limiting genetic testing by physician-referral only.
Although 23andMe has welcomed good-practice standards, it objected to physician involvement preventing a direct-consumer market. Brin and his wife Anne Wojcicki contend that DNA-analysis is not medical testing but a new source of important genetic information about one's identity that should not be restricted. They argue direct-to-consumer testing should be regulated like over-the-counter pregnancy tests.
In June 2008, the US passed a law that restricts the use of genetic information by employers and health insurers, but left the private genetic testing industry unregulated. The UK, US and Australia have issued national warnings regarding online testing and initiated government consultations for regulatory reform. New York and California health officials recently authored cease-and-desist letters to leading genomic companies, including 23andMe, demanding licensing compliance and doctor approval. Last month, California licensed 23andMe and Navigenics. The American Medical Association endorsed these state initiatives with new policies at its annual meeting this year.