The health informatics blog has an interesting posting on the genetic testing service, 23andme, and Google baron Sergei Brin’s experience with being tested for Parkinson’s disease via this service. Apparently, his likelihood of getting Parkinson’s disease is higher than average.
The health informatics blog mentions that this may affect Brin’s support of certain research organisations and charities over others. Seeing as Brin is being very public about his test findings, one would expect prospect researchers affiliated with Parkinson’s disease groups to start inundating him with pleas for donations and gifts.
I wonder also about the psychological impact of knowing you are at a higher risk of a disease–will you start to see symptoms in every tic and leg cramp (a.k.a Medical students’ disease)? Is it possibly to psych yourself into having the disease? Whereas, if you hadn’t know you might be at high risk, would your ignorance have any protective effect?
A systematic review in Nature (2000) suggests that both carriers and non-carriers experienced a reduction in distress after being tested–unsurprisingly, this was more immediate in non-carriers. However these studies were few and limited to a small number of genetic conditions (ovarian and breast cancer, Huntington’s disease, familial adenomatous polyposis and spinocerebellar ataxia). The populations were self-selecting and studies were observational.
A 2008 study of testing for long QT syndrome in people with family histories suggests that there is a short-term increase in distress in carriers and their partners that returns to normal long term. However, when the electrocardiogram was uncertain, the distress was, understandably, more likely. Most of the people followed were ‘back to normal’ after 18 months of follow up.
There seems to be some consensus that although testing can be distressing, it does not cause lasting harm and proper counselling should be built into the testing procedures.
(the) health informaticist 