Archive - Mar 6, 2012

Psychological Issues of direct to Consumer Whole Genome Sequencing

Last month, I wrote a blog post about personal Genomics. It is a topic I've been getting more and more interested in. The other day, a friend tweeted about a discussion on LinkedIn, Would you have your genome sequenced?.

84% of the respondents said they would. The subsequent discussion hit a lot of issues, including how testing relates to various U.S. Federal acts like the Health Insurance Portability and Accountability Act (HIPAA), the Americans with Disabilities Act (ADA), and the Genetic Information Nondiscrimination Act (GINA).

One person posted a link to a blog post, Whole Genome Sequencing and Calculating Risk Tolerance. The blog post pointed to an article, Harvard Mapping My DNA Turns Scary as Threatening Gene Emerges. It was an article I concurrently found links to from a different discussion.

The author, through genetic testing, discovered he had a variant called JAK2, associated with rare, cancer-like, blood diseases. It is a great article and well worth the read. As the author explored the ramifications of finding out about genetic propensities to rare diseases, he noted

a 1999 study in the American Journal of Human Genetics found that about 1 percent of 4,527 people who were told they had the gene that causes Huntington’s disease, a progressive nervous system disorder, attempted or committed suicide, or were hospitalized for psychiatric reasons

Does knowing about certain risks, link that of Huntington's disease increase other risks, like that of attempting suicide? How should we, and particularly, how should genetic counsellors, deal with these shifting risks? Should genetic counsellors get get some training in psychology, or work with psychologists?

I'm not sure, but even after reading all of this, if there was affordable direct to consumer Whole Genome Sequencing available, I'd still go for it. But then again, I like to explore new technologies and innovations, partly in hope that my explorations might help others.

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