Nov 8, 2012 - Research

Data on Personal Genetics at ASHG

There are many pie charts, numerical tables, and graphs on display this week at the American Society of Human Genetics in San Francisco, but one caught our eye Wednesday morning.

It was a graph by Dr. Cinnamon Bloss of the Scripps Translational Science Institute. Scripps has been studying consumer reactions to genetic testing for several years.

The graph tracks the coverage of direct-to-consumer genetic testing in academic journals over the last ten years. What’s interesting is how widely divergent the lines are between the number of opinion pieces and actual studies. While the number of studies into direct-to-consumer genetic testing ticked up modestly, the number of opinion pieces increased exponentially.

Bloss and her team broke down the arguments made in those pieces – both pro and con – and concluded that these are all opinions they could study and gather evidence on. Do these tests induce anxiety, for instance? Or do people understand the information they get from these tests? Do they take action on what they learn or talk to their doctors?

Scripps Translational Science Institute Graph

We’ve written a little about some of the work Bloss and her team have already done. She covered some of that territory again, showing that, for instance, several studies indicate that direct-to-consumer genetics testing does not induce high levels of anxiety among people who have these tests done.

What was nice about the graph – and the discussion during which it was presented – is that instead of batting about opinions, the speakers talked about what they’ve learned from some of the most recent studies into consumer genetics. (The panel included 23andMe’s Senior Director of Research Joanna Mountain.)   (Editor’s note: Ricki Lewis had an excellent post about this panel on the PLOS blog DNA Science.)

It was interesting to learn that people are not only not worried about exploring their genetics, but they genuinely desire access to that information. A study by Dr. David Kaufman of Johns Hopkins University, who was also on the panel, showed that people reacted to getting this information by talking to their doctors or simply seeking more information about conditions.

Dr. Sandra Soo-Jin Lee of Stanford presented data from her study on social networking and genetic testing. In it, she found that a high percentage of people openly share their genetic information not just with their doctors but also with family and friends.

23andMe has helped some of these researchers connect with our customers. Joanna explained 23andMe’s rationale for working with academics during the panel discussion. There are many reasons, but one of the main motivations is to learn more about what kinds of information customers respond to and what they find most useful. This helps us improve what we do.

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