Editor’s note: Pending an FDA decision, 23andMe no longer offers new customers access to health reports referred to in this post. Customers who received their health information prior to November 22, 2013 will still be able to see their health reports, but those who purchased after that time will only have access to ancestry information as well as access to their uninterpreted raw data. These new customers may receive health reports in the future dependent on FDA marketing authorization.
Thank you, Virginia.
In a recent article in Slate, Virginia Hughes, who also blogs for National Geographic, nails it, hammering home the point that people are much smarter and tougher than they’re depicted in many news articles about genetic testing.
We’ve written before about what feels like fear mongering in some stories about DNA testing. Hughes writes that a lot of the media coverage is stuck on the same refrain that people won’t be able to handle the information they get from genetic testing.
“…this is the wrong question, or at least one that’s becoming increasingly irrelevant,” Hughes writes. “The personal genomics horse has bolted, and yet many paternalistic members of the medical community are still trying to shut the barn door. In doing so, they’re fostering a culture of DNA fear when what we really need is a realistic and nuanced genetics education.”
That last point, the need for more genetic literacy is key. Instead of covering the gap in genetic knowledge, some writers play up this diffuse fear that a test is going to tell you your destiny or that the information is just too difficult to handle.
Hughes argues that the commonly-expressed opinion, “…that a nonexpert couldn’t possibly understand the concept of uncertain risk and would therefore be harmed by the knowledge” is “patronizing” and “probably false.”
She goes on to say that it’s better to deal with the reality that people want access to their genetic information, and that more and more people are getting tested every day. It’s time to bring a more nuanced approach to how we talk about it.
A Hughes writes, “There’s no way around the fact that genomes are complicated and, at least for now, difficult to interpret. And sometimes, yes, they will lead to unpleasant information. But [genetic information] isn’t going to suddenly fade away. More and more people are getting their DNA sequenced and eager to find out what secrets, if any, it holds. So let’s figure out how to tell them.”