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Vishal Gulati

Why Washington Post Should Stop Worrying About Genetic Tests

October 5, 2015

DNA TESTINGWe live in the genomics era and Washington Post should stop presenting Genetic Tests like they are some new, unique and crazy thing and that patients should be protected from them. First complete human genome was sequenced nearly 15 years ago and as its applications become available to people, genetic tests have become the latest in the long line of things that people must be protected from, for their own good (lets not forget the pervious occasions in history when we attempted to protect people from knowing too much). The article goes on to say that there is so much uncertainty around some of these tests (like MTHFR) that if people get these tests and then (heavens forbid) Google it, they find a lot of confusing information and this is not good. If you did that, you could end up like Amanda Webb of Arlington, Ohio. All confused.

It is also claimed that quacks are cashing in on the genomics bonanza by offering these tests online and then selling people health supplements.

I am not doubting for a moment that people will be confused, I am also not doubting that there are quacks who are doing bad things. But my objection to Washington Post’s position is as follows:

  • Genetic tests are not unique in causing confusion about how they may be related to the conditions to which they are linked. This applies to a lot of information including traditional tests (anyone remember PSA, Mammograms)
  • Washington Post will have to go very very far into the history to find a time when there were no quacks offering people dodgy health supplements in order to make them better. No, seriously, there is probably no point in human history when quacks have not existed and not tried to exploit confusion and credulity of general public.

There is also a broader point which is that scientific development does not happen in the form of linear eureka moments of epiphany. They happen by hit and trial and a lot of research results may point in conflicting directions for a long time before a pattern or a general direction emerges. It is a mistake for media to sell science as a business of certainty. Science is, at its best a discovery enterprise and media outlets should be doing more to educate people around that.

A number of studies have shown that most people were instinctively aware of the inherent uncertainty in genetic tests and that they were willing to improve information access and use it as a means of discovering more about themselves. In fact Washington Post’s cousin New York Times did a piece on this in 2011. Maybe they can take some advice from them. Here are some quotes from that article:

“The medical field has been paternalistic about these tests,” says Peter J. Neumann, the lead author of the study, who is director of the Center for the Evaluation of Value and Risk in Health at Tufts Medical Center. “We’ve been saying that we shouldn’t give people this information because it might be wrong or we might worry them or we can’t do anything about it. But people tell us they want the information enough to pay for it.

“Up until now there’s been lots of speculation and what I’d call fear-mongering about the impact of these tests, but now we have data,” says Dr. Eric Topol, the senior author of a report published last week in The New England Journal of Medicine. “We saw no evidence of anxiety or distress induced by the tests.”

https://twitter.com/vgul/status/648088699809464320

The story behind the most exploited gene in our DNA

Source: Why you shouldn’t know too much about your own genes