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One comment on “When DNA means do not ask”

• Monique Meinecke

  March 16th, 2010 at 20:40

  I found this today…a blog entry regarding the ignorance of the above author, Camilla Long.

  Willful ignorance is not an effective argument against personal genomics
  Category: direct-to-consumer genetic testing • personal genomics
  Posted on: March 14, 2010 1:00 PM, by Daniel MacArthur

  Camilla Long’s appallingly bad op-ed piece about personal genomics in the Sunday Times is a true masterpiece of unsupported criticism, and an ode to willful ignorance.

  I’d encourage readers to discover their own favourite errors and misconceptions (there are plenty to go around), but here are some of the more glaring flaws:

  Direct-to-consumer genetic testing is not illegal in the UK.
  Long claims:

  Although most of these tests seem pretty harmless and are marketed as “educational” rather than “diagnostic”, in the UK such over-the-counter kits are outlawed.
  She’s completely wrong. In fact there’s no law in the UK against DTC genetic testing, although it is illegal to test someone else’s DNA without their permission.

  Why doesn’t someone writing an op-ed piece about personal genomics know this?

  Learning of your genetic risk is unlikely to be harmful
  Long profoundly exaggerates the risks of learning of one’s own genetic disease risk:

  Even if the tests were more accurate and reliable, what about the pieces to be picked up when the results come in? The cost to our collective mental health is incalculable.
  Rubbish. There’s currently no evidence to support the notion that learning about genetic risks of future disease do any long-term harm to a person’s mental health, and growing evidence suggesting that such information does essentially zero long-term damage. For instance, the results of a recent study concluded that “[t]he disclosure of APOE genotyping results to adult children of patients with Alzheimer’s disease did not result in significant short-term psychological risks”.

  Plenty more research needs to be done in this area, but the notion of “incalculable” damage to mental health resulting from test results is utterly absurd, and entirely unsupported by the existing literature.

  Willful ignorance is not an argument
  The last half of Long’s article is a paean to ignorance, peppered with disbelief that anyone might gain something from learning that they had increased disease risk:

  And who — in their right mind — would want to know? I wouldn’t. I’m already aware I’m at risk; that’s enough. I certainly wouldn’t want to know for sure that I was doomed — weird, that — just as I wouldn’t want my children to worry about it, either.

  [...]

  Even learning small truths about your genetic code, such as where your ancestors come from, can be a weird experience… I had my maternal ancestry analysed (just for fun, honest)… I don’t know what I would do with more serious genetic information and I don’t know what other people would do with my genetic information, either.
  Here’s a hint: just because Camilla Long can’t figure out what to do with information doesn’t mean other people can’t. There’s plenty of people out there – people, I suppose, without Long’s bizarrely fatalistic view of genetic information – for whom the knowledge of an increased genetic potential for heart disease could be enough to save their life.

  There’s even value to uncovering risk for diseases that can’t be prevented: for instance, someone who knows they have an increased risk of Alzheimer’s can learn more about the illness, prepare their family for the future, and ensure they’ve set aside enough money to pay for long-term care. Or does Long honestly believe that the only possible response to such information is to “have more fun in the short term, to buy that speedboat or get wasted more often”?

  Researchers have already isolated genes that indicate if a person disagrees with alcohol. What if you’ve got a gene for seriously agreeing with it?
  Let’s think: what could you possibly do if you learnt that you were more susceptible than average to alcoholism? Can anyone think of any way in which that information might be useful to you? Well, Long clearly can’t.

  Space tourism is not an insult
  Long finishes with what she no doubt regards as a knockout blow:

  This is not an argument against knowledge. This is an argument against an expensive, largely pointless service endorsed by a celebrity for misleading reasons: it’s the genetic equivalent of space tourism.
  Firstly: actually, Long’s article is an argument against knowledge; it’s a clumsy, ill-informed dismissal of the notion that the information gained from genetic testing can have any benefits whatsoever to its recipients, laced with outlandish and unsupported claims of the dangers that testing can pose. It’s a disgrace of an article of which she should be profoundly ashamed.

  Secondly: the metaphor between space tourism and personal genomics is a good one, but not for the reasons Long thinks. Just as space tourism will result in the money forked out by a few wealthy individuals being converted into expertise and technology that will ultimately benefit others, so too will these first genomes – celebrity or otherwise – help to pave the way for medically relevant genetic information for the rest of us.

  For an eloquent counter-point to Long’s metaphor, see Jason Bobe’s short and excellent opinion piece in praise of genomic astronauts.

  Ignorance should be a choice
  If Long wishes to stay ignorant of her own genetic risks – just as she has managed to remain ignorant of the entire field of genetics, even while writing an op-ed piece about it – that should be her choice. But her criticism of others who choose to pursue a greater understanding of their own genetic risk is entirely, horrendously misplaced.

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