DNA Liminality

I’ve been thinking about getting my DNA sequenced for a while though I’m not entirely sure why. I’ve only been to see a doctor a relatively small number of times in my life and don’t spend a huge amount of time thinking about my health.

In talking about it with some of my colleagues we thought it might be interesting so sent off for our packs to 23andMe, a DNA sequencing company founded in 2006 by Anne Wojcicki, who is married to Google founder Sergey Brin. It only costs $99 per person and you can learn about your propensity for different diseases and your genealogical make up amongst other things.

And being 100%Open about things I spoke to a bunch of people about what we were thinking of doing and I was rather surprised by the response. A lot of people seemed passionately against the idea for various reasons, broadly around the following four themes:

  1. Imperfect Interpretation – Benjamin Ellis wrote a brilliant blog post here arguing that too much data with insufficient expert interpretation could be harmful and certainly doesn’t always lead to better decisions (and I don’t disagree by the way).
  2. Fear of the Future – And I met another guy recently who works in a healthcare related field so by way of making conversation I mentioned our plans to get our DNA sequenced. It turned out his young son had recently tragically become deaf and blind (apparently permanently) due to a rare genetic condition. He made the case, very convincingly, that we should live each day as it comes and too much knowledge (about what our genes might hold) could stop us from enjoying the moment through future anxiety about what may or may not happen to us.
  3. Health Insurance – Another misgiving from quite a few people was around health insurance, namely not getting any if you know you have a greater likelihood of getting a particular disease. I am fortunate to live in the UK where we have the NHS which provides a health safety net should anything happen and so I was less worried about this that if I weren’t British.
  4. Data Security – Finally, there was a concern on behalf of some of the people I discussed it with about giving your personal data away to a US company, an not being certain whether it would be kept safe/private, not what it would be used for (which links to all of the above points).

To add to any of these qualms, 23andMe have had bad press recently on the back of the US regulator, the FDA, questioning the health claims they are making and possibly trying to shut down the whole operation (which strikes me as overly heavy handed). See more on that here.

Notwithstanding all of those objections, all of which I think are valid, I still want to do it because a) I’m simply too curious and b) I think the potential positives outweigh the negatives. Specifically as I approach 40 (two months to go and counting) I am starting to count down as well as up, and if there is something in my test results that increases my likelihood of illness then I want to take preventative action sooner rather than later.

Yet I find myself, for the first time in a while, in a state of liminality. The DNA tests were completed and sent back last week and we should get the results quite soon. At present I intend to share some or all of the results as I’m not sure what I could possibly have to hide. Having said that I may feel differently in a few weeks time so I’m genuinely interested in what my reaction will be as I’m really not sure. I may, or may not, reveal all shortly.

by Roland

Comments

  1. Hi Roland,

    The ease and cost of having such tests are starting to have ethical implications for health and life insurance markets, so don’t feel too relaxed about having the NHS close at hand. The knock on effects to mortgages, even jobs, could start to kick in soon. Check out my four posts on this at my ethics and insurance dot info blog, beginning 8th Jan.
    And remember epigenetics, which could result in a huge ‘so what’ label being stuck across the results of your tests.

    Cheers
    Duncan

  2. Thanks Duncan. Those are a great series of posts on the subject and thanks for sharing.

    http://ethicsandinsurance.info/

    And take your point about the big ‘so what’ – I suspect that might be the most dominant response to getting the results. Will keep you posted.

    Roland

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