The NY Times has an article entitled “Buyer beware of home DNA tests” that adopts the paternalistic party line of the medical establishment: taking DNA tests without a doctor’s advice is hazardous to your health.
Remarkably, the article acknowledges that qualified genetic counsellors are few and far between and that “most practicing physicians lack the knowledge and training in genetics to interpret [DNA tests] properly”, and yet still suggests that customers should “take the findings to a qualified expert”.
Begging the question: which qualified expert should customers be taking their test results to? The over-worked genetic counsellor who has enough on their plate dealing with serious genetic conditions without having to worry about a patient with a type 2 diabetes relative risk of 1.17? Or the general practitioner who understands less about modern genetics than the typical DTC genetics customer?
Until the medical community corrects its utter failure to anticipate the emergence of modern genetics, the best advice for a DTC genetics customer is this:
- Do your research before you buy a test;
- Only buy a test from a credible provider;
- Read as much as you can (both from your provider and from independent sources) about what your results mean;
- Engage with your data, question it and follow up with your provider if you find your results to be contradictory or confusing; and finally
- Seek medical advice if you are considering using your test results to make major health or life-style decisions.
Don’t get me wrong – when it comes to serious medical decisions, doctors know stuff that Google doesn’t. But right now, the probability that your regular doctor would be able to give you a more accurate impression of your 23andMe results than you get from the 23andMe website along with independent reading is very, very small.
It’s clear that the NY Times writer has spent a little too much time chatting to people taking the traditional medical view of genetic information, without considering that these people have a strong motivation for keeping people scared about the dangers of unguided access to their own genomes. I think this warrants a recycling of a statement I made in a post back in April:
It’s important to view this debate in its social context, as a turf war in which clinical geneticists are fighting an increasingly desperate rear-guard action to defend their traditional monopoly as purveyors of genetic health information from commercial usurpers.
So long as there are personal genomics companies doing a better job of explaining complex genetic data to consumers than doctors can, it’s hard to see advice like “take it to your doctor” as anything other than desperate, protectionist spin from an establishment rapidly losing traction on its long-term monopoly.
And it’s not just personal genomics companies that are doing a good job of conveying information to customers: personal genomics customers themselves are also forming and enthusiastically engaging in communities to share the details of their results. As these communities grow in size and expertise they will become more and more valuable sources of information for new customers. Dan Vorhaus has an excellent recent post
(spinning off from recent discussion
about errors in personal genomic data) arguing for the value of “crowd-sourcing” genetic data in this way. For most types of DTC genetic data, customers will get far more out of engaging in these communities than in taking their data to their GP.
There are nuances here, which I can’t explore in detail here – but for more sensible discussion of the NY Times article you should check out this balanced post from Jen McCabe
. Here’s a taste:
Do I expect DTC genetic testing companies to ‘cure’ Celiacs? Or breast cancer? Not mine, maybe (and don’t worry, I don’t have breast cancer, but I DO have Celiacs). But I also understand that to advance the study of these conditions as a whole DTC genomics companies are paving the way for consumers to consider our genetic data our OWN asset(s). Any sector that accomplishes this lofty goal – and has established a collection, storage, and sharing process for this data to connect (eventually) my individually relevant personal health data to public health researchers with whom I elect to philanthropically share it – has my vote for a sector where e-Patient advocacy is beneficial (mine, and others).