Twice in the last few weeks Anne Wojcicki, of 23andMe, has strongly defended genotyping children, including her own. What's behind this? Given the public-relations expertise of the Google-backed company, it's worth taking a look.
In an interview with Mark Henderson of the London Times, she said:
Between now and the time he’s 18 I’m going to have to make a lot of decisions about what’s beneficial for him. To me, knowing whether he’s at high risk of various conditions is going to be beneficial to him.
And, answering questions at the New York Times Freakonomics blog:
Regarding genotyping of children, we have carefully considered the guidelines issued by groups such as the European Society of Human Genetics. ... We have chosen to give parents information and let them decide when, whether, and how to have a conversation with their children.
The reference to ESHG guidelines [pdf] is somewhat disingenuous, since they include:
Genetic counseling is always required when considering genetic testing in asymptomatic minors.
Others go further. The UK Human Genetics Commission is currently holding a public consultation about Direct-to-Consumer (DTC) genetic testing, to discuss a draft that says:
With the exception of paternity tests, genetic tests in respect of children when, according to applicable law, that child does not have capacity to consent should normally be deferred until the attainment of such capacity, unless other factors indicate that testing during childhood is clinically indicated.
There are particular questions about consent. David Gurwitz et al. wrote a recent Commentary in Science that addressed them in relation to biobanks in general. Unlike patients with schizophrenia or other conditions that make their consent problematic, "children are vulnerable, but unique, for their vulnerability is temporary." As a consequence, the authors recommended:
Access to samples and individual DNA sequence data from children included in population biobanks should, when feasible, await their consent as adults.
An important part of 23andMe's business model is the collection of genotypic and phenotypic data which can be sold on to researchers. It's easy to see the value of multi-generational data, but is it necessarily in the interests of the child?
Wojcicki deserves some credit for talking about this increasingly controversial issue, which is surely her best public-relations move, but much more discussion is definitely needed.
Previously on Biopolitical Times: