Genre: Factual, News magazine
On 2nd December 2014, the day that Direct-to-Consumer genetic testing by the company 23andMe was launched in the UK, the BBC’s Newsnight programme ran a 12 minute feature which included an interview with Anne Wojcicki, CEO of the company. As well as discussing the practicalities of what is involved, the story also included comment from Prof Mark Thomas from UCL who urged caution about taking these results too seriously, and reflections on the ethics of the approach (the Food and Drug Administration in the USA has banned 23andMe from making any health claims for their product).
Concerns include the accuracy of the tests (false negatives and false positives), appropriate interpretation of the results (do we really understand the link between a certain genotype and a disease) and data privacy (the data is kept by the company for research and sold to academics and pharmaceutical companies, but not – they promise – to insurance companies). Wojcicki confirmed that the test might be appropriate for couples who are dating, for example if allowed them to know in advance that they are both carriers for cystic fibrosis.
The second half of the clip features a discussion with Ewan Birney, Associate Director at the European Bioinformatics Institute, and Paula Boddington from Oxford’s Centre for Health, Lawand Emerging Technologies. Birney, who has a research interest in this area, has taken the test himself and found it a cost-effective way to access his own genome. Although he takes some of the results “with a pinch of salt” there was he felt merit in this approach. He sees it as only one of many forms of personal data which are out in cyberspace, including Facebook and financial details. “Some of that data” he says “is much more personal to me than my genome”. He reckons people can learn more about you from your supermarket loyalty card than they can from your genome. Boddington is rather more cautious, and does not consider it an appropriate gift for someone else. What if the test came back to indicate that you have a high risk for developing Alzheimers?
The following morning, the same story was included on the BBC Breakfast show. After the obligatory vox pop interviews out on the street (which are actually of slightly more value than such soundbites can often be), Anne Wojcicki was interviewed again.
As is usual with the Breakfast show format, the story was considered more than once. This 16 minute clip (http://bobnational.net/record/265770) is actually a combination of two “bites” at the story. The first (9 minutes) includes the interview with Anne Wojcicki and opinion from regular contributor GP Dr Rosemary Leonard and specialist guest Prof Neil Hall, co-director of the Centre for Genomic Research at the University of Liverpool. The second time around, Dr Leonard is joined in the studio by Manchester bioethicist Iain Brassington.
Those interested in knowing more about the ethics of Direct-to-Consumer genetic testing are recommended to read the Nuffield Council on Bioethics 2010 report on Personalised Healthcare, which includes a chapter on Personal Genetic Profiles of this kind. In 2013, my students also produced a video on DTC.