18 October 2010
ByAppeared in BioNews 580
Whose Genome Is It Anyway?
Organised by the Royal Institution of Great Britain
Royal Institution of Great Britain, 21 Albemarle Street, London W1S 4BS, UK
Thursday 14 October 2010
Would you publish your genome? Last week, the 12-member Genomes Unzipped project published their direct-to-consumer genetic test results online. They say they're dispelling fears and encouraging discussion about what genetics means for society. But, in a Royal Institution debate on Thursday, Wellcome Trust Director Sir Mark Walport said openly disclosing their DNA would - like drunken Facebook party pictures - return to haunt them.
'I'm quite happy to have my DNA sequenced, but I'm not prepared to publish it on the Internet. I think you've opened up the possibility for everyone to look at it and discriminate', he said. By linking genes to names, he said Genomes Unzipped had clouded, not clarified, discussion on genetics: 'By identifying yourself, you confuse privacy with what you can learn from your genome'.
Sir Walport was debating against two Genomes Unzipped members. Dr Daniel MacArthur, a geneticist, argued privacy and genetic discoveries are linked because scientists can't ensure anonymity for research subjects. 'As we move towards the studies that make personalised medicine a reality, we will look at blood pressure measurements, hair, eye colour and geographical location. The more data you collect, it rapidly becomes possible to narrow it down to an individual', he said.
An alternative could be the US Personal Genome Project where research subjects agree to make their medical records and genetic data openly available. Information sharing could be a good thing, Dr MacArthur said about direct-to-consumer testing company 23andMe: '23andMe customers can fill in surveys the company can use for research. People looking at the findings in their own genome might keep them interested. This participatory research is something more academic researchers will think about'.
'I think this is a ridiculous argument', Sir Walport said. 'Could someone wicked drill into this information and come up with me? Yes. What should happen to that person? They should go to prison'. Nurses and doctors, he said, see confidential information every day and don't leak it. 'There is no reason to think the model of confidentiality and respect is broken'.
Sir Walport said he and his wife had contributed to the UK BioBank, a study of how the health of 500,000 Britons is affected by their lifestyle, environment and genes. 'I answered personal and intimate questions', he said. 'I wouldn't have taken part in Biobank if my data wasn't going to be anonymised and I'm slightly offended you don't think my confidentiality will be respected in future'.
Genetics poses no new medical security risks, said Sir Walport. 'You wouldn't lose 100,000 DNA sequences - they're large pieces of data. There are no new principles. We over exaggerate confidentiality in the health service - the number of breakdowns are few'. Data security in health is an area where Dr Caroline Wright, Head of Science at the PHG Foundation and a member of Genomes Unzipped said she hoped to encourage debate.
Genomes Unzipped also hopes to improve media discussion. 'We see headlines like the gene for cancer. There are lots of different genes involved in different cancers. We've seen a rash of these articles recently', said Dr MacArthur. 'There are writers talking about the failure of genomics - saying the last ten years taught us nothing'. He argued these stories were unsophisticated, but the easiest to write.
Again, Sir Walport suggested Genomes Unzipped overstated the need for improvement and awareness raising. 'I think it's remarkable the amount of genetic coverage - there's dramatically more than five or ten years ago. I think there's a lot of good commentary - lots of people do think about it. There's no single public, but lots of different audiences. If you look at genetics compared to other aspects of research or scholarship, I think it's remarkably good actually', he said.
The Genomes Unzipped duo and Sir Walport agreed genetic testing should be available to the public. 'I don't think it's a good idea, but we live in a society where people do unwise things', said Sir Walport. 'We don't put people in prison for doing unwise things'. All 12 members of Genomes Unzipped have had their DNA tested by 23andMe. Several have also had their DNA tested by other companies - Counsyl and deCODEme.
In the future, GenomesUnzipped hope to review genetic testing companies and develop tools for the public to analyse their own genomes from the privacy of their computers. Raw genetic data and reports from 23andMe are currently available on the website along with a 'genetic browser'. The public can use the browser to pull out genetic information like the DNA that makes people's urine smell when they eat asparagus.