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Event Review: Who owns your genome?

3 October 2016
Appeared in BioNews 871

Do you know who owns your genome? And who, if anyone, would you choose to give your genetic information to? This debate, organised by the British Science Association and supported by Genomics England, covered the cutting-edge issues in genomic ethics and legality.

Professor Mark Caulfield is chief scientist of Genomics England, and made the case for donating your data to the 100,000 Genomes Project that he helped set up. The project has already started to help reduce the rare-disease burden, with the first children receiving diagnoses for their illnesses earlier this year at Great Ormond St Hospital. There is an aspect of industry involvement – but none of the companies will hold any intellectual property (IP) on the genomes. Instead, the IP will belong to Genomics England.

The panel generally agreed that such industry involvement is an inevitable aspect of our capitalist society and a vital part of drug development. Not all those who had donated their genome to the 100,000 Genomes Project felt the same, however – one donor challenged Professor Caulfield during question time, saying that he would rather not have the involvement of any private companies with his data.

This attitude is a very common one among the public, revealed genetic counsellor Dr Anna Middleton, who is head of society and ethics research at the Wellcome Genome Campus. She found that the majority of people would share their genetic information with their doctor and non-profit researchers but that far fewer would choose to share altruistically with a for-profit company. Interestingly, she found that people feared being inappropriately targeted for marketing, rather than being discriminated against for life insurance (which, she assured us, is a fallacy anyway).

Dr Middleton also highlighted that genetic testing has become standard in almost every NHS department, from oncology to obstetrics. She made the audience sit up by pointing out that even if you have not have donated data, if one of your relatives has been treated recently by the NHS, the likelihood is that your genes are on the system!

Professor Sir Mark Walport, the government's chief scientific adviser, argued against treating genetic data any differently to ordinary medical data. Legislative bodies exist for other aspects of modern medicine, such as the Human Fertilisation and Embryology Authority (HFEA). He suggested that if a safe, accountable and trustworthy system exists, people will be happy to donate their data; although he did acknowledge and despair of the 'cognitive dissonance' that leads people to share personal data on social media, but not share key data with scientists!

Writer Timandra Harkness, the author of Big Data, shocked the audience with an alarming FBI anecdote. During an interview an agency representative suggested it was possible to use someone's genome to design a personalised bioweapon – and then admitted the FBI could offer no protection against this futuristic assassination. More mundanely, genetic information could also be used for identity theft. Despite these risks, Harkness argued that your genetic data is medically useful and should be shared, asking 'is it moral not to share data if it would benefit wider society?'

The 'futurist, transhumanist' researcher Dr Anders Sandberg was the only panellist who spoke of having genetic testing. This was because his aunt had the BRCA1 mutation and caused a family schism by warning the rest – some family members did not want to know their risk. This anecdote illustrated some of the philosophical dilemmas of genetic information. Sandberg contentiously argued that normal concepts of privacy do not apply to genetics because we 'leak' genetic information everywhere we go. He believes updated legislation is the only way to stop future misuse of the data.

The panel was clearly divided on the ethics of data sharing. Professor Walport took an attitude that is fairly typical of genetic researchers as he didn't see why people shouldn't altruistically share their data. Harkness went further, saying it was a moral obligation to share and support either a compulsory (e.g. Kuwait) or an 'opt-out' (e.g. Iceland) genetic-sharing scheme. Dr Sandberg introduced a note of caution, pointing out the concept of free will and arguing against donating information to morally dubious societies.

The general consensus was that effort was needed to change people's perception of pharmaceutical companies and make the public happier to donate to them. Eventually all agreed that the 'opt-out' model erodes trust as it relegates a person's body and genes to state property. Dr Middleton advocated an 'informed model', which would require more work but would engage the public in their genome ownership. After attending this lively debate, I certainly felt more informed and engaged with my genome!

The conversation was tweeted under the hashtag #futuredebates.

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