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Event Review: Should Genes be Public?

03 March 2014

By Karen Birmingham

Research ethics manager and archive project manager, ALSPAC

Appeared in BioNews 744

The eight professors, including two Knights, who contributed to this event, were given a relatively easy time by the public, possibly because there was little time for questions or perhaps because the case for mass genotyping projects had been convincing.

Professors Sir John Burn, Stephan Beck and Sir Rory Collins, in presenting their very different projects (Genomics England, Personal Genome Project and UK Biobank respectively) agreed on one thing; vast numbers of participants are needed to produce results that would hopefully lead to medical advances.

The familiar ethical issues - consent, feedback and sharing data - were negotiated quite differently although the two UK-based projects had similarities in their approach compared to the Harvard-initiated Personal Genome Project (which is now extended to the UK).

The UK's unique position was alluded to more than once: the public's trust in the NHS (perhaps now vulnerable due to the clumsy introduction of care.data?); the tradition of national birth cohorts going back to 1946; the altruism of the UK public who give blood (it's sold in the USA).

Professor Burn gave heartening examples of conditions where the choice of treatment is, or soon will be, partially guided by patients' genetic make-up. He said that the project had been substantially funded by the UK Government, which had taken all involved by surprise and left them somewhat unprepared. He presented few risks for participants wishing to enrol but as consent forms had still to be finalised, the risks had yet to be articulated.

Genomics England's prioritising of cancer, rare diseases and infections was commended by Professor Marcus Pembrey. He mentioned that he had been worried that these conditions, which could be readily targeted with potentially great benefits to patients, would be bypassed for other more common disorders.

Professor Beck's description of the Personal Genome Project as 'citizen science' emphasised the qualities of the participants; not only their altruism but also their active involvement in the project.

To ensure genuinely informed consent, enrolment is only possible once an online examination has been passed. The risks are substantial, as consent allows for genuinely open (i.e. public) access to volunteers' genomic and phenotypic data. The participants can even choose to add their name and photographs to the data sets but even if they don't, it is made clear that anonymity cannot be guaranteed.

Despite the worst case scenarios outlined on the website - which go all the way to having identical synthetic DNA planted at crime scenes - there have been no participants withdrawing from the study or even expressing negative feedback. As one of the attendees said after the event: 'How can one withdraw when the data is already "out there"?'

Professor Collins, no longer recruiting for UK Biobank, did not have to be so enthusiastic. He generously acknowledged that response rates for Biobank were highest in Bristol because the population understands the benefits of cohort studies due to the locally-based 'Children of the 90s' project (also known as the Avon Longitudinal Study of Parents and Children or ALSPAC). He said he was proud to be an epidemiologist and not a geneticist as genetics was the easy bit; phenotyping was the difficulty, he said, especially aspects of lifestyle.

UK Biobank operates with a comprehensive policy for participant feedback - it gives none at all. Professor Collins began to justify this by saying that so many of the concerns that could be raised when looking at results came to nothing and were in fact 'false positives'. He ended perhaps more honestly: 'If we once started feeding back individual results we wouldn't know where to stop'.

Little time was left for the expert panel (Professors Paul Burton, Ian Craddock, Jane Kaye and Marcus Pembrey) to answer questions from the floor or indeed debate their own concerns. We were left wondering about the misuse of data, the unnecessary anxieties of the 'worried well' and the implications of the possible loss of trust in the NHS.

SOURCES & REFERENCES

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