Tuesday, 29 January 2013

Do participants in genomic studies really risk boredom?

There has been lots of news recently following the publication from Yaniv Erlich’s group at the Whitehead Institute on re-identifying individual participants in genomic studies. Anyone that has worked in forensics knows how little data is needed to unequivocally identify an individual. Erlich’s group demonstrated that it is possible to match an individual participant in a publicly available dataset with a relative who has deposited data in a genetic genealogy database. They did this by imputing Y-chromosome STR haplotypes from a dataset and then searching genetic genealogy sites to find matching STRs and probable surnames.

Identification: The paper is a good read and made good headlines, hopefully this is enough to push the debate over identification along a positive road.

Only a few weeks ago when the UK Prime Minister, David Cameron, visited our lab he was explaining that the £100M investment the UK was making into medical genomics would create a database where all data would be anonymised. I think politicians and policy makers need to be clear about what can and can’t be done with this data so the public are well informed about the benefits and risks of participating in genomic research. We do not want negative headlines that put people off, just in case their name appears in the Daily Mail. Of course this means that consenting may need to be a process that is followed up as new developments arise. One day soon we will be able to get a pretty good genetic photo-fit from the kind of data in the public domain.

Boredom: Christine Iacobuzio-Donahue runs the Johns Hopkins rapid autopsy programme. This aims to recruit patients and their families into a very emotive study requiring the collection of tumour tissue within a few hours of death. Their consent form lists the risks of participating one of which appears to be boredom; “You may get tired or bored when we are asking you questions or you are completing questionnaires.” At least they are being honest!

Their patient information sheet also makes specific references to the fact that your identity may be discoverable; “As stated above, your exact identity will not be provided in materials published as part of this study, but individuals who know you such as family members may be able to identify you to some degree of certainty from published information. Efforts will be made to make it difficult to identify you in this manner, but there is a risk that you will be identifiable by individuals who have prior knowledge of your diagnosis or medical history.” 

As scientists I think we need to do as much as possible to promote the work we do and interact with the public. Making people aware of the difficulties of research and being realistic about the rate of progress is important. We need individuals to participate in research studies like the one at Johns Hopkins.

Ideally we don't want people getting put off because they are bored, lets make those interactions as positive as possible!

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