John Gillott has mixed feelings

There are a number of issues that give me cause for concern: feedback; wider family data storage and use; and withdrawal.

On feedback, it is my understanding that some basic data such as blood pressure may be given to participants, but that other data, specifically genetic information, would not be fed back. It seems likely that some genetic tests for highly predictive genes will be done on samples, if for no other reason than to avoid such factors obscuring the search for genes of smaller effect.

It may be possible for UK Biobank to maintain its existing policy of no feedback, but such a scenario suggests at the very least that participants will need a very thorough discussion of the issues if they are going to waive what many would see as reasonable expectations under a duty of care. Has this been fully planned and considered?

Consent is satisfactory

UK Biobank is seeking broad consent from participants to ‘participate in UK Biobank’. As stated in the public draft: ‘Given that it will be impossible to anticipate in advance all the uses to which the resource will be put, consent will be based on an explanation and the understanding of, amongst other things: the purpose of UK Biobank; the fact that UK Biobank will be the legal owner of the database and sample collection; the kinds of safeguards that will be maintained; and the policy for making decisions on research access.’

This approach has met with criticism from a range of scholars and campaigners who fear that it contradicts contemporary ethical and legal standards that emphasise informed and specific consent, and amounts to giving carte blanche to researchers. It is suggested that this problem is particularly important on account of the sensitivity of the data (including genetic data) concerned.

In contrast I would endorse the approach taken by the project on this central question. Not only is it eminently practical, it is also consistent with what we know about the views of prospective participants, many of whom are reasonably happy to give a general consent and do not see genetic data as especially sensitive.

John Gillott is Policy Officer at the Genetic Interest Group.