Consent and its discontents: the case of UK Biobank.

Abstract

UK Biobank is a major biomedical database and research resource, holding the genetic, health, and lifestyle information of half a million adult volunteers. Its datasets are accessible to approved researchers from academic, charity, government, and commercial organisations for health-related research in the public interest. Drawing upon a range of approved projects and the downstream applications of this research, I suggest that UK Biobank datasets have been processed towards ends that are inimical to its stated aims, breaking the terms of consent under which its participants entered the study. First, I provide an overview of the broad consent model employed by UK Biobank in recruiting participants and using their data. The consent documents and participant information leaflets used exhibit information failures in their framing of health-research in terms of disease and treatment, obscuring the full range of lawful uses of participants' data. Beyond this, certain approved uses of UK Biobank data, including studies by insurance companies and direct-to-consumer genetic testing companies, arguably fall outside UK Biobank's stated aims altogether. Moreover, UK Biobank has not adequately safeguarded against "dual use" issues. Tracking the trajectory of research outputs that used biobank data, I suggest that approved uses of biobank datasets have gone on to have objectionable further applications that are not in the public interest. Such applications include the development of polygenic scores that seek to predict "intelligence" for use in commercial embryo screening services. Such tools are rife with risk of harm and are being deployed without sufficient public deliberation or oversight.