Safeguards for research using large scale DNA collections

Abstract

Based on a presentation from the Millennium Festival of Medicine Public trust in the medical profession and the conduct of medical research has been seriously eroded in the wake of events at Bristol Royal Infirmary, Alder Hey and North Staffordshire Hospitals, and the scandals caused by Harold Shipman and other doctors recently struck off for malpractice. Although the characteristics of these cases differ from each other, the cases have become joined in the public mind, leading to sustained criticism of the system of professional self regulation centred on the General Medical Council. This criticism has even come from within the profession itself, most notably from the BMA.1 Declining confidence in the governance of clinical practice has serious implications for medical research. Recent studies looking at public opposition to genetically modified foods and the social psychology of risk have shown that the level of trust in the institutions governing a particular activity is the key factor affecting public perceptions of risk in that area.2 The loss of confidence in the Ministry of Agriculture, Fisheries, and Food and the agencies responsible for food safety following the uproar over bovine spongiform encephalopathy laid the foundation for widespread public scepticism about the safety of genetically modified foods. If there continues to be erosion of trust in the medical profession there is a real danger that controversial areas of research, such as genetics, will provoke increasing levels of public opposition. It is in this context that the proposals for the creation of a very large collection of DNA samples for genetic research should be examined. #### Summary points Recent experience in Iceland shows that the creation of large scale databases of personal information linked to DNA collections can be highly controversial The proposed UK Population Biomedical Collection will be used for genetic epidemiology and will contain …