The Wellcome Trust has released new information about UK public attitudes to the personal data and data linking, including views on risks and benefits and whether health data were viewed differently from other types.
Generally, market research found that younger people were less concerned about data collection and use than older ones, though there was a shared lack of trust in institutions and concerns about fraud and a general spectrum of views rather than two opposing camps.
Various benefits were identified such as allowing the Government to identify needs, plan resources and services, and allocate funds; convenience and time-saving, and the availability of vital medical information in an emergency. The main drawbacks identified were around data security and loss of privacy, including potential discrimination; unsolicited marketing and advertising; and an inability to correct inaccurate data.
Respondents often did regard health data differently; many felt that the NHS could improve care with better data sharing, but there was also a strong sense that such data would be confidential and sensitive, not to be shared outside the NHS and especially not with private companies such as employers, insurance providers and drug manufacturers.
Use of population health and medical data were generally regarded as beneficial, for the common good, but there was significant opposition to use for commercial gain, and the overriding concern was around individual identification and discrimination or stigmatisation, especially via the media. Complex ethical considerations did not really feature. However, there were worries about linkage of data – for example, refusal of medical treatment based on evidence of unhealthy diet, alcohol or tobacco consumption from supermarket purchasing information.
A Wellcome Trust debate on this issue focused on questions of control, consequences and contradictions, including how errors could be corrected, whether regulators would have the right expertise and data be correctly interpreted to inform policies. The importance of privacy and consent (including options for different levels of consent) were strongly emphasised.
Comment: These findings are highly pertinent to medical and genetic data collection and use, especially for Genomics England, the new body that is to oversee the 100K Genome Project including collection of sequence data, linkage with medical records and clinical application - and commercialisation - of the resulting resource (see previous news). The PHG Foundation Realising Genomics project is currently examining in detail the ethical, legal, and social challenges raised by whole genome sequencing (WGS) and whole exome sequencing (WES) in clinical practice and research, including issues of consent and handling big data.