Big Data initiatives such as President Obama's precision medicine program and the United Kingdom's 100,000 Genomes Project risk losing public trust unless they consider the moral and legal implications of their work, a report has warned.
The report by the Nuffield Council on Bioethics is focused on the U.K.--which experienced a backlash against the use of health data last year--but its conclusions are relevant to programs around the world. After researching the topic for several years, Nuffield's bioethicists concluded the increased linking of multiple sources of health data will make it impossible to guarantee anonymity. As such, the public's trust in the people managing the data becomes particularly important.
Legal safeguards only provide part of this trust, the report argues. The rest should come from the creation of transparent, "morally reasonable" expectations about the management and use of data. The organizers of the U.K.'s care.data initiative--which planned to use medical records from general practitioners for research--failed to establish shared expectations and trust with the public, leading to the delay of the program.
The mismanagement of care.data has deprived U.K. researchers of a valuable resource, at least in the near term. Nuffield fears other programs could suffer the same fate if they fail to properly engage with the public. "People understandably have concerns about their privacy. If we don't get this right, we risk losing public trust in research, and ultimately missing out on the benefits this type of research can bring," University of Cambridge professor Martin Richards said in a statement.
Recommendations in the report include the mandatory reporting of privacy breaches to affected individuals, imprisonment for deliberate misuse of records and publication of all data sharing agreements.