The report found ‘a broad majority of public support’ for information to be used for biomedical research and health service improvement, so long as people are consulted. However, referring to the RSS commissioned research into data trust, it acknowledged: ‘Support is said to fall away to a significant extent where they are not asked, or where the research involves private companies operating for profit.’
The report also warns that projects such as care.data may continue to be challenged if the public loses trust in the way its data is used. Professor Martin Richards, the Cambridge University professor who chairs the committee behind the report, said: ‘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.’
The report finds that the possible harms of data misuse are poorly understood, and that many are not even recognised in current UK regulation. It recommends the introduction of criminal penalties - comparable to those applicable for offences under the Computer Misuse Act 1990 - for deliberate misuse of data, and that health authorities track how data are used. It calls for data users to be clear about how they will be using the data and for people to be told if and when there have been breaches of data security.
Hetan Shah, executive director of the RSS, said: ‘We welcome this major report on the ethical issues around health data and expect it will make an important contribution to the debates in this area. We are particularly pleased to see our research on the “data trust deficit” referenced in the research, as well as our flagging of the need for a better system of registration of deaths in England and Wales’.