Sharing data for public good: How can privacy be protected?
20 December 2021
Sharing data across and between public bodies and other organisations could create a number of social, environmental and economic benefits— improving, for example, healthcare services and facilitating insights which progress research and innovation. There are, however, risks posed by increased data sharing, including individuals' rights to privacy. It has also been reported that poor data governance has led to an "erosion in public trust in the use of data".
Today, the Science and Technology Committee launches a new inquiry, The right to privacy: Digital data, which will explore the ways data is currently shared and used across Government, the public sector and industry, and the need to balance people's privacy with the need for effective use.
On 22 June 2021, the Government published its draft strategy ‘Data saves lives: reshaping health and social care with data’, proposing "a new duty to share anonymous data safely and appropriately across the entire health system". With real-world applications, including NHS Digital's plans—for research and planning purposes—to make greater use of the medical data of patients in, the cross-party Committee will be examining the Government's proposals to ensure that data protection is maintained.
Chair of the Science and Technology Committee, Rt Hon Greg Clark MP, said:
"The benefits of effective data sharing could be huge—enabling researchers to spot patterns in patient data, and advancing knowledge in the fields of science and medicine. However, pooling and sharing data gives rise to important questions of privacy, as well as the extent to which individuals have ownership of data that is personal to them.
We will be examining how the Government can combine the right to privacy with effective data sharing."
The Committee is therefore seeking written submissions until Friday 28 January addressing any or all of the following topics:
- the potential benefits, including to research, to effectively use and share data between and across Government, other public bodies, research institutions and commercial organisations, and the existing barriers to such data sharing;
- the extent to which data issues are appropriately addressed by the Government’s National Data Strategy, its draft strategy, Data saves lives: reshaping health and social care with data, and its consultation Data: a new direction;
- the ethics underpinning the use and sharing of individuals’ data in health and care contexts;
- the extent to which appropriate safeguards and privacy are applied in the usage and sharing of individuals’ data; and
- the effectiveness of existing governance arrangements, e.g. the Centre for Data Ethics and Innovation.
The Committee values diversity and seeks to reflect this where possible. The Committee encourages members of underrepresented groups to submit written evidence.