The UK’s independent authority set up to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals.

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PHG Foundation's project centred on the impact of the GDPR and DPA 2018 on genomic technologies in healthcare and scientific research. With increased implementation of genomic technologies, such as whole genome sequencing and an emerging infrastructure for service delivery and testing, there remains a need to clarify what, under the GDPR, constitutes genetic and personal data, the factors influencing this determination and how the legislation impacts healthcare and research.

Via legal research, a multidisciplinary workshop and interviews with key stakeholders, the project addressed three key questions regarding the identification of genetic and genomic data as personal data, the impact on the delivery of health and social care of such identification and a review of how potential harms might be mitigated. Project outputs included discussion papers, a report and an academic publication.

Outputs

The report produced was  The GDPR and genomic data. You can read a news release from PHG Foundation about the report here.

Simon McDougall, Executive Director for Technology and Innovation at the ICO, said:

“PHG Foundation’s report The GDPR and genomic data explores a complex area of key interest for the ICO. As one of its roles as a UK regulator, the ICO continues to work to maintain and understanding of the implications of emerging technology and research.

“The project report engages with a variety of key issues relating to data protection, including the identification of personal data in new areas of research, appropriate data sharing and its key challenges, and the importance of anonymisation techniques.

“PHG Foundation’s project is a vital step towards understanding how the legislation we regulate impacts healthcare and research, and I’m delighted our grants programme has assisted with this important work.”

 If you'd like more information, please contact the ICO's grants programme.

Watch the video below to hear the recipients of PHG Foundation’s grant discuss their project.

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