The linking and use of biological and health data
As implied by the mission statement of the PHG Foundation - ‘making science work for health’ - our focus is translating advances in biomedicine and genomics into better population health.
We are therefore broadly supportive of individual biodata being used more creatively and more extensively to further population health. In general we welcome the development of novel resources and novel methodologies to foster these advances (such as those noted in the introductory sections of the Nuffield Council’s consultation paper). However we are mindful of the potential risks inherent in such a utilitarian approach, which tends to focus on outcomes (such as improved health) rather than process (such as that comprehensive data sharing may only be achieved by compromising individual autonomy interests).
In this response, we focus particularly on genetic and genomic data, since this is an area of special expertise of the PHG Foundation. The Foundation has over 15 years’ experience of deliberating these issues. Over this time there have been exponential advances in biomedical technologies such that there is a realistic prospect of whole exome sequencing being offered in clinical health services within the next year or so.