The Nuffield Council on Bioethics has launched a new consultation on ethical issues related to the linking, analysis and use of biological and health data.
This is an element of their highly topical project on the issue, which is pertinent to current NHS plans to go digital, promote productive sharing of patient information whilst maintaining public confidence (which has resulted in plans being delayed in order to address this issue), and to sequence 100,000 patient genomes.
One of the main purposes of the 100K Genomes Project is to create a unique resource for medical research that combines genomic with linked clinical (NHS) data, which could potentially include long-term (future) health outcomes. However, the data storage and handling challenges this presents are enormous, and exploiting ‘big data’ from different sources is an important issue in many other areas outside health too.
Now the Nuffield Council is examining how biomedical data can best be used and what ethical challenges this may pose. Inquiry chair Professor Martin Richards said: “We are interested in understanding more about the possible harms and benefits of new developments in data linking and use, and furthermore what might be appropriate governance and legal measures to protect people’s privacy whilst enabling legitimate research that may benefit many”.
The deadline for responses to the current consultation is 10 January 2014, with the final report on findings to be published later in the year. Issues including privacy and consent in relation to genomic data form part of the current PHG Foundation Realising Genomics project, which is examining the wider implications of the clinical use of whole genome and whole exome sequencing.