In October 2016 an evidence session was held to explore whether and how the National Data Guardian (NDG) might help to address concerns about the legitimacy of genomic data sharing within the NHS for direct care and routine service delivery.
This paper describes the key issues emerging from the evidence session and further discussions with others stakeholders. The paper includes possible next steps that the NDG suggests would be helpful.
This work has been an attempt to help the genomics and genetics community move forward and is not, at this point, a policy position or official advice from the NDG.
Dr Mark Taylor, a member of the NDG panel, has also authored an article about this work.