The Commercialisation of Tissue and Data
From Elisabeth Barlow
About the Presentation
While people take a relatively positive view of research use of health data when the public benefit is clearly stated and there are safeguards in place (such as data anonymisation or punishment for misuse of data) they are typically more cautious about data sharing for use by private companies. There is evidence that commercial access to health data is relevant to public confidence in the safeguards and governance designed to protect health data and the concerns expressed in relation to use of data by private companies may be (crudely) grouped into three broad types: ‘Misuse’; ‘Profiteering’; and, ‘Commercialisation’.
If we share a common aim to safeguard public confidence in appropriate use of health data, then how might we effectively address each of these concerns? How do we address concerns relating to the misuse of data (in identifiable and/or anonymised form)? How do we avoid (the perception of) profiteering? How do we avoid exclusive private benefit, and enable benefit sharing, without raising concerns that the public service ideals of the health service may be corrupted by financial considerations?
In this lunchtime seminar, Mark Taylor considered some of the challenges faced in answering these questions. Finding credible answers will, however, be necessary to enable future research access to health data under conditions that deserve and promote public trust and confidence.
Mark Taylor’s presentation will be followed by responses from the Mason Institute’s Nayha Sethi and Edward Dove.
About the Speakers
Dr Mark Taylor is a Senior Lecturer at the University of Sheffield, School of Law. Ms Nayha Sethi is a Deputy Director of the Mason Institute, and Mr Edward Dove is a Doctoral Candidate on the Wellcome Trust Liminal Spaces Project.