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We welcome Hepgul et al’s contribution to the debate about when and why to grant consent waivers for the secondary use of clinical data.1 Their paper reports on a focus group study of patient attitudes to clinical data sharing. Their results align with existing research showing that patients’ and publics’ comfort with secondary research is influenced by the following considerations:
Type of data being linked— linking different types of health data is more acceptable than linking data across the public sector, or between the public and private sectors2
Trust in the organisations conducting research3
Anonymity of the data4 5
Purpose—research that offers public benefit is more acceptable6 7
How profits are managed and shared2
Commercialisation of health data—there is general discomfort with commercial or for-profit research8
In addition, Hepgul et al’s paper raises an interesting consideration about the when and why public views are relevant to determinations of consent waivers. What is the conceptual link between patients’ preferences and the justifications for policies regarding secondary use? This issue was beyond the scope of our original paper, but here we take the opportunity to present a taxonomy of justifications for consent waivers and show how and why public views relate to each different justification.
We discuss three different justifications for consent waivers; of which ‘the obligation to contribute to research’ (the focus of our earlier paper) is only one.9 The specific role and relevance of public views will depend …
Contributors Both authors contributed to developing arguments, research, writing and editing.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.
Correction notice This article has been corrected since it was published. G. Owen Schaefer was originally listed incorrectly as G. Owen Scaefer
Patient consent for publication Not required.
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