Equitable Participation in Biobanks: The Risks and Benefits of a 'Dynamic Consent' Approach

Frontiers in Public Health, Vol. 6, Article 253 (2018)

U of Melbourne Legal Studies Research Paper No. 797

7 Pages Posted: 25 Oct 2018

See all articles by Megan Prictor

Megan Prictor

Melbourne Law School; Centre for Digital Transformation of Health

Harriet Teare

University of Oxford

Jane Kaye

University of Oxford - Faculty of Law

Date Written: October 25, 2018

Abstract

Participation in biobanks tends to favor certain groups—white, middle-class, more highly-educated—often to the exclusion of others, such as indigenous people, the socially-disadvantaged and the culturally and linguistically diverse. Barriers to participation, which include age, location, cultural sensitivities around human tissue, and issues of literacy and language, can influence the diversity of samples found in biobanks. This has implications for the generalizability of research findings from biobanks being able to be translated into the clinic. Dynamic Consent, which is a digital decision-support tool, could improve participants’ recruitment to, and engagement with, biobanks over time and help to overcome some of the barriers to participation. However, there are also risks that it may deepen the “digital divide” by favoring those with knowledge and access to digital technologies, with the potential to decrease participant engagement in research. When applying a Dynamic Consent approach in biobanking, researchers should give particular attention to adaptations that can improve participant inclusivity, and evaluate the tool empirically, with a focus on equity-relevant outcome measures. This may help biobanks to fulfill their promise of enabling translational research that is relevant to all.

Keywords: biobanks, consent, equity, participation, translation, Dynamic Consent, inclusive, communication

JEL Classification: K39, I19

Suggested Citation

Prictor, Megan and Teare, Harriet and Kaye, Jane, Equitable Participation in Biobanks: The Risks and Benefits of a 'Dynamic Consent' Approach (October 25, 2018). Frontiers in Public Health, Vol. 6, Article 253 (2018), U of Melbourne Legal Studies Research Paper No. 797, Available at SSRN: https://ssrn.com/abstract=3272585

Megan Prictor (Contact Author)

Melbourne Law School ( email )

University Square
185 Pelham Street
Carlton, Victoria 3010
Australia

Centre for Digital Transformation of Health

Parkville, 3010
Australia

Harriet Teare

University of Oxford

Mansfield Road
Oxford, Oxfordshire OX1 4AU
United Kingdom

Jane Kaye

University of Oxford - Faculty of Law ( email )

St. Cross Building
St. Cross Road
Oxford, OX1 3UJ
United Kingdom

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