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

Frontiers in Public Health
Megan PrictorJane Kaye

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 ...Continue Reading

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Citations

Apr 7, 2020·Nature Reviews. Genetics·Maui HudsonStephanie Russo Carroll
Nov 16, 2019·Journal of Empirical Research on Human Research Ethics : JERHRE·Megan PrictorHarriet J A Teare
Dec 18, 2019·European Journal of Human Genetics : EJHG·Nicholas MamoJean-Paul Ebejer
Jun 4, 2019·The Medical Journal of Australia·Imogen ElsumLynn Woodward
Aug 2, 2020·BMC Medical Ethics·S MezinskaL Tzivian
May 25, 2019·Asian Bioethics Review·Mohammad Firdaus Abdul Aziz, Aimi Nadia Mohd Yusof
Apr 7, 2021·Personalized Medicine·Danya F VearsMadeleine J Murtagh
Apr 18, 2021·Journal of Medical Ethics·Cullen M Lilley, Kamran M Mirza
Apr 22, 2021·Science and Engineering Ethics·Dagmar Rychnovská
Apr 24, 2021·Nature Genetics·Nicola PirastuAndrea Ganna
Sep 10, 2021·Journal of Empirical Research on Human Research Ethics : JERHRE·Jessica BellMelissa Wake

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Software Mentioned

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Dynamic Consent
PROGRESS
CHRIS
Foldit
Dynamic
RUDY
PEER

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