Equitable Participation in Biobanks: The Risks and Benefits of a 'Dynamic Consent' Approach
Frontiers in Public Health, Vol. 6, Article 253 (2018)
7 Pages Posted: 25 Oct 2018
Date Written: October 25, 2018
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: Suggested Citation