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

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.

Public awareness of and attitudes towards research biobanks in Latvia

“…However implementation of this type of consent in Latvia is limited by the financial recourses of biobanks. Some authors also warn about risks that use of dynamic consent based on digital technologies could lead to deepening the 'digital divide' by favouring those "with knowledge and access to digital technologies" [28], which in turn could lead to negative effects and decrease participant engagement in research. Therefore, it is important to look for solutions likely to improve participant inclusivity and to evaluate empirically how dynamic consent tools will affect equality in access to research participation [28].…”

Reflections on dynamic consent in biomedical research: the story so far

“…We have considered elsewhere the risk that the tool could 'exacerbate exclusion and disenfranchisement', further marginalising people who already face challenges in exercising their rights [56]. Ensuring there are mechanisms to support these groups, to mitigate the digital divide, is crucial.…”

Dwarna: a blockchain solution for dynamic consent in biobanking

“…Informed consent 'protects the individual's freedom of choice and respects the individual's autonomy' [4], thus safeguarding the fundamental rights of human dignity and integrity [5,6]. The process of recruitment in biobanking, and engagement in research participation can be improved if consent is not a one-off event but is sustained throughout the research, a process called dynamic consent [7].…”