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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.
Highlights
THE IMPORTANCE OF INCLUSIVITYParticipation in health research has tended to be dominated by white, middle-class, higher-educated people in most Western countries, to the exclusion of indigenous groups, the socially-disadvantaged and the culturally and linguistically diverse
In this paper we will consider whether efforts to achieve representativeness in biobank samples, in terms of the potential for improved recruitment and retention of participants through a “Dynamic Consent” platform [2], can address the known barriers to participation for specific populations
Dynamic Consent has been discussed as a mechanism that may improve the informed consent process for biobanking by providing research participants with stronger oversight of the uses of their samples and data [2]
Summary
THE IMPORTANCE OF INCLUSIVITYParticipation in health research has tended to be dominated by white, middle-class, higher-educated people in most Western countries, to the exclusion of indigenous groups, the socially-disadvantaged and the culturally and linguistically diverse. 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. 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.
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