Addressing the ethical challenges to informed consent for brain tissue donation
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Abstract
The tremendous medical promise of human organoids has led large research institutions and national agencies to create brain tissue banks. In response, regulatory agencies have created regulations that guide consent processes for collecting tissue samples from donors. These regulations are, in part, intended to ensure that donors’ samples are not used in ways that conflict with their moral values, beliefs, and goals. While these regulations frequently serve this purpose well, we argue that they are insufficient in the case of brain tissue donation because of unique ethical concerns that arise from technologies and applications that use brain tissue samples. After considering the inadequacies, we suggest how consent policies can be improved. We focus on US policy specifically because some Caribbean and Latin American countries reference US regulatory frameworks in developing their own.
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