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04/29/2015

Bioethics Commission Recommends Further Research on Consent Capacity and Ethical Protections for Participants

In Gray Matters: Topics at the Intersection of Neuroscience, Ethics, and Society, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) provided ethical analysis of three topics, including consent capacity and neuroscience research. More than one billion people globally, including millions of people in the United States, are affected by neurological disorders.[1]

Neuroscience research, including novel neurological interventions, promises new ways of treating, preventing, and understanding these conditions. However, many of these same conditions can impair individuals’ abilities to provide informed consent to participate in neuroscience research. The Bioethics Commission offered several recommendations to address neuroscience research involving individuals who might have impaired consent capacity. In particular, the Bioethics Commission recommended that:

Funders should support research to address knowledge gaps about impaired consent capacity, including the concept of capacity, brain function and decision-making capacity, current policies and practices, and assessment tools.

The Bioethics Commission recognized the progress made in recent decades, leading to better understanding of consent capacity. However, more research is needed to address remaining gaps in our knowledge including analysis of which abilities are most pertinent to understanding consent capacity, how to best assess individuals’ consent capacity, and the effectiveness of additional protections for research participants.

The Bioethics Commission highlighted the crucial role of neuroscientists in implementing this recommendation and disseminating research results. For example, professional societies like the International Neuroethics Society or the Society for Neuroscience might encourage researchers to share current practices, developments, and insights at meetings. In addition, investigators, with the assistance of journal editors, could publish more detailed accounts of ethical protections employed within scientific manuscripts or elsewhere. These efforts can create a collaborative environment in which neuroscientists facilitate and even lead the way in furthering best practices in research.

Gray Matters: Topics at the Intersection of Neuroscience, Ethics, and Society and all other Bioethics Commission reports are available at Bioethics.gov.

[1] National Institute of Neurological Disorders and Stroke (NINDS). (2014). NINDS Overview. Retrieved February 2, 2015 from http://www.ninds.nih.gov/about_ninds/ninds_overview.htm; BrainFacts.org. (2014). Global Burden of Neurological and Mental Disorders [Webpage]. Retrieved February 17, 2015 from http:// www.brainfacts.org/policymakers/global-burden-of-neurological-and-mental-disorders/.

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