In Gray Matters: Topics at the Intersection of Neuroscience, Ethics, and Society (Gray Matters, Vol. 2), the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) explored capacity and the consent process as one of three topics that illustrate some of the ethical and societal tensions that surround rapidly advancing neuroscience research and its applications. When considering and addressing ethical concerns about consent capacity, it is crucial to avoid policies and practices that perpetuate or exacerbate stigma. Equating certain conditions with impaired consent capacity or making unfounded assumptions about individual abilities based on diagnoses can subject individuals to stigmatizing or discriminatory practices, undermining the respect due to those individuals. The Bioethics Commission recognized that one important approach to help neuroscience researchers alleviate stigma is stakeholder engagement, and recommended engaging stakeholders to address stigma associated with impaired consent capacity:
Funders and researchers should engage stakeholders, including members of affected communities, to build understanding of consent capacity and associated diagnoses to mitigate the potential for stigma and discrimination.
Stakeholder engagement can inform research design, including by identifying what to study, improving informed consent processes, and assessing how results might be received and analyzed. It is also an important mechanism to mitigate potential social harms associated with research participation and to cultivate trust among researchers and affected populations. Stakeholder engagement processes are particularly important for research that involves underrepresented and potentially stigmatized groups. Seeking the perspectives of those with, or at risk for, disorders or conditions associated with impaired consent capacity, caregivers, researchers, and community members affected by research can help alleviate stigma and discrimination by providing information about the lived experience of those affected by particular disorders or conditions, and dispelling common assumptions about those disorders or conditions.
Ethical research involving participants with potentially impaired consent capacity requires that investigators acknowledge and learn from the diversity of individual needs and abilities. Stakeholder engagement provides an additional layer of protection for participants, and also can help researchers identify and develop questions and practices tailored to specific affected communities or categories of impairment. Engaging various stakeholder communities enables neuroscience researchers to uphold ethical standards and advance best practices, remain accountable to the communities with which they work, and foster thoughtful and important discussion about the potential for stigma and discrimination.
Gray Matters, Vol. 2 and all other Bioethics Commission reports are available at www.bioethics.gov.