Motivated by exploitation concerns, we argue for the importance of participant engagement in basic human intracranial electrophysiology research. This research takes advantage of unique neurosurgical opportunities to better understand complex systems of the human brain, but it also exposes participants to additional risks without immediate therapeutic intent. We argue that understanding participant values and incorporating their perspectives into the research process may help determine whether and to what extent research practices and the resulting distributions of risks and benefits constitute exploitation (...) and contribute to building a brain research paradigm that is genuinely responsive to participant values. More broadly, we highlight the importance of paying attention to participant interests in non-therapeutic brain research. (shrink)

Precision medicine relies on data and biospecimens from participants who willingly offer their personal information on the promise that this act will ultimately result in knowledge that will improv...

Philosophers working in bioethics often hope to identify abstract principles and universal values to guide professional practice, relying on ideals of objectivity and impartiality, and on the power of rational (individual, autonomous) deliberation. Such a focus has made it difficult to address issues arising from group‐based, sociohistorical differences like race and ethnicity. This essay offers a survey of some of the major issues concerning race in the field of bioethics. These issues include a long history of racialized abuse in medical (...) and scientific research, reproductive injustice and abuse against women of color, and persistent racial and ethnic disparities in U.S. health and health care. The essay also argues that the field of bioethics as a whole would be improved by taking the experience of racial minorities into account in all its theorizing. Philosophers can aid in this task by expanding their theoretical focus beyond questions of individual rights to questions of social justice, beyond informed consent to community collaboration, and beyond cultural competency to both structural competency and cultural humility. (shrink)