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)

In ‘Discrimination Against the Dying’, Phillip Reed argues that terminally ill patients are subjected to a distinct form of discrimination called ‘terminalism’. One of Reed’s primary examples of terminalism is right to try laws, which offer terminally ill patients the option to request medications that are not FDA-approved and without IRB involvement. In this analysis, we consider additional contextual factors about right to try, suggesting that it may not neatly count as an exemplar of terminalism. When pursued with appropriate protocols (...) and oversight, right to try has the potential to broaden treatment opportunities for the terminally ill by bypassing FDA and IRB restrictions, functioning as a less stringent alternative to expanded access for patients with limited time and dwindling options. Reed acknowledges that differential treatment of patients is not inherently unjust. For instance, Reed praises expanded access laws that grant patients with severe or life-threatening diseases access to treatment... (shrink)

Nelson et al. (2023) make a unique contribution, raising key questions and considerations about the value of lived experiences as they pertain to normative debates in bioethics. The authors grapple...