When a seriously ill mature minor and his parent disagree about his receiving an experimental intervention, who should decide what treatment he will receive?
Though there are channels through which terminally ill patients can access some experimental drugs that have not yet received FDA approval for marketing to the public, in general those drugs must already be proven safe and effective.
When a seriously ill mature minor and his parent disagree about his receiving an experimental intervention, who should decide what treatment he will receive?
Jessie Kimbrough-Sugick, MD, MPH, Jessica Holzer, MA, and Eric B. Bass, MD, MPH
Researchers who approach community partners with an agenda already in hand are missing the point of the community-based participatory research enterprise: developing priorities for study together.
By privileging traditional research methods in forms for research protocol approval, IRBs can unknowingly allow community partners to be harmed in CBPR. Changes to the language can help ensure appropriate sensitivity and community involvement.
CBP researchers are challenged to think strategically about ways to convey their accomplishments and educate their non-CBPR peers about the nature of their research, processes not required of traditional researchers.
Elizabeth Lee Daugherty, MD, MPH and Douglas B. White, MD, MA
Opportunities to advance scientific knowledge may arise during humanitarian crises, but their presence does not justify suspension of the ethical foundations governing human subjects research.
