Informed Consent Procedures

Transplantation should be presented as the priority, with research framed as secondary when clinical use is not possible. Twenty-five documents focused on consent procedures for people with intellectual and developmental disabilities and cognitive disabilities, consistently emphasizing autonomy and presumption of competence. Researchers and ethics board members must not assume that disability precludes consent capacity; individual capacity assessments using tailored methods must be employed instead. Consent materials must be provided in accessible formats such as plain language and visual aids, and extended time for decision-making must be allowed. Donor family members wanted research consent to be distinct from transplantation consent. Participants favored trained specialist nurses or trusted treating physicians as facilitators of research-consent discussions. Participants wanted research consent for explanted organs to be included in the transplantation consent process for transplant recipients. Participants suggested allowing people to register research-use preferences in advance on the NHS Organ Donor Register. Surrogate or supported decision-making should be used only when in…