Beskrivning
The main purpose of ethics regulation of human subjects research is to provide protection to research subjects. Individuals whose capacity to understand the implications of research participation is impaired have been considered particularly vulnerable to exploitation and harm, and therefore in need of special safeguards. These include legal representation, requirements that there be direct benefits or minimal burdens and minimal risks of harm, that there is no possibility of instead enrolling individuals with capacity to consent, and more. Increasingly, these safeguards have been criticised for being overprotective and discriminatory; impeding important research and violating human rights law, such as the Convention on the Rights of Persons with Disabilities (CRPD) – an international treaty which grants persons with disabilities wide-ranging rights to autonomy and participation in society.A key provision in CRPD is Article 12, which, among other things, obliges states parties’ to ensure that persons with disabilities have access to the support they need to be able to exercise their right to legal capacity; in this case, the support needed to be able to give free and informed consent to research participation. An alternative or complementary way of making research ethics governance more inclusive would be to lower thresholds for valid informed consent. The latter option raises a number of questions: What are these thresholds? – that is, what facts need to be understood by a potential research participant, and to what degree do they need to be understood, according to current regulations? What is the relationship between the scope of researchers’ obligation to provide information about their studies and standards of valid consent? And what are the prospects of lowering the relevant thresholds while still ensuring that the regulation offers those with cognitive disabilities sufficient protection? In this presentation we discuss these and related issues.
| Period | 2022 maj 30 |
|---|---|
| Evenemangstitel | Lund Medical Ethics Conference 2022 |
| Typ av evenemang | Konferens |
| Plats | Lund, SverigeVisa på karta |