Melanie Stephens led another journal club discussion in a series we have hosted regarding persons with Down syndrome, this time with a focus on ethical predicaments that arise in the research setting. Drawing from arguments presented in Licia Carlson’s paper, “Research ethics and intellectual disability: Broadening the debates,” we addressed participant capacity and decision-making, disability rights and stigma, and challenges with protocol execution and outcome measurement.
We began by acknowledging the historical context of conducting research with persons with intellectual disability, referencing research abuses at Willowbrook and other sites, and our consequentially heightened concerns about avoiding exploitation of this vulnerable population. We discussed the need to balance protection and inclusion of persons with intellectual disability within research as a matter of justice, since clinical trials, for instance, may benefit those with access to enrollment and provide an appropriate evidence base for the development of future therapies. Additionally, we questioned how researchers might advocate for destigmatization of intellectual disability while simultaneously developing treatment, an effort which could perpetuate stigma.
Using Alzheimer’s disease research with persons with Down Syndrome as an example, we explored the challenges of obtaining consent from, administering lengthy neuropsychological assessments to, and measuring cognitive improvement in participants with intellectual disability. Regarding informed consent, we discussed promoting a person’s best interests in lieu of capacity, described the difference between surrogate decision making and supported decision making, and compared scenarios for overriding participant dissent within research as opposed to clinical care. After obtaining consent, the research protocol may require adjustments in order to accommodate persons with intellectual disability, who may not tolerate mentally taxing tasks or may feel especially uncomfortable in the lab environment. In response to the limited applicability of traditional cognitive measures for capturing improvement in this population, we highlighted the importance of inquiring about functional outcomes, such as success in completing daily at-home tasks.