Welcome to Ethics Consult — an opportunity to discuss, debate (respectfully), and learn together. We present an ethical dilemma in patient care (hypothetical for this edition); you vote on your decision in the case. Next week, we’ll reveal how you all made the call. And stay tuned — an ethics expert will weigh in next week with an ethical framework to help you learn and prepare.
Studies have shown that more than 90% of people with Down syndrome develop Alzheimer’s disease as they age, with a long preclinical phase. In a recent study in The Lancet, the authors suggested that this population represents “a suitable target for Alzheimer’s disease preventive treatments.”
In the context of clinical trials, this raises questions around informed consent, given the prevalence of intellectual disability in individuals with Down syndrome. But the neuropathology of Alzheimer’s disease in Down syndrome is tied to the genetic abnormality responsible for the condition, and thus may not necessarily be identical to that in other Alzheimer’s patients — meaning that trial results in other populations may not apply to those with Down syndrome.