A conversation with Brain/MINDS 2.0 on the ethics and advancements in Alzheimer’s diagnosis
Dr. Ryosuke Takahashi, the Brain/MINDS 2.0 Program Supervisor, shares with Dr. Judy Illes, the IBI Chair, that a project led by the University of Tokyo has been recently selected, under the Brain/MINDS 2.0 initiative, to provide neuroethical consultation for other neuroscience projects, and to conduct neuroethics research. On that note, Dr. Takahashi probes into the ethical implications of diagnosing Alzheimer’s, Parkinson’s and other neurodegenerative diseases. As a neurologist aiming to advance medical diagnostics in this field, Dr. Takahashi discusses the ethical dilemma of knowing that an individual might develop Alzheimer’s disease 10 years before symptoms arise, and questions the ethics of disclosing the diagnosis at that timepoint. Developing a method for asymptomatic diagnoses raises questions about whether it can or should be applied ethically. Dr. Takahashi further posits that advancing technology often introduces new ethical challenges, and poses the question of: How do we address the ethical implications of technological developments?
Dr. Judy Illes, IBI Chair and pioneer in neuroethics, suggests that this enduring question was first raised for blood biomarkers and genetic testing. Relevant to the discussion at hand, a recent paper in Nature discusses blood biomarkers for Alzheimer’s (https://www.nature.com/articles/d41586-024-03629-2). While such tools promise early detection, they bring complex ethical considerations.
Dr. Illes explains that, in ethics, there are no definitive right or wrong answers. Everything depends on the context – the individual, family, the healthcare system, and the broader society. In genetic testing and genomics, which laid the groundwork for such deliberations in neuroscience, a recurring question is: if probabilistic predictions of a disorder exist, what threshold of certainty warrants sharing the information? Does the threshold of certainty change with age and other variables? There is a need to balance all factors involved, which requires careful consideration by scientists and physicians alike.
Today’s discourse predominantly centers on longstanding questions about the right to know and the right to not know, which includes the right to delay knowing or to decide preferences early. In free and civil societies, individuals are aware of all of these rights. Henceforth, if a patient enters a clinic and receives a diagnosis of Alzheimer’s disease, prior knowledge of their preferences should shape the communication of this diagnosis. Addressing such ethical implications begins with understanding what individuals and families want to know. In gauging how to respond and act ethically, medical and scientific evidence must be carefully balanced with who the person is and how they wish to receive this information.
The ethical concerns surrounding Alzheimer’s, specifically, are growing increasingly complex. Dr. Illes describes that, in one of her early publications, she discusses the ethics of biomarker testing in asymptomatic individuals at risk for Alzheimer’s (https://pubmed.ncbi.nlm.nih.gov/23348495/).
While there is no singular response to these dilemmas, addressing them is critical to progress in the field. This fruitful conversation highlighted that the approach to such questions requires open-mindedness, and the recognition that answers will be multifaceted, evolving with societal values and scientific advancements.