A Conceptual Framework for the Ethical Issues Around Alzheimer’s Disease Prevention Trials
Research Partner: CDKTN, National Core for Neuroethics, UBC Faculty of Medicine, Vancouver (Canada)
As a research psychologist, Dr. Peters became interested in the many ethical issues associated with individuals who are genetically pre-disposed to developing Early Onset Familial Alzheimer Disease (EOFAD). For example, not all individuals with a family history of EOFAD may want to know whether they possess the genetic mutation. Another example relates to the question of when to begin initiating novel drug therapies in this population in order to potentially achieve maximal therapeutic impact. The ethical issues associated with Early Onset Familial Alzheimer disease also applies generally to prevention trials for other types of Alzheimer’s disease. With this in mind, Dr. Peters, Dr. Beattie, and Dr. Illes developed a conceptual framework of the range of prevention trials for Alzheimer’s disease that are foreseeable within the next 5 to 10 years. The landscape for prevention trials of Alzheimer’s disease is predicted to change dramatically in the next few years, with increasing involvement of individuals who are deemed to be at-risk but who have few or no symptoms. It is important to address these ethical issues proactively, and to help foster effective knowledge translation for a range of stakeholders, including researchers, patients and their families, and the general public. This framework was also used to begin addressing some of the ethical issues related to early diagnosis and treatment.
Knowledge Translation Strategies Used
The collaborative work has led to a special issue in the journal – Progress in Neurobiology on Neuroethics and Neurodegenerative disease. The three investigators Dr. Peters, Dr. Beattie, and Dr. Illes are the guest editors for this special issue, and the topics span a wide range of neurodegenerative diseases (e.g. Alzheimer Disease, Parkinson Disease, Huntington Disease, Amyotrophic Lateral Sclerosis, prion diseases). The investigators believe that this special issue will be an important and timely contribution on the ethical challenges that are associated with research on neurodegenerative disease and the clinical management of individuals with these diseases. Furthermore, the issue will be a teaching resource for related programs in biomedical ethics, health law, and public policy, and will complement other emerging online educational material. Publication of this special issue is planned for mid 2013. Subsequent work with other stakeholders may follow.
Dr. Kevin Peters research was supported by the Canadian Dementia Knowledge Translation Network (CDKTN) Visiting Scholars Program.