Posts Tagged Prodrome

Translating Preclinical Test Results into “Real World” Consequences

By Jalayne J. Arias, JD, MA

PhotoJalayne J. Arias is the Associate Director of the NeuroEthics Program and Assistant Professional Staff in the Department of Bioethics at the Cleveland Clinic. Ms. Arias’ work incorporates empirical and conceptual projects addressing critical legal and ethical issues inherent in diagnosing, treating, and researching Alzheimer’s disease and other neurodegenerative conditions. Most recently, she served as the principal investigator for the study Stakeholders’ Perspectives on Preclinical Alzheimer’s Diagnosis: Patients, Families and Care Givers. Her recent publication, Confidentiality in preclinical Alzheimer disease studies (Neurology), addresses confidentiality concerns relevant to biomarker testing in Alzheimer’s.

In 2007, Dr. Dubois and co-authors introduced the concept of prodromal Alzheimer’s disease in their Lancet article revising diagnostic criteria. In 2011, the National Institutes of Aging and the Alzheimer’s Association supported a series of papers introducing a new paradigm for diagnostic criteria, including Mild Cognitive Impairment and preclinical Alzheimer’s disease. Both papers and new definitions of Alzheimer’s disease incorporate the discovery of Amyloid beta, a biomarker that purports to indicate disease pathology. The concept of using biomarkers, which are detectible years before a patient begins experiencing symptoms, offers the potential for offering preclinical testing in the clinical context. Yet, as researchers continue to validate biomarkers, little is known about how preclinical test results may affect patients and their families.

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The identification of risk for serious mental illnesses: Clinical and ethical challenges

*This post was originally featured on The Neuroethics Blog as part of the AJOB Neuroscience series

By Elaine Walker, Ph.D., Sandy Goulding, MPH, MA., Arthur Ryan, MA., Carrie Holtzman, MA., Allison MacDonald, MA.
Elaine Walker is Samuel Candler Dobbs Professor of Psychology and Neuroscience in the Department of Psychology at Emory University.  She leads a research laboratory that is funded by the National Institute of Mental Health  to study risk factors for major mental illness.  Her research is focused on child and adolescent development and the brain changes that are associated with adolescence.

The identification of risk factors for illness is receiving increased attention in all fields of medicine, especially cardiology, oncology, neurology and psychiatry.  There are three potential benefits to identifying risk factors. The first is to reduce morbidity by reducing risk exposure. The second is to enhance opportunities for targeting preventive treatment toward those who are most likely to benefit. Finally, the identification of risk factors can shed light on pathological mechanisms.

There are, of course, costs as well as benefits involved in this endeavor.  The benefits, in terms of reducing morbidity and mortality, are noncontroversial.  The costs, however, can be very controversial and they have generated discussion among ethicists. Foremost among the costs is the potential discomfort and distress that results from the identification of an individual as being at statistical risk for future illness.  There are also significant concerns about whether treatment should be initiated prior to the manifestation of symptoms that reach clinical threshold.  These concerns are especially salient in the field of psychiatry. In this post, we discuss current efforts to identify risk factors for serious mental illness and the ethical considerations they raise.

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