Two researchers called more attention to the personal and social effects of risk-awareness and the expectation of stigma in pre-clinical Alzheimer’s disease (AD) in the April edition of The Lancet Psychiatry, a U.K.-based medical journal.
Dr. Jason Karlawish, co-director of the Penn Memory Center, collaborated on the commentary with Dr. Richard Milne, a research associate in the Cambridge Institute of Public Health. A sociologist in the field of science, technology, and medicine, Milne’s research interests include the social and ethical implications of new scientific developments related to AD.
Their publication addresses the changing definitions of AD and the need for research regarding their ethical and social implications. According to the article, the definition of Alzheimer’s disease is moving away from a basis in symptomatology toward a “biological continuum described by biomarkers.” In research, there exists a pre-clinical state of AD, defined by the presence of biomarkers. Preventative drugs are now being targeted at individuals with gene- or biomarker-defined predisposition to the development of clinical AD. As such interventions make their way from the lab into the clinic, pre-clinical AD will become a concrete diagnosis.
Since researchers have been able to identify genetic risk, studies have shown that advanced knowledge of disease potential can allow individuals to plan while also presenting considerations relating to insurance coverage and employment, among other concerns.
Central to the discussion is stigma, which is known to precipitate discrimination against those with dementia resulting from clinical AD. Studies have yet to determine the role of stigma in the pre-clinical disease state. However, researchers can make projections stemming from knowledge of mild-stage AD, for which stigma correlates highly with the prospect of future cognitive decline. It would not be surprising, therefore, for similar stigma to accompany the even earlier forecast of cognitive decline associated with a pre-clinical diagnosis, the authors wrote.
Karlawish and Milne are now concerned with the potential for psychological consequences, such as anxiety and depression, upon risk-awareness. They call for increased attention to the personal and social effects of both risk-awareness and the expectation of stigma. Future studies may inform the ways in which pre-clinical diagnoses are communicated, the willingness of individuals to seek early diagnoses, and the methods by which information may be employed or disregarded in proactive planning.
— By Grace Ragi