Before it is too late: professional responsibilities in late-onset Alzheimer’s research and pre-symptomatic prediction

Abstract

The development of a wide array of molecular and neuroscientific biomarkers can provide the possibility to visualize the course of Alzheimer’s disease (AD) at early stages. Many of these biomarkers are aimed at detecting not only a preclinical, but also a pre-symptomatic state. They are supposed to facilitate clinical trials aiming at treatments that attack the disease at its earliest stage or even prevent it. The increasing number of such biomarkers currently tested and now partly proposed for clinical implementation calls for critical reflection on their aims, social benefits, and risks. This position paper summarizes major challenges and responsibilities. Its focus is on the ethical and social problems involved in the organization and application of dementia research, as well as in healthcare provision from a cross-national point of view. The paper is based on a discussion of leading dementia experts from neuroscience, neurology, social sciences, and bioethics in the United States and Europe. It thus reflects a notable consensus across various disciplines and national backgrounds. We intend to initiate a debate on the need for actions within the researchers’ national and international communities.

At, with and beyond risk: expectations of living with the possibility of future dementia

“…, Schicktanz et al . ). If this information is taken as indicative of a defined disease pathology, although it may enable individuals to act and plan for the future, there are currently insufficient data, understanding, or evidenced treatment options to support widespread use and disclosure of biomarker status to cognitively normal persons (Johnson et al .…”

“…First, given the ambiguity of the Alzheimer's label, the prognostic and diagnostic content conveyed by biomarker results is inevitably vague (Boenink et al 2016, Lock 2013, Porteri et al 2017. Second, attention has been drawn to the possible harm caused by communicating biomarker test results associated with the risk of developing the common late-onset, sporadic form of Alzheimer's dementia when no effective treatments are available (Fox et al 2013, Karlawish 2011, Molinuevo, Cami et al 2016, Schicktanz et al 2014. If this information is taken as indicative of a defined disease pathology, although it may enable individuals to act and plan for the future, there are currently insufficient data, understanding, or evidenced treatment options to support widespread use and disclosure of biomarker status to cognitively normal persons (Johnson et al 2013).…”

Free Recall Episodic Memory Performance Predicts Dementia Ten Years prior to Clinical Diagnosis: Findings from the Betula Longitudinal Study

“…There is a clear need to develop an ethical framework for future clinical implementation, including key questions such as whether individuals wish to know whether they are at risk [42]. Additionally, creating a valid interface between cognitive measures and other early biomarkers is complicated by the requirements for proper tests and appropriate cut-offs [43].…”

Should we screen for cognitive decline and dementia?

“…"at-risk individuals"), and based on interdisciplinary considerations [46], listed the following items and main determinants for this discussion: public policy goals; ethical issues of research participation; individual and social consequences; exploring diversity and promoting public dialogue.…”