title: 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.
authors.affiliation: Department of Medical Ethics and History of Medicine, University Medical Center Göttingen Göttingen, Germany.
authors.forename: Silke
authors.initials: S
authors.lastname: Schicktanz
authors.affiliation: Department of Medical Ethics and History of Medicine, University Medical Center Göttingen Göttingen, Germany ; Lichtenberg Kolleg, University of Göttingen Göttingen, Germany.
authors.forename: Mark
authors.initials: M
authors.lastname: Schweda
authors.affiliation: Health Administration Department, Drexel University Philadelphia, PA, USA.
authors.forename: Jesse F
authors.initials: JF
authors.lastname: Ballenger
authors.affiliation: Institute for Health & Aging, University of California San Francisco, San Francisco, CA, USA.
authors.forename: Patrick J
authors.initials: PJ
authors.lastname: Fox
authors.affiliation: UC Berkeley-UCSF Joint Medical Program, School of Public Health, University of California Berkeley, Berkeley, CA, USA.
authors.forename: Jodi
authors.initials: J
authors.lastname: Halpern
authors.affiliation: Memory and Aging Center, Sandler Neurosciences Center, University of California San Francisco, San Francisco, CA, USA.
authors.forename: Joel H
authors.initials: JH
authors.lastname: Kramer
authors.affiliation: UC Berkeley-UCSF Joint Medical Program, School of Public Health, University of California Berkeley, Berkeley, CA, USA.
authors.forename: Guy
authors.initials: G
authors.lastname: Micco
authors.affiliation: Compassionate Care & Bioethics, Stony Brook Medicine Stony Brook, NY, USA.
authors.forename: Stephen G
authors.initials: SG
authors.lastname: Post
authors.affiliation: Department of Gender and Women's Studies, University of California Berkeley, Berkeley, CA, USA ; Department of Sociology, London School of Economics London, UK.
authors.forename: Charis
authors.initials: C
authors.lastname: Thompson
authors.affiliation: Department of Psychology, University of California, Berkeley Berkeley, CA, USA ; Helen Wills Neuroscience Institute, University of California Berkeley, Berkeley, CA, USA.
authors.forename: Robert T
authors.initials: RT
authors.lastname: Knight
authors.affiliation: UC Berkeley-UCSF Joint Medical Program, School of Public Health, University of California Berkeley, Berkeley, CA, USA ; Helen Wills Neuroscience Institute, University of California Berkeley, Berkeley, CA, USA.
authors.forename: William J
authors.initials: WJ
authors.lastname: Jagust
keywords: biomarker; cultural diversity; late-onset Alzheimer’s dementia; medical ethics; public engagement; public health policy; recommendations; research participation