TY - JOUR
T1 - Moving Towards Ethical-Practical Recommendations for Alzheimer's Disease Prediction
T2 - Addressing Interindividual, Interprofessional, and Societal Aspects
AU - Schicktanz, Silke
AU - Alpinar-Segawa, Zümrüt
AU - Ulitsa, Natalie
AU - Perry, Julia
AU - Werner, Perla
N1 - Publisher Copyright:
© 2024 - IOS Press. All rights reserved.
PY - 2024/10/8
Y1 - 2024/10/8
N2 - Biomarkers for predicting Alzheimer's disease (AD) are advancing and their implementation in various healthcare systems is imminent. There is a need for ethical standards addressing information needs, socio-ethical concerns, and expectations of healthy and at-risk persons. We present an ethical approach that integrates different existing ethical frameworks and discussion of our empirical, cross-cultural findings in a multi-layered perspective by addressing three levels. The micro-level focuses on the communication between counseling professionals, persons at risk or in an early stage of dementia, and family members. The meso-level addresses interprofessional cooperation and exchange as a key element for best person-centered care. The macro-level considers public health promotion, the media, and public-funded research. This approach allows to address key ethical concepts including beneficence, non-maleficence, autonomy, informational self-determination, empowerment, and justice. Our contribution specifically examines the ethical challenges associated with AD prediction by means of biomarkers, based on insights from a German-Israeli comparison, and promotes a transdisciplinary discussion across different healthcare contexts. We propose a reflection on three levels to go beyond the clinical counseling context and to consider the rapidly evolving field of biomarkers in the coming years. Our ethical-practical recommendations should not be considered final, but rather procedural and will require continuous adaptation regarding culturally varying practices, new algorithms, meta-analyses, and re-evaluation of established recommendations.
AB - Biomarkers for predicting Alzheimer's disease (AD) are advancing and their implementation in various healthcare systems is imminent. There is a need for ethical standards addressing information needs, socio-ethical concerns, and expectations of healthy and at-risk persons. We present an ethical approach that integrates different existing ethical frameworks and discussion of our empirical, cross-cultural findings in a multi-layered perspective by addressing three levels. The micro-level focuses on the communication between counseling professionals, persons at risk or in an early stage of dementia, and family members. The meso-level addresses interprofessional cooperation and exchange as a key element for best person-centered care. The macro-level considers public health promotion, the media, and public-funded research. This approach allows to address key ethical concepts including beneficence, non-maleficence, autonomy, informational self-determination, empowerment, and justice. Our contribution specifically examines the ethical challenges associated with AD prediction by means of biomarkers, based on insights from a German-Israeli comparison, and promotes a transdisciplinary discussion across different healthcare contexts. We propose a reflection on three levels to go beyond the clinical counseling context and to consider the rapidly evolving field of biomarkers in the coming years. Our ethical-practical recommendations should not be considered final, but rather procedural and will require continuous adaptation regarding culturally varying practices, new algorithms, meta-analyses, and re-evaluation of established recommendations.
KW - Alzheimer's disease
KW - communication
KW - counseling
KW - cross-cultural comparison
KW - dementia
KW - ethical recommendations
KW - literacy
KW - prediction
UR - https://www.scopus.com/pages/publications/85206121355
U2 - 10.3233/JAD-231137
DO - 10.3233/JAD-231137
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C2 - 39269830
AN - SCOPUS:85206121355
SN - 1387-2877
VL - 101
SP - 1063
EP - 1081
JO - Journal of Alzheimer's Disease
JF - Journal of Alzheimer's Disease
IS - 4
ER -