Demenzprädiktion als ethische Herausforderung: Stakeholder fordern Beratungsstandards für Deutschland

Schicktanz, Silke; Perry, Julia; Herten, Benjamin; Gissendanner, Scott Stock

doi:10.1007/s00115-020-00985-y

Cited by 4 publications

(5 citation statements)

References 10 publications

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“…Regarding the German context, a preceding research project established that dementia prediction and presymptomatic diagnosis are considered special challenges that require targeted counseling services for patients and concerned individuals. The project concretely developed a joint statement that put forward, for a future in which relevant test procedures are offered clinically, the ethical-legal bases as well as that concrete counseling services must be prepared, for which counseling should contain medical as well as psychosocial elements (Ad Hoc Working Group, 2018; Schicktanz et al, 2021).…”

Section: The Present Study “Well Advised”mentioning

confidence: 99%

“…There are few concrete guidelines on implementing counseling services with ethical standards for dementia prediction (Rostamzadeh & Jessen, 2020; Schicktanz et al, 2021). Specifically, there is a pressing need for guidelines on the ethical and social aspects of risk communication in dementia prediction (Alpinar-Sencan & Schicktanz 2020; Rostamzadeh & Jessen, 2020).…”

Section: Current Lack Of Counseling Services and Concrete Guidelinesmentioning

confidence: 99%

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Well Advised

2023

Self Cite

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Societal and scientific interest in the prediction and early diagnosis of Alzheimer’s disease is growing. However, decisions regarding early diagnosis must be well-considered. The decision-making process requires specific counseling for concerned individuals, which is currently missing. In our project “Well Advised”, we investigate the needs and expectations of people concerned about their memory regarding counseling services in Germany. Using a mixed-methods approach, we analyze the evaluative interviews from telephone counseling ( n = 44) and one expert focus group with 4 participants. Our evaluation shows a great need for information; the low-threshold telephone counseling service is appreciated. The topics of interest of those seeking advice concern medical-ethical issues of autonomy, the right (not) to know, and risk-benefit considerations. From these findings, we developed a training module and counseling guideline.

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Section: The Present Study “Well Advised”mentioning

confidence: 99%

Section: Current Lack Of Counseling Services and Concrete Guidelinesmentioning

confidence: 99%

Well Advised

2023

Self Cite

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“…Various authors have criticized the absence of guidelines on the disclosure of a dementia diagnosis or that the existing guidelines insufficiently take ethical aspects into account (Alpinar-Sencan & Schicktanz, 2020; Schicktanz et al, 2021). The European Alzheimer’s Disease Consortium recently published a recommendation on the diagnostic process in individuals with MCI, accounting for some of the aforementioned ethical challenges (Frederiksen et al, 2021).…”

Section: Ethical Issues In Different Stages Of Dementia Preventionmentioning

confidence: 99%

“…The asymmetry of diagnostic and therapeutic options raises difficult ethical questions in dementia prevention, such as whether it is ethically appropriate to tell asymptomatic individuals that they will likely develop dementia in the next few years. Such questions have increasingly been the subject of systematic ethical analysis (Angehrn et al, 2020; McKeown et al, 2021; Schicktanz et al, 2021; Smedinga et al, 2018; Ursin et al, 2021; Vanderschaeghe et al, 2018; Whitehouse, 2019). The moral attitudes of affected persons, relatives, professionals, or study participants toward dementia prediction have also been increasingly studied lately (Alpinar-Sencan et al, 2022; Bailey et al, 2019; Giezendanner et al, 2019; Lohmeyer et al, 2021; Merl et al, 2022; Milne et al, 2018; Schweda et al, 2018; Tromp et al, 2021).…”

Section: Introductionmentioning

confidence: 99%

Ethical Issues of Primary and Secondary Dementia Prevention

Schürmann

Trachsel

2023

GeroPsych

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The asymmetry of diagnostic and therapeutic options in dementia raises difficult ethical questions about primary and secondary dementia prevention. For example, is it ethically appropriate to tell asymptomatic individuals that they are very likely to develop dementia in the next few years? The present article reviews and systematizes the ethical issues regarding dementia prevention and proposes a terminology and classification of ethical issues. This may prove helpful in framing further discussion. It is imperative that appropriate diagnostic standards be developed that include procedures for risk communication, disclosure of diagnoses, stigma reduction, and protection of vulnerable patient populations. Further, we need coordinated and effective preventive interventions to raise awareness about dementia and effective risk reduction strategies in the population.

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“…A vivid ethical debate is going on about the predictive diagnosis of AD (Gauthier et al, 2013; Porteri & Frisoni, 2014; Schicktanz et al, 2021). Conducting genomic research or analyzing biomarkers to predict a life-altering disease raises questions about patients’ well-being, normativity, autonomy, and self-determination (Götzelmann et al, 2021).…”

Section: The Predictive Diagnosis Of Alzheimer’s Diseasementioning

confidence: 99%

The Promotion of Health Literacy

et al. 2023

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Progress in predictive medicine has increased the challenges to navigating complex risk information for patients and healthcare professionals. This contribution investigates how people facing the risk of developing Alzheimer’s dementia perceive risk, what aspects are relevant to their health literacy, and how to promote individual health literacy in predictive medicine. We conducted a qualitative study analyzing narrative interviews, body maps, and sociodemographic data from persons who had undergone early predictive procedures in a memory clinic. We understand the promotion of health literacy as an ethical task in predictive medicine and argue for (1) emphasizing personal resources to promote subjective health literacy, (2) reframing communication and decision-making about disease risk, and (3) teaching skills for value-sensitive, individualized risk communication.

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Demenzprädiktion als ethische Herausforderung: Stakeholder fordern Beratungsstandards für Deutschland

Cited by 4 publications

References 10 publications

Well Advised

Well Advised

Ethical Issues of Primary and Secondary Dementia Prevention

The Promotion of Health Literacy

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