On the personal utility of Alzheimer’s disease-related biomarker testing in the research context

Bunnik, Eline M.; Richard, Edo; Milne, Richard; Schermer, Maartje

doi:10.1136/medethics-2018-104772

Cited by 35 publications

(67 citation statements)

References 27 publications

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“…39 At present, there is insufficient knowledge about the actual frequency of these potential harms and burdens and about their severity. 38 However, as we have argued elsewhere in more detail, as long as the prognostic value of the diagnosis 'preclinical AD' is so unclear and hence risk prediction is inaccurate, this argument has a limited validity.…”

Section: Effects Of the Reconceptualization On Individualsmentioning

confidence: 99%

“…38 However, as we have argued elsewhere in more detail, as long as the prognostic value of the diagnosis 'preclinical AD' is so unclear and hence risk prediction is inaccurate, this argument has a limited validity. 39 At present, there is insufficient knowledge about the actual frequency of these potential harms and burdens and about their severity. Little is known about the psychological impact of learning one's risk status, or learning that one has 'preclinical' or 'prodromal' AD.…”

Section: Effects Of the Reconceptualization On Individualsmentioning

confidence: 99%

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On the reconceptualization of Alzheimer’s disease

2018

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In the hope of future treatments to prevent or slow down the disease, there is a strong movement towards an ever‐earlier detection of Alzheimer’s disease (AD). In conjunction with scientific developments, this has prompted a reconceptualization of AD, as a slowly progressive pathological process with a long asymptomatic phase. New concepts such as ‘preclinical’ and ‘prodromal’ AD have been introduced, raising a number of conceptual and ethical questions. We evaluate whether these new concepts are theoretically defensible, in light of theories of health and disease, and whether they should be understood as disease or as an at‐risk state. We introduce a pragmatic view on disease concepts and argue that an evaluation of the reconceptualization of AD should also take its aims and effects into account, and assess their ethical acceptability. The reconceptualization of AD is useful to coordinate research into preventive strategies, and may potentially benefit future patients. However, in the short term, early detection and labelling of ‘preclinical AD’ can potentially harm people. Since there is no treatment available and the predictive value is unclear, it may only create a group of ‘patients‐in‐waiting’ who may suffer from anxiety, uncertainty and stigmatization, but will never actually develop dementia. We conclude that only if the promise of preventive medication materializes, will the reconceptualization of AD turn out unequivocally to be for the better. Otherwise, the reconceptualization may do more harm than good.

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Section: Effects Of the Reconceptualization On Individualsmentioning

confidence: 99%

Section: Effects Of the Reconceptualization On Individualsmentioning

confidence: 99%

On the reconceptualization of Alzheimer’s disease

2018

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“…This is an alarming expansion of the concept of disease which may have far-reaching psychological, social, legal and financial consequences for individuals, consequences which are hard to study or to quantify. [10] Alternative approaches:In our view, this guidance goes beyond what was needed for its stated aims. Better communication about biomarkers and better characterisation of trial participants for interventions targeting a highly specific mechanism could be achieved by a purely descriptive vocabulary, such as the ATN labels, without linking these to disease categories.…”

Section: No Disease Is An Islandmentioning

confidence: 99%

When is Alzheimer’s not dementia—Cochrane commentary on The National Institute on Ageing and Alzheimer’s Association Research Framework for Alzheimer’s Disease

et al. 2019

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Early 2018 saw the release of new diagnostic guidance on Alzheimer's Disease from the National Institute on Ageing and the Alzheimer's Association (NIA-AA). This proposed research framework represents a fundamental change in how we think about Alzheimer's disease, moving from diagnosis based on clinical features to diagnosis based solely on biomarkers. These recommendations are contentious and have important implications for patients, clinicians, policy makers and the pharmaceutical industry. In this commentary, we offer a summary of the NIA-AA research framework. We then focus on five key areas:divorcing neuropathology from the clinical syndrome; the emphasis placed on one dementia subtype; validity of available biomarkers; the changing meaning of the term 'Alzheimer's disease'; and the potential for a research framework to influence clinical practice. Key points:  The NIA-AA research framework proposes a new view of Alzheimer's disease that is based solely on CSF and imaging biomarkers.  Although presented as guidance for research only, the framework has far reaching implications for clinical practice and for society.  The biomarkers described are neither sensitive nor specific to the clinical diagnosis of dementia.  A particularly contentious aspect is redefining Alzheimer's disease based only on a biomarker profile and requiring no corresponding symptoms.

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“…Biomarker tests for pre-symptomatic prediction have been announced repeatedly, but never really touched ground (Lock, 2013a;Whitehouse, 2016). Such announcements tend to invite both enthusiasm and concerns among journalists, patients and caregivers, and have triggered social science and ethical research on the desirability of pre-symptomatic prediction (e.g., Boenink et al, 2016;Bunnik et al, 2018;Schicktanz et al, 2014). In comparison, biomarker promises to diagnose individuals with complaints earlier or more precisely (e.g., Blennow & Zetterberg, 2018;Okamura et al, 2018;Palmqvist et al, 2020;Sun et al, 2018) look much less dramatic.…”

Section: Introductionmentioning

confidence: 99%