Early diagnostics and Alzheimer's disease: Beyond ‘cure’ and ‘care’

Cuijpers, Yvonne; Lente, Harro van

doi:10.1016/j.techfore.2014.03.006

Cited by 28 publications

(25 citation statements)

References 13 publications

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“…There is debate about this question in the social sciences and in ethics. Many scholars in these fields regard dementia biomarker research with reserve (Jongsma and Sand 2017; Cuijpers and Van Lente 2015; Innes and Manthorpe 2013; Peine et al 2015; Boenink et al 2011; Van der Laan and Olthuis 2013). Some criticize it for offering reductionist ideas about what dementia is and ‘how we might try to respond to or look for a solution’ to it (Innes and Manthorpe 2013).…”

Section: Introductionmentioning

confidence: 99%

“…However, some argue that dementia also needs to be approached in a broader way as history points out that the hope to find a cure often fails to materialize, or materializes in a sub-optimal manner, such as is the case with promises to provide a ‘cure for cancer’ (Jongsma and Sand 2017). The focus on finding a cure for dementia should therefore not eclipse attention for more low tech ‘caring’ responses that dementia patients should be able to fall back on—and which represent, according to some, a much better strategy to deal with dementia (Cuijpers and Van Lente 2015).…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Valuing biomarker diagnostics for dementia care: enhancing the reflection of patients, their care-givers and members of the wider public

Burg

Schreuder

Klijn

et al. 2019

Med Health Care and Philos

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What is the value of an early (presymptomatic) diagnosis of dementia in the absence of effective treatment? There has been a lively scholarly debate over this question, but until now (future) patients have not played a large role in it. Our study supplements biomedical research into innovative diagnostics with an exlporation of its meanings and values according to (future) patients. Based on seven focusgroups with (future) patients and their care-givers, we conclude that stakeholders evaluate early diagnostics with respect to whether and how they expect it to empower their capacity to (self-) care. They value it, for instance, with respect to whether it (a) explains experienced complaints, (b) allows to start a process of psychological acceptance and social adaptation to the expected degeneration, (c) contributes to dealing with anxieties (with respect to inheritable versions of dementia), (d) informs adequately about when to start preparing for the end of life, (d) informs the planning of a request for euthanasia, or (e) allows society to deal with a growing amount of dementia patients. Our study suggests that information about disease is considered ‘harmful’ or ‘premature’ when recipients feel unable to act on that information in their (self-) care. The results of this research offers input to further ethical research. It invites to adopt a care perspective in evaluation and to seek ways to prevent the ‘harm’ that such diagnostic methods can bring about.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Valuing biomarker diagnostics for dementia care: enhancing the reflection of patients, their care-givers and members of the wider public

Burg

Schreuder

Klijn

et al. 2019

Med Health Care and Philos

View full text Add to dashboard Cite

show abstract

“…HTAs make more modest claims than RRI when it comes to addressing "significant societal needs and challenges" since it is oriented towards a single item and its comparators. RRI can supply HTA with clearer reflections on the purposes of an assessment, the social meanings of both cure and care, and alternate framings of illness and disease (Cuijpers & van Lente 2015;Moors & Peine 2016). RiH contributions regarding the business model, frugality and, especially, health relevance are welcome specifications from RRI to HTA.…”

Section: Resultsmentioning

confidence: 99%

Responsibility for Assisted Living Technologies

Thorstensen¹

2019

Etikk Praksis - Nord J Appl Ethics

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The approach to innovations known as Responsible research and innovation (RRI) aims to move the innovation system towards creating products that strive to realize social values along with economic benefits. This paper discusses the systematic assessment of assistive technologies in order for them to meet the aims expressed in RRI. A central issue in the discussion is how to facilitate an integration of insights from the discourse on RRI with more established assessment approaches such as Health Technology Assessment (HTA). Based on the literature on existing socio-ethical assessment tools, I investigate how these tools can be combined with HTA and how they can add perspectives from RRI that might increase the socio-ethical value of assistive technologies. Through a discussion on how to understand RRI, HTA, assessment and integration, I suggest a list of four possible approaches that have the potential to be applied as assessment approaches that integrate insights from RRI and HTA. These are then evaluated on their ability to address issues that have emerged from a literature review on RRI and assistive technologies, on empirical studies in this technology field and on their product focus. In conclusion, I argue that the Ethical Impact Assessment, the Socratic approach, the Ethical Matrix, and the HTA Core Model seem to be the most promising methodologies, but that these need adjustments to cover substantive themes from RRI. Keywords: energy scenarios, justice, future generations, capabilities approach

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“…More radically, we may have to question the widespread view of participation as one or more discrete, deliberative events and look to other possible forms, whether staged or 'in the wild', where deliberation plays a smaller role, e.g. material participation (Marres 2012) or participation as 'pleasure' (Davies 2016; see also Cuijpers and van Lente 2015).…”

Section: Main Insights: Voice and 'Futuring' Revisitedmentioning

confidence: 99%

Subtle voices, distant futures: a critical look at conditions for patient involvement in Alzheimer’s biomarker research and beyond

Nielsen

Boenink

2019

Journal of Responsible Innovation

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Patient involvement is increasingly regarded a key part of responsible innovation (RI) in biomedicine. The high expectations to participation call not only for methodological experiments, but also for critical analyses of the conditions and products of participatory practices. Based on an experiment with involving patients in Alzheimer's disease biomarker research, we identify and reflect on two key conditions in patient involvement that we summarize as 'subtle voices' and 'distant futures'. The former refers to the hesitance and knowledge hierarchies that participants may enact and/or experience; the latter refers to the challenges of imagining elusive technologies and future practices, not least in the light of an illness that fundamentally changes the meaning of time. We argue that while our case may be exceptionally challenging, it provides a valuable lens for illuminating these key conditions that promotors and facilitators of patient participation in, especially, early-stage innovation processes should acknowledge and address. ARTICLE HISTORY

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Early diagnostics and Alzheimer's disease: Beyond ‘cure’ and ‘care’

Cited by 28 publications

References 13 publications

Valuing biomarker diagnostics for dementia care: enhancing the reflection of patients, their care-givers and members of the wider public

Valuing biomarker diagnostics for dementia care: enhancing the reflection of patients, their care-givers and members of the wider public

Responsibility for Assisted Living Technologies

Subtle voices, distant futures: a critical look at conditions for patient involvement in Alzheimer’s biomarker research and beyond

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