The values of ‘knowing’ (the future): Insights from a participatory ethical assessment of emergent biomarkers for AD diagnostics

Research output: Contribution to conferenceAbstractAcademic

Abstract

Objectives: In research into potential biomarkers for AD, diagnostics is assigned significant value. The hope is that biomarkers will enable earlier and more precise diagnoses – with the implicit or explicit assumption that ‘knowing more’ and ‘knowing sooner’ is somehow empowering, even though the immediate prospect of effective therapy is lacking. To assess the desirability of biomarker testing in development, we should ask whether the value of biomarker knowledge assumed and aimed for by researchers actually matches with the perspectives and priorities of patients and informal caregivers.
Methods: In order to understand what value (if any) that knowing ‘more’ and ‘sooner’ might have for AD-patients, we conducted qualitative, partly scenario-based interviews (23 in total) with patients and partners. We contextualized these with participant observation in a biomarker research project and interviews (12 in total) with the involved researchers.
Results: The results tell, at once, about great individual variation and common dilemmas. A set of issues occurred that seem particularly relevant for the further development of emergent diagnostics tools: overall, the ambiguous power of an AD diagnosis – to act, to prepare, to feel powerless, and as part of this, the ambivalence towards knowing the future and the multiple meanings and practices of “preparing”.
Conclusions: These issues have ethical implications for AD diagnostics now and the future. In conclusion, we will discuss these implications and reflect on how they might be taken into account in the further development (and implementation) of AD biomarkers.
Research support: The study is funded by the Dutch funding agency ZonMW, programme Memorabel (1).
Original languageEnglish
Publication statusPublished - 2018
EventEACME Annual Conference 2018: Ethics in Action - VU Amsterdam, Amsterdam, Netherlands
Duration: 6 Sep 20188 Sep 2018

Conference

ConferenceEACME Annual Conference 2018
CountryNetherlands
CityAmsterdam
Period6/09/188/09/18

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Biomarkers
Hope
Research Personnel
Interviews
Research
Ethics
Caregivers
Observation
Therapeutics

Cite this

@conference{dfabfb1957454e59b2d567221048c126,
title = "The values of ‘knowing’ (the future): Insights from a participatory ethical assessment of emergent biomarkers for AD diagnostics",
abstract = "Objectives: In research into potential biomarkers for AD, diagnostics is assigned significant value. The hope is that biomarkers will enable earlier and more precise diagnoses – with the implicit or explicit assumption that ‘knowing more’ and ‘knowing sooner’ is somehow empowering, even though the immediate prospect of effective therapy is lacking. To assess the desirability of biomarker testing in development, we should ask whether the value of biomarker knowledge assumed and aimed for by researchers actually matches with the perspectives and priorities of patients and informal caregivers. Methods: In order to understand what value (if any) that knowing ‘more’ and ‘sooner’ might have for AD-patients, we conducted qualitative, partly scenario-based interviews (23 in total) with patients and partners. We contextualized these with participant observation in a biomarker research project and interviews (12 in total) with the involved researchers. Results: The results tell, at once, about great individual variation and common dilemmas. A set of issues occurred that seem particularly relevant for the further development of emergent diagnostics tools: overall, the ambiguous power of an AD diagnosis – to act, to prepare, to feel powerless, and as part of this, the ambivalence towards knowing the future and the multiple meanings and practices of “preparing”. Conclusions: These issues have ethical implications for AD diagnostics now and the future. In conclusion, we will discuss these implications and reflect on how they might be taken into account in the further development (and implementation) of AD biomarkers. Research support: The study is funded by the Dutch funding agency ZonMW, programme Memorabel (1).",
author = "Nielsen, {Karen Dam} and Marianne Boenink",
year = "2018",
language = "English",
note = "EACME Annual Conference 2018 : Ethics in Action ; Conference date: 06-09-2018 Through 08-09-2018",

}

The values of ‘knowing’ (the future) : Insights from a participatory ethical assessment of emergent biomarkers for AD diagnostics. / Nielsen, Karen Dam; Boenink, Marianne .

2018. Abstract from EACME Annual Conference 2018, Amsterdam, Netherlands.

Research output: Contribution to conferenceAbstractAcademic

TY - CONF

T1 - The values of ‘knowing’ (the future)

T2 - Insights from a participatory ethical assessment of emergent biomarkers for AD diagnostics

AU - Nielsen, Karen Dam

AU - Boenink, Marianne

PY - 2018

Y1 - 2018

N2 - Objectives: In research into potential biomarkers for AD, diagnostics is assigned significant value. The hope is that biomarkers will enable earlier and more precise diagnoses – with the implicit or explicit assumption that ‘knowing more’ and ‘knowing sooner’ is somehow empowering, even though the immediate prospect of effective therapy is lacking. To assess the desirability of biomarker testing in development, we should ask whether the value of biomarker knowledge assumed and aimed for by researchers actually matches with the perspectives and priorities of patients and informal caregivers. Methods: In order to understand what value (if any) that knowing ‘more’ and ‘sooner’ might have for AD-patients, we conducted qualitative, partly scenario-based interviews (23 in total) with patients and partners. We contextualized these with participant observation in a biomarker research project and interviews (12 in total) with the involved researchers. Results: The results tell, at once, about great individual variation and common dilemmas. A set of issues occurred that seem particularly relevant for the further development of emergent diagnostics tools: overall, the ambiguous power of an AD diagnosis – to act, to prepare, to feel powerless, and as part of this, the ambivalence towards knowing the future and the multiple meanings and practices of “preparing”. Conclusions: These issues have ethical implications for AD diagnostics now and the future. In conclusion, we will discuss these implications and reflect on how they might be taken into account in the further development (and implementation) of AD biomarkers. Research support: The study is funded by the Dutch funding agency ZonMW, programme Memorabel (1).

AB - Objectives: In research into potential biomarkers for AD, diagnostics is assigned significant value. The hope is that biomarkers will enable earlier and more precise diagnoses – with the implicit or explicit assumption that ‘knowing more’ and ‘knowing sooner’ is somehow empowering, even though the immediate prospect of effective therapy is lacking. To assess the desirability of biomarker testing in development, we should ask whether the value of biomarker knowledge assumed and aimed for by researchers actually matches with the perspectives and priorities of patients and informal caregivers. Methods: In order to understand what value (if any) that knowing ‘more’ and ‘sooner’ might have for AD-patients, we conducted qualitative, partly scenario-based interviews (23 in total) with patients and partners. We contextualized these with participant observation in a biomarker research project and interviews (12 in total) with the involved researchers. Results: The results tell, at once, about great individual variation and common dilemmas. A set of issues occurred that seem particularly relevant for the further development of emergent diagnostics tools: overall, the ambiguous power of an AD diagnosis – to act, to prepare, to feel powerless, and as part of this, the ambivalence towards knowing the future and the multiple meanings and practices of “preparing”. Conclusions: These issues have ethical implications for AD diagnostics now and the future. In conclusion, we will discuss these implications and reflect on how they might be taken into account in the further development (and implementation) of AD biomarkers. Research support: The study is funded by the Dutch funding agency ZonMW, programme Memorabel (1).

M3 - Abstract

ER -