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Research article
Bert Heinrichs
Institute of Science and Ethics (IWE) Rheinische Friedrich-Wilhelms-Universität Bonn Bonner Talweg 57, 53113 Bonn
Corresponding Author
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Background: Advance research directives (ARD) have been suggested to facilitate research with incapacitated subjects, in particular in the context of dementia research. However, established disclosure requirements for study participation raise an ethical problem for the application of ARDs: While regular consent procedures call for detailed information on a specific study (“token disclosure”), ARDs can typically only include generic information (“type disclosure”). ARDs, therefore, run the risk of introducing an ethically problematic double standard.
Methods: This paper provides an ethical analysis of ARDs, taking into account the results of numerous empirical studies that have been performed so far. It will be argued that a revised understanding of informed consent can allow for context-sensitive disclosure standards. As a consequence, ARDs that include “type disclosure” can be acceptable under suitable circumstances.
Discussion: Such an approach raises objections, two of which are especially important. A thorough examination shows, however, that they are not sufficient to justify a rejection of the approach.
Conclusion: The approach presented in this paper avoids introducing a double-standard for particular types of research such as dementia research. It is, therefore, more suitable for the implementation of ARDs than established approaches.
Keywords
Advance research directives, informed consent, dementia research, research ethics
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Peer Review Timeline
CURRENT STATUS: Under Review
Version 1
Posted 15 Dec, 2020
No community comments so far
Reviewer #2 agreed
On 17 May, 2021
Review #1 received
Received 06 Mar, 2021
Reviewer #1 agreed
On 08 Feb, 2021
Reviewers invited
Invitations sent on 02 Feb, 2021
Editor assigned
On 12 Jan, 2021
Submission checks complete
On 09 Dec, 2020
Editor invited
On 07 Dec, 2020
First submitted
On 16 Nov, 2020
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Medical Ethics
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A new preprint design is coming!
We have improved readability, clarity, accessibility, and opportunities for engagement.
This preprint is under consideration at BMC Medical Ethics. A preprint is a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Learn more about In Review
Research article
Bert Heinrichs
Institute of Science and Ethics (IWE) Rheinische Friedrich-Wilhelms-Universität Bonn Bonner Talweg 57, 53113 Bonn
Corresponding Author
Badges
Prescreen
This manuscript passed our Prescreen assessment
Complete author information
Appropriate declaration statements
Potential risks to human health
Prescreen
Peer Review Timeline
CURRENT STATUS: Under Review
Version 1
Posted 15 Dec, 2020
No community comments so far
Reviewer #2 agreed
On 17 May, 2021
Review #1 received
Received 06 Mar, 2021
Reviewer #1 agreed
On 08 Feb, 2021
Reviewers invited
Invitations sent on 02 Feb, 2021
Editor assigned
On 12 Jan, 2021
Submission checks complete
On 09 Dec, 2020
Editor invited
On 07 Dec, 2020
First submitted
On 16 Nov, 2020
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Medical Ethics
License:
This work is licensed under a CC BY 4.0 License. Read Full License
Background: Advance research directives (ARD) have been suggested to facilitate research with incapacitated subjects, in particular in the context of dementia research. However, established disclosure requirements for study participation raise an ethical problem for the application of ARDs: While regular consent procedures call for detailed information on a specific study (“token disclosure”), ARDs can typically only include generic information (“type disclosure”). ARDs, therefore, run the risk of introducing an ethically problematic double standard.
Methods: This paper provides an ethical analysis of ARDs, taking into account the results of numerous empirical studies that have been performed so far. It will be argued that a revised understanding of informed consent can allow for context-sensitive disclosure standards. As a consequence, ARDs that include “type disclosure” can be acceptable under suitable circumstances.
Discussion: Such an approach raises objections, two of which are especially important. A thorough examination shows, however, that they are not sufficient to justify a rejection of the approach.
Conclusion: The approach presented in this paper avoids introducing a double-standard for particular types of research such as dementia research. It is, therefore, more suitable for the implementation of ARDs than established approaches.
The full text of this article is available to read as a PDF.
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