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.
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Research article
Citizens' Views on Sharing Their Health Data: the Role of Competence, Reliability and Pursuing the Common Good.
Minerva C Rivas Velarde
University of Geneva
Corresponding Author
ORCiD: https://orcid.org/0000-0003-3747-3306
License:
This work is licensed under a CC BY 4.0 License. Read Full License
Background
In this article, we raise several questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted for the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public society regarding predictive oncology, genetic sequencing, and cancer.
Methods
This paper present the results of a citizen forum that included 73 participants. A research tool titled "the mechanics of consent" was design for this study. This tool is table designed to allow participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants’ discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis.
Results
The results are a compilation of responses from the mechanics of consent tool divided into two sections; the first quantitative results presenting of collective responses regarding attitudes to consent to donate their data by qualitative findings emerged from the discussion amongst participants.
Discussion
Choice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits; who will be accessing and using their data; as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, meaning they are responsible to accept or refuse trust when it is misplaced or built upon unrealistic expectations. Finally, informed consent is one of the various elements that contribute to conducting ethical research, more needs to be done to strengthen governance and ensure adequate protection to research participants particularly to address issues related to predictive health analytics.
Keywords
Health Data, Reliability and Pursuing the Common Good, Informed consent in research
Due to technical limitations, table 1, 2, 3, 4, 5, 6 and 7 is only available as a download in the Supplemental Files section.
This is a list of supplementary files associated with this preprint. Click to download.
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Peer Review Timeline
CURRENT STATUS: Under Revision
Version 1
Posted 29 Sep, 2020
No community comments so far
Editorial decision: Major revision
On 14 Dec, 2020
Review #3 received
Received 10 Nov, 2020
Review #2 received
Received 14 Oct, 2020
Reviewer #3 agreed
On 28 Sep, 2020
Reviewer #2 agreed
On 22 Sep, 2020
Review #1 received
Received 31 Jul, 2020
Reviewers invited
Invitations sent on 23 Jul, 2020
Reviewer #1 agreed
On 23 Jul, 2020
Editor assigned
On 07 Jul, 2020
Submission checks complete
On 06 Jul, 2020
Editor invited
On 06 Jul, 2020
Metrics
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PDF Downloads: ...
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Subject Areas
Medical Ethics
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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
Citizens' Views on Sharing Their Health Data: the Role of Competence, Reliability and Pursuing the Common Good.
Minerva C Rivas Velarde
University of Geneva
Corresponding Author
ORCiD: https://orcid.org/0000-0003-3747-3306
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 Revision
Version 1
Posted 29 Sep, 2020
No community comments so far
Editorial decision: Major revision
On 14 Dec, 2020
Review #3 received
Received 10 Nov, 2020
Review #2 received
Received 14 Oct, 2020
Reviewer #3 agreed
On 28 Sep, 2020
Reviewer #2 agreed
On 22 Sep, 2020
Review #1 received
Received 31 Jul, 2020
Reviewers invited
Invitations sent on 23 Jul, 2020
Reviewer #1 agreed
On 23 Jul, 2020
Editor assigned
On 07 Jul, 2020
Submission checks complete
On 06 Jul, 2020
Editor invited
On 06 Jul, 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
In this article, we raise several questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted for the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public society regarding predictive oncology, genetic sequencing, and cancer.
Methods
This paper present the results of a citizen forum that included 73 participants. A research tool titled "the mechanics of consent" was design for this study. This tool is table designed to allow participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants’ discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis.
Results
The results are a compilation of responses from the mechanics of consent tool divided into two sections; the first quantitative results presenting of collective responses regarding attitudes to consent to donate their data by qualitative findings emerged from the discussion amongst participants.
Discussion
Choice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits; who will be accessing and using their data; as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, meaning they are responsible to accept or refuse trust when it is misplaced or built upon unrealistic expectations. Finally, informed consent is one of the various elements that contribute to conducting ethical research, more needs to be done to strengthen governance and ensure adequate protection to research participants particularly to address issues related to predictive health analytics.
Due to technical limitations, table 1, 2, 3, 4, 5, 6 and 7 is only available as a download in the Supplemental Files section.