Title |
An implementation framework for the feedback of individual research results and incidental findings in research
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Published in |
BMC Medical Ethics, December 2014
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DOI | 10.1186/1472-6939-15-88 |
Pubmed ID | |
Authors |
Adrian Thorogood, Yann Joly, Bartha Maria Knoppers, Tommy Nilsson, Peter Metrakos, Anthoula Lazaris, Ayat Salman |
Abstract |
This article outlines procedures for the feedback of individual research data to participants. This feedback framework was developed in the context of a personalized medicine research project in Canada. Researchers in this domain have an ethical obligation to return individual research results and/or material incidental findings that are clinically significant, valid and actionable to participants. Communication of individual research data must proceed in an ethical and efficient manner. Feedback involves three procedural steps: assessing the health relevance of a finding, re-identifying the affected participant, and communicating the finding. Re-identification requires researchers to break the code in place to protect participant identities. Coding systems replace personal identifiers with a numerical code. Double coding systems provide added privacy protection by separating research data from personal identifying data with a third "linkage" database. A trusted and independent intermediary, the "keyholder", controls access to this linkage database. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
Canada | 3 | 19% |
Germany | 1 | 6% |
United States | 1 | 6% |
Switzerland | 1 | 6% |
Unknown | 10 | 63% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 10 | 63% |
Scientists | 4 | 25% |
Science communicators (journalists, bloggers, editors) | 2 | 13% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
United Kingdom | 1 | 1% |
Unknown | 76 | 99% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Master | 15 | 19% |
Researcher | 13 | 17% |
Student > Ph. D. Student | 7 | 9% |
Other | 6 | 8% |
Student > Postgraduate | 5 | 6% |
Other | 12 | 16% |
Unknown | 19 | 25% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 15 | 19% |
Social Sciences | 7 | 9% |
Agricultural and Biological Sciences | 6 | 8% |
Nursing and Health Professions | 4 | 5% |
Philosophy | 4 | 5% |
Other | 19 | 25% |
Unknown | 22 | 29% |