Consent for publication (Participant)
ThemesConsent for publication (Participant)
What is this about?
Why is this important?
Publishing certain research data, obtained in circumstances of confidentiality between researcher and participant, can be made accessible to the rest of the world[1] and this can mean breaching of that confidentiality. This is why research participants need to know which data will be revealed to the public. In order to submit and subsequently publish case reports, authors have to obtain participant’s consent for publication. For example, in the case of unusual diagnosis in medical research or some details regarding the participant’s history (age, sex or occupation) along with the author’s name and affiliation that can reveal the participant’s identity, the participant’s consent is indispensable.[1] Some of the examples of identifying information are descriptions of individual case histories, photographs, videos, x-rays or genetic pedigrees.[3]
Researchers should inform participants that anyone who has access to Internet would be able to view the published article.[1] Consent for publication should be obtained from participants or their legal guardians if the participants are under 16. In case of deceased persons, consent should be obtained by the deceased family or relatives.[3] Consent is voluntarily and participant is free to withdraw it before the publication.[1]For whom is this important?
What are the best practices?
There is no single uniform consent form for all journals, only general principles and guidance provided by committees for publication ethics. The British Medical Journal (BMJ) Ethics Committee, for example, offers recommendations on how to obtain the participant’s consent. The consent is necessary even if identifying details are removed. Participant’s personal information will not be published if he or she refuses to give consent, with the exception of high importance to public health.[1] Some recommendations to publish research findings without participant’s consent include these conditions:
-the participant cannot be found in order to give his consent or it is impossible or unreasonable to expect to gain consent from the patient or his next-of-kin
-the article contains data which importance for public health overrides the importance of participant’s consent
-it is expected that a participant would not object to the publication of the case. This requires an assessment of the intrusiveness of the disclosure and potential embarrassment or distress
-the case is anonymized so that the participant’s identity will not be revealed.[1]
The committee has also stated that giving absolute priority to confidentiality would hold back medical research and education, so there must be a balance between confidentiality and the need for data sharing.[1]
Committee on Publication Ethics (COPE) has released a Discussion document on Best Practice for Consent for Publishing Medical Case Reports. The document stated that authors are obliged to collect the signed consent forms, not journals, and that forms should be used for cases where an individual or a group of individuals could be identified.[3] It concluded that no single form would be adequate for all journals, so it presented some specific points that a consent form should include:
-a place for the name of the patient and the name of the individual signing the form
-a place for the name of the person who has explained the form to the patient or family member
-indication that the patient has seen the case report and pictures regarding it and that they agree to it
-information that the journal cannot guarantee confidentiality after publishing the case report
-information under what license the report is published
-information that form does not remove the patient’s rights to privacy
-information that the patient has been informed of his right to revoke consent at any time before publication
-information that patients cannot expect any financial benefit from the publication of the case.
The document also provided links to examples of cases report forms and relevant guidance.[3] Example of participant’s consent for publication in a PLos One journal can be found here.
Andrijana Perković Paloš contributed to this theme. Latest contribution was Jun 11, 2021
Other information
Virtues & Values
Good Practices & Misconduct
- ↑ 1.0 1.1 1.2 1.3 1.4 1.5 1.6 1.7 1.8 Fletcher J, Kelsall Diane. Consent to publish is a matter of trust. CMAJ. 2014;186(5):323. Cite error: Invalid
<ref>tag; name ":0" defined multiple times with different content - ↑ Participant consent to publish. IOPScience. [cited 2020 Oct 26]. Available from: https://publishingsupport.iopscience.iop.org/questions/participant-consent/.
- ↑ 3.0 3.1 3.2 3.3 Participant consent to publish. IOPScience. [cited 2020 Oct 26]. Available from: https://publishingsupport.iopscience.iop.org/questions/participant-consent/. Cite error: Invalid
<ref>tag; name ":1" defined multiple times with different content
