03 · What You Need to Know
Publication is expected in research, but identifiability changes the consent problem
Publication is not an accidental side effect of research. Disseminating results is part of the scientific enterprise.
The 2024 Declaration of Helsinki states that researchers, authors, sponsors, editors, and publishers have ethical obligations concerning publication and dissemination and that researchers have a duty to make results of human-participant research publicly available. Negative and inconclusive findings as well as positive findings should be published or otherwise made publicly available.
That does not mean every piece of participant information can be published merely because dissemination is scientifically important.
Publishing aggregate findings is different from publishing a person
Consider two outputs from the same study.
One article reports that participants in one experimental condition had a higher average score than participants in another. Nothing in the report allows readers to identify individual participants.
Another article includes a participant's photograph, age, occupation, rare diagnosis, exact location, and a detailed personal narrative.
Both are research publications. Their privacy implications are very different.
Publication of research findings
Dissemination of study results in a form that appropriately protects participant confidentiality and does not expose identifiable individual information beyond what was authorized.
Publication of identifiable participant material
Dissemination of photographs, case details, quotations, recordings, or other information from which an individual may be recognized directly or indirectly.
The original consent should explain relevant dissemination plans
Participants should receive information about confidentiality and relevant uses of their information as required by the framework governing the study.
In many studies, the consent materials explain that results may be published or presented but that individual participants will not be identified in those outputs.
If researchers already know that identifiable material may be published, that possibility should not be hidden behind generic language such as "the results may be disseminated."
The participant needs information appropriate to the actual publication risk.
De-identification reduces risk but does not always guarantee anonymity
Removing a name does not necessarily make a participant unidentifiable.
A quotation can reveal identity through distinctive events or language. A case narrative may combine enough characteristics for colleagues or family members to recognize the person. A photograph can remain identifiable despite cropping. Rare occupations, locations, diagnoses, or combinations of demographic characteristics can function as indirect identifiers.
ICMJE's current recommendations caution that identifying information should not be published unless scientifically essential and the individual provides written informed consent for publication. They also state that nonessential identifying details should be omitted and that consent should be obtained if there is doubt that anonymity can be maintained.
Identifiable publication may require specific consent for publication
In biomedical publishing, this distinction is particularly explicit.
ICMJE recommends written informed consent for publication when identifying patient information is scientifically essential. It further recommends that an identifiable patient be shown the manuscript to be published and informed that potentially identifiable material may be available online as well as in print.
Individual journals can impose their own policies. The BMJ, for example, ordinarily requires signed patient consent when personal patient information is published, and its author guidance requires identifiable patients to provide signed consent to publication.
These are publishing standards in a biomedical context, not universal rules for every discipline. Researchers should verify the policy of the intended journal or venue.
A participant may agree to research but object to being recognizable in the publication
There is nothing contradictory about these two decisions.
A participant may be happy for their data to contribute to aggregate findings but unwilling to have their face shown. Another may permit anonymous quotations but not a detailed case narrative. Someone else may be comfortable with a pseudonym while remaining identifiable to people who know the circumstances being described.
Researchers should therefore avoid reasoning that "they agreed to the study, so publication is covered" when the publication exposes the participant in a way that was not part of the original consent.
Qualitative quotations deserve particular attention
Qualitative research often relies on participants' words as evidence.
Researchers may remove names and use pseudonyms, yet verbatim quotations can still be recognizable. A distinctive story, workplace event, phrase, or combination of contextual details can identify someone to people familiar with the setting.
The consent process should therefore explain how quotations may be used and what measures will be taken to reduce identification when this is relevant.
Researchers may need to edit or withhold contextual details, paraphrase material when methodologically appropriate, or seek additional permission for particularly identifying quotations, depending on the protocol, disciplinary standards, and publication venue.
Images and recordings create stronger identification risks
Faces, voices, tattoos, surroundings, distinctive movement, and other features can make participants identifiable even when their names never appear.
If identifiable images, audio, or video may be published, presented, or made publicly accessible, the consent process should address those uses specifically rather than relying on a generic agreement to participate.
ICMJE explicitly notes that masking the eye region in patient photographs is inadequate protection of anonymity.
Case reports can require publication-specific consent
A clinical case report is unusual because the publication may focus on one individual rather than reporting aggregate findings from a research sample.
CARE case-report guidance treats informed consent as an essential reporting item and states that authors have an ethical duty to obtain consent to publish patient information in a case report.
Journal requirements can be even more specific. Researchers and clinicians preparing case reports should therefore check the intended journal's consent-to-publication policy rather than assuming ordinary clinical consent or research consent is sufficient.
Ethics approval does not necessarily replace publication consent
An ethics committee may approve the study and its consent procedure. A journal may still require separate evidence of consent to publish identifiable information.
ICMJE explicitly notes that approval by a responsible review body does not prevent editors from making their own judgment about whether research conduct and reporting are appropriate.
Researchers therefore need to satisfy both research-ethics requirements and applicable publication policies.
Publication consent should be specific enough to be meaningful
"Your information may be used in publications" can be adequate for ordinary protected reporting in some studies, but it may be too vague if researchers intend to publish identifiable photographs, detailed personal narratives, or recognizable video.
The participant should understand what type of material may appear, whether they may be identifiable, where the material may be disseminated, and any meaningful limitations on researchers' ability to control subsequent access.
Once something is published openly online, retrieving every copy later may be impossible.
Publication and data sharing are related but different
An article may contain only summarized findings while the underlying dataset is deposited in a repository for other researchers.
Conversely, an article can expose an identifiable quotation even when no dataset is shared.
Researchers should therefore consider consent for data sharing separately from publication of the article itself.
Withdrawal becomes complicated after publication
Before publication, researchers may sometimes be able to remove an identifiable quotation, image, or case description if a participant withdraws the relevant permission, depending on the study and agreement.
After publication, the situation changes. Articles may be downloaded, indexed, archived, copied, cited, or distributed beyond the research team's control.
Consent materials for identifiable publication should therefore avoid promising that published material can always be withdrawn from the public record later.
Watch Out
Do not assume that replacing a participant's name with a pseudonym makes publication anonymous. Consider whether the combination of quotations, images, circumstances, demographic details, locations, or rare characteristics could allow the person to be recognized.
