Article Text
Abstract
Many research ethics guidelines now oblige researchers to offer research participants the results of research in which they participated. This practice is intended to uphold respect for persons and ensure that participants are not treated as mere means to an end. Yet some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support of this view, we argue that current rationales for a duty of disclosure do not form an adequate basis for an ethical imperative. We review policy guidance and scholarly commentary regarding the duty to communicate the results of biomedical, epidemiological and genetic research to research participants and show that there is wide variation in opinion regarding what should be disclosed and under what circumstance. Moreover, we argue that there is fundamental confusion about the notion of “research results,” specifically regarding three core concepts: the distinction between aggregate and individual results, amongst different types of research, and across different degrees of result veracity. Even where policy guidance and scholarly commentary have been most forceful in support of an ethical imperative to disclose research results, ambiguity regarding what is to be disclosed confounds ethical action.
Statistics from Altmetric.com
Footnotes
Competing interests: None.
↵i Parker11 suggests that the duty to warn serves as the one clear and exceptional instance in which research results should be returned. The commentators discussed here also interpret disclosure as exceptional, but justify the return of results as a duty to disclose rather than a duty to warn, and use broader criteria than are typically relied upon for a duty to warn (ie, averting immediate and life- or severe-health- threatening harm).
Read the full text or download the PDF:
Other content recommended for you
- Non-equivalent stringency of ethical review in the Baltic States: a sign of a systematic problem in Europe?
- Ethical aspects of research into Alzheimer disease. A European Delphi Study focused on genetic and non-genetic research
- The search for clarity in communicating research results to study participants
- Collection, storage and use of blood samples for future research: views of Egyptian patients expressed in a cross-sectional survey
- Attitudes of African-American parents about biobank participation and return of results for themselves and their children
- Is it ethical to deny genetic research participants individualised results?
- Legislative regulation and ethical governance of medical research in different European Union countries
- What does ‘respect for persons’ require? Attitudes and reported practices of genetics researchers in informing research participants about research
- An investigation of patients’ motivations for their participation in genetics-related research
- Taking it to the bank: the ethical management of individual findings arising in secondary research