The Emergence of an Ethical Duty to Disclose Genetic Research Results: International Perspectives
Overview
Affiliations
The last decade has witnessed the emergence of international ethics guidelines discussing the importance of disclosing global and also, in certain circumstances, individual genetic research results to participants. This discussion is all the more important considering the advent of pharmacogenomics and the increasing incidence of 'translational' genetic research in the post-genomic era. We surveyed both the literature and the ethical guidelines using selective keywords. We then analyzed our data using a qualitative method approach and singled out countries or policies that were representative of certain positions. From our findings, we conclude that at the international level, there now exists an ethical duty to return individual genetic research results subject to the existence of proof of validity, significance and benefit. Even where these criteria are met, the right of the research participant not to know also has to be taken into consideration. The existence of an ethical duty to return individual genetic research results begs several other questions: Who should have the responsibility of disclosing such results and when? To whom should the results be disclosed? How? Finally, will this ethical 'imperative' become a legally recognized duty as well?
Returning raw genomic data to research participants in a pediatric cancer precision medicine trial.
Barlow-Stewart K, Courtney E, Cowley M, Ebzery C, Fuentes Bolanos N, Gifford A NPJ Genom Med. 2025; 10(1):12.
PMID: 39962063 PMC: 11832931. DOI: 10.1038/s41525-025-00470-y.
Best L, OLeary M, OLeary R, Lawrence W, Torgerson D J Pers Med. 2023; 13(9).
PMID: 37763174 PMC: 10532458. DOI: 10.3390/jpm13091407.
The reuse of genetic information in research and informed consent.
Lorenzo D, Esquerda M, Bofarull M, Cusi V, Roig H, Bertran J Eur J Hum Genet. 2023; 31(12):1393-1397.
PMID: 37699995 PMC: 10689789. DOI: 10.1038/s41431-023-01457-y.
Kilbride M, Egleston B, Chung W, Olopade O, Maxwell K, Shah P J Clin Oncol. 2023; 41(31):4905-4915.
PMID: 37611220 PMC: 10617912. DOI: 10.1200/JCO.22.00516.
Bak M, Vroonland J, Blom M, Damjanovic D, Willems D, Tan H Resusc Plus. 2023; 15:100414.
PMID: 37363125 PMC: 10285638. DOI: 10.1016/j.resplu.2023.100414.