Browsing by Subject "research ethics"

Now showing 1 - 3 of 3
  • Thumbnail Image
    Item
    Erratum to: Benchmarks for ethically credible partnerships between industry and academic health centers: beyond disclosure of financial conflicts of interest.
    (Springer, 2016) Meslin, Eric M.; Rager, Joshua B.; Schwartz, Peter H.; Quaid, Kimberly A.; Gaffney, Margaret M.; Duke, Jon; Tierney, William M.; Department of Philosophy, IU School of Liberal Arts
  • Thumbnail Image
    Item
    Ethical conflicts in translational genetic research: lessons learned from the eMERGE-III experience
    (Nature Publishing Group, 2020-06-18) Halverson, Colin M. E.; Bland, Sarah T.; Leppig, Kathleen A.; Marasa, Maddalena; Myers, Melanie; Rasouly, Hila Milo; Wynn, Julia; Clayton, Ellen Wright; Medicine, School of Medicine
    Purpose The Electronic Medical Records and Genomics (eMERGE) Consortium integrated biorepository-based research with electronic health records (EHR) to return results from large-scale genetic tests to participants and uploaded those data into the EHR. This article explores the ethical issues investigators encountered in that process. Methods We conducted in-depth, semistructured interviews with study personnel of the eMERGE-III Consortium sites that returned results. Results We discuss major ethical issues that arose while attempting to return research results from the eMERGE Consortium to individual participants. These included difficulties recontacting those participants who had not explicitly consented to such and disclosing results to many participants with insufficient infrastructure and staff. Investigators reported being driven by a supererogatory clinical impulse. Conclusion All these issues ultimately derive from ethical conflicts inherent to translational work being done at the interface of research and clinical care. A critical rethinking of this divide is important, but infrastructural support for such work is necessary for an ethically sound rollout of large-scale genetic testing.
  • Thumbnail Image
    Item
    Ethical Issues in Measuring Biomarkers in Children’s Environmental Health
    (2009-08) Sly, PD; Eskenazi, B; Pronczuk, J; Srám, R; Diaz-Barriga, F; Machin, DG; Carpenter, DO; Surdu, S; Meslin, Eric M.
    Background Studying the impact of environmental exposures is important in children because they are more vulnerable to adverse effects on growth, development, and health. Assessing exposure in children is difficult, and measuring biomarkers is potentially useful. Research measuring biomarkers in children raises a number of ethical issues, some of which relate to children as research subjects and some of which are specific to biomarker research. Objective As an international group with experience in pediatric research, biomarkers, and the ethics of research in children, we highlight the ethical issues of undertaking biomarker research in children in these environments. Discussion Significant issues include undertaking research in vulnerable communities, especially in developing countries; managing community expectations; obtaining appropriate consent to conduct the research; the potential conflicts of obtaining permission from an ethics review board in an economically developed country to perform research in a community that may have different cultural values; returning research results to participants and communities when the researchers are uncertain of how to interpret the results; and the conflicting ethical obligations of maintaining participant confidentiality when information about harm or illegal activities mandate reporting to authorities. Conclusion None of these challenges are insurmountable and all deserve discussion. Pediatric biomarker research is necessary for advancing child health.