Introduction: The use of human samples in genomic research has increased ethical debate about informed consent (IC) requirements and the information that subjects should receive regarding the results of the research. However, there are no quantitative data regarding researchers’ attitudes about these issues.
Methods: We present the results of a survey of 104 US and 100 Spanish researchers who had published genomic epidemiology studies in 61 journals during 2006.
Results: Researchers preferred a broader IC than the IC they had actually obtained in their published papers. US authors were more likely than their Spanish colleagues to support obtaining a broad IC, covering either any future research project or any projects related to a group of diseases (67.6% vs 43%; adjusted OR = 4.84, 95% CI, 2.32 to 10.12). A slight majority of researchers (55.8%) supported informing participants about individual genomic results only if the reliability and clinical validity of the information had been established. Men were more likely than women to believe that patients should be informed of research results even if these conditions were not met (adjusted OR = 2.89, 95% CI = 1.46 to 5.72).
Conclusions: This study provides evidence of a wide range of views among scientists regarding some controversial ethical issues related to genomic research, suggesting the need for more study, debate and education. In the interim, journals might consider including the investigators’ policies regarding these ethical issues in the papers they publish in the field of genomic epidemiology.
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Competing interests: None.
Provenance and peer review: Not commissioned; externally peer reviewed.
Ethics approval: The study was approved by the Integrated Scientific and Ethical Review Board at St. Vincent’s Hospital-Manhattan in New York and the Research Ethics Committee at the University Clinic of Navarra in Spain.
▸ Additional appendix data are published online only at http://jme.bmj.com/content/vol35/issue4