Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings?

被引:67
作者
Gliwa, Catherine [1 ]
Berkman, Benjamin E. [1 ,2 ]
机构
[1] NIH, Bethesda, MD 20892 USA
[2] NHGRI, Bethesda, MD USA
关键词
genetics (clinical); genetic research; human subjects research; research ethics; ANCILLARY-CARE RESPONSIBILITIES; RESEARCH PARTICIPANTS; MEDICAL RESEARCHERS; ETHICAL FRAMEWORK; CLINICAL-PRACTICE; GENOMIC RESEARCH; WORKING GROUP; RECOMMENDATIONS; CHALLENGES; VARIANTS;
D O I
10.1080/15265161.2012.754062
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
The rapid growth of next-generation genetic sequencing has prompted debate about the responsibilities of researchers toward genetic incidental findings. Assuming there is a duty to disclose significant incidental findings, might there be an obligation for researchers to actively look for these findings? We present an ethical framework for analyzing whether there is a positive duty to look for genetic incidental findings. Using the ancillary care framework as a guide, we identify three main criteria that must be present to give rise to an obligation to look: high benefit to participants, lack of alternative access for participants, and reasonable burden on researchers. Our analysis indicates that there is no obligation to look for incidental findings today, but during the ongoing translation of genomic analysis from research to clinical care, this obligation may arise.
引用
收藏
页码:32 / 42
页数:11
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