What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.
- Authors
- Henderson, Gail E; Juengst, Eric T; King, Nancy M P; Kuczynski, Kristine; Michie, Marsha
- Year
- 2012
- Journal
- The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
- PMID
- 23289702
- DOI
- 10.1111/j.1748-720X.2012.00728.x
- PMCID
- PMC4103651
Research on the ethical, legal, and social implications (ELSI) of human genomics has devoted significant attention to the research ethics issues that arise from genomic science as it moves through the translational process. Given the prominence of these issues in today's debates over the state of research ethics overall, these studies are well positioned to contribute important data, contextual considerations, and policy arguments to the wider research ethics community's deliberations, and ultimately to develop a research ethics that can help guide biomedicine's future. In this essay, we illustrate this thesis through an analytic summary of the research presented at the 2011 ELSI Congress, an international meeting of genomics and society researchers. We identify three pivotal factors currently shaping genomic research, its clinical translation, and its societal implications: (1) the increasingly blurred boundary between research and treatment; (2) uncertainty--that is, the indefinite, indeterminate, and incomplete nature of much genomic information and the challenges that arise from making meaning and use of it; and (3) the role of negotiations between multiple scientific and non-scientific stakeholders in setting the priorities for and direction of biomedical research, as it is increasingly conducted "in the public square."
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| Ethical Challenges of Germline Genetic Enhancement. | Macpherson I et al. | — | 2019 | → |
| How Biomedical HIV Prevention Trials Incorporate Behavioral and Social Sciences Research: A Typology of Approaches. | Corneli A et al. | — | 2019 | → |
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| Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications. | Dick DM et al. | — | 2017 | → |
| Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice? | Prince AE et al. | — | 2015 | → |
| Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families. | Fernandez CV et al. | — | 2015 | → |
| Clinical genetic research 3: Genetics ELSI (Ethical, Legal, and Social Issues) research. | Pullman D et al. | — | 2015 | → |
| Outcomes and endpoints in cancer trials: bridging the divide. | Wilson MK et al. | — | 2015 | → |
| Stakeholder Engagement in HIV Cure Research: Lessons Learned from Other HIV Interventions and the Way Forward. | Lo YR et al. | — | 2015 | → |
| The translational potential of research on the ethical, legal, and social implications of genomics. | Burke W et al. | — | 2015 | → |
| Genomic data-sharing: what will be our legacy? | Callier S et al. | — | 2014 | → |
| Genotype-driven recruitment: a strategy whose time has come? | Budin-Ljøsne I et al. | — | 2013 | → |
| Grand challenge: ELSI in a changing global environment. | Greenbaum D | — | 2013 | → |