What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.
paper
Cited
Public
- 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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| # | Section | Preview |
|---|---|---|
| 40 | (3) Negotiating Genomics in the Public Square16 | Differences in what research subjects want and expect and what researchers are prepared to provide,… |
| 41 | (3) Negotiating Genomics in the Public Square16 | Research reports that illustrate this cross-cutting theme at the ELSI Congress can be clustered into… |
| 42 | (3) Negotiating Genomics in the Public Square16 — (a) Negotiating Genomics’ Orienting Goals | In the promotional rhetoric of the scientific community, the success of much translational genomics… |
| 43 | (3) Negotiating Genomics in the Public Square16 — (a) Negotiating Genomics’ Orienting Goals | One way this challenge was illuminated at the ELSI Congress was by explorations of benefit sharing… |
| 44 | (3) Negotiating Genomics in the Public Square16 — (a) Negotiating Genomics’ Orienting Goals | For clinicians, health care institutions, and research participants, defining the goals of… |
| 45 | (3) Negotiating Genomics in the Public Square16 — (a) Negotiating Genomics’ Orienting Goals | views of the acceptability of newly available cancer genetic risk assessment technologies among… |
| 46 | (3) Negotiating Genomics in the Public Square16 — (b) Negotiating the Driving Hypotheses of Translational Genomic Research | Proponents of genomic medicine assume that the best way to improve health care is to understand… |
| 47 | (3) Negotiating Genomics in the Public Square16 — (b) Negotiating the Driving Hypotheses of Translational Genomic Research | Genomic research has encountered and intensified social and political uncertainties for some… |
| 48 | (3) Negotiating Genomics in the Public Square16 — (b) Negotiating the Driving Hypotheses of Translational Genomic Research | While the Latino community has historically been poorly represented in biomedical research, recent… |
| 49 | (3) Negotiating Genomics in the Public Square16 — (b) Negotiating the Driving Hypotheses of Translational Genomic Research | In this respect, assumptions about what should count as legitimate risks for genome research also… |
| 50 | (3) Negotiating Genomics in the Public Square16 — (c) Negotiating Procurement Methods in Translational Genomic Research | Translational genomic research capable of illuminating genomic variation and gene expression in ways… |
| 51 | (3) Negotiating Genomics in the Public Square16 — (c) Negotiating Procurement Methods in Translational Genomic Research | As a result, ELSI researchers are devoting significant effort to empirical studies of attitudes and… |
| 52 | (3) Negotiating Genomics in the Public Square16 — (c) Negotiating Procurement Methods in Translational Genomic Research | Nowhere are these ethical and practical questions more contentious than in pediatric biobanking.… |
| 53 | (3) Negotiating Genomics in the Public Square16 — (c) Negotiating Procurement Methods in Translational Genomic Research | types of samples are collected immediately after childbirth, a context in which informed consent is… |
| 54 | (3) Negotiating Genomics in the Public Square16 — (d) Negotiating Genomics’ Social Contract | Finally, translational genomic research takes place within a framework of moral norms, professional… |
| 55 | (3) Negotiating Genomics in the Public Square16 — (d) Negotiating Genomics’ Social Contract | For example, one of the distinctive norms of basic genome research has been a commitment to broad… |
| 56 | (3) Negotiating Genomics in the Public Square16 — (d) Negotiating Genomics’ Social Contract | of credit for breakthrough discoveries, which is crucial for career advancement and future funding… |
| 57 | (3) Negotiating Genomics in the Public Square16 — (d) Negotiating Genomics’ Social Contract | But if genomic data are to be shared, the governance of this “commons” must be decided. ELSI… |
| 58 | (3) Negotiating Genomics in the Public Square16 — (d) Negotiating Genomics’ Social Contract | Another major topic of negotiation in the conduct of genomic research is how best to respect the… |
| 59 | (3) Negotiating Genomics in the Public Square16 — (d) Negotiating Genomics’ Social Contract | Similarly, panels at the ELSI Congress suggested various approaches to addressing the issues raised… |
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|---|---|---|
| Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications. | 2017 | 28240821 |
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| 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 | → |