Literature DB >> 24946153

The translational potential of research on the ethical, legal, and social implications of genomics.

Wylie Burke1, Paul Appelbaum2, Lauren Dame3, Patricia Marshall4, Nancy Press5, Reed Pyeritz6, Richard Sharp7, Eric Juengst8.   

Abstract

Federally funded research on the ethical, legal, and social implications (ELSI) of genomics includes a programmatic charge to consider policy-relevant questions and to communicate findings in venues that help inform the policy-making process. In addressing this goal, investigators must consider the range of policies that are relevant to human genetics; how foundational research in bioethics, law, and the social sciences might inform those policies; and the potential professional issues that this translational imperative raises for ELSI investigators. We review these questions in light of experiences from a consortium of federally funded Centers of Excellence in ELSI Research, and offer a set of policy recommendations for program design and evaluation of ELSI research. We conclude that it would be a mistake to require that ELSI research programs demonstrate a direct impact on science or health policy; however, ELSI researchers can take steps to increase the relevance of their work to policy makers. Similarly, funders of ELSI research who are concerned with facilitating policy development can help by building cross-disciplinary translational research capacities, and universities can take steps to make policy-relevant research more rewarding for scholars in the humanities, social sciences, and law.

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Year:  2014        PMID: 24946153      PMCID: PMC4272334          DOI: 10.1038/gim.2014.74

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  46 in total

Review 1.  Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: recommendation statement.

Authors: 
Journal:  Ann Intern Med       Date:  2005-09-06       Impact factor: 25.391

2.  Stewardship practices of U.S. biobanks.

Authors:  Gail E Henderson; Teresa P Edwards; R Jean Cadigan; Arlene M Davis; Catherine Zimmer; Ian Conlon; Bryan J Weiner
Journal:  Sci Transl Med       Date:  2013-12-11       Impact factor: 17.956

3.  What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.

Authors:  Gail E Henderson; Eric T Juengst; Nancy M P King; Kristine Kuczynski; Marsha Michie
Journal:  J Law Med Ethics       Date:  2012       Impact factor: 1.718

4.  Point-counterpoint. Patient autonomy and incidental findings in clinical genomics.

Authors:  Susan M Wolf; George J Annas; Sherman Elias
Journal:  Science       Date:  2013-05-16       Impact factor: 47.728

5.  Research priorities. ELSI 2.0 for genomics and society.

Authors:  Jane Kaye; Eric M Meslin; Bartha M Knoppers; Eric T Juengst; Mylène Deschênes; Anne Cambon-Thomsen; Donald Chalmers; Jantina De Vries; Kelly Edwards; Nils Hoppe; Alastair Kent; Clement Adebamowo; Patricia Marshall; Kazuto Kato
Journal:  Science       Date:  2012-05-11       Impact factor: 47.728

6.  Patients' views on identifiability of samples and informed consent for genetic research.

Authors:  Sara Chandros Hull; Richard R Sharp; Jeffrey R Botkin; Mark Brown; Mark Hughes; Jeremy Sugarman; Debra Schwinn; Pamela Sankar; Dragana Bolcic-Jankovic; Brian R Clarridge; Benjamin S Wilfond
Journal:  Am J Bioeth       Date:  2008-10       Impact factor: 11.229

7.  Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium.

Authors:  Ellen Wright Clayton; Maureen Smith; Stephanie M Fullerton; Wylie Burke; Catherine A McCarty; Barbara A Koenig; Amy L McGuire; Laura M Beskow; Lynn Dressler; Amy A Lemke; Erin M Ramos; Laura Lyman Rodriguez
Journal:  Genet Med       Date:  2010-10       Impact factor: 8.822

8.  Data sharing in the post-genomic world: the experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO).

Authors:  Yann Joly; Edward S Dove; Bartha M Knoppers; Martin Bobrow; Don Chalmers
Journal:  PLoS Comput Biol       Date:  2012-07-12       Impact factor: 4.475

9.  Left to their own devices: Post-ELSI, ethical equipment and the International Genetically Engineered Machine (iGEM) Competition.

Authors:  Andrew S Balmer; Kate J Bulpin
Journal:  Biosocieties       Date:  2013-09

10.  Researchers' views on return of incidental genomic research results: qualitative and quantitative findings.

Authors:  Robert Klitzman; Paul S Appelbaum; Abby Fyer; Josue Martinez; Brigitte Buquez; Julia Wynn; Cameron R Waldman; Jo Phelan; Erik Parens; Wendy K Chung
Journal:  Genet Med       Date:  2013-06-27       Impact factor: 8.822

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  11 in total

Review 1.  Paediatric genomics: diagnosing rare disease in children.

Authors:  Caroline F Wright; David R FitzPatrick; Helen V Firth
Journal:  Nat Rev Genet       Date:  2018-02-05       Impact factor: 53.242

Review 2.  Prenatal Somatic Cell Gene Therapies: Charting a Path Toward Clinical Applications (Proceedings of the CERSI-FDA Meeting).

Authors:  Akos Herzeg; Graça Almeida-Porada; R Alta Charo; Anna L David; Juan Gonzalez-Velez; Nalin Gupta; Larissa Lapteva; Billie Lianoglou; William Peranteau; Christopher Porada; Stephan J Sanders; Teresa N Sparks; David H Stitelman; Evi Struble; Charlotte J Sumner; Tippi C MacKenzie
Journal:  J Clin Pharmacol       Date:  2022-09       Impact factor: 2.860

3.  Is Real-Time ELSI Realistic?

Authors:  John M Conley; Anya E R Prince; Arlene M Davis; Jean Cadigan; Gabriel Lazaro-Munoz
Journal:  AJOB Empir Bioeth       Date:  2020-02-10

4.  Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.

Authors:  Deborah R Gordon; Carmen Radecki Breitkopf; Marguerite Robinson; Wesley O Petersen; Jason S Egginton; Kari G Chaffee; Gloria M Petersen; Susan M Wolf; Barbara A Koenig
Journal:  AJOB Empir Bioeth       Date:  2018-12-31

5.  Challenges and opportunities for ELSI early career researchers.

Authors:  Jessica Bell; Mirko Ancillotti; Victoria Coathup; Sarah Coy; Tessel Rigter; Travis Tatum; Jasjote Grewal; Faruk Berat Akcesme; Jovana Brkić; Anida Causevic-Ramosevac; Goran Milovanovic; Marianna Nobile; Cristiana Pavlidis; Teresa Finlay; Jane Kaye
Journal:  BMC Med Ethics       Date:  2016-07-08       Impact factor: 2.652

6.  Ethical priority of the most actionable system of biomolecules: the metabolome.

Authors:  Cecil M Lewis; Laura-Isobel McCall; Richard R Sharp; Paul G Spicer
Journal:  Am J Phys Anthropol       Date:  2019-10-23       Impact factor: 2.868

7.  Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI).

Authors:  Tania Ascencio-Carbajal; Garbiñe Saruwatari-Zavala; Fernando Navarro-Garcia; Eugenio Frixione
Journal:  BMC Med Ethics       Date:  2021-11-23       Impact factor: 2.652

8.  Fetal therapies and trials for lysosomal storage diseases: a survey of attitudes of parents and patients.

Authors:  Marisa E Schwab; Julia E H Brown; Billie Lianoglou; Chengshi Jin; Patricia C Conroy; Renata C Gallagher; Paul Harmatz; Tippi C MacKenzie
Journal:  Orphanet J Rare Dis       Date:  2022-01-29       Impact factor: 4.123

9.  Anticipating the ethical, legal, and social implications of human genome research: An ongoing experiment.

Authors:  Eric T Juengst
Journal:  Am J Med Genet A       Date:  2021-06-22       Impact factor: 2.802

Review 10.  Four Principles Regarding an Effective Treatment of Aging.

Authors:  Marios Kyriazis
Journal:  Curr Aging Sci       Date:  2018
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