Literature DB >> 34465167

The Ethics of Consent in a Shifting Genomic Ecosystem.

Sandra Soo-Jin Lee1.   

Abstract

The collection and use of human genetic data raise important ethical questions about how to balance individual autonomy and privacy with the potential for public good. The proliferation of local, national, and international efforts to collect genetic data and create linkages to support large-scale initiatives in precision medicine and the learning health system creates new demands for broad data sharing that involve managing competing interests and careful consideration of what constitutes appropriate ethical trade-offs. This review describes these emerging ethical issues with a focus on approaches to consent and issues related to justice in the shifting genomic research ecosystem.

Entities:  

Keywords:  consent; data sharing; ethics; genetics; human subjects protections; learning health system

Mesh:

Year:  2021        PMID: 34465167      PMCID: PMC8683157          DOI: 10.1146/annurev-biodatasci-030221-125715

Source DB:  PubMed          Journal:  Annu Rev Biomed Data Sci        ISSN: 2574-3414


  56 in total

1.  Building trust in the power of "big data" research to serve the public good.

Authors:  Eric B Larson
Journal:  JAMA       Date:  2013-06-19       Impact factor: 56.272

2.  Large-scale GWAS reveals insights into the genetic architecture of same-sex sexual behavior.

Authors:  Andrea Ganna; Karin J H Verweij; John R B Perry; Benjamin M Neale; Brendan P Zietsch; Michel G Nivard; Robert Maier; Robbee Wedow; Alexander S Busch; Abdel Abdellaoui; Shengru Guo; J Fah Sathirapongsasuti; Paul Lichtenstein; Sebastian Lundström; Niklas Långström; Adam Auton; Kathleen Mullan Harris; Gary W Beecham; Eden R Martin; Alan R Sanders
Journal:  Science       Date:  2019-08-30       Impact factor: 47.728

Review 3.  Clinical use of current polygenic risk scores may exacerbate health disparities.

Authors:  Alicia R Martin; Masahiro Kanai; Yoichiro Kamatani; Yukinori Okada; Benjamin M Neale; Mark J Daly
Journal:  Nat Genet       Date:  2019-03-29       Impact factor: 38.330

4.  Genomics is failing on diversity.

Authors:  Alice B Popejoy; Stephanie M Fullerton
Journal:  Nature       Date:  2016-10-13       Impact factor: 49.962

5.  Genetics, eugenics, and the Immigration Restriction Act of 1924.

Authors:  K M Ludmerer
Journal:  Bull Hist Med       Date:  1972 Jan-Feb       Impact factor: 1.314

Review 6.  Informed consent and other ethical issues in human population genetics.

Authors:  H T Greely
Journal:  Annu Rev Genet       Date:  2001       Impact factor: 16.830

7.  Genetic ancestry testing among white nationalists: From identity repair to citizen science.

Authors:  Aaron Panofsky; Joan Donovan
Journal:  Soc Stud Sci       Date:  2019-07-02       Impact factor: 3.885

8.  Broad Consent for Research With Biological Samples: Workshop Conclusions.

Authors:  Christine Grady; Lisa Eckstein; Ben Berkman; Dan Brock; Robert Cook-Deegan; Stephanie M Fullerton; Hank Greely; Mats G Hansson; Sara Hull; Scott Kim; Bernie Lo; Rebecca Pentz; Laura Rodriguez; Carol Weil; Benjamin S Wilfond; David Wendler
Journal:  Am J Bioeth       Date:  2015       Impact factor: 11.229

9.  Metaphors matter: from biobank to a library of medical information.

Authors:  Mildred K Cho; Nina Varsava; Stephanie A Kraft; Gary Ashwal; Katie Gillespie; David Magnus; Kelly E Ormond; Alex Thomas; Benjamin S Wilfond; Sandra S-J Lee
Journal:  Genet Med       Date:  2017-12-21       Impact factor: 8.822

10.  A population-based approach for implementing change from opt-out to opt-in research permissions.

Authors:  Elizabeth A Marshall; Jim C Oates; Azza Shoaibi; Jihad S Obeid; Melissa L Habrat; Robert W Warren; Kathleen T Brady; Leslie A Lenert
Journal:  PLoS One       Date:  2017-04-25       Impact factor: 3.240

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