Literature DB >> 31496352

Fostering Ethical, Legal, and Social Implications Research in Tribal Communities: The Center for the Ethics of Indigenous Genomic Research.

Vanessa Y Hiratsuka1, Julie A Beans1, Justin Reedy2, Joseph M Yracheta3, Michael T Peercy4, Bobby Saunkeah4, R Brian Woodbury1, Marcia O'Leary3, Paul G Spicer2.   

Abstract

Genomic research raises unique ethical concerns among Alaska Native and American Indian (AN/AI) people and their communities. The Center for the Ethics of Indigenous Genomic Research (CEIGR) was created to foster research that takes these concerns into account while considering the sovereign status of AN/AI tribal nations. Relationships developed within CEIGR have allowed for effective, collaborative research among individuals who come from diverse cultures, political and historical backgrounds, and academic disciplines, and who work for organizations with varying resources, capacities, and expectations. The CEIGR framework may inform other groups seeking to conduct social science research related to genomic research with tribal people and their communities.

Entities:  

Keywords:  Alaska Native; American Indian; ELSI; academic–community partnership; genomic research

Year:  2019        PMID: 31496352      PMCID: PMC7061084          DOI: 10.1177/1556264619872640

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  36 in total

1.  The Havasupai Indian tribe case--lessons for research involving stored biologic samples.

Authors:  Michelle M Mello; Leslie E Wolf
Journal:  N Engl J Med       Date:  2010-06-09       Impact factor: 91.245

2.  Human Genome Project: Twenty-five years of big biology.

Authors:  Eric D Green; James D Watson; Francis S Collins
Journal:  Nature       Date:  2015-10-01       Impact factor: 49.962

3.  Moving forward: breaking the cycle of mistrust between American Indians and researchers.

Authors:  Christina M Pacheco; Sean M Daley; Travis Brown; Melissa Filippi; K Allen Greiner; Christine M Daley
Journal:  Am J Public Health       Date:  2013-10-17       Impact factor: 9.308

Review 4.  The Ethical, Legal, and Social Implications Program of the National Human Genome Research Institute: reflections on an ongoing experiment.

Authors:  Jean E McEwen; Joy T Boyer; Kathie Y Sun; Karen H Rothenberg; Nicole C Lockhart; Mark S Guyer
Journal:  Annu Rev Genomics Hum Genet       Date:  2014-04-24       Impact factor: 8.929

5.  A Research Agenda for Communication Scholars in the Precision Medicine Era.

Authors:  Courtney L Scherr; Marleah Dean; Margaret F Clayton; Bradford W Hesse; Kami Silk; Richard L Street; Janice Krieger
Journal:  J Health Commun       Date:  2017-09-28

6.  Risk, reward, and the double-edged sword: perspectives on pharmacogenetic research and clinical testing among Alaska Native people.

Authors:  Jennifer L Shaw; Renee Robinson; Helene Starks; Wylie Burke; Denise A Dillard
Journal:  Am J Public Health       Date:  2013-10-17       Impact factor: 9.308

7.  Alaska native people's perceptions, understandings, and expectations for research involving biological specimens.

Authors:  Vanessa Y Hiratsuka; Jennifer K Brown; Theresa J Hoeft; Denise A Dillard
Journal:  Int J Circumpolar Health       Date:  2012-05-22       Impact factor: 1.228

8.  Genetic counselors and the future of clinical genomics.

Authors:  Barbara Bernhardt
Journal:  Genome Med       Date:  2014-07-02       Impact factor: 11.117

9.  Self-Determination in Health Research: An Alaska Native Example of Tribal Ownership and Research Regulation.

Authors:  Vanessa Y Hiratsuka; Julie A Beans; Renee F Robinson; Jennifer L Shaw; Ileen Sylvester; Denise A Dillard
Journal:  Int J Environ Res Public Health       Date:  2017-10-31       Impact factor: 3.390

Review 10.  Exploring pathways to trust: a tribal perspective on data sharing.

Authors:  Rosalina James; Rebecca Tsosie; Puneet Sahota; Myra Parker; Denise Dillard; Ileen Sylvester; John Lewis; Joseph Klejka; LeeAnna Muzquiz; Polly Olsen; Ron Whitener; Wylie Burke
Journal:  Genet Med       Date:  2014-05-15       Impact factor: 8.822

View more
  6 in total

Review 1.  Generations of genomes: advances in paleogenomics technology and engagement for Indigenous people of the Americas.

Authors:  Krystal S Tsosie; Rene L Begay; Keolu Fox; Nanibaa' A Garrison
Journal:  Curr Opin Genet Dev       Date:  2020-07-25       Impact factor: 5.578

2.  Being in Good Community: Engagement in Support of Indigenous Sovereignty.

Authors:  Jessica Blanchard; Vanessa Hiratsuka
Journal:  Am J Bioeth       Date:  2021-10       Impact factor: 14.676

3.  Extending Research Protections to Tribal Communities.

Authors:  Bobby Saunkeah; Julie A Beans; Michael T Peercy; Vanessa Y Hiratsuka; Paul Spicer
Journal:  Am J Bioeth       Date:  2021-01-15       Impact factor: 14.676

4.  Community Perspectives on Communicating About Precision Medicine in an Alaska Native Tribal Health Care System.

Authors:  R Brian Woodbury; Julie A Beans; Kyle A Wark; Paul Spicer; Vanessa Y Hiratsuka
Journal:  Front Commun (Lausanne)       Date:  2020-09-25

5.  A set of principles and practical suggestions for equitable fieldwork in biology.

Authors:  Valeria Ramírez-Castañeda; Erin P Westeen; Jeffrey Frederick; Sina Amini; Daniel R Wait; Anang S Achmadi; Noviar Andayani; Evy Arida; Umilaela Arifin; Moisés A Bernal; Elisa Bonaccorso; Marites Bonachita Sanguila; Rafe M Brown; Jing Che; F Peter Condori; Diny Hartiningtias; Anna E Hiller; Djoko T Iskandar; Rosa Alicia Jiménez; Rassim Khelifa; Roberto Márquez; José G Martínez-Fonseca; Juan L Parra; Joshua V Peñalba; Lina Pinto-García; Onja H Razafindratsima; Santiago R Ron; Sara Souza; Jatna Supriatna; Rauri C K Bowie; Carla Cicero; Jimmy A McGuire; Rebecca D Tarvin
Journal:  Proc Natl Acad Sci U S A       Date:  2022-08-16       Impact factor: 12.779

6.  An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation.

Authors:  Vanessa Y Hiratsuka; Julie A Beans; Jessica W Blanchard; Justin Reedy; Erika Blacksher; Justin R Lund; Paul G Spicer
Journal:  PLoS One       Date:  2020-03-16       Impact factor: 3.240

  6 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.