Literature DB >> 20208312

Genetic research in native communities.

Lorrieann Santos1.   

Abstract

People are living longer because of advances made through biomedical research. The challenge in genetic research on indigenous peoples is that it raises a complex range of legal, ethical, social, spiritual, and political issues. The current research paradigm is one of paternalism and biocolonialism. Such was the case of the Havasupai, who believed their blood samples were to be solely used for their collective benefit and well-being, and Native Hawaiians, who are opposed to genetically modified taro. Pertinent questions that should be considered before conducting research with and amongst Native communities include:* Is there informed consent or the need for re-consent?* Is cultural knowledge respected?* Are indigenous beliefs, values, and practices taken into account?* Is there potential for group harm?* Is there accountability to community?Establishing a community Institutional Review Board may be the most effective means toward achieving equal and ethical treatment in population/group-based research. Research should be about ethically rigorous processes and effectively tailored interventions that address community needs, interests, and values.

Entities:  

Mesh:

Year:  2008        PMID: 20208312      PMCID: PMC2862689          DOI: 10.1353/cpr.0.0046

Source DB:  PubMed          Journal:  Prog Community Health Partnersh        ISSN: 1557-0541


  8 in total

Review 1.  Participatory research maximises community and lay involvement. North American Primary Care Research Group.

Authors:  A C Macaulay; L E Commanda; W L Freeman; N Gibson; M L McCabe; C M Robbins; P L Twohig
Journal:  BMJ       Date:  1999-09-18

2.  When two tribes go to war.

Authors:  Rex Dalton
Journal:  Nature       Date:  2004-07-29       Impact factor: 49.962

3.  Tribal culture versus genetics.

Authors: 
Journal:  Nature       Date:  2004-07-29       Impact factor: 49.962

4.  Lessons learned from community-based participatory research in Indian country.

Authors:  Linda Burhansstipanov; Suzanne Christopher; Sister Ann Schumacher
Journal:  Cancer Control       Date:  2005-11       Impact factor: 3.302

5.  Ethical dilemmas in community-based participatory research: recommendations for institutional review boards.

Authors:  Sarah Flicker; Robb Travers; Adrian Guta; Sean McDonald; Aileen Meagher
Journal:  J Urban Health       Date:  2007-07       Impact factor: 3.671

6.  The patentability of the Native Hawaiian genome.

Authors:  Lindsey Singeo
Journal:  Am J Law Med       Date:  2007

7.  Participatory research in a Native Hawaiian community. The Wai'anae Cancer Research Project.

Authors:  D S Matsunaga; R Enos; C C Gotay; R O Banner; H DeCambra; O W Hammond; N Hedlund; E K Ilaban; B F Issell; J A Tsark
Journal:  Cancer       Date:  1996-10-01       Impact factor: 6.860

8.  Genetic research and the vulnerability of Native Hawaiians.

Authors:  R M Chang; P H Lowenthal
Journal:  Pac Health Dialog       Date:  2001-09
  8 in total
  24 in total

1.  Native Hawaiian views on biobanking.

Authors:  Maile Tauali i; Elise Leimomi Davis; Kathryn L Braun; JoAnn Umilani Tsark; Ngiare Brown; Maui Hudson; Wylie Burke
Journal:  J Cancer Educ       Date:  2014-09       Impact factor: 2.037

2.  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

3.  Community dissemination and genetic research: moving beyond results reporting.

Authors:  Susan Brown Trinidad; Evette J Ludman; Scarlett Hopkins; Rosalina D James; Theresa J Hoeft; Annie Kinegak; Henry Lupie; Ralph Kinegak; Bert B Boyer; Wylie Burke
Journal:  Am J Med Genet A       Date:  2015-04-21       Impact factor: 2.802

4.  Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research.

Authors:  Nanibaa' A Garrison
Journal:  Sci Technol Human Values       Date:  2012-12-21

Review 5.  An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.

Authors:  Jaclyn Aramoana; Jonathan Koea
Journal:  J Glob Oncol       Date:  2019-03

6.  Seeing Beyond the Margins: Challenges to Informed Inclusion of Vulnerable Populations in Research.

Authors:  Sarah Gehlert; Jessica Mozersky
Journal:  J Law Med Ethics       Date:  2018-03-27       Impact factor: 1.718

7.  Balancing community and university aims in community-based participatory research: a Pacific Islander youth study.

Authors:  Sora Park Tanjasiri; Lenny Wiersma; Greta Briand; Vaka Faletau; Jonathan Lepule; Lianne Nacpil; Jan Eichenauer
Journal:  Prog Community Health Partnersh       Date:  2011

8.  American Indian/Alaska Native willingness to provide biological samples for research purposes.

Authors:  Melissa K Filippi; Kristin L Young; Niaman Nazir; Chandler Williams; Travis Brown; Won S Choi; K A Greiner; Christine M Daley
Journal:  J Community Health       Date:  2012-06

Review 9.  An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.

Authors:  Jaclyn Aramoana; Jonathan Koea
Journal:  JCO Glob Oncol       Date:  2019-03-07

10.  Ethics and Community Involvement in Syntheses Concerning American Indian, Alaska Native, or Native Hawaiian Health: A Systematic Review.

Authors:  Matthew O Gribble; Deana M Around Him
Journal:  AJOB Empir Bioeth       Date:  2014-01-01
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