Literature DB >> 26479567

Considerations for Returning Research Results to Culturally Diverse Participants and Families of Decedents.

Nanibaa A Garrison1.   

Abstract

There has been considerable debate on which genomic research results to return to participants and when those results should be returned, but little attention to how those results should be returned, especially to minority and culturally diverse participants. This paper explores the cultural and ethical considerations around returning research results to participants and families of culturally diverse backgrounds, with a special focus on considerations when the research participant is deceased, and raises points for further discussion.
© 2015 American Society of Law, Medicine & Ethics, Inc.

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Year:  2015        PMID: 26479567      PMCID: PMC4617668          DOI: 10.1111/jlme.12300

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN: 1073-1105            Impact factor:   1.718


  22 in total

1.  The spirit catches you and you fall down: a Hmong child, her American doctors, and the collision of two cultures.

Authors:  D Wear; L L Nixon
Journal:  Acad Med       Date:  2001-06       Impact factor: 6.893

2.  Susceptibility of elderly Asian immigrants to persuasion with respect to participation in research.

Authors:  Doug Brugge; Alison Kole; Weibo Lu; Aviva Must
Journal:  J Immigr Health       Date:  2005-04

3.  Knowledge, group-based medical mistrust, future expectations, and perceived disadvantages of medical genetic testing: perspectives of Black African immigrants/refugees.

Authors:  A Buseh; S Kelber; S Millon-Underwood; P Stevens; L Townsend
Journal:  Public Health Genomics       Date:  2013-12-24       Impact factor: 2.000

4.  Jewish religious practices related to childbearing.

Authors:  D M Bash
Journal:  J Nurse Midwifery       Date:  1980 Sep-Oct

5.  'Even if they ask you to stand by a tree all day, you will have to do it (laughter)...!': community voices on the notion and practice of informed consent for biomedical research in developing countries.

Authors:  C S Molyneux; D R Wassenaar; N Peshu; K Marsh
Journal:  Soc Sci Med       Date:  2005-07       Impact factor: 4.634

6.  Acculturation of attitudes toward end-of-life care: a cross-cultural survey of Japanese Americans and Japanese.

Authors:  Shinji Matsumura; Seiji Bito; Honghu Liu; Katharine Kahn; Shunichi Fukuhara; Marjorie Kagawa-Singer; Neil Wenger
Journal:  J Gen Intern Med       Date:  2002-07       Impact factor: 5.128

7.  Not-so-incidental findings: the ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing.

Authors:  Megan Allyse; Marsha Michie
Journal:  Trends Biotechnol       Date:  2013-05-09       Impact factor: 19.536

8.  Offering aggregate results to participants in genomic research: opportunities and challenges.

Authors:  Laura M Beskow; Wylie Burke; Stephanie M Fullerton; Richard R Sharp
Journal:  Genet Med       Date:  2012-01-26       Impact factor: 8.822

9.  Incidental findings of therapeutic misconception in biobank-based research.

Authors:  Colin M E Halverson; Lainie Friedman Ross
Journal:  Genet Med       Date:  2012-01-26       Impact factor: 8.822

10.  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

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  1 in total

1.  "If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.

Authors:  Deborah R Gordon; Barbara A Koenig
Journal:  New Genet Soc       Date:  2021-12-13
  1 in total

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