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

R. C. Green et al. for the American College of Medical Genetics and Genomics, “ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome sequencing,” Genetics in Medicine 15, no. 7 (2013): 565–574; Allyse M. Michie M. , “Not-So-Incidental Findings: The ACMG Recommendations on the Reporting of Incidental Findings in Clinical Whole Genome and Whole Exome Sequencing,” Trends in Biotechnololgy 31, no. 8 (2013): 439–441; Burke W. , “Recommendations for Returning Genomic Incidental Findings? We Need to Talk!” Genetics in Medicine 15, no. 11 (2013): 854–859.

Brothers K. B. , “Practical Guidance on Informed Consent for Pediatric Participants in a Biorepository,” Mayo Clinic Proceedings 89, no. 11 (2014): 1471–1480.

United States National Commission for the Protection of Human Subjects of Biomedical Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (1978), at Appendix, no. 2, available at <http://hhs.gov/ohrp/humansubjects/guidance/belmont.html> (last visited April 17, 2015).

Molyneux C. S. , “‘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,” Social Science & Medicine 61, no. 2 (2005): 443–54.

Arambula Solomon T. G. Randall L. L. , Conducting Health Research with Native American Communities (Washington, D.C.: American Public Health Association, 2014): at 203.

Brugge D. , “Susceptibility of Elderly Asian Immigrants to Persuasion with Respect to Participation in Research,” Journal of Immigrant Health 7, no. 2 (2005): 93–101.

Bowman K. W. Singer P. A. , “Chinese Seniors' Perspectives on End-of-Life Decisions,” Social Science & Medicine 53, no. 4 (2001): 455–464.

Matsumura S. , “Acculturation of Attitudes Toward End-of-Life Care: A Cross-Cultural Survey of Japanese Americans and Japanese,” Journal of General Internal Medicine 17, no. 7 (2002): 531–539.

Blackhall L. J. , “Ethnicity and Attitudes toward Patient Autonomy,” JAMA 274, no. 10 (1995): 820–825.

Kwak J. Haley W. E. , “Current Research Findings on End-of-Life Decision Making among Racially or Ethnically Diverse Groups,” Gerontologist 45, no. 5 (2005): 634–641.

Schwede L. , Complex Ethnic Households in America (Maryland: Rowman & Littlefield Publishers, 2005): at 74.

Reardon J. , Race to the Finish: Identity and Governance in an Age of Genomics (New Jersey: Princeton University Press, 2009): At 98–125.

Mello M. Wolf L. , “The Havasupai Indian Tribe Case—Lessons for Research Involving Stored Biologic Samples,” New England Journal of Medicine 363, no. 3 (2010): 204–207.

Jonsen A. R. Siegler M. Winslade W. J. , Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine (United States: The McGraw-Hill Companies, 2010): at 87.

Buchanan A. E. Brock D. W. , Deciding for Others: The Ethics of Surrogate Decision Making (United Kingdom: Cambridge University Press, 1990): At 136–138.

Fadiman A. , The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures (New York: Farrar, Straus and Giroux, 1997): At 70–71.

Klein L. F. Ackerman L. A. , Women and Power in Native North America (Norman: University of Oklahoma Press, 1995): At 12–14.

Hamilton S. , The Two-Headed Household: Gender and Rural Development in the Ecuadorean Andes (Pittsburgh: University of Pittsburgh Press, 1998): At 92–98.

Hiratsuka V. Y. , “Alaska Native People's Perceptions, Understandings, and Expectations for Research Involving Biological Specimens,” International Journal of Circumpolar Health 71, no. 18642 (2012), available at <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3417706/> (last visited August 17, 2015).

Buseh A. , “Knowledge, Group-Based Medical Mistrust, Future Expectations, and Perceived Disadvantages of Medical Genetic Testing: Perspectives of Black African Immigrants/Refugees,” Public Health Genomics 17, no. 1 (2014): 33–42.

R. James et al., for the Kiana Group, “Exploring Pathways to Trust: A Tribal Perspective on Data Sharing,” Genetics in Medicine 16, no. 11 (2014): 820–826; Beskow L. M. , “Offering Aggregate Results to Participants in Genomic Research: Opportunities and Challenges,” Genetics in Medicine 14, no. 4 (2012): 490–496.

Halverson C. M. Ross L. F. , “Incidental Findings of Therapeutic Misconception in Biobank-Based Research,” Genetics in Medicine 14, no. 6 (2012): 611–615.

Jarvik G. P. , “Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices in Between,” American Journal of Human Genetics 94, no. 6 (2014): 818–826.

Milner L. C. , “Relationships Matter: Ethical Considerations for Returning Results to Family Members of Deceased Subjects,” American Journal of Bioethics 13, no. 10 (2013): 66–67.

Cline S. , Lifting the Taboo: Women, Death and Dying (United Kingdom: Little, Brown Book Group Limited., 1995): At 62.

Cruz Begay R. , “Navajo Birth: A Bridge Between the Past and the Future,” in Selin H. Stone P. , eds., Childbirth across Cultures (Netherlands: Springer, 2009): At 245–254.

Bash D. M. , “Jewish Religious Practices Related to Childbearing,” Journal of Nurse-Midwifery 25, no. 5 (1980): 39–42.

Arviso L. A. Van Pelt E. C. , The Scalpel and the Silver Bear: The First Navajo Woman Surgeon Combines Western Medicine and Traditional Healing (New York: Bantam Books, 1999): At 66.

Diatz B. , “With Poem, Broaching the Topic of Death,” New York Times, January 24, 2011, available at <http://www.nytimes.com/2011/01/25/health/25navajo.html> (last visited August 17, 2015).

Sahota P. C. , “Body Fragmentation: Native American Community Members' Views on Specimen Disposition in Biomedical/Genetics Research,” AJOB Empirical Bioethics 5, no. 3 (2014): 19–30.

See Cline , supra note 26.

See Diatz , supra note 30.

Green R. C. Berg J. S. Grody W. W. , “ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing,” Genetics in Medicine 15, no. 7 (2013): 565–574.

American College of Medical and Genetics. “ACMG Updates Recommendation on ‘Opt Out’ for Genome Sequencing Return of Results” (2014), available at <https://www.acmg.net/docs/Release_ACMGUpdatesRecommendations_final.pdf> (last visited August 17, 2015).

Harmon A. , “Indian Tribe Wins Fight to Limit Research of Its DNA,” New York Times, April 22, 2010, available at <http://www.nytimes.com/2010/04/22/us/22dna.html> (last visited April 17, 2015).

Wiwchar D. , “Nuu-Chah-Nulth Blood Returns to West Coast,” Ha-Shilth-Sa Newspaper (2004): 1–3; Dalton R. , “Tribe Blasts ‘Exploitation’ of Blood Samples,” Nature 420, no. 6912 (2002): 111.

Petit C. , “Trying to Study Tribes While Respecting Their Cultures: Hopi Indian Geneticist Can See Both Sides,” SFGate.com (1998), available at <http://www.sfgate.com/news/article/Trying-to-Study-Tribes-While-Respecting-Their-3012825.php> (lasted visited August 17, 2015).

See Sahota , supra note 30.