Public willingness to participate in and public opinions about genetic variation research: a review of the literature
- PMID: 17018829
- PMCID: PMC1751820
- DOI: 10.2105/AJPH.2005.069286
Public willingness to participate in and public opinions about genetic variation research: a review of the literature
Abstract
Scientists are turning to genetic variation research in hopes of addressing persistent racial/ethnic disparities in health. Despite ongoing controversy, the advancement of genetic variation research is likely to produce new knowledge and technologies that will substantially change the ways in which we understand and value health. They also may affect the ways in which individuals and groups organize socially, politically, and economically. Addressing concerns that may exist in different communities is vital to the scientific and ethical advancement of genetic variation research. We review empirical studies of public willingness to participate in and opinions about genetic research with particular attention to differences in consent and opinion by racial/ethnic group membership.
Similar articles
-
On the prevalence of population groups in the human-genetics research literature.Politics Life Sci. 2004 Mar;23(1):34-41. doi: 10.2990/1471-5457(2004)23[34:OTPOPG]2.0.CO;2. Epub 2005 Apr 25. Politics Life Sci. 2004. PMID: 16859378
-
The racial genetics paradox in biomedical research and public health.Public Health Rep. 2002 Sep-Oct;117(5):421-5. doi: 10.1093/phr/117.5.421. Public Health Rep. 2002. PMID: 12500957 Free PMC article. No abstract available.
-
The Harvard case of Xu Xiping: exploitation of the people, scientific advance, or genetic theft?New Genet Soc. 2005 Apr;24(1):57-78. doi: 10.1080/14636770500037776. New Genet Soc. 2005. PMID: 16552917
-
Racial, cultural, and ethnic factors influencing end-of-life care.J Palliat Med. 2005;8 Suppl 1:S58-69. doi: 10.1089/jpm.2005.8.s-58. J Palliat Med. 2005. PMID: 16499470 Review.
-
The use of racial, ethnic, and ancestral categories in human genetics research.Am J Hum Genet. 2005 Oct;77(4):519-32. doi: 10.1086/491747. Epub 2005 Aug 29. Am J Hum Genet. 2005. PMID: 16175499 Free PMC article. Review.
Cited by
-
Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.J Genet Couns. 2023 Apr;32(2):435-461. doi: 10.1002/jgc4.1653. Epub 2023 Jan 16. J Genet Couns. 2023. PMID: 36644818 Free PMC article.
-
Barriers and facilitators to recruitment to a culturally-based dietary intervention among urban Hispanic breast cancer survivors.J Racial Ethn Health Disparities. 2015 Jun;2(2):244-55. doi: 10.1007/s40615-014-0076-5. Epub 2014 Dec 10. J Racial Ethn Health Disparities. 2015. PMID: 26557471 Free PMC article. Clinical Trial.
-
Understanding participation by African Americans in cancer genetics research.J Natl Med Assoc. 2012 Jul-Aug;104(7-8):324-30. doi: 10.1016/s0027-9684(15)30172-3. J Natl Med Assoc. 2012. PMID: 23092046 Free PMC article.
-
Leaves imitate trees: Minnesota Hmong concepts of heredity and applications to genomics research.J Community Genet. 2017 Jan;8(1):23-34. doi: 10.1007/s12687-016-0284-2. Epub 2016 Nov 7. J Community Genet. 2017. PMID: 27822876 Free PMC article.
-
Understanding Participation in Genetic Research Among Patients With Multiple Sclerosis: The Influences of Ethnicity, Gender, Education, and Age.Front Genet. 2020 Mar 13;11:120. doi: 10.3389/fgene.2020.00120. eCollection 2020. Front Genet. 2020. PMID: 32231680 Free PMC article.
References
-
- Khoury MJ, Burke W, Thomson EJ. Genetics and public health: a framework for the integration of human genetics into public health practice. In: Khoury MJ, Burke W, Thomson EJ, eds. Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease. New York, NY: Oxford University Press; 2000:3–23.
-
- Wang VO, Sue S. In the eye of the storm: race and genomics in research and practice. Am Psychol. 2005;60: 37–45. - PubMed
-
- Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: Institute of Medicine, National Academies Press; 2003. - PubMed
-
- Xie HG, Kim R, Wood A, Stein C. Molecular basis of ethnic differences in drug disposition and response. Annu Rev Pharmacol Toxicol. 2001;41: 815–850. - PubMed
-
- Risch N, Burchard E, Ziv E, Tang H. Categorization of humans in biomedical research: genes, race, and disease. Genome Biol. 2002;3(7): comment 2007. Epub 2002 Jul 1. Available at: http://genomebiology.com/2002/3/7/comment/2007. Accessed July 26, 2006. - PMC - PubMed
Publication types
MeSH terms
Grants and funding
LinkOut - more resources
Full Text Sources