Skip to main content
SpringerLink
Log in

Diverse Perceptions of the Informed Consent Process: Implications for the Recruitment and Participation of Diverse Communities in the National Children’s Study

  • Original Paper
  • Published:
American Journal of Community Psychology

Abstract

We examined the experiences, perceptions, and values that are brought to bear when individuals from different ethnic and cultural backgrounds consider participating in health research. Fifty-three women from Latino, Asian American, Middle Eastern, or Non-Latino, White backgrounds participated in seven English or Spanish focus groups facilitated by trained investigators using a standard protocol. Investigators described the National Children’s Study (NCS) and then asked questions to elicit potential concerns, expectations, and informational needs. Group sessions were audio-recorded, transcribed verbatim, and analyzed using qualitative thematic methods. A major theme that emerged during focus groups was participant self-identification as a member of a cultural group or community when raising issues that would influence their decision to participate in research. A related theme was the belief by some that communities may differ in the ease of participation in the NCS. Identified themes related to the informed consent process included perceived risks, anticipated burden, perceived benefits, informational needs, and decision-making strategies. Although themes were shared across groups, there were cultural differences within themes. Findings indicated that individuals from diverse backgrounds may have different perspectives on and expectations for the research process. To effectively recruit representative samples, it will be important to address a range of issues relevant for informed consent and to consider the impact of participation on both individuals and communities.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Ayers, L., Kavanaugh, K., & Knafl, K. A. (2003). Within-case and across-case approaches to qualitative data analysis. Qualitative Health Research, 13(6), 871–883.

    Article  Google Scholar 

  • Bandura, A. (2002). Social cognitive theory in cultural context. Applied Psychology: An International Review, 51, 269–290.

    Article  Google Scholar 

  • Barata, P. C., Gucciardi, E., Ahmad, F., & Stewart, D. E. (2006). Cross-cultural perspectives on research participation and informed consent. Social Science and Medicine, 62, 479–490.

    Article  PubMed  Google Scholar 

  • Barrera, M., Castro, F. G., & Steiker, L. K. H. (2011). A critical analysis of approaches to the development of preventive interventions for subcultural groups. American Journal of Community Psychology, published online January, 4, 2011.

    Google Scholar 

  • Beskow, L. M., Burke, W., Merz, J. F., Barr, P. A., Terry, S., Penchaszadeh, V. B., et al. (2001). Informed consent for population-based research involving genetics. JAMA, 286, 2315–2321.

    Article  PubMed  Google Scholar 

  • Bhutta, Z. A. (2004). Beyond informed consent. Bulletin of the World Health Organization, 82, 771–778.

    PubMed  Google Scholar 

  • Bogdan, R. C., & Biklen, S. K. (1998). Qualitative research for education: An introduction to theory and methods (3rd ed.). Boston, MA: Allyn & Bacon.

    Google Scholar 

  • Boholm, A. (2003). The cultural nature of risk: Can there be an anthropology of uncertainty? Ethnos, 68, 159–178.

    Article  Google Scholar 

  • Buchtel, E. E., & Norenzayan, A. (2008). Which should you use, intuition or logic? Cultural differences in injunction norms about reasoning. Asian Journal of Social Psychology, 11, 264–273.

    Article  Google Scholar 

  • Cohen, A. B. (2009). Many forms of culture. American Psychologist, 64, 194–204.

    Article  PubMed  Google Scholar 

  • Crabtree, B. F., & Miller, W. L. (1999). Using codes and code manuals: A template organizing style of interpretation. In B. F. Crabtree & W. L. Miller (Eds.), Doing qualitative research (2nd ed., pp. 163–178). Thousand Oaks, CA: Sage.

    Google Scholar 

  • Culture Clash on Consent [Editorial] (2010) Nature Neuroscience, 13, 777.

  • Dawson, L., & Kass, N. E. (2005). Views of US researchers about informed consent in international collaborative research. Social Science and Medicine, 61, 1211–1222.

    Article  PubMed  Google Scholar 

  • Di Maggio, P. (1997). Culture and cognition. Annual Review of Sociology, 23, 263–287.

    Article  Google Scholar 

  • Dixon-Woods, M., Ashcroft, R. E., Jackson, C. J., Tobin, M. D., Kivits, J., Burton, P. R., & Samani, N. J. (2007) Beyond “misunderstanding”: Written information and decisions about taking part in a genetic epidemiological study. Social Science & Medicine, 65, 2212–2222.

    Google Scholar 

  • Fearon, J. D. (2003). Ethnic and cultural diversity by country. Journal of Economic Growth, 8, 195–222.

    Article  Google Scholar 

  • Fern, E. F. (2001). Advanced focus group research. Thousand Oaks, CA: Sage.

    Google Scholar 

  • Flicker, S., Travers, R., Guta, A., McDonald, S., & Meagher, A. (2007). Ethical dilemmas in community-based participatory research: Recommendations for institutional review boards. Journal of Urban Health: Bulletin the New York Academy of Medicine, 84, 478–493.

    Google Scholar 

  • Godard, B., Marshall, J., LaBerge, C., & Knoppers, B. M. (2004). Strategies for consulting with the community: The cases of four large-scale genetic databases. Science and Engineering Ethics, 10, 457–477.

    Article  PubMed  Google Scholar 

  • Harmon, A. (2010). Indian tribe wins fight to limit research of its DNA. New York Times, April, 21, 2010.

    Google Scholar 

  • Havasupai Tribe v Arizona Board of Regents and Therese Ann Markow, No. 1 CA-CV 07-0454, No. 1 CA-CV 07-0801 (Consolidated), (State of Arizona Court of Appeals, Novermber 28, 2008).

  • Hill, C. E., Thompson, B. J., & Marshall, E. N. (1997). A guide to conducting consensual qualitative research. The Counseling Psychologist, 25, 517–572.

    Article  Google Scholar 

  • Hornikx, J., & Hoeken, H. (2007). Cultural differences in the persuasiveness of evidence types and evidence quality. Communication Monographs, 74, 443–463.

    Article  Google Scholar 

  • Hsieh, H., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288.

    Article  PubMed  Google Scholar 

  • James, R. D., Yu, J., Henrikson, N. B., Bowen, D. J., & Fullerton, S. M. (2008). Strategies and stakeholders: Minority recruitment in cancer genetics research. Community Genetics, 11(4), 241–249.

    Article  PubMed  Google Scholar 

  • Jenkins, A. (2010). Applied roles and the future of community psychology. American Journal of Community Psychology, 45, 68–72.

    Article  PubMed  Google Scholar 

  • Kamenstein, D. S. (1996). Persuasion in a toxic community: Rhetorical aspects of public meetings. Human Organization, 55(4), 458–464.

    Google Scholar 

  • King, N. (1998). Template analysis. In G. Symon & C. Cassell (Eds.), Qualitative methods and analysis in organizational research: A practical Guide (118–134). Thousand Oaks, CA: Sage.

    Google Scholar 

  • Kral, M. J., Garcia, J. I. R., Aber, M. S., Masood, N., Dutta, U., & Todd, N. R. (2011). Culture and community psychology: Toward a renewed and reimagined vision. American Journal of Community Psychology, 47, 46–57.

    Article  PubMed  Google Scholar 

  • Kreuter, M. W., & Haughton, L. T. (2006). Integrating culture into health information for African American women. American Behavioral Scientist, 49, 794–811.

    Article  Google Scholar 

  • Kreuter, M. W., & McClure, S. M. (2004). The role of culture in health communication. Annual Review of Public Health, 25, 439–455.

    Article  PubMed  Google Scholar 

  • Lakes, K., Lopez, S. R., & Garro, L. C. (2006). Cultural competence and psychotherapy: Applying anthropologically informed conceptions of culture. Psychotherapy: Theory, Research, Practice, Training, 43, 380–396.

    Article  Google Scholar 

  • Legal Notes (2010) After Havasupai litigation, Native Americans wary of genetic research. American Journal of Medical Genetics Part A, 152A, ix. Retrieved October 13, 2010 at http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.33592/pdf.

  • Lehman, D. R., Chiu, C., & Schaller, M. (2004). Psychology and culture. Annual Review of Psychology, 55, 689–714.

    Article  PubMed  Google Scholar 

  • Levy, D., Splansky, G. L., Strand, N. K., Atwood, L. D., Benjamin, E. J., et al. (2010). Consent for genetic research in the Framington Heart Study. American Journal of Genetic Studies, 152, 1250–1256.

    Article  Google Scholar 

  • Marshall, P. A. (2006). Informed consent in international health research. Journal of Empirical Research on Human Research Ethics, 3, 25–42.

    Article  Google Scholar 

  • Mello, M. M., & Wolf, L. E. (2010). The Havasupai Indian tribe case: Lessons for research involving stored biologic samples. New England Journal of Medicine, 363, 204–207.

    Article  PubMed  Google Scholar 

  • Morgan, D. L. (1998). The focus group guidebook. Thousand Oaks, CA: Sage.

    Google Scholar 

  • Munsterhjelm, M., & Gilbert, F (2010) How do researcher duties conflict with Aboriginal rights? Genetics research and biobank problems in Taiwan. Retrieved January 15, 2011 from http://www.dilemata.net/revista/index.php/dilemata/article/viewFile/53/67.

  • Murphy, E. J., Wickramaratne, P., & Weissman, M. M. (2009). Racial and ethnic differences in willingness to participate in psychiatric genetic research. Psychiatric Genetics, 19, 186–194.

    Article  PubMed  Google Scholar 

  • Nisbett, R. E., Peng, K., Choi, I., & Norenzayan, A. (2001). Culture and systems of thought: Holistic versus analytic cognition. Psychological Review, 108, 291–310.

    Article  PubMed  Google Scholar 

  • Rivera, R., Borasky, D., Rice, R., Carayon, F., & Wong, E. (2007). Informed consent: An international researchers’ perspective. American Journal of Public Health, 97, 25–30.

    Article  PubMed  Google Scholar 

  • Ross, L. F., Loup, A., Nelson, R. M., Botkin, J. R., Kost, R., Smith, G., et al. (2010). Human subject protections in community-engaged research: A research ethics framework. Journal of Empirical Research on Human Research Ethics, 5, 5–17.

    Article  PubMed  Google Scholar 

  • Rotimi, C. N., & Marshall, P. A. (2010). Tailoring the process of informed consent in genetic and genomic research. Genomic Medicine, 2, 20–24.

    Article  Google Scholar 

  • Sterling, R., Henderson, G. E., & Corbie-Smith, G. (2006). Public willingness to participate in and public opinions about genetic variation research: A review of the literature. American Journal of Public Health, 96(11), 1971–1978.

    Article  PubMed  Google Scholar 

  • Stewart, D. W., Shamdasani, P. N., & Rook, D. W. (2007). Focus groups: Theory and practice (2nd ed.). Thousand Oaks, CA: Sage.

    Google Scholar 

  • Tebes, J. K. (2010). Community psychology, diversity, and the many forms of culture. American Psychologist, 65, 58–59.

    Article  PubMed  Google Scholar 

  • Thorne, B. (1980). “You still takin’ notes?” Fieldwork and problems of informed consent. Social Problems, 27, 284–297.

    Article  Google Scholar 

  • Triandis, H. C. (2000). Culture and conflict. International Journal of Psychology, 35, 145–152.

    Article  Google Scholar 

  • Trickett, E. J. (2009). Community psychology: Individuals and interventions in community context. Annual Review of Psychology, 60, 395–419.

    Article  PubMed  Google Scholar 

  • Trinidad, S. B., Fullerton, S. M., Bares, J. M., Jarvik, G. P., Larson, E. B., & Burke, W. (2010). Genomic research and wide data sharing: Views of prospective participants. Genetic Medicine, 12, 495.

    Article  Google Scholar 

  • U.S. Census Bureau (2010) State and county quickfacts: Orange County, California. Retrieved November 30, 2010 from http://quickfacts.census.gov/qfd/states/06/06059.html.

  • U.S. Code of Federal Regulations, (2009). Protection of human subjects. Revised Title 45, Part 46. U.S. Department of Health and Human Services. Accessed Aug 1, 2010.

  • Vaughan, E., & Tinker, t. (2009). Effective health risk communication about pandemic influenza for vulnerable populations. American Journal of Public Health, 99, S324–S332.

    Article  PubMed  Google Scholar 

  • Weber, E. U., & Hsee, C. K. (2000). Culture and individual judgment and decision making. Applied Psychology: An International Review, 49, 32–61.

    Google Scholar 

  • Woodsong, C., & Karim, Q. A. (2005). A model designed to enhance informed consent: Experiences from the HIV prevention trials network. American Journal of Public Health, 95, 412–441.

    Article  PubMed  Google Scholar 

  • Yick, A. G. (2007). Role of culture and context: Ethical issues in research with Asian Americans and immigrants in intimate violence. Journal of Family Violence, 22, 277–285.

    Article  Google Scholar 

Download references

Acknowledgments

Funding for this study was provided through the Orange County Vanguard Center National Children’s Study contract # NIH-NICHD-HHSN275200503415C awarded by NICHD to the University of California, Irvine. The content is solely the responsibility of the authors and does not necessarily represent the official views of the United States Government.

Author information

Authors and Affiliations

  1. Department of Pediatrics, University of California, Irvine, 101 Academy Way, Suite 150, Irvine, CA, 92617, USA

    Kimberley D. Lakes, Marissa Jones & James M. Swanson

  2. Department of Psychology and Social Behavior, University of California, Irvine, 101 Academy Way, Suite 150, Irvine, CA, 92617, USA

    Elaine Vaughan

  3. Department of Bioethics and Humanities, University of Washington, Seattle, WA, USA

    Wylie Burke

  4. Center for Occupational and Environmental Health, University of California, Irvine, 5201 California Avenue, Suite 100, Irvine, CA, 92617, USA

    Dean Baker

Authors
  1. Kimberley D. Lakes
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Elaine Vaughan
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Marissa Jones
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Wylie Burke
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Dean Baker
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. James M. Swanson
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Kimberley D. Lakes.

Additional information

This research was performed in conjunction with the National Children’s Study, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Lakes, K.D., Vaughan, E., Jones, M. et al. Diverse Perceptions of the Informed Consent Process: Implications for the Recruitment and Participation of Diverse Communities in the National Children’s Study. Am J Community Psychol 49, 215–232 (2012). https://doi.org/10.1007/s10464-011-9450-1

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10464-011-9450-1

Keywords

Search

Navigation