Responsible and Ethical Conduct of Research with Ethnocultural Populations Joseph E. Trimble, PhD Center for Cross-Cultu

1. Responsible and Ethical Conduct of Research with Ethnocultural Populations Joseph E. Trimble, PhD Center for Cross-Cultural Research Department of Psychology Western Washington University

2. Theme • “Never look for a psychological explanation unless every effort to find a cultural one has been exhausted.” • - Margaret Mead (1959, p. 16) quoting William Fielding Ogburn, one of her mentors at Columbia University

3. The Tuskegee Syphilis Experiment Peter Buxtun, a former Public Health Service employee. Tuskegee Institute

5. Truths, Half-Truths in Cross-Cultural Psychology • Darkness in El Dorado: How Scientists and Journalists Devastated the Amazon • Patrick Tierney (2001) • The Ax Fight • Timothy Asch & Napoleon • Chagnon (1989)

6. Where does one set the limits on research involving human subjects?

7. A sample of community concerns and problems with researchers expressed by a variety of ethnic minority community members… • People have been persuaded to participate in research in which they did not fully understand the nature of the risks and benefits; Research was conducted which did not respect the basic human dignity of the individual participants or their religious and cultural beliefs; • Researchers have been interested in our people as an ‘isolated’ or ‘pure’ gene pool to be used for laboratory purposes, demeaning the dignity of the people and the community;

8. A sample of community concerns and problems with researchers expressed by a variety of ethnic minority community members… • Researchers have taken cultural information out of context and, have published conclusions that were factually incorrect; Researchers have sensationalized community, family, and individual problems and released publications heedless of their impact on our community’s legitimate political and social interests; • Despite promises that research would benefit our community, researchers have failed or refused to follow through on promised benefits; and • Researchers have failed to respect cultural beliefs and practices of our community in their research methods. (*adapted from American Indian Law Center, 1999)

9. Ethical Considerations and Responsibilitiesto the Population Under Study* • Attention must be given to avoid actions, procedures, interactive styles, etc. that violate local customs and cultural understandings of the community. • Sensitivity and attention should be given to the cultural ethos and eidos of the community in every phase of the research. (*adapted from Tapp, Kelman, Triandis, Wrightsman, & Coelho, 1974)

10. Ethical Considerations and Responsibilitiesto the Population Under Study (Continue) • Research efforts should take all steps to insure informed consent and to avoid invasion of privacy. Concept of consent, confidentiality, and volunteerism may have to be phrased in the context of the culture of the community.

11. Ethical Considerations and Responsibilitiesto the Population Under Study (Continue) • The research should not have, as a latent agenda, the transmission of information or the modification of attitudes and behavior unless the agenda is consistent with the project’s goals.

12. Ecology of Lives Approach* • Ecosystems approaches call for “principled cultural sensitivity,” a sensitivity based on respect for whom research and interventions are intended and which would prohibit interventions that violate cultural norms. • The goal of research and intervention is community development where the project is constructed in such a way that it becomes a resource to the community. Unless one cares about how lives are led locally such a goal would be difficult if not impossible to achieve. ` (Trickett, Kelly, & Vincent, 1985)

13. Ecology of Lives Approach (Continue) • Emphasis placed on the importance of culture as an historical and contemporary aspect of the framework within which individuals appraise their situation and their options. • Focus on the community context as the stage within which individual behavior occurs.

14. Ecology of Lives Approach (Continue) • A focus on the ecology of lives approach and designing research and interventions at the community level suggest a long term commitment to the locale as part of the process. “One-shot” or “safari” approaches to community based research would be discouraged including the low probability that such an approach would leave a positive residual after the project ends or the grant money runs out.

15. The “Goodness of Fit” Model • The Model advocates “doing good well” where the researcher and the team are virtuous people who embody values and beliefs that the community finds acceptable. • The Model views scientist and participant alike as moral agents joined in a partnership • (after Fisher & Ragsdale, 2005)

16. The “Goodness of Fit” Model (Continue) • To accomplish a partnership one should ask: • What are the special life circumstances that render participants more susceptible to research risk? • Which aspects of the design, implementation, or dissemination may create or exacerbate research risk? • How can research and ethical procedures be fitted to participant characteristics to reduce vulnerability?

17. The “Goodness of Fit” Model (Continue) • The Model moves multicultural ethics further by posing the following value based questions: • Do the values embodied in current codes and regulations reflect the moral visions of different ethnocultural groups selected for a study? • Do scientists and participants have different conceptions of research risks and benefits?

18. The Virtuous and Responsible Researcher • Virtue ethics involves our whole way of living where good and bad are viewed as personal qualities. • “To be a virtuous researcher one must be self-regulatory and self-reflective and at the same time abide by ‘normative’ professional ethics” (Maera & Day, 2003).

19. The Virtuous and Responsible Researcher • Virtuous characteristics: • Prudence • Integrity • Respectfulness • Benevolence • Reverence • Trustworthiness (after Maera & Day, 2003; Richardson, 2003; Woodruff, 2003)

20. Relational Methodology Carol Gilligan (1982; 2003) - one component of morality is that people have responsibilities towards others; a truly moral person must care for the welfare and dignity of others. The nurturance of a responsible relationship will influence what people tell you; the deeper and more felt the relationship the greater the likelihood that one will tell you what they “really think” -- and that is the essence of relational methodology.

21. Guidelines for Indigenous Populations

22. Guidelines for Indigenous Populations “Ms Erica-Irene Daes, Chairperson-Rapporteur of the United Nations Working Group of Indigenous Populations, remarked that: ‘Heritage can never be alienated, surrendered or sold, except for conditional use. Sharing therefore creates a relationship between the givers and receivers of knowledge. The givers retain the authority to ensure that knowledge is used properly and the receivers continue to recognize and repay the gift.’ At every stage, research with and about Indigenous peoples must be founded on a process of meaningful engagement and reciprocity between the researcher and the Indigenous people. (AIATSIS, 2000. Guidelines for Ethical Research in Indigenous Studies. Canberra, Australia.)

23. “Indigenous peoples defend their cultural property” “By focusing on the complexity of actual cases, Brown casts light on indigenous claims in diverse fields--religion, art, sacred places, and botanical knowledge. He finds both genuine injustice and, among advocates for native peoples, a troubling tendency to mimic the privatizing logic of major corporations.”

24. The Voices of the People “I had this feeling of being violated and betrayed, then I went into shock, and then I got angry….and then I went into denial. I thought, ‘oh well they don’t know who I am. I was just a research subject.’ After I participated in the study, I had no idea or didn’t even realize what all it was going to entail in the future. And then I come to find out that all the results have been ‘shared’ through journal articles and publications. The realization for me was ‘Oh my god, I’ve been abused and violated because I had no idea that they would talk about us like that. Now we’ve been labeled like we’re just a bunch of people walking around with diseases on reservations’” (Casillas, 2006, p. 73).

25. The Voices of the People Descendants of some of the participants in the Tuskegee Syphilis Experiment said: ''I'm angry about it, very, very angry about it,'' said Carmen Head, whose grandfather, Freddie Lee Tyson, participated in the study. ''It's a painful issue in my family.'' ''It was something to be ashamed of, so it wasn't talked about,'' said Mrs. Lillie Head, whose father was one of the participants. She said that, 'we were really very disturbed after we found out my father was a part of it’''. “You get treated like lepers,” said Albert Julkes, whose father was a participant. “People think it’s the scourge of the earth to have it in your family.” He goes on to say, “It was one of the worse atrocities ever reaped on people by the Government. You don’t treat dogs that way” (Toon, 1997, p. 1).

26. “The principle that underlies problems of ethics is respecting the humanity of others as one would have others respect one’s own. If field (researchers) genuinely feel such respect for others, they are not likely to get into serious trouble. But if they do not feel such respect, then no matter how scrupulously they follow the letter of the written codes of professional ethics, or follow the recommended procedures of field (research) manuals, they will betray themselves all along the line in the little things…” - Ward H. Goodenough (1980, p. 52)

27. Responsible and Ethical Conduct of Research with Ethnocultural Populations Joseph E. Trimble, PhD Center for Cross-Cultural Research Department of Psychology Western Washington University