Issues in Mental Health Nursing, 35:489–491, 2014 Copyright © 2014 Informa Healthcare USA, Inc. ISSN: 0161-2840 print / 1096-4673 online DOI: 10.3109/01612840.2013.846445
CULTURAL COMPETENCE COLUMN
The Culture of Research: “No I’m Not Gonna be No Guinea Pig for All of That” Rebekah J. Salt, PhD, RN University of Texas Health Science Center, School of Nursing, San Antonio, Texas, USA
Noel J. Chrisman, PhD, MPH University of Washington, School of Nursing, Seattle, Washington, USA
Edited by Jacquelyn H. Flaskerud, RN, PhD, FAAN University of California—Los Angeles, School of Nursing, Los Angeles, California, USA Agencies such as the World Health Organization, the Commission on Social Determinants of Health, and the Robert Wood Johnson Foundation are challenging researchers to focus attention on social determinants of health at the community level. Community-based research can be time intensive because establishing and sustaining partnerships is an essential element of the work. Trust is a critical component of community-based work (Israel, Eng, Schulz, & Parker, 2013); yet, historically mismanaged research has created mistrust of researchers and contributed to multicultural historical trauma. Historical trauma has been defined as the “cumulative emotional and psychological wounding, over the lifespan and across generations, emanating from massive group trauma experiences” (Brave Heart, 2003, p. 7). In previous issues of this journal, authors have addressed racial/minority mistrust and the historic events that have contributed to researcher stigma. Flaskerud (2008) explored the question of ethnic/racial matching of researcher to participants; Tullmann and Flaskerud (2009) addressed barriers to recruitment; and DeLilly (2012) discussed how multiple levels of racism continue to create health disparities and contribute to poor health outcomes. Despite access to programs and literature designed to educate researchers on ethical conduct, historical trauma, and cultural awareness/sensitivity, the recruitment of racial/minority participants can be complicated. As a doctoral nursing student, I was introduced to research ethics, racism, and white privilege in the classroom environment Address correspondence to Rebekah J. Salt, School of Nursing, University of Texas at San Antonio, 7703 Floyd Curl Drive, Mail Code 7951, San Antonio, TX 78229-3900 USA. E-mail: [email protected]
and gained additional knowledge through informal academic conversations. Although the information was both beneficial and impressionable, it did not prepare me for exposure to the power and ramification of historical trauma in my first research study. My work has a qualitative focus and targets the employment link of social determinants of health, specifically exploring the experiences of women participating in US microcredit programs. These programs, most often associated with 2006 Nobel Peace Prize recipient, Dr. Muhammad Yunus, provide access to resources and build capacity through small loans and resources to start income-generating businesses. Microcredit loans create opportunities for self-employment for priority populations unable to access traditional funding, and their popularity has steadily grown worldwide. The purpose of this article is to share a participant’s comments, my subsequent actions, and how that comment served as a catalyst for self-reflection regarding my future role as a community-based researcher.
BACKGROUND The study took place in 2006 with an established US microcredit organization located in a large Pacific Northwest city. The organization had been disbursing microcredit loans since 1997 to low-income clientele; the majority of them are women. Repayment rates were reported at 98%, unheard of in traditional lending organizations. In addition to loans, the organization provided social and educational resources via mentorship, classes, networking, and social support. In this particular program, clientele borrowed loans individually, but were required to join groups and regularly meet at the organization. As I was using an ethnographic approach for the study, I spent six months observing interactions in these groups while simultaneously recruiting women for individual interviews. During the recruitment phase, an African American woman repeatedly expressed interest in the study yet never came forward to schedule an interview. After a study closing date was announced, the woman
489
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took me aside and consented to talk. When I inquired about her decision to finally agree to interview, her response was: Okay [you’re] not the wicked witch . . . cause so many times, people come in just to do this, get all that stuff and go back to the program and report all their surveys and statistics to the government. I’m like, “No, I’m not gonna be no guinea pig for all of that.”
Intellectually I knew about historical trauma and researcher mistrust, yet her response surprised me on multiple levels. As a community health nurse and proponent of community-based participatory research (CBPR), I understood the importance of culture and history when building a partnership. As a nurse researcher, I was diligent about compliance regarding ethics and participant protection. As a student, I had spent many, sometimes painful, hours immersed in White Privilege: Unpacking the Invisible Knapsack (McIntosh, 1989), reflecting on my position as a middle class, privileged white woman in order to better understand my place in the research community (Tyson, 2007). This woman and I talked about her choice of the term “guinea pig” as it conjured up visions of human experimentation. She introduced the topic of unethical research and I realized that I had totally underestimated the power of the past and its impact on recruitment. Revisiting the following well-publicized cases within the context of our conversation led to my reflection on historical trauma and how I choose to position myself within the culture of research. HISTORICAL TRAUMA AND RESEARCH Historically, institutionalized racism and racial discrimination against ethnic minorities have created stigma and are manifested in the health disparities and the poor health outcomes that we see today (DeLilly, 2012). From 1932 to 1972, the US Public Health Service collaborated with the Tuskegee Institute in Alabama to conduct a study to better understand the disease history of syphilis in African American males. With minimal facts, 600 African American men (399 with syphilis, 201 without the disease) participated in and progressed through the study and were never given adequate treatment despite the fact that by 1945 penicillin was shown to be an effective drug for the disease. Consequently, a class-action lawsuit was filed, followed by a $10 million dollar out-of-court settlement for participants and their families. The Tuskegee Study of Untreated Syphilis evolved into one of the most publicized ethical misconduct cases of the twentieth century. In 1997, President Clinton publically apologized to the families and, in 2004, the last study participant died (Centers for Disease Control and Prevention, n.d.). The mistrust that stemmed from historical events still exists between African Americans and researchers as many African Americans believe that information about the research is being withheld from participants (Scharff, Mathews, Jackson, Hoffsuemmer, Martin, & Edwards, 2010). In 1951, 30-year-old Henrietta Lacks received radium treatments at Johns Hopkins Hospital for an aggressive cervical cancer. During the procedure, her physician removed a tumor
sample without her consent. Henrietta Lacks died later that year, but her cells, labeled HeLa were the first cells to grow outside the body. It wasn’t until nearly two decades later that the family was informed that (1) these cells had been harvested, and (2) they were still being used to advance science—without the knowledge of the family. Upon finding out, Henrietta Lack’s daughter stated, “Why didn’t they just ask if they could use her cells?” (Skloot, 2001, para 4). On August 7, 2013, the National Institutes of Health announced that it had reached an agreement with the Lacks family (two of whom have been placed on a committee that reviews and approves the research) to allow biomedical researchers controlled access to HeLa cells and how the genome is used (The New York Times, 2013). It is well known that historical documents such as The Nuremberg Code of 1946, the 1964 Declaration of Helsinki, and the 1979 Belmont Report, were created to promote the ethical principles of respect, beneficence, and justice with the purpose of creating a culture of social justice and preventing research misconduct with participants. Despite the implementation of policies that provide guidelines to create a culture of responsible researchers, ethical infractions still occur. In 2004, the Havasupai Indian tribe filed a $50 million lawsuit against Arizona State University (ASU). The lawsuit alleged that blood samples, taken for what the tribe understood to be a 1990 genetic research study focusing on diabetes, were used and shared with other investigators for multiple studies unrelated to diabetes. In 2010, ASU apologized and agreed to pay 41 Havasupai tribe members $700,000, return the remaining blood samples, and collaborate with the tribe on health and education issues and economic development (Mello & Wolf, 2010). The situation was unfortunate for both parties. For the American Indian community, a colonized people who once controlled the continent and with less than 600 remaining nations (Davis & Reid, 1999), the Havasupai debacle reopened historical wounds. For community researchers, it was a step backward in public trust and left the reputation of the research community once again tainted. As the interview with the participant in my study came to a close, I further inquired as to the reason why the participant finally consented to an interview despite her misgivings. She said that she had observed me for five months and noted that I was: (1) on-time; (2) prepared for every meeting; and (3) respectful of both her surroundings and the group members. Separately, these observations may have been insignificant, but together they meant something to this African American entrepreneur and contributed to a level of trust that led her to participate. An important element of CBPR focuses on trust in community partnerships. Israel and colleagues (2013) highlight the following as ways to “display trustworthiness” (p. 79). First, create an environment of respect for all opinions and ideas. Second, maintain confidentiality of members; and finally, follow through on commitments. Once the findings from the study were analyzed, results shared with the organization, and the study closed, I vowed to follow through with this community
CULTURAL COMPETENCE
as I couldn’t bear to contribute to my participant’s negative perception of researchers. BUILDING TRUST THROUGH DISSEMINATION In early 2008, during my post-doctoral appointment, I contacted the organization to discuss ways to translate the research findings into something tangible for the community. The findings from the study revealed that many microcredit clienteles did not have health insurance. This could pose a problem because without coverage, illness had the potential to cause financial crisis, loan default, and destruction of an entrepreneurial dream. In addition, although the women were knowledgeable about their health care needs and resources, they often faced time constraints that prevented them from seeking health care. During my conversations, the clientele voiced interest in (1) learning more about health insurance companies and options for coverage; and (2) receiving a comprehensive health resource brochure. Over the next six months, I collaborated with the organization to produce two documents. The first was a notebook with health insurance options for small businesses that included group rates, coverage particulars, and individual premiums, and the second was a health brochure we entitled Investing in Health, which was comprised of local health resources. I met with the executive director and she commented that the entire process had been positive and that the organization and clientele had strongly benefited. I left feeling that it was I who had benefited more. LESSONS LEARNED I consider the interaction with my research participant to be one of the most powerful experiences that transpired for me as a doctoral student. The lessons generated from that one conversation are consistent with what other community researchers have found and continue to influence how I conduct research. As a result, the following tenets guide how I teach, create study designs, and navigate my community partnerships. First, the needs of the community should be as important to the researcher as the research agenda. Additionally, the researcher should acknowledge and strive to understand the culture of the community; always consider the impact of historical trauma as it represents past realities and informs community participation; be present in the community and not only listen to, but also hear, what members have to say; and demonstrate true partnership by disseminating study findings back to the community. FINAL THOUGHTS Unfortunately, priority populations who may be experiencing the highest levels of health disparities participate the least in research studies (Scharff et al., 2010). It is well-documented that misconduct in clinical research where human beings were harmed has had strong racial and social implications and has contributed to a general mistrust of health science researchers.
491
Therefore, consideration of historical trauma and barriers to recruitment of minorities should be explored when designing the recruitment phase of a study as infractions can be costly on so many levels. Finally, the lack of the dissemination of results to the community has been identified as a contributor to researcher mistrust (Christopher, Watts, McCormick, & Young, 2008). Therefore, dissemination of results and follow-through to show trustworthiness should be incorporated into study design. Historical trauma is powerful. The past informs the present and the present guides the future. Behaviors that reinforce stereotypes and generate risk for participants can affect attitudes and perceptions of trust and introduce barriers to research participation (Scharff et al., 2010). As community-based researchers, may our guiding principle always be one of respect and trust for our valued community partners. Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper. REFERENCES Brave Heart, M. Y. H. (2003). The historical trauma response among Natives and its relationship to substance abuse: A Lakota illustration. Journal of Psychoactive Drugs, 35(1), 7–13. Centers for Disease Control and Prevention. (no date). U.S. public health service syphilis study at Tuskegee. The Tuskegee timeline. Retrieved from http://www.cdc.gov/tuskegee/timeline.htm Christopher, S., Watts, V., McCormick, A. K., & Young S. (2008). Building and maintaining trust in a community-based participatory research partnership. American Journal of Public Health, 98(8), 1398–1406. Davis, S. M., & Reid, R. (1999). Practicing participatory research in American Indian communities. The American Journal of Clinical Nutrition, 69(suppl), 755S–759S. DeLilly, D. R. (2012). Discrimination and health outcomes. Issues in Mental Health Nursing, 33(11), 801–804. Flaskerud, J. H. (2008). Who has the right? And who has the responsibility? Issues in Mental Health Nursing, 29, 85–87. Israel, B. A., Eng, E., Schulz, A. J., & Parker, E. A. (Eds.). (2013). Methods in community-based participatory research for health (2nd ed.). San Francisco, CA: Jossey-Bass. McIntosh, P. (1989, July/August). White privilege: Unpacking the invisible knapsack. Peace and Freedom, 9–10. Retrieved from http://www.library.wisc. edu/EDVRC/docs/public/pdfs/LIReadings/InvisibleKnapsack.pdf 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(3), 204–207. The New York Times. (2013, August 7). Science. A family consents to a medical gift, 62 years later. Retrieved from http://www.nytimes.com/2013/ 08/08/science/after-decades-of-research-henrietta-lacks-family-is-asked-forconsent.html?pagewanted=all Scharff, D. P., Mathews, K. J., Jackson, P., Hoffsuemmer, J., Martin, E., & Edwards, D. (2010). More than Tuskegee: Understanding mistrust about research participation. Journal of Health Care for the Poor and Underserved, 21, 879–897. Skloot, R. (2001, November 17). Cells that save lives are a mother’s legacy. The New York Times. Retrieved from http:// www.glyndwr.ac.uk/ bartlett/modules/ForensicBiology1/DNA%20technology/HeLaCellLine.pdf Tullmann, D. F., & Flaskerud, J. H. (2009). Aftershocks of Tuskegee? Issues in Mental Health Nursing, 30, 131–132. Tyson, S. Y. (2007). Can cultural competence be achieved without attending to racism? Issues in Mental Health Nursing, 28(12), 1341–1344.
Copyright of Issues in Mental Health Nursing is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
CULTURAL COMPETENCE COLUMN
The Culture of Research: “No I’m Not Gonna be No Guinea Pig for All of That” Rebekah J. Salt, PhD, RN University of Texas Health Science Center, School of Nursing, San Antonio, Texas, USA
Noel J. Chrisman, PhD, MPH University of Washington, School of Nursing, Seattle, Washington, USA
Edited by Jacquelyn H. Flaskerud, RN, PhD, FAAN University of California—Los Angeles, School of Nursing, Los Angeles, California, USA Agencies such as the World Health Organization, the Commission on Social Determinants of Health, and the Robert Wood Johnson Foundation are challenging researchers to focus attention on social determinants of health at the community level. Community-based research can be time intensive because establishing and sustaining partnerships is an essential element of the work. Trust is a critical component of community-based work (Israel, Eng, Schulz, & Parker, 2013); yet, historically mismanaged research has created mistrust of researchers and contributed to multicultural historical trauma. Historical trauma has been defined as the “cumulative emotional and psychological wounding, over the lifespan and across generations, emanating from massive group trauma experiences” (Brave Heart, 2003, p. 7). In previous issues of this journal, authors have addressed racial/minority mistrust and the historic events that have contributed to researcher stigma. Flaskerud (2008) explored the question of ethnic/racial matching of researcher to participants; Tullmann and Flaskerud (2009) addressed barriers to recruitment; and DeLilly (2012) discussed how multiple levels of racism continue to create health disparities and contribute to poor health outcomes. Despite access to programs and literature designed to educate researchers on ethical conduct, historical trauma, and cultural awareness/sensitivity, the recruitment of racial/minority participants can be complicated. As a doctoral nursing student, I was introduced to research ethics, racism, and white privilege in the classroom environment Address correspondence to Rebekah J. Salt, School of Nursing, University of Texas at San Antonio, 7703 Floyd Curl Drive, Mail Code 7951, San Antonio, TX 78229-3900 USA. E-mail: [email protected]
and gained additional knowledge through informal academic conversations. Although the information was both beneficial and impressionable, it did not prepare me for exposure to the power and ramification of historical trauma in my first research study. My work has a qualitative focus and targets the employment link of social determinants of health, specifically exploring the experiences of women participating in US microcredit programs. These programs, most often associated with 2006 Nobel Peace Prize recipient, Dr. Muhammad Yunus, provide access to resources and build capacity through small loans and resources to start income-generating businesses. Microcredit loans create opportunities for self-employment for priority populations unable to access traditional funding, and their popularity has steadily grown worldwide. The purpose of this article is to share a participant’s comments, my subsequent actions, and how that comment served as a catalyst for self-reflection regarding my future role as a community-based researcher.
BACKGROUND The study took place in 2006 with an established US microcredit organization located in a large Pacific Northwest city. The organization had been disbursing microcredit loans since 1997 to low-income clientele; the majority of them are women. Repayment rates were reported at 98%, unheard of in traditional lending organizations. In addition to loans, the organization provided social and educational resources via mentorship, classes, networking, and social support. In this particular program, clientele borrowed loans individually, but were required to join groups and regularly meet at the organization. As I was using an ethnographic approach for the study, I spent six months observing interactions in these groups while simultaneously recruiting women for individual interviews. During the recruitment phase, an African American woman repeatedly expressed interest in the study yet never came forward to schedule an interview. After a study closing date was announced, the woman
489
490
R. J. SALT AND N. J. CHRISMAN
took me aside and consented to talk. When I inquired about her decision to finally agree to interview, her response was: Okay [you’re] not the wicked witch . . . cause so many times, people come in just to do this, get all that stuff and go back to the program and report all their surveys and statistics to the government. I’m like, “No, I’m not gonna be no guinea pig for all of that.”
Intellectually I knew about historical trauma and researcher mistrust, yet her response surprised me on multiple levels. As a community health nurse and proponent of community-based participatory research (CBPR), I understood the importance of culture and history when building a partnership. As a nurse researcher, I was diligent about compliance regarding ethics and participant protection. As a student, I had spent many, sometimes painful, hours immersed in White Privilege: Unpacking the Invisible Knapsack (McIntosh, 1989), reflecting on my position as a middle class, privileged white woman in order to better understand my place in the research community (Tyson, 2007). This woman and I talked about her choice of the term “guinea pig” as it conjured up visions of human experimentation. She introduced the topic of unethical research and I realized that I had totally underestimated the power of the past and its impact on recruitment. Revisiting the following well-publicized cases within the context of our conversation led to my reflection on historical trauma and how I choose to position myself within the culture of research. HISTORICAL TRAUMA AND RESEARCH Historically, institutionalized racism and racial discrimination against ethnic minorities have created stigma and are manifested in the health disparities and the poor health outcomes that we see today (DeLilly, 2012). From 1932 to 1972, the US Public Health Service collaborated with the Tuskegee Institute in Alabama to conduct a study to better understand the disease history of syphilis in African American males. With minimal facts, 600 African American men (399 with syphilis, 201 without the disease) participated in and progressed through the study and were never given adequate treatment despite the fact that by 1945 penicillin was shown to be an effective drug for the disease. Consequently, a class-action lawsuit was filed, followed by a $10 million dollar out-of-court settlement for participants and their families. The Tuskegee Study of Untreated Syphilis evolved into one of the most publicized ethical misconduct cases of the twentieth century. In 1997, President Clinton publically apologized to the families and, in 2004, the last study participant died (Centers for Disease Control and Prevention, n.d.). The mistrust that stemmed from historical events still exists between African Americans and researchers as many African Americans believe that information about the research is being withheld from participants (Scharff, Mathews, Jackson, Hoffsuemmer, Martin, & Edwards, 2010). In 1951, 30-year-old Henrietta Lacks received radium treatments at Johns Hopkins Hospital for an aggressive cervical cancer. During the procedure, her physician removed a tumor
sample without her consent. Henrietta Lacks died later that year, but her cells, labeled HeLa were the first cells to grow outside the body. It wasn’t until nearly two decades later that the family was informed that (1) these cells had been harvested, and (2) they were still being used to advance science—without the knowledge of the family. Upon finding out, Henrietta Lack’s daughter stated, “Why didn’t they just ask if they could use her cells?” (Skloot, 2001, para 4). On August 7, 2013, the National Institutes of Health announced that it had reached an agreement with the Lacks family (two of whom have been placed on a committee that reviews and approves the research) to allow biomedical researchers controlled access to HeLa cells and how the genome is used (The New York Times, 2013). It is well known that historical documents such as The Nuremberg Code of 1946, the 1964 Declaration of Helsinki, and the 1979 Belmont Report, were created to promote the ethical principles of respect, beneficence, and justice with the purpose of creating a culture of social justice and preventing research misconduct with participants. Despite the implementation of policies that provide guidelines to create a culture of responsible researchers, ethical infractions still occur. In 2004, the Havasupai Indian tribe filed a $50 million lawsuit against Arizona State University (ASU). The lawsuit alleged that blood samples, taken for what the tribe understood to be a 1990 genetic research study focusing on diabetes, were used and shared with other investigators for multiple studies unrelated to diabetes. In 2010, ASU apologized and agreed to pay 41 Havasupai tribe members $700,000, return the remaining blood samples, and collaborate with the tribe on health and education issues and economic development (Mello & Wolf, 2010). The situation was unfortunate for both parties. For the American Indian community, a colonized people who once controlled the continent and with less than 600 remaining nations (Davis & Reid, 1999), the Havasupai debacle reopened historical wounds. For community researchers, it was a step backward in public trust and left the reputation of the research community once again tainted. As the interview with the participant in my study came to a close, I further inquired as to the reason why the participant finally consented to an interview despite her misgivings. She said that she had observed me for five months and noted that I was: (1) on-time; (2) prepared for every meeting; and (3) respectful of both her surroundings and the group members. Separately, these observations may have been insignificant, but together they meant something to this African American entrepreneur and contributed to a level of trust that led her to participate. An important element of CBPR focuses on trust in community partnerships. Israel and colleagues (2013) highlight the following as ways to “display trustworthiness” (p. 79). First, create an environment of respect for all opinions and ideas. Second, maintain confidentiality of members; and finally, follow through on commitments. Once the findings from the study were analyzed, results shared with the organization, and the study closed, I vowed to follow through with this community
CULTURAL COMPETENCE
as I couldn’t bear to contribute to my participant’s negative perception of researchers. BUILDING TRUST THROUGH DISSEMINATION In early 2008, during my post-doctoral appointment, I contacted the organization to discuss ways to translate the research findings into something tangible for the community. The findings from the study revealed that many microcredit clienteles did not have health insurance. This could pose a problem because without coverage, illness had the potential to cause financial crisis, loan default, and destruction of an entrepreneurial dream. In addition, although the women were knowledgeable about their health care needs and resources, they often faced time constraints that prevented them from seeking health care. During my conversations, the clientele voiced interest in (1) learning more about health insurance companies and options for coverage; and (2) receiving a comprehensive health resource brochure. Over the next six months, I collaborated with the organization to produce two documents. The first was a notebook with health insurance options for small businesses that included group rates, coverage particulars, and individual premiums, and the second was a health brochure we entitled Investing in Health, which was comprised of local health resources. I met with the executive director and she commented that the entire process had been positive and that the organization and clientele had strongly benefited. I left feeling that it was I who had benefited more. LESSONS LEARNED I consider the interaction with my research participant to be one of the most powerful experiences that transpired for me as a doctoral student. The lessons generated from that one conversation are consistent with what other community researchers have found and continue to influence how I conduct research. As a result, the following tenets guide how I teach, create study designs, and navigate my community partnerships. First, the needs of the community should be as important to the researcher as the research agenda. Additionally, the researcher should acknowledge and strive to understand the culture of the community; always consider the impact of historical trauma as it represents past realities and informs community participation; be present in the community and not only listen to, but also hear, what members have to say; and demonstrate true partnership by disseminating study findings back to the community. FINAL THOUGHTS Unfortunately, priority populations who may be experiencing the highest levels of health disparities participate the least in research studies (Scharff et al., 2010). It is well-documented that misconduct in clinical research where human beings were harmed has had strong racial and social implications and has contributed to a general mistrust of health science researchers.
491
Therefore, consideration of historical trauma and barriers to recruitment of minorities should be explored when designing the recruitment phase of a study as infractions can be costly on so many levels. Finally, the lack of the dissemination of results to the community has been identified as a contributor to researcher mistrust (Christopher, Watts, McCormick, & Young, 2008). Therefore, dissemination of results and follow-through to show trustworthiness should be incorporated into study design. Historical trauma is powerful. The past informs the present and the present guides the future. Behaviors that reinforce stereotypes and generate risk for participants can affect attitudes and perceptions of trust and introduce barriers to research participation (Scharff et al., 2010). As community-based researchers, may our guiding principle always be one of respect and trust for our valued community partners. Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper. REFERENCES Brave Heart, M. Y. H. (2003). The historical trauma response among Natives and its relationship to substance abuse: A Lakota illustration. Journal of Psychoactive Drugs, 35(1), 7–13. Centers for Disease Control and Prevention. (no date). U.S. public health service syphilis study at Tuskegee. The Tuskegee timeline. Retrieved from http://www.cdc.gov/tuskegee/timeline.htm Christopher, S., Watts, V., McCormick, A. K., & Young S. (2008). Building and maintaining trust in a community-based participatory research partnership. American Journal of Public Health, 98(8), 1398–1406. Davis, S. M., & Reid, R. (1999). Practicing participatory research in American Indian communities. The American Journal of Clinical Nutrition, 69(suppl), 755S–759S. DeLilly, D. R. (2012). Discrimination and health outcomes. Issues in Mental Health Nursing, 33(11), 801–804. Flaskerud, J. H. (2008). Who has the right? And who has the responsibility? Issues in Mental Health Nursing, 29, 85–87. Israel, B. A., Eng, E., Schulz, A. J., & Parker, E. A. (Eds.). (2013). Methods in community-based participatory research for health (2nd ed.). San Francisco, CA: Jossey-Bass. McIntosh, P. (1989, July/August). White privilege: Unpacking the invisible knapsack. Peace and Freedom, 9–10. Retrieved from http://www.library.wisc. edu/EDVRC/docs/public/pdfs/LIReadings/InvisibleKnapsack.pdf 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(3), 204–207. The New York Times. (2013, August 7). Science. A family consents to a medical gift, 62 years later. Retrieved from http://www.nytimes.com/2013/ 08/08/science/after-decades-of-research-henrietta-lacks-family-is-asked-forconsent.html?pagewanted=all Scharff, D. P., Mathews, K. J., Jackson, P., Hoffsuemmer, J., Martin, E., & Edwards, D. (2010). More than Tuskegee: Understanding mistrust about research participation. Journal of Health Care for the Poor and Underserved, 21, 879–897. Skloot, R. (2001, November 17). Cells that save lives are a mother’s legacy. The New York Times. Retrieved from http:// www.glyndwr.ac.uk/ bartlett/modules/ForensicBiology1/DNA%20technology/HeLaCellLine.pdf Tullmann, D. F., & Flaskerud, J. H. (2009). Aftershocks of Tuskegee? Issues in Mental Health Nursing, 30, 131–132. Tyson, S. Y. (2007). Can cultural competence be achieved without attending to racism? Issues in Mental Health Nursing, 28(12), 1341–1344.
Copyright of Issues in Mental Health Nursing is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
