Transcultural Psychiatry 2014, Vol. 51(6) 790–805 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1363461514527491 tps.sagepub.com
Article
Research ethics in global mental health: Advancing culturally responsive mental health research Mo´nica Ruiz-Casares McGill University and Centre de Sante´ et de Services Sociaux de la Montagne
Abstract Global mental health research is needed to inform effective and efficient services and policy interventions within and between countries. Ethical reflection should accompany all GMHR and human resource capacity endeavors to ensure high standards of respect for participants and communities and to raise public debate leading to changes in policies and regulations. The views and circumstances of ethno-cultural and disadvantaged communities in the Majority and Minority world need to be considered to enhance scientific merit, public awareness, and social justice. The same applies to people with vulnerabilities yet who are simultaneously capable, such as children and youth. The ethical principles of respect for persons or autonomy, beneficence/nonmaleficence, justice, and relationality require careful contextualization for research involving human beings. Building on the work of Fisher and colleagues (2002), this article highlights some strategies to stimulate the ethical conduct of global mental health research and to guide decision-making for culturally responsible research, such as developing culturally sensitive informed consent and disclosure policies and procedures; paying special attention to socioeconomic, cultural, and environmental risks and benefits; and ensuring meaningful community and individual participation. Research and capacity-building partnerships, political will, and access to resources are needed to stimulate global mental health research and consolidate ethical practice. Keywords children, consent, global mental health, research ethics, youth
Corresponding author: Mo´nica Ruiz-Casares, Sante´ Mentale Jeunesse, CSSS de la Montagne, 7085 Hutchison, Office 204.2.14, Montreal, QC, H3N 1Y9, Canada. Email: [email protected]
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Focusing on issues that affect mental health transnationally, global mental health research (GMHR) aims to contribute to improving mental health outcomes and achieving equity in mental health for all people worldwide (Koplan et al., 2009; Patel & Prince, 2010). Factors affecting mental health cover a broad range of issues and settings—from the conditions of care of persons with mental disorders in lowand middle-income countries (LMICs) and underserved subgroups in high-income countries (e.g., undocumented migrants and asylum seekers) to the mental health consequences of armed conflict, natural disasters, migration and acculturation, and global policies (e.g., on environment or trade). Despite increased attention to mental health issues internationally in the last decade, there is still a meager evidence base. More GMHR is needed to inform systemic and policy changes, prevention and treatment interventions, and human resource capacity and public awareness efforts (Collins et al., 2011). Arguments continue on the issues of universal and relative human rights duties and moral values and the Western bias in this debate (Donnelly, 2007, 2008, 2013; Goodhart, 2008). Still, widespread ratification of the Universal Declaration of Human Rights (General Assembly, 1948) has advanced the recognition of human dignity and a common set of values, such as solidarity and equity, which provide a foundation for the study of global issues (Benatar, Daar, & Singer, 2003). Strong condemnation of double ethical standards between resource-rich and -poor countries continues to be voiced on similar grounds (Kottow, 2002). Besides codes of conduct of professional societies, several research codes of ethics have emerged in the last 70 years and continue to be revised to provide guidelines for human experimentation. The Nuremberg Code (1947), the Belmont Report (1979), the Council for International Organizations of Medical Sciences (CIOMS, 2002), the Declaration of Helsinki (WMA, 2008), and, in Canada, the Tri-Council Policy Statement (CIHR, NSERC, & SSHRC, 2010), are among the most relevant. The Belmont Report, issued in 1978 by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research in the United States, identified three fundamental ethical principles for using humans in research and provided a framework for future regulations on this matter. The three basic principles are the respect of persons or autonomy, beneficence/non-maleficence, and justice or fairness. The extent to which these rules of scientific and ethical conduct, including the Belmont principles, are transcultural, however, has been questioned (DuBois, 2005a; Fisher et al., 2002). In fact, the National Commission (1979) clearly stated that the fundamental principles they identified as “particularly relevant to the ethics of research involving human subjects” were selected “among those generally accepted in our cultural tradition” (p. 4). While the principles of autonomy, beneficence, non-maleficence, and fairness seem broadly applicable to research involving human subjects in other settings, their understanding and applications require careful consideration of socioeconomic, cultural, and environmental contexts. Thus, for example, DuBois’s (2005a; 2008) contextualization of the principle of autonomy warns researchers against requesting signatures wherever such a
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practice generates mistrust, and highlights the differential emphasis across societies of autonomy/relationality and certain people’s disempowerment to make autonomous choices (e.g., due to low education, gender, or diagnostic discrimination). Similarly, a context-sensitive application of the principle of beneficence/nonmaleficence requires that researchers assess, for example, how the study may burden participants, and how research findings may stigmatize the study population. Then, the principle of justice may target vulnerable groups for convenience or fail to distribute research benefits and burdens fairly. DuBois’s addition of the principle of relationality that situates individuals in their social contexts aims to facilitate balancing the needs and rights of the individual and those of the community in the tradition of communitarism (Dresden, McElmurry, & McCreary, 2003). Overall, DuBois encourages researchers to ask in order to clarify the meaning of wellbeing, hierarchy of needs, and risks acceptable to the group (beneficence/ non-maleficence), as well as existing relations that need to be respected (relationality), and other crucial information needed to ensure respect of these core ethical principles. The application of these principles to the conduct of global mental health research requires special attention to the processes for obtaining informed consent, conducting risk–benefit assessment, and engaging research participants and communities to ensure equity and regard for existing relations that need to be respected. This article is organized around these three dimensions that facilitate the ethical conduct of global mental health research. The paper ends with an indication of some strategies to develop and stimulate mental health research globally.
Culturally responsible informed consent and disclosure policies and procedures Informed consent and assessment of decision-making capacity Informed, reasoned, voluntary consent (IC) is a key ethical requirement for the conduct of research involving humans. IC with vulnerable individuals and/or in resource-poor settings has gained increased attention in medical research during the last decades (Vera´stegui, 2006). Culturally responsible IC procedures for mental health research require that researchers carefully consider participants’ (and their guardians, if applicable) understanding of research, collective responsibility, authority, and individual autonomy (e.g., in adult–child relations), as well as any cultural, linguistic, and economic circumstances that may influence people’s interest and ability to participate (Benatar, 2002; Macklin, 2001; Molyneux, Peshu, & Marsh, 2004; Sa´nchez, Salazar, Tijero, & Dı´ az, 2001). A systematic review of IC procedures in non-Western societies documented the usefulness of involving peers as well as local community and/or cultural leaders in the presentation of study information (Mystakidou, Panagiotou, Katsaragakis, Tsilika, & Parpa, 2009). Their input can also assist in determining fair and non-coercive compensation. Time to ponder the information provided and to discuss it with partners or relatives was important for women participating in medical trials in Santiago,
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Chile (Sa´nchez et al., 2001). Furthermore, cultural traditions and community structures, such as Aboriginal populations, may require that community elders, grandparents or other relatives are involved in decision making, to gain access to community members, most notably children (Alberta Mental Health Board, 2006). To ensure adequate understanding of the consent information, IC instruments must take into account the developmental level, language preference and proficiency, and communication style utilized in each particular community, privileging the use of professional/trained interpreters whenever translation is necessary (Fisher et al., 2002). For instance, the use of a locally-appropriate pictorial flipchart developed through participatory community research methods resulted in a good understanding of the conditions of the study among female participants in Mwanza, Tanzania (Vallely et al., 2010). Careful consideration of how terminology varies across cultural groups may even lead to avoiding terms such as “mental health” to avoid misunderstanding and stigma: for example, if “going to a psychologist suggests there is something wrong with you” (Alberta Mental Health Board, 2006, p. 5). Similarly, future empirical research on the cultural context of informed consent should consider the effect of local beliefs about disease etiology and treatment and previous experiences with medical or behavioral research (Marshall, 2006). In determining whether the individual has the mental abilities required to make the decision to participate in research, researchers should be mindful that criteria for determining a person’s ability to give informed consent reflect social structures, dynamics, and perceptions of capacity (EMHR, 2005c). For example, in the context of mental health research, concerns about the participation of trauma survivors (McClain, Laughon, Steeves, & Parker, 2007), people with dementia (Cubit, 2010; Slaughter, Cole, Jennings, & Reimer, 2007), and other potentially vulnerable groups have been raised (Keogh & Daly, 2009; Macklin, 2001). However, capacity to consent and capacity to participate do not always go hand in hand. For instance, children and adolescents are also considered a population requiring special protection, yet their meaningful involvement in research is increasingly acknowledged (Lind, Anderson, & Oberle, 2003). In order to facilitate participation, researchers should make reasonable accommodations, avoid unfairly targeting people to be screened for decision-making capacity, and acquire the necessary skills to establish true rapport with participants and be sensitive to their needs (EMHR, 2005a). Trust and relationships play an important role in people’s agreement or refusal to participate as well as in the quality of their involvement (Molyneux, Peshu, & Marsh, 2005; Ruiz-Casares, 2011a). Knowledge of context is important in negotiating spaces for participants, as some communities may not automatically seek the agreement of children or adults unable to consent. Community meetings and other “awareness-raising activities” may prove useful to sensitize local stakeholders, as done in preparation for a mental health study among people living with severe mental illness in rural Kenya (Lund et al., 2013). The way to document informed consent is also context dependent, as signed consent is mostly a Western concept, and in many settings, signed documents may
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raise suspicion and even put participants in danger (e.g., in repressive political regimes or undocumented migrants fearing deportation). Moreover, in societies with oral traditions, “the power and validity of words and deeds outweighs that of a written contract” (Brunger & Weijer, 2002, p. 386). On occasion, participants will benefit from not keeping any “proof” of participation. For example, a group of homeless girls I interviewed in Caprivi, Namibia, requested not to receive any document or material compensation, as they feared aggression from their “neighbors” if they found out of their participation in the study.
Privacy and confidentiality in context Privacy violations, embarrassment, and harm to reputation are among the primary risks of social science research on mental health (EMHR, 2005d). The protection of the privacy of participants and communities is often required by law and professional codes of conduct. Research team members, including translators and interpreters, are called to abide to the highest standards of confidentiality. This includes carefully managing all nominal information by collecting data anonymously whenever possible, using codes instead of personal identifiers, and securely storing, accessing, and disposing of nominal information. Special precautions are needed to protect confidentiality in small or close-knit communities (e.g., small ethnic populations) or institutions (e.g., schools or detention facilities) where participation in a study may lead to public disclosure of mental health conditions and the stigma locally associated with these conditions (Fisher et al., 2002). Local understandings of privacy may conflict with those enshrined in existing regulations and that originate mostly in Western industrialized countries. Nonetheless, the creation of safe spaces for disclosure seems necessary across all settings. For example, although I could have been able to obtain much of the information on family history and social relations by asking relatives and neighbors of the child-headed households I was working with in Northern Namibia, it was only in the context of privacy and promise of confidentiality that suicidal ideas were shared—often for the first time! This required that interviews were conducted out of earshot yet within sight of the community (Ruiz-Casares, 2011a). Fisher and colleagues (2002) advocate for building “culturally valid criteria for disclosing confidential information” (p. 1033) as well as culturally valid referral/protection systems. Confidentiality and disclosure policies should be clearly explained during IC procedures.
Contextualized assessment of risk, harm, and benefit All research should minimize risks and maximize potential benefits for individuals, communities, and society at large. Systematic consideration of sociocultural and environmental factors is needed to develop an accurate assessment of risks and benefits, including necessary measures for equitable selection of participants, and to enhance the scientific quality of research. Scientific quality and careful
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assessment of risks and benefits are needed to determine whether a study is justified (Ruiz-Casares, 2013). Indeed, GMHR challenges researchers to “wed sound scientific practices with meaningful ethical protections for participants” (Zeanah, Fox, & Nelson, 2012).
Scientific merit as precondition to the conduct of research Several factors impinge directly on the scientific value of a study without which no benefits can be expected. Factors identified by Fisher and colleagues (2002) in the context of mental health studies involving ethnic minority children and youth can apply to other participants or settings. Together with understanding the social and political conditions of participants’ lives, these include: a. Careful, explicit consideration of the social and political factors influencing the definitions of race, ethnicity, and culture and the impact of discrimination on mental health outcomes. The former is essential to “ensure the scientific validity of the research question” (p. 1026); the latter, to ensure a correct interpretation of results. In programmatic research, this is particularly important in order to promote treatments that address the social realities of vulnerable subpopulations. b. Attention to within-group differences and individual variability. When designing studies and interpreting findings researchers should avoid both extremes, i.e., “ignoring cultural differences and stereotyping” (EMHR, 2005a, 2005b). Overgeneralizations or grouping participants under broad labels may hide individual and within-group variations (e.g., due to immigration history, acculturation, ethnic self-identification, socioeconomic status, or religion). Similarly, those conducting global mental health research with children must bear in mind the “different cultures of childhood and adulthood” and “the heterogeneous nature of childhood itself” (Kirk, 2007). c. Ensuring cultural validity of assessment measures. Researchers should prioritize the use of “instruments that have been standardized on members of the participant’s racial, ethnic, or cultural group” or, if necessary, rigorously translated versions of such instruments. If not available, they should carefully assess their cultural validity and measurement equivalence for each population studied (Fisher et al., 2002, p. 1026).
Role of sociocultural and environmental contexts in mental health outcomes and access to services Accumulating evidence links racism, discrimination, poverty, immigration status, and other social factors to negative developmental and mental health outcomes and unequal access to healthcare (Murali & Oyebode, 2004; Paradies, 2006; Rousseau & Drapeau, 2004). However, comparative research designs utilizing as standards
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the developmental patterns of ethnic majority groups may lead to misinterpretation of differences in mental health outcomes between these and minority groups (i.e., considering these differences as deficits in strengths and developmental capacities among the latter). Similarly, social, cultural, or religious values and traditions may interfere with the participation of certain groups: for example, women being interviewed by men or strangers (Crosby & Grodin, 2002) and the paucity of culturally appropriate standards and diagnostic criteria may interfere with a fair selection of treatment and control groups in clinical trials. In consequence, adopting study designs that take into account assets and resilience as well as the cultural and contextual factors that may influence responsiveness to treatment and/or research participation are recommended (Fisher et al., 2002). Close collaboration with a “culturally competent advocate” from the community where the research will take place throughout the design and implementation of the study (Crosby & Grodin, 2002) and cultural feasibility studies in preparation for clinical trials (Coreil et al., 1998) are among the ways proposed to ensure adequate consideration of ethical and social issues in the design of cross-cultural studies. Furthermore, some scholars advocate for the inclusion of “the religious, spiritual, and/or traditional principles that characterize a local population” into international ethical guidelines for the conduct of GMHR (Nolan, Whetten, & Koenig, 2011).
Personal integrity, self-reflection, and ethical, legal, and cultural training for all research team members Ethical conduct of research ultimately depends upon the personal integrity and training of researcher(s) themselves. Thus, the National Health & Medical Research Council requires that researchers working with Aboriginal communities in Australia honor integrity and respect as guiding values when they engage with local people and structures; in their words, researchers demonstrate integrity “in a commitment to the search for knowledge, recognised principles of research conduct and in the honest and ethical conduct of research and dissemination and communication of results” (NHMRC, 2003, p. 17). Confronted with unanticipated ethical dilemmas during fieldwork, researchers are often tested in their personal integrity, professional knowledge, and interpersonal skills. Thus, Murphy and Dingwall (2007) advocate for the development of “professional models of regulation which emphasise education, training and mutual accountability” to their peers (p. 2223). In order to advance unbiased research and to increase understanding of the core ethical, legal, and human rights issues, all research team members should acquire a good understanding of both the culture in which the study will take place as well as the applicable legal norms and ethics framework and procedures. They should also become familiar with the resources available in the locations where the study will be implemented, so that referrals can be made if necessary (Ruiz-Casares, 2013). Training, coupled with ongoing self-questioning of their own assumptions and exchange of perspectives among team members can facilitate methodological adjustments to better respond to each participating culture (Fisher et al., 2002).
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Meaningful participation of communities and individuals Shared ownership and ongoing, respectful dialogue (on the ethical challenges of mental health studies) among scientist, participants, and community stakeholders may enhance the ethical and scientific quality of research (DuBois, 2005b) as well as research governance (Larkin, de Casterle´, & Schotsmans, 2008). This exchange may take many different forms. Participatory research approaches that include a diverse group of community members as co-investigators in the design, implementation, and dissemination of research are recommended despite being more time consuming. Valuable community input may also be obtained through participation in focus group discussions and local panels. As Garrafa and Lorenzo (2008) advocate, there is a need to open up “democratic spaces for social auditing” of research endeavors (e.g., through the creation of national commissions for clinical trials). For example, prior to conducting a large child protection survey in Liberia, a local Advisory Committee was convened to regularly discuss ethical (e.g., clarify locally-appropriate IC procedures, desired benefits, and risks of concern) and methodological (e.g., focus group protocols and recruitment) issues (Ruiz-Casares, 2011b). Collaborative partnerships may contribute to scientific and ethical merit, as well as to identifying resources and building networks of support so that assistance can be offered to research participants in need and to facilitate dissemination of research findings. These partnerships, for example, were particularly crucial to justify depression research other than screening (Thombs et al., 2012) in contexts where mental health services were not readily available (Ruiz-Casares, 2013). Increasing community consultation and collaboration is particularly needed to regain the trust of groups historically marginalized or mistreated by science (e.g., the African American community as a result of the Tuskegee study). The selection of stakeholders who may adequately represent the views and interests of the population under study requires a good understanding of each community’s social fabric. For example, in many communities political leaders or tribal councils may represent the particular culture and mental health concerns of individual participants. Mabaraza (traditional East African community assemblies) in Western Kenya, for instance, advocate for community consent and decisionmaking about research (Vreeman et al., 2012). Special attention is needed to ensure meaningful representation of the views and interests of marginalized/ vulnerable groups within communities (e.g., children and adolescents) as concerns for their wellbeing may well lead to overprotection and gatekeeping out of mental health research without equal recognition of their need for research and their right to participation (Arnold et al., 1995; Graham & Fitzgerald, 2010; Powell, Fitzgerald, Taylor, & Graham, 2012). Adult gatekeepers can also use their power to censor young people (Masson, 2004). Similarly, true collaborative research requires a well-balanced consideration and distribution of the needs, benefits, and obligations of all scientists and institutions involved and not only of those from resource-rich settings.
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Strategies to develop and stimulate mental health research globally Research partnerships and partnerships to strengthen capacity for GMHR In contrast with public and international health approaches, successful global mental health solutions often require global cooperation. This reflects a shift in philosophy and attitude that emphasizes the mutuality of real partnership, a pooling of experience and knowledge, and a two-way flow between developed and developing countries. Global health thus uses the resources, knowledge, and experience of diverse societies to address health challenges throughout the world. (Koplan et al., 2009, pp. 1994–1995)
Some of the proposed models of collaboration aim to participate in research development that will reinforce health policy and clinical services with solid evidence; others aim to build mental health research capacity in low-resource settings. The former may be done by means of training and supporting local researchers, and promoting the utilization of research findings by decision-makers at all levels. The latter may be done through long-term partnerships (e.g., between institutions in high-, low-, and middle-income countries),1 structured programs, and monitored training and mentorship of research staff at every career stage (Crump, Sugarman, & the Working Group on Ethics Guidelines for Global Health Training, 2010; Fricchione et al., 2012; Thornicroft, Cooper, Van Bortel, Kakuma, & Lund, 2012). The ethical issues associated with such research and service training initiatives need to be explicitly addressed through, for example, the development of ethical guidelines and formal ethical guidance (Crump & Sugarman, 2008). Mutual and reciprocal benefit as a goal for both sending and host institutions is further emphasized by the Working Group on Ethics Guidelines for Global Health Training (Crump et al., 2010). The core research content and skills to be taught to all researchers (i.e., from both host and sending institutions) should include ethical and human rights frameworks and procedures, applicable legal norms, critical thinking/reading and research methods, cultural competency/local customs, and the sociocultural, economic, and political context of research wherever research will be conducted (Shah, Nodell, Montano, Behrens, & Zunt, 2010). In addition to formal training, it is advisable to create safe spaces for reflection and dialogue on the scientific and ethical principles relevant to mental health research and the cultural, social, and other factors that may facilitate or hinder the conditions under study. Strengthened mental health research capacity in Minority settings (including low-resource settings within the Majority world) is not only needed to advance medical science but may lead to increased attention to understudied conditions (i.e., diseases afflicting Minority settings) and research publication equity (Sumathipala, Siribaddana, & Patel, 2004).
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Political will and access to resources Political will and lack of appreciation of the importance of ethical conduct of research and clinical practice are major constraints to the consolidation of ethical practice. Anya and Raine (2008) talk about the need for a “cultural shift” because “if clinicians and health-care workers do not believe ethical issues in clinical care to be relevant or important to them, they are unlikely to change their practice within the isolated context of a research study” (p. 1595). High-level commitments are needed to establish and regulate standards for ethical practice, and to implement and monitor these standards. Access to both resources for research and research findings is also essential to advancing a GMHR agenda. In line with the principle of shared benefits and risks, there is a need to make prestigious scientific publications and research infrastructure available to researchers in low-resource countries. Greater dialogue around access to products under investigation and other forms of benefits is needed among stakeholders (Lairumbi, Michael, Fitzpatrick, & English, 2011; Lairumbi, Parker, Fitzpatrick, & English, 2012). Mentoring on writing for publication as well as linguistic assistance for those with limited command of English or other major publishing languages may increase the amount and quality of manuscripts authored by scientists from Minority world countries.
Conclusions GMHR is a much-needed tool towards reducing disparities in mental health outcomes and access to services. In order to develop locally appropriate strategies and effective solutions across cultural settings and health systems, the views and circumstances of ethno-cultural and disadvantaged communities in the Majority and Minority world need to be considered. Normative regulations in research that reflect the socioeconomic and cultural contexts of each country also need to be developed and enforced. Legal and procedural norms, however, cannot replace ethical principles and reflection (DuBois, 2008). In fact, I have here advocated for increased attention to personal integrity and ethics in the development and instruction of GMHR. Training of researchers and stakeholders in research ethics and the creation of spaces for ethical reflection and dialogue are needed in both Minority and Majority world contexts. A contextualized understanding of the fundamental ethical principles of autonomy, beneficence, non-maleficence, and justice provides a framework for the development of research projects, regulations, and training. This is particularly relevant in GMHR, whereby the people and communities involved often live in countries without clear legal and ethical frameworks and Minority country regulations may be inadequate in international research (DuBois, 2005a). Guidelines for the conduct of culturally responsible GMHR include the development and implementation of culturally sensitive informed consent and disclosure policies and procedures, special attention to context when assessing
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research risks and benefits, and meaningful community and individual participation (Fisher et al., 2002). To stimulate the ethical conduct of GMHR, well-balanced collaborations, political will, and additional resources are needed. Stronger research capacity in resource-poor countries may expand the research agenda to include currently understudied conditions and sub-populations as well as diverse phenomena impinging on mental health and wellbeing globally (Benatar, 2002). Ultimately, as Benatar et al. (2003) advocated for the field of global health ethics more broadly, GMHR may offer an interdisciplinary space for human values such as those of solidarity, empathy, and civic responsibility to thrive (p. 138). Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Acknowledgments Thank you to Ce´cile Rousseau and two anonymous reviewers for their comments on an earlier version of this manuscript. An earlier version of this paper was presented at the McGill Advanced Study Institute on Cultural Psychiatry held in Montreal in July 2012.
Note 1. This may include partnerships among clinicians and/or researchers and locally based research groups and networks.
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Ruiz-Casares, M. (2011a). Building trust, enhancing research: Carrying out fieldwork in Namibia. In L.-H. V. Trouilloud & A. Narayan (Eds.), Conducting research abroad: Positionality, methodology, & practice. Lexington, MA: Lexington Press. Ruiz-Casares, M. (2011b). Child protection knowledge, attitudes, and practices in central and Western Liberia. Monrovia, Liberia: Save the Children and USAID. Ruiz-Casares, M. (2013). Knowledge without harm?: When follow-up support is not readily available. In K. T. Riele & R. Brooks (Eds.), Negotiating ethical challenges in youth research (pp. 84–95). London, UK: Routledge. Sa´nchez, S., Salazar, G., Tijero, M., & Dı´ az, S. (2001). Informed consent procedures: Responsibilities of researchers in developing countries. Bioethics, 15(5–6), 398–412. doi: 10.1111/1467-8519.00250. Shah, S. K., Nodell, B., Montano, S. M., Behrens, C., & Zunt, J. R. (2010). Clinical research and global health: Mentoring the next generation of health care students. Global Public Health, 6(3), 234–246. doi: 10.1080/17441692.2010.494248. Slaughter, S., Cole, D., Jennings, E., & Reimer, M. A. (2007). Consent and assent to participate in research from people with dementia. Nursing Ethics, 14(1), 27–40. doi: 10.1177/ 0969733007071355. Sumathipala, A., Siribaddana, S., & Patel, V. (2004). Under-representation of developing countries in the research literature: Ethical issues arising from a survey of five leading medical journals. BMC Medical Ethics, 5(5). doi: 10.1186/1472-6939-5-5. Thombs, B. D., Coyne, J. C., Cuijpers, P., de Jonge, P., Gilbody, S., Ioannidis, J. P. A., . . . Ziegelstein, R. C. (2012). Re-rethinking the article by Thombs and colleagues. Canadian Medical Association Journal, 184(4), 438–439. doi: 10.1503/cmaj.112-2024. Thornicroft, G., Cooper, S., Van Bortel, T., Kakuma, R., & Lund, C. (2012). Capacity building in global mental health research. Harvard Review of Psychiatry, 20(1), 13–24. doi: 10.3109/10673229.2012.649117. Vallely, A., Lees, S., Shagi, C., Kasindi, S., Soteli, S., Kavit, N., . . . Hayes, R. J. (2010). How informed is consent in vulnerable populations? Experience using a continuous consent process during the MDP301 vaginal microbicide trial in Mwanza, Tanzania. BMC Medical Ethics, 11(10). doi: 10.1186/1472-6939-11-10. Vera´stegui, E. L. (2006). Consenting of the vulnerable: the informed consent procedure in advanced cancer patients in Mexico. BMC Medical Ethics, 7(13) doi: 10.1186/14726939-7-13. Vreeman, R., Kamaara, E., Kamanda, A., Ayuku, D., Nyandiko, W., Atwoli, L., . . . Braitstein, P. (2012). A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya. BMC Medical Ethics, 13(23). doi: 10.1186/1472-6939-13-23. WMA. (2008). World Medical Association declaration of Helsinki: Ethical principles for medical research involving human subjects (6th rev.) Retrieved from http://www.wma. net/en/30publications/10policies/b3/index.html Zeanah, C. H., Fox, N. A., & Nelson, C. A. (2012). The Bucharest early intervention project: Case study in the ethics of mental health research. The Journal of Nervous and Mental Disease, 200(3), 243–247. doi: 210.1097/NMD.1090b1013e318247d318275.
Mo´nica Ruiz-Casares, PhD, is an Assistant Professor in the Division of Social and Transcultural Psychiatry and the Centre for Research on Children and Families at McGill University. She is also a Scientific Advisor at the Centre de Sante´ et des
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Services Sociaux de la Montagne in Montreal, where she evaluates health and social programs with ethno-culturally diverse families. Her published works focus on children’s rights, protection, and wellbeing cross-culturally and on ethical and methodological issues involved in research with children. She leads mixed-methods studies related to child protection and wellbeing, mainly in contexts of parent–child separation such as children home alone in Canada and children in alternative care in Namibia, Laos, and Liberia.
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Article
Research ethics in global mental health: Advancing culturally responsive mental health research Mo´nica Ruiz-Casares McGill University and Centre de Sante´ et de Services Sociaux de la Montagne
Abstract Global mental health research is needed to inform effective and efficient services and policy interventions within and between countries. Ethical reflection should accompany all GMHR and human resource capacity endeavors to ensure high standards of respect for participants and communities and to raise public debate leading to changes in policies and regulations. The views and circumstances of ethno-cultural and disadvantaged communities in the Majority and Minority world need to be considered to enhance scientific merit, public awareness, and social justice. The same applies to people with vulnerabilities yet who are simultaneously capable, such as children and youth. The ethical principles of respect for persons or autonomy, beneficence/nonmaleficence, justice, and relationality require careful contextualization for research involving human beings. Building on the work of Fisher and colleagues (2002), this article highlights some strategies to stimulate the ethical conduct of global mental health research and to guide decision-making for culturally responsible research, such as developing culturally sensitive informed consent and disclosure policies and procedures; paying special attention to socioeconomic, cultural, and environmental risks and benefits; and ensuring meaningful community and individual participation. Research and capacity-building partnerships, political will, and access to resources are needed to stimulate global mental health research and consolidate ethical practice. Keywords children, consent, global mental health, research ethics, youth
Corresponding author: Mo´nica Ruiz-Casares, Sante´ Mentale Jeunesse, CSSS de la Montagne, 7085 Hutchison, Office 204.2.14, Montreal, QC, H3N 1Y9, Canada. Email: [email protected]
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Focusing on issues that affect mental health transnationally, global mental health research (GMHR) aims to contribute to improving mental health outcomes and achieving equity in mental health for all people worldwide (Koplan et al., 2009; Patel & Prince, 2010). Factors affecting mental health cover a broad range of issues and settings—from the conditions of care of persons with mental disorders in lowand middle-income countries (LMICs) and underserved subgroups in high-income countries (e.g., undocumented migrants and asylum seekers) to the mental health consequences of armed conflict, natural disasters, migration and acculturation, and global policies (e.g., on environment or trade). Despite increased attention to mental health issues internationally in the last decade, there is still a meager evidence base. More GMHR is needed to inform systemic and policy changes, prevention and treatment interventions, and human resource capacity and public awareness efforts (Collins et al., 2011). Arguments continue on the issues of universal and relative human rights duties and moral values and the Western bias in this debate (Donnelly, 2007, 2008, 2013; Goodhart, 2008). Still, widespread ratification of the Universal Declaration of Human Rights (General Assembly, 1948) has advanced the recognition of human dignity and a common set of values, such as solidarity and equity, which provide a foundation for the study of global issues (Benatar, Daar, & Singer, 2003). Strong condemnation of double ethical standards between resource-rich and -poor countries continues to be voiced on similar grounds (Kottow, 2002). Besides codes of conduct of professional societies, several research codes of ethics have emerged in the last 70 years and continue to be revised to provide guidelines for human experimentation. The Nuremberg Code (1947), the Belmont Report (1979), the Council for International Organizations of Medical Sciences (CIOMS, 2002), the Declaration of Helsinki (WMA, 2008), and, in Canada, the Tri-Council Policy Statement (CIHR, NSERC, & SSHRC, 2010), are among the most relevant. The Belmont Report, issued in 1978 by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research in the United States, identified three fundamental ethical principles for using humans in research and provided a framework for future regulations on this matter. The three basic principles are the respect of persons or autonomy, beneficence/non-maleficence, and justice or fairness. The extent to which these rules of scientific and ethical conduct, including the Belmont principles, are transcultural, however, has been questioned (DuBois, 2005a; Fisher et al., 2002). In fact, the National Commission (1979) clearly stated that the fundamental principles they identified as “particularly relevant to the ethics of research involving human subjects” were selected “among those generally accepted in our cultural tradition” (p. 4). While the principles of autonomy, beneficence, non-maleficence, and fairness seem broadly applicable to research involving human subjects in other settings, their understanding and applications require careful consideration of socioeconomic, cultural, and environmental contexts. Thus, for example, DuBois’s (2005a; 2008) contextualization of the principle of autonomy warns researchers against requesting signatures wherever such a
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practice generates mistrust, and highlights the differential emphasis across societies of autonomy/relationality and certain people’s disempowerment to make autonomous choices (e.g., due to low education, gender, or diagnostic discrimination). Similarly, a context-sensitive application of the principle of beneficence/nonmaleficence requires that researchers assess, for example, how the study may burden participants, and how research findings may stigmatize the study population. Then, the principle of justice may target vulnerable groups for convenience or fail to distribute research benefits and burdens fairly. DuBois’s addition of the principle of relationality that situates individuals in their social contexts aims to facilitate balancing the needs and rights of the individual and those of the community in the tradition of communitarism (Dresden, McElmurry, & McCreary, 2003). Overall, DuBois encourages researchers to ask in order to clarify the meaning of wellbeing, hierarchy of needs, and risks acceptable to the group (beneficence/ non-maleficence), as well as existing relations that need to be respected (relationality), and other crucial information needed to ensure respect of these core ethical principles. The application of these principles to the conduct of global mental health research requires special attention to the processes for obtaining informed consent, conducting risk–benefit assessment, and engaging research participants and communities to ensure equity and regard for existing relations that need to be respected. This article is organized around these three dimensions that facilitate the ethical conduct of global mental health research. The paper ends with an indication of some strategies to develop and stimulate mental health research globally.
Culturally responsible informed consent and disclosure policies and procedures Informed consent and assessment of decision-making capacity Informed, reasoned, voluntary consent (IC) is a key ethical requirement for the conduct of research involving humans. IC with vulnerable individuals and/or in resource-poor settings has gained increased attention in medical research during the last decades (Vera´stegui, 2006). Culturally responsible IC procedures for mental health research require that researchers carefully consider participants’ (and their guardians, if applicable) understanding of research, collective responsibility, authority, and individual autonomy (e.g., in adult–child relations), as well as any cultural, linguistic, and economic circumstances that may influence people’s interest and ability to participate (Benatar, 2002; Macklin, 2001; Molyneux, Peshu, & Marsh, 2004; Sa´nchez, Salazar, Tijero, & Dı´ az, 2001). A systematic review of IC procedures in non-Western societies documented the usefulness of involving peers as well as local community and/or cultural leaders in the presentation of study information (Mystakidou, Panagiotou, Katsaragakis, Tsilika, & Parpa, 2009). Their input can also assist in determining fair and non-coercive compensation. Time to ponder the information provided and to discuss it with partners or relatives was important for women participating in medical trials in Santiago,
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Chile (Sa´nchez et al., 2001). Furthermore, cultural traditions and community structures, such as Aboriginal populations, may require that community elders, grandparents or other relatives are involved in decision making, to gain access to community members, most notably children (Alberta Mental Health Board, 2006). To ensure adequate understanding of the consent information, IC instruments must take into account the developmental level, language preference and proficiency, and communication style utilized in each particular community, privileging the use of professional/trained interpreters whenever translation is necessary (Fisher et al., 2002). For instance, the use of a locally-appropriate pictorial flipchart developed through participatory community research methods resulted in a good understanding of the conditions of the study among female participants in Mwanza, Tanzania (Vallely et al., 2010). Careful consideration of how terminology varies across cultural groups may even lead to avoiding terms such as “mental health” to avoid misunderstanding and stigma: for example, if “going to a psychologist suggests there is something wrong with you” (Alberta Mental Health Board, 2006, p. 5). Similarly, future empirical research on the cultural context of informed consent should consider the effect of local beliefs about disease etiology and treatment and previous experiences with medical or behavioral research (Marshall, 2006). In determining whether the individual has the mental abilities required to make the decision to participate in research, researchers should be mindful that criteria for determining a person’s ability to give informed consent reflect social structures, dynamics, and perceptions of capacity (EMHR, 2005c). For example, in the context of mental health research, concerns about the participation of trauma survivors (McClain, Laughon, Steeves, & Parker, 2007), people with dementia (Cubit, 2010; Slaughter, Cole, Jennings, & Reimer, 2007), and other potentially vulnerable groups have been raised (Keogh & Daly, 2009; Macklin, 2001). However, capacity to consent and capacity to participate do not always go hand in hand. For instance, children and adolescents are also considered a population requiring special protection, yet their meaningful involvement in research is increasingly acknowledged (Lind, Anderson, & Oberle, 2003). In order to facilitate participation, researchers should make reasonable accommodations, avoid unfairly targeting people to be screened for decision-making capacity, and acquire the necessary skills to establish true rapport with participants and be sensitive to their needs (EMHR, 2005a). Trust and relationships play an important role in people’s agreement or refusal to participate as well as in the quality of their involvement (Molyneux, Peshu, & Marsh, 2005; Ruiz-Casares, 2011a). Knowledge of context is important in negotiating spaces for participants, as some communities may not automatically seek the agreement of children or adults unable to consent. Community meetings and other “awareness-raising activities” may prove useful to sensitize local stakeholders, as done in preparation for a mental health study among people living with severe mental illness in rural Kenya (Lund et al., 2013). The way to document informed consent is also context dependent, as signed consent is mostly a Western concept, and in many settings, signed documents may
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raise suspicion and even put participants in danger (e.g., in repressive political regimes or undocumented migrants fearing deportation). Moreover, in societies with oral traditions, “the power and validity of words and deeds outweighs that of a written contract” (Brunger & Weijer, 2002, p. 386). On occasion, participants will benefit from not keeping any “proof” of participation. For example, a group of homeless girls I interviewed in Caprivi, Namibia, requested not to receive any document or material compensation, as they feared aggression from their “neighbors” if they found out of their participation in the study.
Privacy and confidentiality in context Privacy violations, embarrassment, and harm to reputation are among the primary risks of social science research on mental health (EMHR, 2005d). The protection of the privacy of participants and communities is often required by law and professional codes of conduct. Research team members, including translators and interpreters, are called to abide to the highest standards of confidentiality. This includes carefully managing all nominal information by collecting data anonymously whenever possible, using codes instead of personal identifiers, and securely storing, accessing, and disposing of nominal information. Special precautions are needed to protect confidentiality in small or close-knit communities (e.g., small ethnic populations) or institutions (e.g., schools or detention facilities) where participation in a study may lead to public disclosure of mental health conditions and the stigma locally associated with these conditions (Fisher et al., 2002). Local understandings of privacy may conflict with those enshrined in existing regulations and that originate mostly in Western industrialized countries. Nonetheless, the creation of safe spaces for disclosure seems necessary across all settings. For example, although I could have been able to obtain much of the information on family history and social relations by asking relatives and neighbors of the child-headed households I was working with in Northern Namibia, it was only in the context of privacy and promise of confidentiality that suicidal ideas were shared—often for the first time! This required that interviews were conducted out of earshot yet within sight of the community (Ruiz-Casares, 2011a). Fisher and colleagues (2002) advocate for building “culturally valid criteria for disclosing confidential information” (p. 1033) as well as culturally valid referral/protection systems. Confidentiality and disclosure policies should be clearly explained during IC procedures.
Contextualized assessment of risk, harm, and benefit All research should minimize risks and maximize potential benefits for individuals, communities, and society at large. Systematic consideration of sociocultural and environmental factors is needed to develop an accurate assessment of risks and benefits, including necessary measures for equitable selection of participants, and to enhance the scientific quality of research. Scientific quality and careful
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assessment of risks and benefits are needed to determine whether a study is justified (Ruiz-Casares, 2013). Indeed, GMHR challenges researchers to “wed sound scientific practices with meaningful ethical protections for participants” (Zeanah, Fox, & Nelson, 2012).
Scientific merit as precondition to the conduct of research Several factors impinge directly on the scientific value of a study without which no benefits can be expected. Factors identified by Fisher and colleagues (2002) in the context of mental health studies involving ethnic minority children and youth can apply to other participants or settings. Together with understanding the social and political conditions of participants’ lives, these include: a. Careful, explicit consideration of the social and political factors influencing the definitions of race, ethnicity, and culture and the impact of discrimination on mental health outcomes. The former is essential to “ensure the scientific validity of the research question” (p. 1026); the latter, to ensure a correct interpretation of results. In programmatic research, this is particularly important in order to promote treatments that address the social realities of vulnerable subpopulations. b. Attention to within-group differences and individual variability. When designing studies and interpreting findings researchers should avoid both extremes, i.e., “ignoring cultural differences and stereotyping” (EMHR, 2005a, 2005b). Overgeneralizations or grouping participants under broad labels may hide individual and within-group variations (e.g., due to immigration history, acculturation, ethnic self-identification, socioeconomic status, or religion). Similarly, those conducting global mental health research with children must bear in mind the “different cultures of childhood and adulthood” and “the heterogeneous nature of childhood itself” (Kirk, 2007). c. Ensuring cultural validity of assessment measures. Researchers should prioritize the use of “instruments that have been standardized on members of the participant’s racial, ethnic, or cultural group” or, if necessary, rigorously translated versions of such instruments. If not available, they should carefully assess their cultural validity and measurement equivalence for each population studied (Fisher et al., 2002, p. 1026).
Role of sociocultural and environmental contexts in mental health outcomes and access to services Accumulating evidence links racism, discrimination, poverty, immigration status, and other social factors to negative developmental and mental health outcomes and unequal access to healthcare (Murali & Oyebode, 2004; Paradies, 2006; Rousseau & Drapeau, 2004). However, comparative research designs utilizing as standards
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the developmental patterns of ethnic majority groups may lead to misinterpretation of differences in mental health outcomes between these and minority groups (i.e., considering these differences as deficits in strengths and developmental capacities among the latter). Similarly, social, cultural, or religious values and traditions may interfere with the participation of certain groups: for example, women being interviewed by men or strangers (Crosby & Grodin, 2002) and the paucity of culturally appropriate standards and diagnostic criteria may interfere with a fair selection of treatment and control groups in clinical trials. In consequence, adopting study designs that take into account assets and resilience as well as the cultural and contextual factors that may influence responsiveness to treatment and/or research participation are recommended (Fisher et al., 2002). Close collaboration with a “culturally competent advocate” from the community where the research will take place throughout the design and implementation of the study (Crosby & Grodin, 2002) and cultural feasibility studies in preparation for clinical trials (Coreil et al., 1998) are among the ways proposed to ensure adequate consideration of ethical and social issues in the design of cross-cultural studies. Furthermore, some scholars advocate for the inclusion of “the religious, spiritual, and/or traditional principles that characterize a local population” into international ethical guidelines for the conduct of GMHR (Nolan, Whetten, & Koenig, 2011).
Personal integrity, self-reflection, and ethical, legal, and cultural training for all research team members Ethical conduct of research ultimately depends upon the personal integrity and training of researcher(s) themselves. Thus, the National Health & Medical Research Council requires that researchers working with Aboriginal communities in Australia honor integrity and respect as guiding values when they engage with local people and structures; in their words, researchers demonstrate integrity “in a commitment to the search for knowledge, recognised principles of research conduct and in the honest and ethical conduct of research and dissemination and communication of results” (NHMRC, 2003, p. 17). Confronted with unanticipated ethical dilemmas during fieldwork, researchers are often tested in their personal integrity, professional knowledge, and interpersonal skills. Thus, Murphy and Dingwall (2007) advocate for the development of “professional models of regulation which emphasise education, training and mutual accountability” to their peers (p. 2223). In order to advance unbiased research and to increase understanding of the core ethical, legal, and human rights issues, all research team members should acquire a good understanding of both the culture in which the study will take place as well as the applicable legal norms and ethics framework and procedures. They should also become familiar with the resources available in the locations where the study will be implemented, so that referrals can be made if necessary (Ruiz-Casares, 2013). Training, coupled with ongoing self-questioning of their own assumptions and exchange of perspectives among team members can facilitate methodological adjustments to better respond to each participating culture (Fisher et al., 2002).
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Meaningful participation of communities and individuals Shared ownership and ongoing, respectful dialogue (on the ethical challenges of mental health studies) among scientist, participants, and community stakeholders may enhance the ethical and scientific quality of research (DuBois, 2005b) as well as research governance (Larkin, de Casterle´, & Schotsmans, 2008). This exchange may take many different forms. Participatory research approaches that include a diverse group of community members as co-investigators in the design, implementation, and dissemination of research are recommended despite being more time consuming. Valuable community input may also be obtained through participation in focus group discussions and local panels. As Garrafa and Lorenzo (2008) advocate, there is a need to open up “democratic spaces for social auditing” of research endeavors (e.g., through the creation of national commissions for clinical trials). For example, prior to conducting a large child protection survey in Liberia, a local Advisory Committee was convened to regularly discuss ethical (e.g., clarify locally-appropriate IC procedures, desired benefits, and risks of concern) and methodological (e.g., focus group protocols and recruitment) issues (Ruiz-Casares, 2011b). Collaborative partnerships may contribute to scientific and ethical merit, as well as to identifying resources and building networks of support so that assistance can be offered to research participants in need and to facilitate dissemination of research findings. These partnerships, for example, were particularly crucial to justify depression research other than screening (Thombs et al., 2012) in contexts where mental health services were not readily available (Ruiz-Casares, 2013). Increasing community consultation and collaboration is particularly needed to regain the trust of groups historically marginalized or mistreated by science (e.g., the African American community as a result of the Tuskegee study). The selection of stakeholders who may adequately represent the views and interests of the population under study requires a good understanding of each community’s social fabric. For example, in many communities political leaders or tribal councils may represent the particular culture and mental health concerns of individual participants. Mabaraza (traditional East African community assemblies) in Western Kenya, for instance, advocate for community consent and decisionmaking about research (Vreeman et al., 2012). Special attention is needed to ensure meaningful representation of the views and interests of marginalized/ vulnerable groups within communities (e.g., children and adolescents) as concerns for their wellbeing may well lead to overprotection and gatekeeping out of mental health research without equal recognition of their need for research and their right to participation (Arnold et al., 1995; Graham & Fitzgerald, 2010; Powell, Fitzgerald, Taylor, & Graham, 2012). Adult gatekeepers can also use their power to censor young people (Masson, 2004). Similarly, true collaborative research requires a well-balanced consideration and distribution of the needs, benefits, and obligations of all scientists and institutions involved and not only of those from resource-rich settings.
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Strategies to develop and stimulate mental health research globally Research partnerships and partnerships to strengthen capacity for GMHR In contrast with public and international health approaches, successful global mental health solutions often require global cooperation. This reflects a shift in philosophy and attitude that emphasizes the mutuality of real partnership, a pooling of experience and knowledge, and a two-way flow between developed and developing countries. Global health thus uses the resources, knowledge, and experience of diverse societies to address health challenges throughout the world. (Koplan et al., 2009, pp. 1994–1995)
Some of the proposed models of collaboration aim to participate in research development that will reinforce health policy and clinical services with solid evidence; others aim to build mental health research capacity in low-resource settings. The former may be done by means of training and supporting local researchers, and promoting the utilization of research findings by decision-makers at all levels. The latter may be done through long-term partnerships (e.g., between institutions in high-, low-, and middle-income countries),1 structured programs, and monitored training and mentorship of research staff at every career stage (Crump, Sugarman, & the Working Group on Ethics Guidelines for Global Health Training, 2010; Fricchione et al., 2012; Thornicroft, Cooper, Van Bortel, Kakuma, & Lund, 2012). The ethical issues associated with such research and service training initiatives need to be explicitly addressed through, for example, the development of ethical guidelines and formal ethical guidance (Crump & Sugarman, 2008). Mutual and reciprocal benefit as a goal for both sending and host institutions is further emphasized by the Working Group on Ethics Guidelines for Global Health Training (Crump et al., 2010). The core research content and skills to be taught to all researchers (i.e., from both host and sending institutions) should include ethical and human rights frameworks and procedures, applicable legal norms, critical thinking/reading and research methods, cultural competency/local customs, and the sociocultural, economic, and political context of research wherever research will be conducted (Shah, Nodell, Montano, Behrens, & Zunt, 2010). In addition to formal training, it is advisable to create safe spaces for reflection and dialogue on the scientific and ethical principles relevant to mental health research and the cultural, social, and other factors that may facilitate or hinder the conditions under study. Strengthened mental health research capacity in Minority settings (including low-resource settings within the Majority world) is not only needed to advance medical science but may lead to increased attention to understudied conditions (i.e., diseases afflicting Minority settings) and research publication equity (Sumathipala, Siribaddana, & Patel, 2004).
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Political will and access to resources Political will and lack of appreciation of the importance of ethical conduct of research and clinical practice are major constraints to the consolidation of ethical practice. Anya and Raine (2008) talk about the need for a “cultural shift” because “if clinicians and health-care workers do not believe ethical issues in clinical care to be relevant or important to them, they are unlikely to change their practice within the isolated context of a research study” (p. 1595). High-level commitments are needed to establish and regulate standards for ethical practice, and to implement and monitor these standards. Access to both resources for research and research findings is also essential to advancing a GMHR agenda. In line with the principle of shared benefits and risks, there is a need to make prestigious scientific publications and research infrastructure available to researchers in low-resource countries. Greater dialogue around access to products under investigation and other forms of benefits is needed among stakeholders (Lairumbi, Michael, Fitzpatrick, & English, 2011; Lairumbi, Parker, Fitzpatrick, & English, 2012). Mentoring on writing for publication as well as linguistic assistance for those with limited command of English or other major publishing languages may increase the amount and quality of manuscripts authored by scientists from Minority world countries.
Conclusions GMHR is a much-needed tool towards reducing disparities in mental health outcomes and access to services. In order to develop locally appropriate strategies and effective solutions across cultural settings and health systems, the views and circumstances of ethno-cultural and disadvantaged communities in the Majority and Minority world need to be considered. Normative regulations in research that reflect the socioeconomic and cultural contexts of each country also need to be developed and enforced. Legal and procedural norms, however, cannot replace ethical principles and reflection (DuBois, 2008). In fact, I have here advocated for increased attention to personal integrity and ethics in the development and instruction of GMHR. Training of researchers and stakeholders in research ethics and the creation of spaces for ethical reflection and dialogue are needed in both Minority and Majority world contexts. A contextualized understanding of the fundamental ethical principles of autonomy, beneficence, non-maleficence, and justice provides a framework for the development of research projects, regulations, and training. This is particularly relevant in GMHR, whereby the people and communities involved often live in countries without clear legal and ethical frameworks and Minority country regulations may be inadequate in international research (DuBois, 2005a). Guidelines for the conduct of culturally responsible GMHR include the development and implementation of culturally sensitive informed consent and disclosure policies and procedures, special attention to context when assessing
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research risks and benefits, and meaningful community and individual participation (Fisher et al., 2002). To stimulate the ethical conduct of GMHR, well-balanced collaborations, political will, and additional resources are needed. Stronger research capacity in resource-poor countries may expand the research agenda to include currently understudied conditions and sub-populations as well as diverse phenomena impinging on mental health and wellbeing globally (Benatar, 2002). Ultimately, as Benatar et al. (2003) advocated for the field of global health ethics more broadly, GMHR may offer an interdisciplinary space for human values such as those of solidarity, empathy, and civic responsibility to thrive (p. 138). Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Acknowledgments Thank you to Ce´cile Rousseau and two anonymous reviewers for their comments on an earlier version of this manuscript. An earlier version of this paper was presented at the McGill Advanced Study Institute on Cultural Psychiatry held in Montreal in July 2012.
Note 1. This may include partnerships among clinicians and/or researchers and locally based research groups and networks.
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Mo´nica Ruiz-Casares, PhD, is an Assistant Professor in the Division of Social and Transcultural Psychiatry and the Centre for Research on Children and Families at McGill University. She is also a Scientific Advisor at the Centre de Sante´ et des
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Services Sociaux de la Montagne in Montreal, where she evaluates health and social programs with ethno-culturally diverse families. Her published works focus on children’s rights, protection, and wellbeing cross-culturally and on ethical and methodological issues involved in research with children. She leads mixed-methods studies related to child protection and wellbeing, mainly in contexts of parent–child separation such as children home alone in Canada and children in alternative care in Namibia, Laos, and Liberia.
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