In accord with Healthy People 2020 goals, the elimination of lesbian, gay, bisexual, transgender, queer, and questioning (LGBTQQ) health disparities will require community-level strategies to address stigma, discrimination, and prejudice linked to poor health. We explored how young sexual minority women (YSMW) define LGBTQQ community, community connection, community engagement, and community tensions because these concepts have implications for development and evaluation of health disparities interventions. A total of 30 YSMW (aged 18-24 years) from Michigan participated in semistructured, in-depth interviews. Participants varied by sexual identity, residency, and race/ethnicity. We analyzed transcribed interviews using thematic analysis and compared emergent themes across sexual identity, residency, and race/ethnicity. Women described community connection in terms of organizational involvement, participation in LGBTQQ spaces, and collective social identity. Participants noted how community connections were linked to stigma towards the LGBTQQ community. YSMW highlighted how divisive tensions exist within subgroups constituting the LGBTQQ community, hindering opportunities for social advocacy, unified policy priorities, and community-level interventions. The heterogeneity of YSMW's experiences identifying with the LGBTQQ community and engaging within LGBTQQ spaces suggest that researchers should attend to the role of community dynamics when developing health disparities interventions and policies. Efforts to reconcile tensions within the LGBTQQ community may strengthen and advance policymakers' ability to address sexuality-related disparities.
Linguistic and cultural differences can impede comprehension among potential research participants during the informed consent process, but how researchers and IRBs respond to these challenges in practice is unclear. We conducted in-depth interviews with 15 researchers, research ethics committee (REC) chairs and members from 8 different countries with emerging economies, involved in HIV-related research sponsored by HIV Prevention Trials Network (HPTN), regarding the ethical and regulatory challenges they face in this regard. In the interviews, problems with translating study materials often arose as major concerns. Four sets of challenges were identified concerning linguistic and cultural translations of informed consent documents and other study materials, related to the: (1) context, (2) process, (3) content and (4) translation of these documents. Host country contextual issues included low literacy rates, education (e.g., documents may need to be written below 5th grade reading level), and experiences with research, and different views of written documentation. Certain terms and concepts may not exist in other languages, or have additional connotations that back translations do not always reveal. Challenges arise because of not only the content of word-for-word, literal translation, but the linguistic form of the language, such as tone (e.g., appropriate forms of politeness vs. legalese, seen as harsh), syntax, manner of questions posed, and the concept of the consent); and the contexts of use affect meaning. Problems also emerged in bilateral communications – US IRBs may misunderstand local practices, or communicate insufficiently the reasons for their decisions to foreign RECs. In sum, these data highlight several challenges that have received little, if any, attention in past literature on translation of informed consent and study materials, and have crucial implications for improving practice, education, research and policy, suggesting several strategies, including needs for broader open-source multilingual lexicons, and more awareness of the complexities involved.
Little research has explored the possible effects of government institutions in emerging economies on ethical reviews of multinational research. We conducted semi-structured, in-depth telephone interviews with 15 researchers, Research Ethics Committees (RECs) personnel, and a government agency member involved in multinational HIV Prevention Trials Network (HPTN) research in emerging economies. Ministries of Health (MOH) or other government agencies often play pivotal roles as facilitators or barriers in the research ethics approval process. Government agency RECs reviewing protocols may face particular challenges, as they can lack resources, be poorly organized, have inconsistent review processes and, limited expertise, use differing definitions of national interests, including upholding national reputation and avoiding potential exploitation and stigma of the country’s population. The MOH/governmental review body may be affected by power dynamics and politics in study reviews; may consider issues both related and unrelated to research ethics as understood elsewhere; and may prioritize particular diseases, treatments, or interventions over other topics/types of research. Poor communication and deeply-rooted tensions may exist between sponsor and host countries, impeding optimal interactions and reviews. Investigators must understand and plan for the potential effects of governmental agencies on multinational collaborative research, including preserving adequate time for agency review, and contacting these agencies beforehand to address issues that may arise. Better understanding of these issues can aid and advance appropriate global scientific collaboration.
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