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In citizen science, in-depth interviews have advanced the understanding of project leaders’ and citizen scientists’ objectives, motivations, attitudes, and concerns. The issues encountered by researchers conducting in-depth interviews in citizen science are likely not unique to this field. However, these issues can surface and play out in distinct ways that depend on the scientific and sociopolitical circumstances of citizen science communities and projects.Researchers’ experiences conducting in-depth interviews are the subject of a growing literature that describes considerations for conducting research with discrete populations. We aim to contribute to this literature by describing salient practical, ethical, and legal issues to consider when interviewing biomedical citizen scientists, with a focus on bottom-up biomedical citizen scientists who have loose or no affiliations with traditional scientific institutions. These issues concern how to define the interview population; earn trust and demonstrate trustworthiness given past treatment of bottom-up biomedical citizen scientists by traditional researchers and institutions; adapt research practices to the strong culture of openness that characterizes bottom-up biomedical citizen science; and manage potential safety concerns. This essay draws on our own experiences and those of other qualitative researchers and makes suggestions for addressing these issues in ways intended to protect study integrity and demonstrate respect for participants. We also identify questions that would benefit from broad input and continued study. Our objectives in sharing these lessons learned are to support future research and to improve understanding of this exciting participatory space.

BACKGROUND: Federal law requires most school districts to develop school wellness policies (SWPs), which state agencies assist in by providing templates. Templates provide standard language, which districts may edit for numerous reasons. We aimed to identify the frequency/consistency of template usage and identify the types of edits districts make when using SWP templates. METHODS: We identified SWPs (N = 117) and templates (N = 2) from districts in 1 Texas public health region. We developed template specific coding guides, which allowed us to examine the frequency SWPs used template text within multiple areas (eg, nutrition goals, reporting). We also collected/categorized SWP edits from the template text and conducted a thematic analysis of locally developed SWPs and SWP templates. RESULTS: Of 117 SWPs, 81.2% used a 2020 template, 13.7% used a 2005 template, and 5.1% created their own SWP. Across template-based SWPs, 44 content edits (0.4 per policy) occurred in 9 categories. Thematic analysis revealed: (1) locally developed SWPs created an informed mission statement linked to their goals; (2) Locally developed SWPs provided details that the current template includes in wellness plans. CONCLUSIONS: Most districts used exact template language when writing their SWP. Adding spaces where districts can specify details could improve SWP content.

BackgroundLow literacy of study participants in Sub - Saharan Africa has been associated with poor comprehension during the consenting process in research participation. The concerns in comprehension are far greater when consenting to participate in genomic studies due to the complexity of the science involved. While efforts are made to explore possibilities of applying genomic technologies in diseases prevalent in Sub Saharan Africa, we ought to develop methods to improve participants’ comprehension for genomic studies. The purpose of this study was to understand different approaches that can be used to seek consent from individuals with low literacy in Sub-Saharan African countries in genomic research to improve comprehension.MethodsUsing qualitative study design, we conducted focus-group discussions, in-depth interviews and participant observations as data collection methods. This study was embedded in a hospital based genomic study on Sickle Cell Disease at Muhimbili National Hospital in Tanzania. Thematic content analysis was used to analyse the transcripts and field notes.ResultsFindings from this study show that literacy level has little influence on understanding the research details. According to the participants of this study, the methods used to provide information, the language, and time spent with the study participants were the key factors influencing understanding. The availability of group sessions held before individual consent to allow for a detailed questions and answers format was agreed to be the best method to facilitate the comprehension.ConclusionThe quality of the consenting process of participants will be influence by a number of factors. The type of research consented for, where the research will be implemented and who are the potential study participants are amongst the factors that need to be assessed during the consenting. Measures to improve participants’ comprehension need to be developed when consenting participants with low literacy level in genomic studies.

Background From 2006 to 2011, the City of Houston received nearly 200 community complaints about air pollution coming from some metal recycling facilities. The investigation by the Houston Health Department (HHD) found that while operating within legal limits, emissions from facilities that use torch cutting, a technique generating metal aerosols, may increase health risks for neighboring residents. Choosing to use collaborative problem solving over legislative rulemaking, HHD reached out to The University of Texas Health Science Center at Houston (UTHealth) to further evaluate and develop plans to mitigate, if necessary, health risks associated with metal emissions from these facilities. Methods Utilizing a community-based participatory research approach, we constituted a research team from academia, HHD and an air quality advocacy group and a Community Advisory Board (CAB) to draw diverse stakeholders (i.e., frustrated and concerned residents and wary facility managers acting within their legal rights) into an equitable, trusting and respectful space to work together. Next, we investigated metal air pollution and inhalation health risks of adults living near metal recyclers and ascertained community views about environmental health using key informant interviews, focus groups and surveys. Finally, working collaboratively with the CAB, we developed neighborhood-specific public health action plans to address research findings. Results After overcoming challenges, the CAB evolved into an effective partnership with greater trust, goodwill, representation and power among members. Working together to translate and share health risk assessment results increased accessibility of the information. These results, coupled to community survey findings, set the groundwork for developing and implementing a stakeholder-informed action plan, which included a voluntary framework to reduce metal emissions in the scrap yard, improved lines of communication and environmental health leadership training. Tangible outcomes of enhanced capacity of our community and governmental partners included trained residents to conduct door-to-door surveys, adaptation of our field training protocol and survey by our community partner and development of a successful HHD program to engage residents to improve environmental health in their neighborhood. Conclusions Academic-government-community-industry partnerships can reduce environmental health disparities in underserved neighborhoods near industrial facilities.

On Sunday, 17 March 2019, a fire erupted at the Intercontinental Terminals Company (ITC, Deer Park, La Porte, TX, USA), resulting in a large fire that blazed for several days. In response, we rapidly launched disaster response activities to monitor air pollutants (total volatile organic compounds (TVOCs), fine particulate matter (PM2.5), black carbon (BC), and ultra-fine particles (UFPs) during the fire in two affected communities. To assess immediate health effects and residential air quality, we also rapidly launched a pilot study, the Deer Park Chemical Fire (DeeP Fire) Study, in which we administered health surveys and installed samplers to monitor air quality outdoors of resident homes for up to six weeks. In both communities, mean ambient concentrations of PM2.5, BC and TVOCs were higher during the first week of the fire than a week after it was extinguished. Thirteen residents participated in the DeeP Fire Study. Most residents reported experiencing respiratory symptoms and some reported being bothered by at least one post-traumatic stress disorder symptom during the fire and two weeks afterwards. In the months following the fire, the 7-day mean ambient concentration of benzene from 12 homes was 0.13 ± 0.10 parts per billion (ppb) and the 6-week mean ambient concentrations of PM2.5 and TVOCs were 13 ± 6 µg/m3 and 108 ± 98 ppb, respectively. All residents requested and received individualized air monitoring reports. Surveillance systems that enable real-time monitoring of the environmental health impact during a major industrial incident are needed to provide timely information to adequately respond to a disaster in the future.

The lack of data on condom and lubricant use among African men who have sex with men (MSM) hinders prevention efforts. We describe use, knowledge, and access to lubricants in Dar es Salaam and Tanga, Tanzania. Data were collected in 2012 and 2013 from a cross-sectional survey of 200 MSM in Dar es Salaam and 100 MSM in Tanga, Tanzania. The most common reason for not using condoms was dislike of condoms. Two-thirds of the men reported always using a lubricant for anal sex. Results showed that: fewer men who have sex with both men and women (MSMW) know about lubricants; more MSM look for, have difficulty finding, and find lubricants to be expensive; and MSM use lubricants to facilitate penetration. MSMW commonly receive their lubricants from their sexual partner, while MSM got them from friends and pharmacies. HIV-negative MSM used lubricants to facilitate penetration and reduce pain. HIV-positive MSM are likely to get their lubricants from pharmacies or friends. MSMW use Vaseline® significantly more than MSM as a lubricant. Results suggest that HIV prevention knowledge among MSM is greater, so HIV prevention efforts should emphasise carrying water-based lubricant among MSMW. Consequently, there is an opportunity to co-market condoms and water-based lubricants.

A report on the Second H3Africa Ethics Consultation Meeting, which was held in Livingstone, Zambia on 11 May 2015. The meeting demonstrated considerable evolution by African Research Ethics Committees on thinking about broad consent as a consent option for genomics research and biobanking. The meeting concluded with a call for broader engagement with policy makers across the continent in order to help these recognise the need for guidance and regulation where these do not exist and to explore harmonisation where appropriate and possible.

Injection of heroin has become widespread in Dar es Salaam, Tanzania and is spreading throughout the country. To prevent potential bridging of HIV epidemics, the Tanzanian government established a methadone maintenance treatment (MMT) clinic in February 2011. We assess the effect of MMT on health-related quality of life (HRQOL) and examine factors, particularly HIV infection and methadone dose, associated with changes in HRQOL.This study utilized routine data on clients enrolling in methadone from February 2011 to April 2012 at Muhimbili National Hospital. Change in physical (PCS) and mental health (MCS) composite scores, as measured by the SF-12 tool, were the primary outcomes. Backward stepwise linear regression, with a criterion of p0.2 was used to identify baseline exposure variables for inclusion in multivariable models, while adjusting for baseline scores.A total of 288 MMT clients received baseline and follow-up assessments. Mean methadone dose administered was 45mg (SD±25) and 76 (27%) were confirmed HIV-positive. Significant improvements were observed in PCS and MCS, with mean increases of 15.7 and 3.3, respectively. In multivariable models, clients who had previous poly-substance use with cocaine [p=0.040] had a significantly higher mean change in PCS. Clients who were living with HIV [p=0.002]; satisfied with current marital situation [p=0.045]; had a history of suicidal thoughts [p=0.021]; and previously experienced cognitive difficulties [p=0.012] had significantly lower mean change in PCS. Clients with shorter history of heroin use [p=0.012] and who received higher methadone doses [p=0.028] had significantly higher mean change in MCS, compared to their counterparts.Aspects of mental and physical health, risk behaviors and quality of life among drug users are intertwined and complex. Our research revealed positive short-term effects of MMT on HRQOL and highlights the importance of sustained retention for optimal benefits. Comprehensive supportive services in addition to provision of methadone are needed to address the complex health needs of people who inject drugs.

Contrary to popular belief, policies on drug use are not always based on scientific evidence or composed in a rational manner. Rather, decisions concerning drug policies reflect the negotiation of actors’ ambitions, values, and facts as they organize in different ways around the perceived problems associated with illicit drug use. Drug policy is thus best represented as a complex adaptive system (CAS) that is dynamic, self-organizing, and coevolving. In this analysis, we use a CAS framework to examine how harm reduction emerged around heroin trafficking and use in Tanzania over the past thirty years (1985-present). This account is an organizational ethnography based on of the observant participation of the authors as actors within this system. We review the dynamic history and self-organizing nature of harm reduction, noting how interactions among system actors and components have coevolved with patterns of heroin us, policing, and treatment activities over time. Using a CAS framework, we describe harm reduction as a complex process where ambitions, values, facts, and technologies interact in the Tanzanian socio-political environment. We review the dynamic history and self-organizing nature of heroin policies, noting how the interactions within and between competing prohibitionist and harm reduction policies have changed with patterns of heroin use, policing, and treatment activities over time. Actors learn from their experiences to organize with other actors, align their values and facts, and implement new policies. Using a CAS approach provides researchers and policy actors a better understanding of patterns and intricacies in drug policy. This knowledge of how the system works can help improve the policy process through adaptive action to introduce new actors, different ideas, and avenues for communication into the system.

Physical inactivity is an ongoing challenge in the US that contributes to at least 4 of the leading causes of death: heart disease, stroke, diabetes and cancer.1 Self-report measures suggest that nearly 50% of the adult population fail to meet physical activity recommendations,2 and objective measures suggest that only 5% of adults actually meet aerobic physical activity recommendations of 30 minutes per day on 5 or more days per week.3 Despite increases in physical activity over the past decade,4,5 the majority of Americans still do not meet guideline minimums. The problem is particularly evident among African Americans, or non-Hispanic Blacks, and Hispanics, who are less likely to meet physical activity guidelines and who engage in less physical activity than non-Hispanic Whites do.4,6,7 Thus, in the US and among ethnic minorities, primary prevention efforts aimed at reducing cancer and cardiovascular disease risk have included strategies to increase physical activity adoption and promote physical activity maintenance.8 Although several physical activity interventions have been developed for large population groups, few have succeeded among ethnic minority adults, suggesting a lack of suitability and need to target additional, ethnically relevant correlates related to physical activity.9–11 Theoretical frameworks, such as Social Cognitive Theory and the Transtheoretical Model, have identified intrapersonal factors related to physical activity (eg, biologic and physiologic characteristics, self-efficacy, beliefs, attitudes or knowledge related to physical activity) and interpersonal relationships (eg, support from family and friends to do physical activity regularly) as important correlates of physical activity. Previous research has shown that psychosocial factors, including intrapersonal and interpersonal factors, are related and contribute significantly to behavioral mechanistic pathways for physical activity adoption and maintenance in African Americans and Hispanics.12 Although psychosocial factors related to physical activity often are included as intervention components based on theoretical frameworks, the effectiveness of interventions based on improving psychosocial factors as pathways to physical activity adoption or maintenance remains unclear.13–15 For example, Resnick et al16 found that an intervention which promoted self-efficacy through group exercise sessions, education materials, and discussions led to increased physical activity among older African American women.17 However, other studies in African Americans reported that interventions that included one or more psychosocial factors did not lead to hypothesized increases in physical activity.14,18 Because the reported findings are inconclusive, it is important to understand which psychosocial factors are effective for physical activity adoption and whether these psychosocial factors individually or in combination lead to increases in physical activity adoption in African Americans and Hispanics. Psychosocial factors are usually linked to a particular theory or theory-related construct or to multiple theories and/or constructs; they can vary from study to study and may be included individually or in combination with other psychosocial factors within a study. Because of these variations, a systematic review is needed to improve understanding of the theoretical foundations of interventions and to identify the psychosocial factors that are found to be effective for physical activity engagement in African American and Hispanic adults. Previous systematic reviews that looked at the effectiveness of physical activity interventions in ethnic minority groups mostly focused on environmental interventions versus interventions that included psychosocial factors.19–22 Studies that included psychosocial factors as intervention components looked at them in the context of overall behavior change related to obesity and weight loss and were not specific to physical activity.23 This systematic review goes beyond previous reviews by examining the use of theory in physical activity interventions, focusing on interventions that target psychosocial factors related to physical activity, and synthesizing the results of interventions that address these factors. The purposes of this study were to summarize (1) the results of physical activity interventions that include psychosocial factors to increase physical activity among adult African Americans and Hispanics in randomized controlled trials; and (2) the use of theory and theoretical constructs in physical activity interventions.

Objectives To assess HIV and sexually transmitted infection (STI) prevalence and associated risk factors in men who have sex with men (MSM) in two cities in mainland Tanzania. Methods We conducted respondent-driven sampling of 300 MSM in Dar es Salaam and Tanga. Results In Dar es Salaam, 172 (86%) men (median age 23, IQR 21–28) consented to HIV/STI testing, and 30.2% were HIV seropositive. Only five reported a previous positive HIV test: >90% were new HIV detections. 2.5% were syphilis-exposed and none hepatitis B positive, but 21.4% had a curable STI. Over 90% of the gonorrhoea and chlamydia was rectal. In Tanga, 11.1% of MSM were HIV seropositive, 8% hepatitis B positive and 0% were syphilis-exposed, with 4.4% having a curable STI. Predictors of HIV infection were number of MSM known, city, identifying as gay and having first sex with a man. Predictors for STIs were recent unprotected receptive anal intercourse, and number of MSM seen in the last month. 30% of the sample reported that they sold sex. There was no significant association between HIV and STI infection. Conclusions HIV and STI rates were substantially lower in MSM in a provincial city than in a large metropolis and rates appear to depend on larger numbers of MSM known. Most HIV detected were new cases, and there was a high burden of asymptomatic curable rectal STIs (>1 in 5 MSM). Owing to stigma, MSM may not report homosexuality and thus not have rectal STIs treated. High need for tailored HIV testing and STI screening and treatment of MSM in Tanzania is apparent.

H3Africa is developing capacity for health-related genomics research in Africa

Background: Human microbiome research has the potential to transform the practice of medicine, fundamentally shifting the ways in which we think not only about human health, illness and disease, but also about clinical practice and public health interventions. Drawing from a larger qualitative study on ethical, legal and social dimensions of human microbiome research, in this article, we document perspectives related to the translation of human microbiome research into clinical practice, focusing particularly on implications for health, illness and disease. Methods: We conducted 60 in-depth, semi-structured interviews (2009-2010) with 63 researchers and National Institutes of Health project leaders (‘investigators') involved with human microbiome research. The interviews explored a range of ethical, legal and social implications of human microbiome research, including investigators' perspectives on potential strategies for translating findings to clinical practice. Using thematic content analysis, we identified and analyzed emergent themes and patterns. Results: We identified 3 themes: (1) investigators' general perspectives on the clinical utility of human microbiome research, (2) investigators' perspectives on antibiotic use, overuse and misuse, and (3) investigators' perspectives concerning future challenges of translating data to clinical practice. Conclusion: The issues discussed by investigators concerning the clinical significance of human microbiome research, including embracing a new paradigm of health and disease, the importance of microbial communities, and clinical utility, will be of critical importance as this research moves forward.

This study examined the association between the blood-sharing practice of 'flashblood' use and demographic factors, human immunodeficiency virus (HIV) status and variables associated with risky sex and drug behaviors among female injecting drug users. Flashblood is a syringe-full of blood passed from someone who has just injected heroin to someone else who injects it in lieu of heroin.A cross-sectional study.Dar es Salaam, Tanzania.One hundred and sixty-nine female injecting drug users (IDUs) were recruited using purposive sampling for hard-to-reach populations.The association between flashblood use, demographic and personal characteristics and risky sex and drug use variables was analyzed by t-test and chi(2) test. The association between flashblood use and residential neighborhood was mapped.Flashblood users were more likely to: be married (P = 0.05), have lived in the current housing situation for a shorter time (P0.000), have been forced as a child to have sex by a family member (P = 0.007), inject heroin more in the last 30 days (P = 0.005), smoke marijuana at an earlier age (P = 0.04), use contaminated rinse-water (P0.03), pool money for drugs (P0.03) and share drugs (P = 0.000). Non-flashblood users were more likely to live with their parents (P = 0.003). Neighborhood flashblood use was highest near downtown and in the next two adjoining suburbs and lowest in the most distant suburbs.These data indicate that more vulnerable women who are heavy users and living in shorter-term housing are injecting flashblood. The practice of flashblood appears to be spreading from the inner city to the suburbs.

Background U.S., Hispanic women have higher cervical cancer incidence rates than non-Hispanic Whites and African Americans and lower rates of cervical cancer screening. Knowledge, attitudes, and cultural beliefs may play a role in higher rates of infection of HPV and decisions about subsequent diagnosis and treatment of cervical cancer. Study aim To explore the level of HPV knowledge, attitudes, and cultural beliefs among Hispanic men and women on the Texas-Mexico border. Methodological Approach Informed by feminist ethnography, the authors used an interpretive approach to understand local respondents' concerns and interests. Focus group sessions were analyzed using thematic content analysis. Recruitment and sample Promotoras (lay health workers) recruited participants using convenience sampling methods. Group sessions were held in public service centers in Brownsville. Participants' ages ranged from 19 to 76 years. Methods analysis Focus group discussions were audio-recorded and transcribed in Spanish. Researchers read and discussed all the transcripts and generated a coding list. Transcripts were coded using ATLAS.ti 5.0. Key findings Participants had little understanding about HPV and its role in the etiology of cervical cancer. Attitudes and concerns differed by gender. Women interpreted a diagnosis of HPV as a diagnosis of cancer and expressed fatalistic beliefs about its treatment. Men initially interpreted a diagnosis of HPV as an indication of their partners' infidelity, but after reflecting upon the ambiguity of HPV transmission, attributed their initial reaction to cultural ideals of machismo. Men ultimately were interested in helping their partners seek care in the event of a positive diagnosis. Implications for practice Results suggest that understanding Hispanics' cultural norms and values concerning disease, sexuality, and gender is essential to the design and implementation of preventive interventions for HPV and cervical cancer.

Under-representation of minority populations, particularly African Americans, in HIV/AIDS research is problematic because African Americans bear a greater disease burden from HIV/AIDS. Studies of motivations for participating in research have emphasized factors affecting individuals’ willingness to participate and barriers to participation, especially in regard to HIV vaccine research. Little is known about how underserved minority drug users perceive research and their decisions to participate. This study describes African American drug users’ perceptions of research participation and their decisions to participate based on three kinds of hypothetical HIV/AIDS-related clinical studies. In-depth, qualitative interviews were conducted with 37 underserved, African American crack cocaine users, recruited from participants already enrolled in three different behavioral HIV prevention studies. Interviews were recorded, transcribed, coded for themes and sub-themes and analyzed using directed and conventional content analysis. Participants’ decisions to take part in research often involved multiple motivations for participating. In addition, decisions to participate were characterized by four themes: a desire for information; skepticism and mistrust of research and researchers; perceptions of medical care and monitoring within a study; and participant control in decisions to participate or decline participation. Lack of adequate information and/or medical care and monitoring within a study were related to mistrust, while the provision of information was viewed by some individuals as a right and acknowledgement of the participant’s contribution to the study. Participants perceived, rightly or wrongly, that medical monitoring would control some of the risks of a study. Participants also described situations of exerting control over decisions to enter or withdraw from a research study. Preliminary findings suggest that continuous communication and provision of information may enhance enrollment and adherence. Further exploration of decisions to participate in research will add to the understanding of this complex phenomenon and enhance the ability of individuals with HIV/AIDS to benefit from research.

Research with underserved minority drug users is essential to quality health care and prevention. Understanding how participants perceive risk in research is necessary to inform research regulators so that research protections are neither lax, exposing participants to harm, nor overly stringent, thereby denying access to beneficial research. Data from 37 semistructured interviews of underserved, African-American crack cocaine users, collected from February to May 2006 in a large, urban setting, were analyzed using content analysis. In three hypothetical studies, participants recognized risks as relative and articulated and evaluated specific risks. Research regulators may enhance the accuracy of risk assessment in research by incorporating the views of participants. Study implications and limitations are noted. Future research on risk perception in research participation is suggested.

Background Continued advances in human microbiome research and technologies raise a number of ethical, legal, and social challenges. These challenges are associated not only with the conduct of the research, but also with broader implications, such as the production and distribution of commercial products promising maintenance or restoration of good physical health and disease prevention. In this article, we document several ethical, legal, and social challenges associated with the commercialization of human microbiome research, focusing particularly on how this research is mobilized within economic markets for new public health uses. Methods We conducted in-depth, semi-structured interviews (2009–2010) with 63 scientists, researchers, and National Institutes of Health project leaders (“investigators”) involved with human microbiome research. Interviews explored a range of ethical, legal, and social dimensions of human microbiome research, including investigators’ perspectives on commercialization. Using thematic content analysis, we identified and analyzed emergent themes and patterns. Results Investigators discussed the commercialization of human microbiome research in terms of (1) commercialization, probiotics, and issues of safety, (2) public awareness of the benefits and risks of dietary supplements, and (3) regulation. Conclusion The prevailing theme of ethical, legal, social concern focused on the need to find a balance between the marketplace, scientific research, and the public’s health. The themes we identified are intended to serve as points for discussions about the relationship between scientific research and the manufacture and distribution of over-the-counter dietary supplements in the United States.