Parental/caregiver influence on sexual risk behaviors among HIV-positive young people in Kinshasa, the Democratic Republic of the Congo

Young people make up more than 60% of the population in the Democratic Republic of the Congo (DRC) and have an HIV prevalence of over 1%. Parents/caregivers of HIV-positive young people play an important role in helping their children understand how their decisions affect their health and the health of others. The first aim of this research was to examine the relationships between parental/caregiver monitoring, social support, and sexual risk behaviors for young people living with HIV (YPLWH) in Kinshasa, DRC. Quantitative data collected from 103 YPLWH, age 14-24 and who reported ever having sex, were analyzed. The second aim was to describe the norms and patterns of communication about sex between parents/caregivers and their HIV-positive child through 52 semi-structured interviews of caregivers. In the first aim, the majority of participants reported low parental/caregiver monitoring (68%) and low social support (68%). Among all young people, 55 (53.4%) reported no sex in the past 12 months, 29 (28.2%) reported protected sex at last intercourse, and 19 (18.4%) reported unprotected sex at last intercourse. Social support was an effect modifier in the relationship between monitoring and sexual behavior, with marginal significance (OR = 1.7, 95%CI: 0.98-2.79). This interaction effect weakened when adjusted for time-since-HIV-diagnosis (OR=1.6, 95%CI: 0.91-2.75). In the second aim, reasons for communication about sex, including HIV disclosure and child attributes and content of communication, including sexual risk, HIV status disclosure and other risk behaviors, were identified. Reasons for communication were similar for parents/caregivers with children who knew their HIV status compared to those with children who did not know; however, most parents/caregivers waited until after puberty or until the child already started having sex to talk about sex. Parents/caregivers focused their conversations on the risks associated with sex, though males were told to be more careful compared to females, who were told to avoid sexual contact. For children who did not know their status, some parents/caregivers used scare tactics to influence their child's sexual behavior, even mentioning that they could contract HIV. These findings can inform culturally sensitive strategies for transmission risk interventions among young people living with HIV

Acceptance of mobile health in communities underrepresented in biomedical research: Barriers and ethical considerations for scientists

Background The rapid expansion of direct-to-consumer wearable fitness products (eg, Flex 2, Fitbit) and research-grade sensors (eg, SenseCam, Microsoft Research; activPAL, PAL Technologies) coincides with new opportunities for biomedical and behavioral researchers. Underserved communities report among the highest rates of chronic disease and could benefit from mobile technologies designed to facilitate awareness of health behaviors. However, new and nuanced ethical issues are introduced with new technologies, which are challenging both institutional review boards (IRBs) and researchers alike. Given the potential benefits of such technologies, ethical and regulatory concerns must be carefully considered. Objective Our aim was to understand potential barriers to using wearable sensors among members of Latino, Somali and Native Hawaiian Pacific Islander (NHPI) communities. These ethnic groups report high rates of disparate health conditions and could benefit from wearable technologies that translate the connection between physical activity and desired health outcomes. Moreover, these groups are traditionally under-represented in biomedical research. Methods We independently conducted formative research with individuals from southern California, who identified as Latino, Somali, or Native Hawaiian Pacific Islander (NHPI). Data collection methods included survey (NHPI), interview (Latino), and focus group (Somali) with analysis focusing on cross-cutting themes. Results The results pointed to gaps in informed consent, challenges to data management (ie, participant privacy, data confidentiality, and data sharing conventions), social implications (ie, unwanted attention), and legal risks (ie, potential deportation). Conclusions Results shed light on concerns that may escalate the digital divide. Recommendations include suggestions for researchers and IRBs to collaborate with a goal of developing meaningful and ethical practices that are responsive to diverse research participants who can benefit from technology-enabled research methods

Terms Used for People Living With HIV in the Democratic Republic of the Congo

For this study we conducted in-depth interviews with 29 youth living with HIV (YLWH) and key informant interviews with 8 HIV care/support providers. We describe terms used to portray people living with HIV (PLWH) in Kinshasa, Democratic Republic of the Congo. Labels commonly used, mostly derogatory, described PLWH as walking corpses, dangers to others, or people deserving to die before others get infected. Blame and other accusations were directed at PLWH through anchoring or objectification. Being labeled sometimes made these youth suffer in silence, afraid to disclose their status, or avoid performing actions in public, preferring to let others do them. YLWH need psychosocial support to mitigate the harmful effects of these labels and strengthen their coping skills, whereas community, institutional, and national efforts are needed for stigma reduction

Characterization of metabolic syndrome among diverse Hispanics/Latinos living in the United States: Latent class analysis from the Hispanic Community Health Study/Study of Latinos (HCHS/SOL)

Empirical investigation of the adequacy of metabolic syndrome (MetS) diagnostic criteria, and whether meaningful subtypes of MetS exist, is needed among Hispanics/Latinos

GA4GH: International policies and standards for data sharing across genomic research and healthcare.

The Global Alliance for Genomics and Health (GA4GH) aims to accelerate biomedical advances by enabling the responsible sharing of clinical and genomic data through both harmonized data aggregation and federated approaches. The decreasing cost of genomic sequencing (along with other genome-wide molecular assays) and increasing evidence of its clinical utility will soon drive the generation of sequence data from tens of millions of humans, with increasing levels of diversity. In this perspective, we present the GA4GH strategies for addressing the major challenges of this data revolution. We describe the GA4GH organization, which is fueled by the development efforts of eight Work Streams and informed by the needs of 24 Driver Projects and other key stakeholders. We present the GA4GH suite of secure, interoperable technical standards and policy frameworks and review the current status of standards, their relevance to key domains of research and clinical care, and future plans of GA4GH. Broad international participation in building, adopting, and deploying GA4GH standards and frameworks will catalyze an unprecedented effort in data sharing that will be critical to advancing genomic medicine and ensuring that all populations can access its benefits

Geographical and temporal distribution of SARS-CoV-2 clades in the WHO European Region, January to June 2020

We show the distribution of severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) genetic clades over time and between countries and outline potential genomic surveillance objectives. We applied three genomic nomenclature systems to all sequence data from the World Health Organization European Region available until 10 July 2020. We highlight the importance of real-time sequencing and data dissemination in a pandemic situation, compare the nomenclatures and lay a foundation for future European genomic surveillance of SARS-CoV-2

Acceptance of Mobile Health in Communities Underrepresented in Biomedical Research: Barriers and Ethical Considerations for Scientists

Background The rapid expansion of direct-to-consumer wearable fitness products (eg, Flex 2, Fitbit) and research-grade sensors (eg, SenseCam, Microsoft Research; activPAL, PAL Technologies) coincides with new opportunities for biomedical and behavioral researchers. Underserved communities report among the highest rates of chronic disease and could benefit from mobile technologies designed to facilitate awareness of health behaviors. However, new and nuanced ethical issues are introduced with new technologies, which are challenging both institutional review boards (IRBs) and researchers alike. Given the potential benefits of such technologies, ethical and regulatory concerns must be carefully considered. ObjectiveOur aim was to understand potential barriers to using wearable sensors among members of Latino, Somali and Native Hawaiian Pacific Islander (NHPI) communities. These ethnic groups report high rates of disparate health conditions and could benefit from wearable technologies that translate the connection between physical activity and desired health outcomes. Moreover, these groups are traditionally under-represented in biomedical research. MethodsWe independently conducted formative research with individuals from southern California, who identified as Latino, Somali, or Native Hawaiian Pacific Islander (NHPI). Data collection methods included survey (NHPI), interview (Latino), and focus group (Somali) with analysis focusing on cross-cutting themes. ResultsThe results pointed to gaps in informed consent, challenges to data management (ie, participant privacy, data confidentiality, and data sharing conventions), social implications (ie, unwanted attention), and legal risks (ie, potential deportation). Conclusions Results shed light on concerns that may escalate the digital divide. Recommendations include suggestions for researchers and IRBs to collaborate with a goal of developing meaningful and ethical practices that are responsive to diverse research participants who can benefit from technology-enabled research methods. Trial RegistrationClinicalTrials.gov NCT02505165; https://clinicaltrials.gov/ct2/show/NCT02505165 (Archived by WebCite at http://www.Webcitation.org/6r9ZSUgoT

Sub-population differences in the relationship between the neighborhood environment and Latinas' daily walking and vehicle time.

BackgroundOver 60% of Latinas report not meeting moderate to vigorous physical activity (MVPA) guidelines of 150 minutes/week. Ecological models of health posit that intrapersonal and environmental factors interact with one another to influence physical activity. Understanding their interactions in relation to transportation behaviors may inform interventions to increase Latinas' physical activity.PurposeTo 1) objectively estimate walking and vehicle time in Latinas, 2) examine the association of, and interactions between, intrapersonal (socio-demographics and weight status) and neighborhood environmental correlates with objective daily walking and vehicle time.MethodsA subsample of Latinas (n=87) participating in a health intervention wore an accelerometer and GPS device for at least two valid wear days at baseline. The Personal Activity Location and Measurement System (PALMS) software estimated daily walking and vehicle time. Participants' anthropometrics were measured, and they completed a survey assessing socio-demographic characteristics and perceived neighborhood environment. Generalized linear mixed models examined main effects and interactions of four intrapersonal and five environmental factors on daily walking and vehicle time.ResultsOn average, participants walked 16 min/day and spent 69 min/day in a vehicle. Overweight/obesity was negatively associated with walking time (p=.04) and positively associated with vehicle time (p=0.01). Household income was positively associated with vehicle time (p=0.02). For daily walking time, two interactions were significant: perceived access to destinations X household income (p=0.01), and perceived sidewalk maintenance X acculturation (p= 0.01). For daily vehicle time, two interactions were significant: perceived access to destinations X weight status (p<0.001), and perceived safety from crime X education (p=0.01).ConclusionLatinas participated in relatively low walking time and high amounts of vehicle time. Findings suggest intrapersonal sub-group differences in the association of the neighborhood environment with walking and vehicle time. Improving neighborhood environments to promote walking and reduce vehicle time may help improve Latinas' overall physical activity