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Ethical considerations for biobanking and use of genomics data in Africa: a narrative review

Amoakoh-Coleman, Mary; Vieira, Dorice; Abugri, James
BACKGROUND:Biobanking and genomic research requires collection and storage of human tissue from study participants. From participants' perspectives within the African context, this can be associated with fears and misgivings due to a myriad of factors including myths and mistrust of researchers. From the researchers angle ethical dilemmas may arise especially with consenting and sample reuse during storage. The aim of this paper was to explore these ethical considerations in the establishment and conduct of biobanking and genomic studies in Africa. METHODS:We conducted a narrative synthesis following a comprehensive search of nine (9) databases and grey literature. All primary research study designs were eligible for inclusion as well as both quantitative and qualitative evidence from peer reviewed journals, spanning a maximum of 20 years (2000-2020). It focused on research work conducted in Africa, even if data was stored or analysed outside the region. RESULTS:Of 2,663 title and abstracts screened, 94 full texts were retrieved and reviewed for eligibility. We included 12 studies (7 qualitative; 4 quantitative and one mixed methods). Ethical issues described in these papers related to community knowledge and understanding of biobanking and genomic research, regulation, and governance of same by research ethics committees, enrolment of participants, types of informed consents, data collection, storage, usage and sharing as well as material transfer, returning results and benefit sharing. ca. Biospecimen collection and storage is given in trust and participants expect confidentially of data and results generated. Most participants are comfortable with broad consent due to trust in researchers, though a few would like to be contacted for reconsenting in future studies, and this would depend on whether the new research is for good cause. Sharing data with external partners is welcome in some contexts but some research participants did not trust foreign researchers. CONCLUSION/CONCLUSIONS:Biobanking and genomic studies are a real need in Africa. Linked to this are ethical considerations related to setting up and participation in biobanks as well as data storage, export, use and sharing. There is emerging or pre-existing consensus around the acceptability of broad consent as a suitable model of consent, the need for Africans to take the lead in international collaborative studies, with deliberate efforts to build capacity in local storage and analysis of samples and employ processes of sample collection and use that build trust of communities and potential study participants. Research ethics committees, researchers and communities need to work together to work together to adapt and use clearly defined ethical frameworks, guidelines, and policy documents to harmonize the establishment and running of biobanking and genomic research in Africa.
PMID: 38053109
ISSN: 1472-6939
CID: 5590602

Challenges Unique to Transgender Persons in US Correctional Settings: a Scoping Review

Engelberg, Rachel; Hood, Quinn; Shah, Krina; Parent, Brendan; Martin, Jevon; Turpin, Rodman; Feelemyer, Jonathan; Khan, Maria; Vieira, Dorice
US correctional facilities operate under a binary interpretation of gender, which can yield inherent risks and conflicts for incarcerated transgender people. We conducted a scoping literature review on challenges unique to transgender individuals within US correctional settings. Online databases were searched to identify papers that addressed the challenges of incarcerated transgender adults age 18 + within US correctional institutions. A concurrent analysis of legal literature was reviewed with key policy recommendations extracted. A total of 33 papers (21 scientific studies and 12 legal analyses) met criteria for inclusion. Of the 21 scientific studies, the majority of papers (n = 14) focused on transgender women and most (n = 13) utilized qualitative methods. Emerging themes revealed challenges in key domains of violence, health, healthcare access, housing, and a pervasive culture of transphobia. Legal analyses supported policy changes such as implementing case-by-case housing classification systems, providing all forms of gender-affirming care, and safeguarding gender expression. Transgender persons face distinct obstacles while incarcerated in US correctional facilities and are in need of expanded protections. Working in tandem with efforts to decarcerate and reduce criminal legal involvement, widespread institutional policy change, such as redefining housing assignment policies, ensuring gender-affirming healthcare, and expanding transgender-specific competency trainings for correctional staff, is necessary.
PMCID:10728397
PMID: 37851317
ISSN: 1468-2869
CID: 5612902

Environmental influences on ophthalmic conditions: A scoping review

Heilen, Noah; Hu, Galen; Lamrani, Ryan; Prasad, Jaideep; Ogunsola, Titilola; Iskander, Mina; Elgin, Cansu Yuksel; McGowan, Richard; Vieira, Dorice; Al-Aswad, Lama A
BACKGROUND:Environmental factors have been implicated in various eye pathologies. The purpose of this review is to synthesise the published research on environmental effects on eye disease. METHODS:Four databases were searched for terms relating to environmental exposures and ophthalmic disease. Titles and abstracts were screened followed by full-text review. Data was extracted from 118 included studies. Quality assessment was conducted for each study. RESULTS:Air pollutants, including nitrogen dioxide, nitrites, sulphur dioxide, particulate matter, carbon monoxide, ozone and hydrocarbons are associated with ocular conditions ranging from corneal damage to various retinopathies, including central retinal artery occlusion. Certain chemicals and metals, such as cadmium, are associated with increased risk of age-related macular degeneration. Climate factors, such as sun exposure, have been associated with the development of cataracts. Living in rural areas was associated with various age-related eye diseases whereas people living in urban settings had higher risk for dry eye disease and uveitis. CONCLUSION/CONCLUSIONS:Environmental exposures in every domain are associated with various ophthalmic conditions. These findings underscore the importance of continued research on the interplay between the environment and eye health.
PMID: 37309709
ISSN: 1442-9071
CID: 5505112

Roles and activities of nurses in cancer prevention and early detection in low- and middle-income countries: A scoping review

Liebermann, Erica; Sego, Ruth; Vieira, Dorice; Cheng, Qinqin; Xu, Binbin; Arome, Maureen; Azevedo, Alexandra; Ginsburg, Ophira; So, Winnie K W
OBJECTIVE/UNASSIGNED:Nurses play a crucial role in cancer control. Prior reviews presented the effectiveness of nursing interventions such as tobacco cessation counseling and cervical cancer screening but did not focus on low- and middle-income countries (LMICs). This scoping review addresses a gap in the literature by describing the roles and activities of nurses in cancer prevention and early detection in LMICs. METHODS/UNASSIGNED:Following Arksey and O'Malley's scoping review framework, we searched seven databases using subject headings and keywords from 1990 to January 2021 and updated in April 2022. The reference lists of relevant studies were also searched. Two reviewers independently screened the relevance of studies through Rayyan, assessed full text articles, and extracted data using a Google Form. Conflicts were resolved by a third reviewer. RESULTS/UNASSIGNED: ​= ​9). CONCLUSIONS/UNASSIGNED:This scoping review provides a comprehensive picture of nurses' role in cancer prevention and early detection in LMICs, across all six World Health Organization regions. Additional cancer workforce data sources at the country level are needed to fully understand the activities of nurses in cancer prevention. Future research is also needed to measure the impact of nursing educational and other interventions in both primary and secondary cancer prevention.
PMCID:10331398
PMID: 37435597
ISSN: 2347-5625
CID: 5537582

Analysis of the 2007-2018 National Health Interview Survey (NHIS): Examining Neurological Complications among Children with Sickle Cell Disease in the United States

Peprah, Emmanuel; Gyamfi, Joyce; Lee, Justin Tyler; Islam, Farha; Opeyemi, Jumoke; Tampubolon, Siphra; Ojo, Temitope; Qiao, Wanqiu; Mai, Andi; Wang, Cong; Vieira, Dorice; Meda, Shreya; Adenikinju, Deborah; Osei-Tutu, Nana; Ryan, Nessa; Ogedegbe, Gbenga
This study compared neurological complications among a national sample of United States children with or without sickle cell disease (SCD) and evaluated health status, healthcare and special education utilization patterns, barriers to care, and association of SCD status and demographics/socioeconomic status (SES) on comorbidities and healthcare utilization. Data was acquired from the National Health Interview Survey (NHIS) Sample Child Core questionnaire 2007-2018 dataset that included 133,542 children. An affirmation from the guardian of the child determined the presence of SCD. Regression analysis was used to compare the associations between SCD and demographics/SES on neurological conditions at p < 0.05. Furthermore, adjusted odds ratios (AORs) were estimated for having various neurological conditions. Of the 133,481 children included in the NHIS, the mean age was 8.5 years (SD: 0.02) and 215 had SCD. Of the children with SCD, the sample composition included male (n = 110), and Black (n = 82%). The SCD sample had higher odds of having neuro-developmental conditions (p < 0.1). Families of Black children (55% weighted) reported household incomes < 100% of federal poverty level. Black children were more likely to experience longer wait times to see the doctor (AOR, 0.3; CI 0.1-1.1). Compared to children without SCD, those with SCD had a greater chance of seeing a medical specialist within 12 months (AOR 2.3; CI 1.5-3.7). This representative sample of US children with SCD shows higher odds of developing neurological complications, increased healthcare and special education services utilization, with Black children experiencing a disproportionate burden. This creates the urgency to address the health burden for children with SCD by implementing interventions in healthcare and increasing education assistance programs to combat neurocognitive impairments, especially among Black children.
PMCID:10298081
PMID: 37372724
ISSN: 1660-4601
CID: 5538622

Surveillance after resection of non-invasive intraductal papillary mucinous neoplasms (IPMN). A systematic review

Correa-Gallego, Camilo; Miyasaka, Yoshihiro; Hozaka, Yuto; Nishino, Hitoe; Kawamoto, Makoto; Vieira, Dorice L; Ohtsuka, Takao; Wolfgang, Christopher
BACKGROUND:The ideal surveillance strategy after partial pancreatectomy for non-invasive IPMN remains undefined and existing guidelines provide conflicting recommendations. The present study was developed in anticipation of the joint meeting of the International Association of Pancreatology (IAP) and the Japan Pancreas Society (JPS) held in Kyoto in July 2022. METHODS:An international team of experts developed the four clinical questions (CQ) to operationalize issues pertaining to surveillance of patients in this context. A systematic review was designed following the PRISMA guidelines and registered in PROSPERO. The search strategy was executed in PubMed/Medline (Ovid), Embase, the Cochrane Library and Web of Science databases. Four investigators individually extracted data from the selected studies and drafted recommendations for each CQ. These were subsequently discussed and agreed upon that the IAP/JPS meeting. RESULTS:From a total of 1098 studies identified through the initial search, 41 studies were included in the review and informed the recommendations. No studies providing level one data were identified in this systematic review, all studies included were cohort or case-control studies. CONCLUSIONS:There is a lack of level 1 data addressing the issue of surveillance of patients following partial pancreatectomy for non-invasive IPMN. The definition of remnant pancreatic lesion in this setting is largely heterogeneous across all studies evaluated. Herein we propose an inclusive definition of remnant pancreatic lesions to guide future prospective efforts for reporting the natural history and long-term outcomes of these patients.
PMID: 36906508
ISSN: 1424-3911
CID: 5448762

Characterisation of medical conditions of children with sickle cell disease in the USA: findings from the 2007-2018 National Health Interview Survey (NHIS)

Gyamfi, Joyce; Tampubolon, Siphra; Lee, Justin Tyler; Islam, Farha; Ojo, Temitope; Opeyemi, Jumoke; Qiao, Wanqiu; Mai, Andi; Wang, Cong; Vieira, Dorice; Ryan, Nessa; Osei-Tutu, Nana H; Adenikinju, Deborah; Meda, Shreya; Ogedegbe, Gbenga; Peprah, Emmanuel
OBJECTIVES:We used the National Health Interview Survey (NHIS) data set to examine the prevalence of comorbid medical conditions; explore barriers to accessing healthcare and special educational services; and assess the associations between sickle cell disease (SCD) status and demographics/socioeconomic status (SES), and social determinants of health (SDoH) on comorbidities among children in the USA. DESIGN:Cross-sectional. SETTING:NHIS Sample Child Core questionnaire 2007-2018 data set. PARTICIPANTS:133 481 children; presence of SCD was determined by an affirmative response from the adult or guardian of the child. MAIN OUTCOME MEASURES:Multivariate logistic regression was used to compare the associations between SCD status, SES and SDoH for various medical conditions for all races and separately for black children at p<0.05. RESULTS:133 481 children (mean age 8.5 years, SD: 0.02), 215 had SCD and ~82% (weighted) of the children with SCD are black. Children with SCD were more likely to suffer from comorbid conditions, that is, anaemia (adjusted OR: 27.1, p<0.001). Furthermore, children with SCD had at least two or more emergency room (ER) visits (p<0.001) and were more likely to have seen a doctor 1-15 times per year (p<0.05) compared with children without SCD. Household income (p<0.001) and maternal education were lower for children with SCD compared with children without SCD (52.4% vs 63.5% (p<0.05)). SCD children with a maternal parent who has < / > High School degree were less likely to have no ER visits or 4-5 ER visits, and more likely to have 2-3 ER visits within 12 months. CONCLUSION:Children with SCD experienced significant comorbid conditions and have high healthcare usage, with black children being disproportionately affected. Moreover, maternal education status and poverty level illustrates how impactful SES can be on healthcare seeking behaviour for the SCD population. SDoH have significant implications for managing paediatric patients with SCD in clinical settings.
PMCID:9980332
PMID: 36854589
ISSN: 2044-6055
CID: 5432372

An Evolving HIV Epidemic in the Middle East and North Africa (MENA) Region: A Scoping Review

Karbasi, Arvin; Fordjuoh, Judy; Abbas, Mentalla; Iloegbu, Chukwuemeka; Patena, John; Adenikinju, Deborah; Vieira, Dorice; Gyamfi, Joyce; Peprah, Emmanuel
Human immunodeficiency virus (HIV) in the Middle East and North Africa (MENA) region is severely understudied despite the region's increase in new HIV infections since 2010. A key population that is particularly affected, due to the lack of adequate knowledge and proper interventional implementation, includes people who inject drugs (PWID). Furthermore, the paucity of HIV data (prevalence and trends) worsens an already critical situation in this region. A scoping review was conducted to address the scarcity of information and to synthesize the available data on HIV prevalence rates within the key population of PWID throughout the MENA region. Information was sourced from major public health databases and world health reports. Of the 1864 articles screened, 40 studies discussed the various factors contributing to the under-reporting of HIV data in the MENA region among PWID. High and overlapping risk behaviors were cited as the most prevalent reason why HIV trends were incomprehensible and hard to characterize among PWID, followed by lack of service utilization, lack of intervention-based programs, cultural norms, lack of advanced HIV surveillance systems, and protracted humanitarian emergencies. Overall, the lack of reported information limits any adequate response to the growing and unknown HIV trends throughout the region.
PMCID:10001308
PMID: 36900856
ISSN: 1660-4601
CID: 5448672

Narrative review of migraine management in patients with renal or hepatic disease

Stern, Jennifer I; Datta, Shae; Chiang, Chia-Chun; Garza, Ivan; Vieira, Dorice L; Robertson, Carrie E
OBJECTIVES/BACKGROUND/OBJECTIVE:Treatment of migraine in the setting of either renal or hepatic disease can be daunting for clinicians. Not only does the method of metabolism have to be considered, but also the method of elimination/excretion of the parent drug and any active or toxic metabolites. Furthermore, it is difficult to think about liver or kidney disease in isolation, as liver disease can sometimes contribute to impaired renal function and renal disease can sometimes impair hepatic metabolism, through the cytochrome P450 system. METHODS:A detailed search for terms related to liver disease, renal disease, and migraine management was performed in PubMed, Ovid Medline, Embase, and the Cochrane Library.For each medication, product labels were retrieved and reviewed using the US FDA website, with additional review of IBM Micromedex, LiverTox, and the Renal Drug Handbook. RESULTS:This manuscript provides an overview of migraine drug metabolism and how it can be affected by liver and renal impairment. It reviews the standard terminology recommended by the US Food and Drug Administration for the different stages of hepatic and renal failure. The available evidence regarding the use of abortive and preventative medicines in the setting of organ failure is discussed in detail, including more recent therapies such as lasmiditan, gepants, and calcitonin gene-related peptide antibodies. CONCLUSIONS:For acute therapy, the use of NSAIDS should be limited, as these carry risk for both severe hepatic and renal disease. Triptans can be selectively used, often with dose guideline adjustments. Ubrogepant may be used in severe hepatic disease with dose adjustment and lasmiditan can be used in end stage renal disease. Though non-medicine strategies may be the most reasonable initial approach, many preventative medications can be used in the setting of hepatic and renal disease, often with dose adjustment. This review provides tables of guidelines, including reduced dosing recommendations, for the use of abortive and preventative migraine medications in hepatic and renal failure.
PMID: 36709407
ISSN: 1526-4610
CID: 5419882

Implementation of non-insulin-dependent diabetes self-management education (DSME) in LMICs: a systematic review of cost, adoption, acceptability, and fidelity in resource-constrained settings

Fitzpatrick, Reilly; Pant, Shubhra; Li, Jamie; Ritterman, Rebecca; Adenikinju, Deborah; Iloegbu, Chukwuemeka; Pateña, John; Vieira, Dorice; Gyamfi, Joyce; Peprah, Emmanuel
BACKGROUND/UNASSIGNED:Type II diabetes (T2D), is a serious health issue accounting for 10.7% of mortality globally. 80% of cases worldwide are found in low- and middle-income countries (LMIC), with rapidly increasing prevalence. Diabetes-self management education (DSME) is a cost-effective program that provides at-risk individuals with the knowledge and skills they need to adopt lifestyle changes that will improve their health and well-being. This systematic review examined the application of DSME in LMICs and identified the corresponding implementation results (cost, fidelity, acceptance, and adoption) associated with successful implementation in low-resource settings. METHODS AND ANALYSIS/UNASSIGNED:The available research on T2D and the use of DSME in LMIC were systematically searched for using six electronic databases (PubMed, Embase, Cochrane, Web of Science, Google Scholar, PAIS, and EBSCO Discovery) between the months of October and November of 2022. The articles that met the search criteria were subsequently imported into EndNote and Covidence for analysis. The Cochrane RoB methodology for randomized trials was used to evaluate the risk of bias (RoB) in the included studies. A narrative synthesis was used to summarize the results. RESULTS/UNASSIGNED: = 12). CONCLUSION/UNASSIGNED:Our systemic review found that DSME can be an acceptable and cost-effective solution in LMIC. While we intended to analyze cost, adoption, acceptability, and fidelity, our investigation revealed a gap in the literature on those areas, with most studies focusing on acceptability and cost and no studies identifying fidelity or adoption. To further evaluate the efficacy of DSME and enhance health outcomes for T2D in LMICs, more research is needed on its application. SYSTEMATIC REVIEW REGISTRATION/UNASSIGNED:osf.io/7482t.
PMCID:10294677
PMID: 37383485
ISSN: 2813-0146
CID: 5540442