Journal of Community Genetics最新文献

{"title":"Health literacy and prenatal screening acceptability for hemoglobinopathies in Tunisia: a pilot mediation study.","authors":"Foued Maaoui, Nadine Ben Saad, Eya Zarrouk, Sonia Mahjoub, Samia Menif, Imen Moumni","doi":"10.1007/s12687-026-00899-3","DOIUrl":"10.1007/s12687-026-00899-3","url":null,"abstract":"<p><p>Hemoglobinopathies remain a major public health concern in Tunisia. Effective prevention depends on informed prenatal screening, yet the role of health literacy in screening acceptability is poorly documented in North Africa. This pilot study developed and culturally adapted a 9-item health literacy questionnaire based on Nutbeam's multidimensional framework and examined its direct and indirect associations, via perceived understanding, with screening acceptability. A cross-sectional pilot study was conducted at the national referral maternity center CHU La Rabta in Tunis with 256 pregnant women aged 18-49 years. The questionnaire was rigorously adapted to Tunisian Arabic dialect through forward-back translation and cognitive debriefing with five pregnant women. Health literacy was assessed using functional, interactive, and critical subscales (1-4 Likert scale). Screening acceptability and perceived understanding to decide were also measured. Data was analyzed with descriptive statistics, reliability testing (Cronbach's α), Spearman correlations, and bootstrapped mediation analysis. Mean global health literacy was 2.70 ± 0.77 (59.8% in the \"high\" category). The 9-item scale showed good reliability (Cronbach's α = 0.826). Interactive literacy scored highest (2.95 ± 0.92), while functional (2.58 ± 0.93) and critical (2.56 ± 1.00) dimensions were lower. The analysis revealed associations consistent with partial mediation: higher health literacy was associated with screening acceptability both directly (c' = 0.438, p = 0.042) and indirectly through perceived understanding (indirect effect = 0.314, 95% CI 0.128-0.562, p < 0.001), accounting for 41.8% of the total effect. After adjustment for age, education, and residence, global health literacy remained independently associated with screening acceptability (adjusted OR = 1.55, p = 0.041). A brief, culturally adapted health literacy tool proved feasible and reliable in the Tunisian prenatal context. Higher health literacy was associated with greater screening acceptability both directly and indirectly through improved perceived understanding. These findings provide a strong empirical basis for integrating health literacy assessment and targeted literacy-enhancing interventions into Tunisia's national hemoglobinopathy prevention program.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":"17 3","pages":""},"PeriodicalIF":1.8,"publicationDate":"2026-05-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13184013/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147965048","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"In their own words: a qualitative exploration of patients' perspectives of genetic counseling sessions across clinical disciplines.","authors":"Lindsay Peifer, Heather A Zierhut, Deborah Cragun, T J Maresca, Elena R Fisher, Rebekah Pratt, Krista Redlinger-Grosse","doi":"10.1007/s12687-026-00897-5","DOIUrl":"10.1007/s12687-026-00897-5","url":null,"abstract":"<p><p>Genetic counselors (GCs) help individuals navigate living with genetic conditions via models of practice that emphasize GC-defined processes and outcomes. While quantitative, patient-reported measures have assessed patients' experiences and outcomes, there are limited qualitative studies that explore patient-reported impressions of genetic counseling in their own voice. A subset of genetic counseling patients enrolled in the Genetic Counseling Processes Result in Outcomes (GC-PRO) study completed a semi-structured phone or video interview within 1-2 weeks of their genetic counseling session. Transcripts (n = 25) were purposefully sampled from different clinic locations (three institutions), specialties (prenatal, cancer, cardiology, general genetics), participant responses to quantitative surveys, and demographics. A constructivist approach via reflexive thematic analysis identified five themes about the patient experience with GC behaviors and outcomes: (1) Follow my lead; (2) Working collaboratively over time; (3) We value information; (4) GC expertise and caring demeanor are unique; and (5) I left with takeaways. Patients identified the importance of GC behaviors that fostered a patient-led, collaborative session where informational and supportive needs were met in a tailored manner. Clear information-giving from a knowledgeable GC was consistently perceived to be valuable. Participants typically did not enter a session with a predetermined outcome, yet they later identified emotional impacts, gaining new perspectives about genetic information, and feeling empowered by actionable recommendations as outcomes. This research adds to the literature on patient-defined outcomes and perspectives on counseling processes which at times differ from classical provider definitions and serves to support additions to the current models of practice.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":"17 3","pages":""},"PeriodicalIF":1.8,"publicationDate":"2026-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13179394/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147949714","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Analyzing readability and suitability of webpages related to genetic counseling and genetic testing.","authors":"Madalyn Charnego, Andrea Durst, Elizabeth Felter, Christine Munro, Andrew Martuscelli","doi":"10.1007/s12687-026-00896-6","DOIUrl":"10.1007/s12687-026-00896-6","url":null,"abstract":"<p><p>Patients who are referred for genetic counseling and/or genetic testing may conduct web searches to try to gather more information prior to their appointment. However, little is known about the reading level of such resources or the suitability of the information they provide. This study aims to determine the readability and suitability of top-ranked webpages after general searches about genetic counseling and if there is a difference in these metrics depending on which type of organization (i.e., government, non-profit) authored the webpage. Twenty webpages were identified using Google. Searches of the questions \"What is a genetic counselor?\", \"What is genetic testing?\", \"Why do I need genetic testing?\", and \"What happens at a genetic counseling appointment?\" were completed and the top 5 pages were taken from each. These webpages were then analyzed using the readability tools of Flesch-Kincaid (FK) and Standardized Measure of Gobbledygook (SMOG). Both FK and SMOG provide an assessment of readability based on grade level with the goal of this study to find resources under grade level 8. Additionally, the webpages were analyzed using the Suitability Assessment of Materials (SAM) on 6 categories. To complete the SAM analysis, two reviewers completed the tool for each webpage. Sponsor type was determined based on the primary goal of the group that supported or published the webpage. When comparing between questions, the average FK scores for the webpages were between 8th and 12th grade and the average SMOG scores were between 11th and 14th grade. Most webpages rated as adequate on the SAM scale. The results of this study highlight the continued need for evaluation of patient resources, especially those on the internet, to ensure they are meeting the needs of the rising number of individuals being referred to genetic services.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":"17 3","pages":""},"PeriodicalIF":1.8,"publicationDate":"2026-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13172235/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147934475","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Learning about the genetic risk in my family: Preferences of Italian nurses.","authors":"Lea Godino, Linda Battistuzzi, Daniela Turchetti, Liliana Varesco, Vanessa Gentili, Paolo Chiari, Alvisa Palese","doi":"10.1007/s12687-026-00892-w","DOIUrl":"10.1007/s12687-026-00892-w","url":null,"abstract":"<p><p>This study explores Italian nurses' preferences and views regarding the disclosure and sharing of genetic risk information within families, focusing on their genetic literacy and responsibility, and comparing these perspectives with laypeople. A nested cross-sectional online survey, originally designed for the general population, included three hypothetical scenarios of inherited genetic risk (Cystic Fibrosis, Hereditary Cancer Syndromes, and early-onset Alzheimer's disease) and items assessing genetic literacy (awareness), family cohesion, disclosure preferences, and responsibility. Quantitative data were analyzed descriptively and inferentially, and qualitative responses were analyzed inductively using Reflexive Thematic Analysis. Among the 1,302 respondents, 501 were healthcare professionals (HCPs), including 315 nurses. Their genetic literacy was modest (mean 2.5/4), higher than laypeople's, with no differences by age or education. Nearly all (94.9%) wished to be informed of genetic risk for at least one condition, with 75.9% preferring to be informed for all three, similar to laypeople (78.1%). Most (97.8%) would undergo genetic testing if informed (95.6% of laypeople). Responsibility for disclosure was viewed as shared between relatives and HCPs (39.1%) or by everyone involved (themselves, relatives and HCPs) (25.1%), echoing laypeople's views. Qualitative findings from the few who did not wish to be informed (n = 16) emphasized anxiety, psychological self-protection, and scepticism toward predictive medicine, similar to laypeople. Italian nurses expressed views and preferences similar to laypeople. While they valued receiving genetic risk information and HCP involvement in family communication, limited familiarity with clinical applications of genetic testing highlights a gap in nursing education and practice, with implications for targeted training.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":"17 3","pages":""},"PeriodicalIF":1.8,"publicationDate":"2026-05-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13161415/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147870000","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Social stigma, genetic services, and South Africa: is testing taboo?","authors":"Caitlin Ching Sent, Brendon Pearce","doi":"10.1007/s12687-026-00893-9","DOIUrl":"10.1007/s12687-026-00893-9","url":null,"abstract":"<p><p>Genetic testing and counselling are invaluable tools for preventative and personalised care. Unfortunately, utilisation of these services in South Africa, and continental Africa more broadly, has been limited. South Africa, which suffers from a unique epidemiological state, offers these genetic services, but accessibility is limited, as is education around this topic. Furthermore, coupled with the previous limitations, there is a prevalent distrust of the healthcare system and the stakeholders involved therein. This is largely due to the sociopolitical history of the country, which has resulted in severe economic inequalities and racial marginalisation of majority population groups. To effectively reduce the disease burden that South Africa is currently experiencing, it is necessary to increase the accessibility and uptake of these services, particularly genetic testing. While geographic and financial barriers could be tackled governmentally, other barriers, such as stigma towards genetic testing, Westernised medicine in general, and those that provide it, need to be investigated before investing valuable resources into infrastructure. Understanding these barriers would provide critical insight into the demand for genetic testing and how uptake and motivation could be improved. This narrative review discusses potential barriers to uptake and consumer demand in South Africa, and concludes by tying all identified barriers into an overarching concern regarding stigma (particularly intersectional stigma) related to genetic testing in a South African context. By doing so, we identify several key information gaps that future research could fill.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":"17 3","pages":""},"PeriodicalIF":1.8,"publicationDate":"2026-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13156387/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147844506","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"How parents and community care professionals use a genetic diagnosis to inform care: expanding the concept of utility.","authors":"Amy A Lemke, Katelyn C McNamara, R Jean Cadigan, Roselle Ponsaran, Aaron J Goldenberg, Carla A Rich, Candice R Finnila, Gregory M Cooper, Kyle B Brothers","doi":"10.1007/s12687-026-00891-x","DOIUrl":"10.1007/s12687-026-00891-x","url":null,"abstract":"<p><p>Research on genomic testing outcomes for children with neurodevelopmental conditions often emphasizes clinical and personal utility, but rarely considers how a genomic diagnosis impacts care from non-physician community-based professionals such as those in private practice, early intervention, or school settings. Therefore, this study explored how caregivers and community care professionals use a genomic diagnosis to inform care. Semi-structured interviews were conducted with 23 caregivers of children with a genomic diagnosis and 30 community care professionals providing care to the child. Directed and summative content analysis was performed. Reported impacts included (1) improved care provision, (2) informed future planning, (3) enhanced social and community support, (4) enhanced understanding, (5) increased access to therapy-related services and equipment, (6) improved service quality and 5) elevated patient advocacy and engagement. Potential disutility arose from limited diagnostic information, provider knowledge gaps, insurance denials, and provider fear of treating rare conditions. A key neutral/mixed finding was that the diagnosis did not always impact care. Barriers to potential utility included financial burden, confusion about next steps, provider knowledge gaps, and lack of evidence-based guidance for rare diagnoses. Findings highlight that caregivers and community professionals may experience impacts from a genomic diagnosis (positive, negative, or neutral) that are understudied in empirical research, potentially because traditional concepts of utility fail to incorporate these domains. Broadening this conceptual framing could inform empirical research focused on identifying these effects and informing potential interventions. Further work is needed to characterize and quantify genomic test utility and disutility across diverse contexts.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":"17 3","pages":""},"PeriodicalIF":1.8,"publicationDate":"2026-05-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13149733/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147844467","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Knowledge and perceptions of pharmacogenomics and personalized medicine among pharmacy students in Gujarat: a cross-sectional survey.","authors":"Bhumika Maheriya, Kashyap Thummar, Sanjay Chauhan","doi":"10.1007/s12687-026-00894-8","DOIUrl":"10.1007/s12687-026-00894-8","url":null,"abstract":"<p><p>Pharmacogenomics (PGx) plays an important role in personalized medicine by explaining genetic variability in drug response and enabling personalized therapy. Although global efforts have integrated PGx into pharmacy curriculum, in India structured education and training regarding PGx still remain limited. Understanding pharmacy students' knowledge, perceptions, and attitudes toward PGx is essential for preparing the future workforce for clinical application in healthcare area. A cross-sectional questionnaire-based survey was conducted among undergraduate and postgraduate pharmacy students at the School of Pharmacy, Gujarat Technological University, Gandhinagar, India, in July 2025. Participants were recruited using a convenience sampling approach, and the survey was administered online via google form using a structured and validated questionnaire. The instrument assessed demographic characteristics, knowledge of pharmacogenomics, attitudes toward its clinical application, and sources of information. Data were analysed using SPSS version 25. A total of 200 pharmacy students participated in the survey. Most students demonstrated good conceptual knowledge of pharmacogenomics, with 92.5% correctly identifying PGx as the study of gene-drug interactions and 82.5% recognizing its role in reducing adverse drug reactions. However, awareness of practical aspects was limited: only 38.5% were aware of pharmacogenomic guidelines such as CPIC, PharmGKB, FDA labelling, and 29% reported prior formal instruction on pharmacogenomics in their curriculum. Despite these knowledge gaps, students expressed highly positive attitudes toward pharmacogenomics. Correlation analysis showed a weak to moderate positive association between knowledge and attitude scores (r = 0.37, p < 0.01), indicating that higher knowledge levels were associated with more favourable attitudes toward pharmacogenomics. This study showed that pharmacy students of Gujarat has a strong conceptual understanding of pharmacogenomics and recognizing its role in gene-drug interactions and the reduction of adverse drug reactions. However, awareness was limited which strongly indicates a gap between theoretical knowledge and practical application. Overall it highlights both existing knowledge of students and the need to enhance practical applicability of pharmacogenomics for the future integration of personalized medicine into clinical practice.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":"17 3","pages":""},"PeriodicalIF":1.8,"publicationDate":"2026-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13139554/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147822012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Rare diseases in the Turkish-Cypriot community: a nationwide study.","authors":"Behich Koyutourk, Mahmut Cerkez Ergoren","doi":"10.1007/s12687-026-00890-y","DOIUrl":"10.1007/s12687-026-00890-y","url":null,"abstract":"<p><p>Minor or genetically isolated populations like Turkish-Cypriots (TC) are usually challenging to diagnose and treat for uncommon genetic diseases. TC may exhibit several patterns of unusual genetic disorders based on their unique historical and demographic conditions. The objective of the current study is to identify and investigate the rarest genetic disorders in TC patients. Therefore, between 2019 and 2025, clinical and genetic data, which were confirmed by gene panels and exome sequencing, from 150 TC patients were retrospectively analysed in our clinic. Also, inheritance models and variant types were classified and contrasted. Out of 150 patients, 123 different rare diseases were discovered. Observed in 10 cases (6.7%), neurofibromatosis (type 1) was the most common of these, trailed by spinal muscular atrophy in 6 cases (4%), phenylketonuria in 6 cases (4%), and episodic kinesigenic dyskinesia type 1 in 4 cases (2.7%). Importantly, 114 of the discovered diseases (76%) were observed in only one patient, indicating a vast spectrum of ultrarare or single-case conditions within the group. Autosomal dominant was the most prevalent mode of inheritance; other types also present were autosomal recessive and mitochondrial inheritance. The recurrence of particular gene pathogenic variants in a group of patients may suggest a potential founder effect; however, further population-based haplotype studies are required to confirm this hypothesis within the TC population. The results demonstrate an overrepresentation of particular neurogenetic syndromes and underline the necessity of targeted screening procedures and population-dependent databases to maximise diagnostic yield and genetic counselling in this poorly characterised population.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":"17 3","pages":""},"PeriodicalIF":1.8,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13135022/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147822076","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Meeting the demand: A collaborative approach in developing genetic counselling education in the Nordic countries.","authors":"Elen Siglen, Essi Ylistalo, Åshild Lunde, Arnhildur Tomasdottir, Marianne Lodahl, Charlotta Ingvoldstad Malmgren, Hakon Bjørn Hognason, Eirny T Thorolfsdottir, Mari Laaksonen, Vigdis Fjola Stefansdottir, Cathrine Bjorvatn, Rebecka Pestoff","doi":"10.1007/s12687-026-00883-x","DOIUrl":"10.1007/s12687-026-00883-x","url":null,"abstract":"<p><p>This program report describes the establishment of the Nordic Network for Genetic Counselling (NNGC) and the ongoing work toward developing a joint Nordic MSc in Genetic Counselling and increasing awareness of genetic counselling in the Nordic countries. Founded officially in 2024, the NNGC brings together universities and university hospitals across the Nordic region and draws on members varied clinical and academic backgrounds. With financial support from NordPlus, the network has built a collaborative framework based on shared responsibility, rotating coordination, and regular digital and in-person meetings. Using the previously EBMG accredited Swedish MSc as a point of reference, the network has a curriculum that aligns with international standards and Nordic priorities related to sustainability, equity, and educational quality. Formal agreements between participating institutions have secured engagement and provided a basis for the development of the master's programme. The learning points from this collaborative work, including key facilitators, identified barriers, and recommendations when pursuing similar initiatives are presented. Although still under development, the planned Nordic MSc, expected to launch in 2027, demonstrates how regional/international collaboration can strengthen specialized education and support the future workforce needs of precision medicine.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":"17 3","pages":""},"PeriodicalIF":1.8,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13135020/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147821968","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Holistic view of understanding genetic predisposition and perceptions of genomic research in African communities: tradition, trust and transformation.","authors":"Nuria Ribeiro, Brendon Pearce","doi":"10.1007/s12687-026-00889-5","DOIUrl":"10.1007/s12687-026-00889-5","url":null,"abstract":"<p><p>Genetic research holds immense potential to advance personalised medicine and enhance patient outcomes. However, Africa’s diverse and historically marginalised populations remain significantly underrepresented in these studies, thus limiting the relevance and reach of genomic advancements. By examining African communities through an anthropological lens, this narrative review highlights the importance of their lived realities and holistic perspectives on Genetic and Genomic Research (GGR). Beyond advocating for their inclusion, raising the importance of embedding intentional integrated medical practices, culturally sensitive ethical principles and fostering equitable long-term partnerships both locally and globally. These efforts are essential for strengthening healthcare infrastructure and ensuring that the benefits of GGR are shared fairly. Ultimately, fostering authentic participation and sustained trust in scientific research across Africa requires transparent dialogue, inclusive collaboration and a principled commitment to respecting community autonomy, not merely for the advancement of science, but to affirm the sovereignty and long-term interest of African populations.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":"17 3","pages":""},"PeriodicalIF":1.8,"publicationDate":"2026-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13121668/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147785254","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}