دورية أكاديمية
أعرض في EDS

Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa.

التفاصيل البيبلوغرافية
العنوان: Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa.
المؤلفون: Oladayo AM; Department Oral Pathology, Radiology and Medicine, College of Dentistry, University of Iowa, Iowa City, Iowa, USA.; Iowa Institute of Oral Health Research, University of Iowa, Iowa City, Iowa, USA., Prochaska S; Department of Global Health, College of Public Health, University of Iowa, Iowa City, Iowa, USA., Busch T; Iowa Institute of Oral Health Research, University of Iowa, Iowa City, Iowa, USA., Adeyemo WL; Department of Oral and Maxillofacial Surgery, University of Lagos, Lagos, Nigeria., Gowans LJJ; Department of Biochemistry and Biotechnology, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana., Eshete M; Department of Surgery, School of Medicine, Addis Ababa University, Addis Ababa, Ethiopia., Awotoye W; Department Oral Pathology, Radiology and Medicine, College of Dentistry, University of Iowa, Iowa City, Iowa, USA.; Iowa Institute of Oral Health Research, University of Iowa, Iowa City, Iowa, USA., Sule V; Department of Operative Dentistry, College of Dentistry, University of Iowa, Iowa City, Iowa, USA., Alade A; Department Oral Pathology, Radiology and Medicine, College of Dentistry, University of Iowa, Iowa City, Iowa, USA.; Iowa Institute of Oral Health Research, University of Iowa, Iowa City, Iowa, USA., Adeyemo AA; National Human Genomic Research Institute, Bethesda, MD, USA., Mossey PA; Department of Orthodontics, University of Dundee, Dundee, UK., Prince A; College of Law, University of Iowa, Iowa City, Iowa, USA., Murray JC; Department of Pediatrics, University of Iowa, Iowa City, Iowa, USA., Butali A; Department Oral Pathology, Radiology and Medicine, College of Dentistry, University of Iowa, Iowa City, Iowa, USA.; Iowa Institute of Oral Health Research, University of Iowa, Iowa City, Iowa, USA.
المصدر: AJOB empirical bioethics [AJOB Empir Bioeth] 2024 Apr-Jun; Vol. 15 (2), pp. 133-146. Date of Electronic Publication: 2024 Jan 18.
نوع المنشور: Journal Article; Research Support, N.I.H., Extramural
اللغة: English
بيانات الدورية: Publisher: Taylor & Francis Group, 2014- Country of Publication: United States NLM ID: 101631047 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 2329-4523 (Electronic) Linking ISSN: 23294515 NLM ISO Abbreviation: AJOB Empir Bioeth Subsets: MEDLINE
أسماء مطبوعة: Original Publication: Philadelphia, PA : Taylor & Francis Group, 2014-
مواضيع طبية MeSH: Cleft Palate*/genetics , Genetic Testing* , Parents* , Genomics* , Health Personnel* , Cleft Lip*/genetics, Humans ; Male ; Female ; Nigeria ; Adult ; Ghana ; Health Knowledge, Attitudes, Practice ; Surveys and Questionnaires ; Child ; Middle Aged ; Attitude of Health Personnel
مستخلص: Background: Inadequate knowledge among health care providers (HCPs) and parents of affected children limits the understanding and utility of secondary genetic findings (SFs) in under-represented populations in genomics research. SFs arise from deep DNA sequencing done for research or diagnostic purposes and may burden patients and their families despite their potential health importance. This study aims to evaluate the perspective of both groups regarding SFs and their choices in the return of results from genetic testing in the context of orofacial clefts.
Methods: Using an online survey, we evaluated the experiences of 252 HCPs and 197 parents across participating cleft clinics in Ghana and Nigeria toward the return of SFs across several domains.
Results: Only 1.6% of the HCPs felt they had an expert understanding of when and how to incorporate genomic medicine into practice, while 50.0% agreed that all SFs should be returned to patients. About 95.4% of parents were willing to receive all the information from genetic testing (including SFs), while the majority cited physicians as their primary information source (64%).
Conclusions: Overall, parents and providers were aware that genetic testing could help in the clinical management of diseases. However, they cited a lack of knowledge about genomic medicine, uncertain clinical utility, and lack of available learning resources as barriers. The knowledge gained from this study will assist with developing guidelines and policies to guide providers on the return of SFs in sub-Saharan Africa and across the continent.
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معلومات مُعتمدة: K43 DE029427 United States DE NIDCR NIH HHS; R01 DE028300 United States DE NIDCR NIH HHS; T90 DE023520 United States DE NIDCR NIH HHS
فهرسة مساهمة: Keywords: Secondary findings; genomics research; oro-facial clefts; parents; providers; sub-Saharan Africa
تواريخ الأحداث: Date Created: 20240118 Date Completed: 20240605 Latest Revision: 20240711
رمز التحديث: 20240712
مُعرف محوري في PubMed: PMC11153024
DOI: 10.1080/23294515.2024.2302993
PMID: 38236653
قاعدة البيانات: MEDLINE
الوصف
تدمد:2329-4523
DOI:10.1080/23294515.2024.2302993