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New Publications
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Journal Article
Disclosure of genetic risk to family members: A qualitative study on healthcare professionals' perceived roles and responsibilities
Mendes, Paneque, and Sequeiros interviewed health care professionals (HCPs) working in medical genetics services in Portugal and found that while HCPs believe it is their responsibility to inform patients about genetic risk to their relatives, the degree to which they are proactive in providing disclosure assistance is limited by their concerns about protecting patient confidentiality in compliance with legal requirements and structural barriers.
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Journal Article
Reflections on 'common' genetic medical history questions: Time to examine the what, why, and how
Waltz and colleagues analyzed audio-recorded conversations between providers and caregivers of pediatric patients with suspected genetic conditions and identified examples of providers using stigmatizing language, asking questions related to educational attainment and work history without clarifying the intent, or making presumptions about race, ethnicity, or family structure. The authors suggest that retaining only necessary questions and avoiding problematic phrasing could improve communication between providers and families.
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Journal Article
The regulation of health data sharing in Africa: A comparative study
McKay and colleagues compare legal and regulatory frameworks of health data sharing in South Africa, Ghana, Kenya, Nigeria, and Uganda; describe gaps and inconsistencies; and suggest improvements to balance the benefits of health data sharing with privacy protection and support the continued growth of health research funding in these countries.