Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India

Journal article

Background: Biomarker research is essential for personalized medicine, providing insights into disease causes, diagnostics, and treatment methods. However, informed consent, privacy, data protection, and vulnerable population impacts are major ethical considerations in this quickly developing profession. Method This thorough overview analyzes existing legal frameworks, such as HIPAA and GDPR, and assesses growing ethical criteria for biomarker research and implementation. A examination of case studies, ethical considerations, and regulatory rules examines how biomarker research has handled sensitive data and protected participant rights. Result Key results indicate that informed consent is a significant issue in biomarker research owing to its complexity and continual participant participation. Potential solutions include dynamic consent models that increase participant autonomy. Data protection requirements must be followed since sensitive biological and genetic data increases privacy and confidentiality threats. Biomarker ethical issues, especially in predictive and diagnostic settings, may lead to abuse and unexpected effects. This study emphasizes the need for ethical protections to assure fair representation and avoid exploitation in biomarker research, which disproportionately affects underprivileged communities. Conclusion: Addressing ethical concerns is crucial for responsible biomarker research advancement. Maintaining public trust and supporting equitable, ethical biomarker uses requires strengthening ethical frameworks, informed consent, and data privacy

Authors: Warrier, P; Ho, CW-L; Bull, S; Vaz, M

• Publication status: Published
• Peer review status: Peer reviewed
• Publisher: Taylor and Francis
• Journal: Wellcome Open Research
• Volume: 6
• Pages: 5-5
• Publication date: 2021-02-16
• DOI: 10.12688/wellcomeopenres.16558.2
• EISSN: 2398-502X
• ISSN: 2398-502X
• Language: English
• Keywords: Genetics; Biobank; Business; Engineering; Publics; Engineering ethics; Political science; Public relations; Law; Corporate governance; Biology