التفاصيل البيبلوغرافية
| العنوان: |
Benefit-Sharing by Design: A Call to Action for Human Genomics Research. |
| المؤلفون: |
Mc Cartney AM; 1Genomics Institute, University of California, Santa Cruz, California, USA; email: anmmccar@ucsc.edu., Scholz AH; 2Department of Science Policy and Internationalisation, Leibniz Institute DSMZ-German Collection of Microorganisms and Cell Cultures, Braunschweig, Germany; email: amber.h.scholz@dsmz.de., Groussin M; 3Institute of Clinical Molecular Biology, Kiel University, Kiel, Germany; email: m.groussin@ikmb.uni-kiel.de., Staunton C; 4Institute for Biomedicine, Eurac Research, Bolzano, Italy; email: ciara.staunton@eurac.edu.; 5School of Law, University of KwaZulu-Natal, Durban, South Africa. |
| المصدر: |
Annual review of genomics and human genetics [Annu Rev Genomics Hum Genet] 2024 Apr 12. Date of Electronic Publication: 2024 Apr 12. |
| Publication Model: |
Ahead of Print |
| نوع المنشور: |
Journal Article; Review |
| اللغة: |
English |
| بيانات الدورية: |
Publisher: Annual Reviews Country of Publication: United States NLM ID: 100911346 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1545-293X (Electronic) Linking ISSN: 15278204 NLM ISO Abbreviation: Annu Rev Genomics Hum Genet Subsets: MEDLINE |
| أسماء مطبوعة: |
Original Publication: Palo Alto, CA : Annual Reviews, c2000- |
| مستخلص: |
The ethical standards for the responsible conduct of human research have come a long way; however, concerns surrounding equity remain in human genetics and genomics research. Addressing these concerns will help society realize the full potential of human genomics research. One outstanding concern is the fair and equitable sharing of benefits from research on human participants. Several international bodies have recognized that benefit-sharing can be an effective tool for ethical research conduct, but international laws, including the Convention on Biological Diversity and its Nagoya Protocol on Access and Benefit-Sharing, explicitly exclude human genetic and genomic resources. These agreements face significant challenges that must be considered and anticipated if similar principles are applied in human genomics research. We propose that benefit-sharing from human genomics research can be a bottom-up effort and embedded into the existing research process. We propose the development of a "benefit-sharing by design" framework to address concerns of fairness and equity in the use of human genomic resources and samples and to learn from the aspirations and decade of implementation of the Nagoya Protocol. |
| تواريخ الأحداث: |
Date Created: 20240412 Latest Revision: 20240412 |
| رمز التحديث: |
20240413 |
| DOI: |
10.1146/annurev-genom-021623-104241 |
| PMID: |
38608642 |
| قاعدة البيانات: |
MEDLINE |
