Ethical Considerations for Gene Drive: Challenges of Balancing Inclusion, Power and Perspectives
Progress in gene-drive research has stimulated discussion and debate on ethical issues including community engagement and consent, policy and governance, and decision-making involved in development and deployment. Many organizations, academic institutions, foundations, and individual professionals h...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2022-01-01
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| Series: | Frontiers in Bioengineering and Biotechnology |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fbioe.2022.826727/full |
| _version_ | 1818332531793068032 |
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| author | Ana Kormos Gregory C. Lanzaro Ethan Bier Vanilson Santos Lodney Nazaré João Pinto João Pinto Adionilde Aguiar dos Santos Anthony A. James Anthony A. James |
| author_facet | Ana Kormos Gregory C. Lanzaro Ethan Bier Vanilson Santos Lodney Nazaré João Pinto João Pinto Adionilde Aguiar dos Santos Anthony A. James Anthony A. James |
| author_sort | Ana Kormos |
| collection | DOAJ |
| description | Progress in gene-drive research has stimulated discussion and debate on ethical issues including community engagement and consent, policy and governance, and decision-making involved in development and deployment. Many organizations, academic institutions, foundations, and individual professionals have contributed to ensuring that these issues are considered prior to the application of gene-drive technology. Central topics include co-development of the technology with local stakeholders and communities and reducing asymmetry between developers and end-users. Important questions include with whom to conduct engagement and how to define community acceptance, develop capacity-building activities, and regulate this technology. Experts, academics, and funders have suggested that global frameworks, standards, and guidelines be developed to direct research in answering these important questions. Additionally, it has been suggested that ethical principles or commitments be established to further guide research practices. The challenging and interesting contradiction that we explore here is that the vast majority of these conversations transpire with little or no input from potential end-users or stakeholders who, we contend, should ultimately determine the fate of the technology in their communities. The question arises, whose concerns regarding marginalization, disempowerment, and inequity should be included in discussions and decisions concerning how inequities are perceived and how they may be addressed? At what stage will true co-development occur and how will opinions, perspectives and knowledge held by low-income country stakeholders be applied in determining answers to the questions regarding the ethics being debated on the academic stage? Our opinion is that the time is now. |
| first_indexed | 2024-12-13T13:37:14Z |
| format | Article |
| id | doaj.art-7cc7d127e6464a7a8886702ed4c98e44 |
| institution | Directory Open Access Journal |
| issn | 2296-4185 |
| language | English |
| last_indexed | 2024-12-13T13:37:14Z |
| publishDate | 2022-01-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Bioengineering and Biotechnology |
| spelling | doaj.art-7cc7d127e6464a7a8886702ed4c98e442022-12-21T23:43:43ZengFrontiers Media S.A.Frontiers in Bioengineering and Biotechnology2296-41852022-01-011010.3389/fbioe.2022.826727826727Ethical Considerations for Gene Drive: Challenges of Balancing Inclusion, Power and PerspectivesAna Kormos0Gregory C. Lanzaro1Ethan Bier2Vanilson Santos3Lodney Nazaré4João Pinto5João Pinto6Adionilde Aguiar dos Santos7Anthony A. James8Anthony A. James9Vector Genetics Laboratory, University of California, Davis, Davis, CA, United StatesVector Genetics Laboratory, University of California, Davis, Davis, CA, United StatesSection of Cell and Developmental Biology, University of California, San Diego, San Diego, CA, United StatesMinistry of Defense, São Tomé, São Tomé and PríncipeUnited Nations Development Program, São Tomé, São Tomé and PríncipeVector Genetics Laboratory, University of California, Davis, Davis, CA, United StatesGlobal Health and Tropical Medicine, Instituto de Higiene e Medicina Tropical, Universidade Nova de Lisboa, Lisbon, PortugalMinistry of Health, Delegacia de Saúde Distrital de Água Grande, São Tomé, São Tomé and PríncipeDepartment of Microbiology and Molecular Genetics, University of California, Irvine, CA, Irvine, United StatesDepartment of Molecular Biology and Biochemistry, University of California, Irvine, CA, Irvine, United StatesProgress in gene-drive research has stimulated discussion and debate on ethical issues including community engagement and consent, policy and governance, and decision-making involved in development and deployment. Many organizations, academic institutions, foundations, and individual professionals have contributed to ensuring that these issues are considered prior to the application of gene-drive technology. Central topics include co-development of the technology with local stakeholders and communities and reducing asymmetry between developers and end-users. Important questions include with whom to conduct engagement and how to define community acceptance, develop capacity-building activities, and regulate this technology. Experts, academics, and funders have suggested that global frameworks, standards, and guidelines be developed to direct research in answering these important questions. Additionally, it has been suggested that ethical principles or commitments be established to further guide research practices. The challenging and interesting contradiction that we explore here is that the vast majority of these conversations transpire with little or no input from potential end-users or stakeholders who, we contend, should ultimately determine the fate of the technology in their communities. The question arises, whose concerns regarding marginalization, disempowerment, and inequity should be included in discussions and decisions concerning how inequities are perceived and how they may be addressed? At what stage will true co-development occur and how will opinions, perspectives and knowledge held by low-income country stakeholders be applied in determining answers to the questions regarding the ethics being debated on the academic stage? Our opinion is that the time is now.https://www.frontiersin.org/articles/10.3389/fbioe.2022.826727/fullgene driveethicsengagementco-developmentresponsible researchresearch guidelines |
| spellingShingle | Ana Kormos Gregory C. Lanzaro Ethan Bier Vanilson Santos Lodney Nazaré João Pinto João Pinto Adionilde Aguiar dos Santos Anthony A. James Anthony A. James Ethical Considerations for Gene Drive: Challenges of Balancing Inclusion, Power and Perspectives Frontiers in Bioengineering and Biotechnology gene drive ethics engagement co-development responsible research research guidelines |
| title | Ethical Considerations for Gene Drive: Challenges of Balancing Inclusion, Power and Perspectives |
| title_full | Ethical Considerations for Gene Drive: Challenges of Balancing Inclusion, Power and Perspectives |
| title_fullStr | Ethical Considerations for Gene Drive: Challenges of Balancing Inclusion, Power and Perspectives |
| title_full_unstemmed | Ethical Considerations for Gene Drive: Challenges of Balancing Inclusion, Power and Perspectives |
| title_short | Ethical Considerations for Gene Drive: Challenges of Balancing Inclusion, Power and Perspectives |
| title_sort | ethical considerations for gene drive challenges of balancing inclusion power and perspectives |
| topic | gene drive ethics engagement co-development responsible research research guidelines |
| url | https://www.frontiersin.org/articles/10.3389/fbioe.2022.826727/full |
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