14th Forum – Singapore, 12 and 13 November 2019

Theme of the Meeting
Genome editing for human benefit: ethics, engagement and governance

Organisers
Wellcome and the National University of Singapore

Supported by:

  • Wellcome
  • Medical Research Council-United Kingdom (MRC UK)
  • Bill & Melinda Gates Foundation
  • National Institutes of Health

Planning Committee

Members of the Planning Committee for this meeting are:

  • Fabiana Arzuaga, Ministry of Science, Technology and Productive Innovation, Argentina;
  • Jantina de Vries, University of Cape Town, South Africa;
  • Paulina Tindana, University of Ghana, Ghana;
  • Elinor Wanyama Chemonges, Uganda Virus Research Institute, Uganda;
  • Maneesha Inamdar, Jawaharlal Nehru Centre for Advanced Scientific Research, India;
  • Jim Lavery, Emory University, USA;
  • Claudia Emerson, McMaster University, Canada;
  • Peter Mills, Nuffield Council on Bioethics, UK;
  • Samantha O’Loughlin, Imperial College London, UK;
  • Lucy Carter, The Commonwealth Scientific and Industrial Research Organisation, Australia;
  • Michael Selgelid, Monash Bioethics Centre, Australia;
  • Katherine Littler, World Health Organisation, Switzerland and
  • Teck Chuan Voo, National University of Singapore, Singapore

Programme and Presentations

The programme is available here. The individual papers and presentations are available below.

Videos from the meeting will be available early 2020.

Keynote presentations

 

Theme 1: Human germline editing: Jiankui He case

  • Introduction to the theme
    Michael Selgelid, Monash University, Australia
  • Gene-edited babies: The political, governance and cultural issues and why China?
    Yonghui Ma, Xiamen University, China (guidance and policy paper and presentation not available)
  • Public participation and regulation of human germline gene editing in China
    Qi Chen, Xiamen University, China (case study and presentation)
  • Silence and complicity in the case of the first gene-edited babies
    Owen Schaefer, National University of Singapore, Singapore (case study and presentation)

 

Theme 2: Human germline editing: Regulatory and policy responses

  • Introduction to the theme
    Fabiana Arzuaga, Ministry of Science, Technology and Productive Innovation, Argentina
  • Societal consensus’ as a requirement for germline gene editing
    Markus Labude, National University of Singapore, Singapore (guidance and policy paper and presentation)
  • Is prohibition a solution? A reflection on embryo gene editing in the Civil and Commercial Code of Argentina
    Ana Palmero, National Ministry of Health, Argentina (guidance and policy paper and presentation)

 

Theme 3: Governance of genome editing: National and regional perspectives

  • Introduction to the theme
    Teck Chuan Voo, National University of Singapore
  • Research governance of heritable genome editing rooted in salient value sharing
    Mika Suzuki, Kyoto University, Japan (guidance and policy paper and presentation)
  • Prudence in germline gene editing: The urgent need for collaborative partnerships in Africa
    Gerald Ssebunnya, Africa Institute for Human Dignity, Botswana (guidance and policy paper and presentation)
  • Readiness level of the Brazilian regulatory framework: Can we face genome editing?
    José Ricardo Jensen, Instituto Butantan, Brazil (guidance and policy paper and presentation)
  • Policy on gene editing and gene drive research in the Caribbean
    Derrick Aarons, Caribbean Research Ethics Education Initiative, Turks & Caicos Islands (guidance and policy paper and presentation)

 

Day 1 summary – key issues arising in themes 1-3

  • Samantha O’Loughlin, Imperial College London, UK (presentation)
  • Anant Bhan, Sangath and Yenepoya University, India

 

Theme 4: Engagement and social acceptability

  • Introduction to the theme
    Lucy Carter, The Commonwealth Scientific and Industrial Research Organisation, Australia
  • An unprecedented outreach event in Argentina to raise awareness about gene editing: A communication challenge to engage the general public
    Sebastián Barbosa, Ministry of Science, Technology and Productive Innovation, Argentina (case study and presentation)
  • Co-developing community-wide acceptance model with affected stakeholders for genetic approach of vector control
    Léa Paré Toé, Institut de Recherche en Sciences de la Santé, Target Malaria, Burkina Faso (case study and presentation)
  • Public engagement towards eliciting public views and promoting dialogues on genomic research in India
    Manjulika Vaz, St John’s Research Institute, India (case study and presentation)

 

Theme 5: Governance of gene drive research

  • Introduction to the theme
    Jantina De Vries, University of Cape Town, South Africa
  • Providing sound policy frameworks for responsible gene drive research: An analysis of the governance landscape and priority areas for further work
    Isabelle Coche, Outreach Network for Gene Drive Research, Portugal (guidance and policy paper and presentation)
  • Guiding community acceptance processes for gene drive research – available guidance, gaps, and experiences from Mali, Burkina Faso and Uganda
    Delphine Thizy, Target Malaria, Imperial College London, UK (guidance and policy paper and presentation)

 

Pecha Kuchas

Chair: Carla Saenz, Pan American Health Organisation, USA

  • Governance of gene editing in Africa
    Syntia Nchangwi, University of Cape Town, South Africa (abstract)
  • Pathway to genome editing in Nigeria
    Simisola Akintola, University of Ibadan, Nigeria (abstract and presentation)
  • “Mirror, mirror on the wall…who is the most ethical of us all?” Decoding genetic studies from Pakistan: A review of international, regional and local guidelines and compliance
    Natasha Anwar, Aga Khan University Hospital, Pakistan (abstract and presentation)
  • Articulation between an Argentine patient organization, the Argentinian state and researchers from the University of Huazhong (China) for inclusion of 10 Argentine patients in a ND4 gene therapy trial for Leber hereditary optic neuropathy
    Marcela Ciccioli, Stargardt APNES-Retina, Argentina (abstract and presentation)
  • Analysis of China’s CRISPR babies using the Emanuel Framework
    Sofia Salas, Clínica Alemana Universidad del Desarrollo, Chile (abstract and presentation)
  • Challenges of a Latin American startup using CRISPR for diagnosing sub-tropical diseases
    Federico Pereyra-Bonnet, National Council of Science and Technology, Buenos Aires University, Argentina (abstract and presentation)

 

Key themes arising from the meeting

Chair: Michael Parker, Oxford University, UK

Panellists:

  • Maneesha Inamdar, Jawaharlal Nehru Centre for Advanced Scientific Research, India (ethics of human genome editing)
  • Teck Chuan Voo, National University of Singapore, Singapore (engagement and social acceptability in human genome editing)
  • Lucy Carter, The Commonwealth Scientific and Industrial Research Organisation, Australia (engagement and social acceptability in gene drive research)
  • Katherine Littler, World Health Organisation, Switzerland (governance of human genome editing and gene drive research)

 

Presentation of awards and announcement about next year’s meeting

Phaik Yeong Cheah, Mahidol Oxford Tropical Medicine Research Unit, Thailand
Ross Upshur, Toronto University, Canada

Reports
A background paper was prepared in advance of the meeting and provides an overview of the key ethical issues raised by this important topic.

This slide deck provides an overview of the meeting content and discussion.

A meeting report will be available early 2020.

We are very interested to hear about participants’ post-meeting activities. Please do keep us up-to-date by emailing gfbr@wellcome.ac.uk.


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