Genome Editing Meeting - Shared screen with speaker view
Professor Alta Charo
yes I see him
LITTLER, Katherine
Dear All, Thank you for joining, we will start on the hour. We are just letting everyone join at the moment.
Professor John Reeder
Dear all, we will have opportunity to put some questions to the committee in the next session. Please use the Q&A function to note any questions you would like to ask. Also, remember that multi language interpretation is available through the language button at the bottom of the zoom window.
Professor Robin Lovell-Badge
Siswanto: I hope our 5th recommendation answered your question. We would hope that others at the institute would ‘speak up’ and report the activity. The WHO can’t penalise anyone, but funders, journals, and peer groups can withdraw support if there are no local penalties for failing to register the trial.
Professor Robin Lovell-Badge
Bhaskar: The ‘scenarios’ including in the Governance Document part of our Report may help in this respect.
Professor Anne Wangari Thairu-Muigai
Bhaskar, no we did not consider animals and plants. Our remit was Human genome editing. However we recognize that gene editing technologies are advancing and are being applied in plants and animals
Professor Alta Charo
the report focused solely on human applications. Animal and plant editing is also important to public health but was beyond the terms of reference for this committee
Professor Robin Lovell-Badge
Bhaskar: A few of us on the committee are familiar with the research being done on genome editing of plants and animals, but many of the issues are distinct from those of genome editing in humans - other bodies are addressing these.
Professor Alta Charo
@Balakrishnan - indeed, the report actually lays our a list of elements that a country must consider when constructing their policies and regulatory responses.
Carl Becker
To whom should a whistle-blower report, and how will the recipient of such “rogue reports” balance the privacy of the whistle-blowers with the need to confirm the veracity of the reports? (If you’ve considered this issue….)
Professor Alta Charo
the report suggests that there is a need for a collaborative effort among national regulators, professional societies and such to convene and share information about worrisome developments. Initially we recommend that WHO use its convening powers to facilitate this process.
Professor Anne Wangari Thairu-Muigai
Bhaskar, this is true. The current costs of treatments are quite prohibitive.
Carl Becker
Your work is very needed and much applauded!!
Professor Anne Wangari Thairu-Muigai
This is something that we discussed at length and we were clear that it is important that the treatments are accessible and that there is equity in distribution or disbursment
Pin Lean Lau
Thank you to the committee and WHO and all for facilitating this highly important discussion.
Grace Kago
This was very informative and encouraging to hear! Thank you all for your work & commitment to making gene editing more equitable & ethical.
Grace Kago
** gene editing conversations
Professor Robin Lovell-Badge
We hope our recommendations about intellectual property will help address some of the problems about costs, but also plea for scientists and companies to consider these when first embarking on a project to use genome editing to treat or avoid a genetic disease. Using techniques that allow many to be treated rather than personalised treatments that are always expensive, should help.
Muhammad Alkawi
Thank you, a much needed work that have to be pursued diligently
Francoise Baylis
Thank you to all attendees. Please help us to build this new world where the benefits of human genome editing are available to all. We do not want personalized medicine for a elite few.
Sarah Norcross
An in-depth set of documents which covers challenges many of which are not unique to genome editing. I look forward to seeing their impact over time.