Second WHO Expert Advisory Committee to Develop Global Standards for Governance and Oversight of Human Genome Editing

Speech by Tedros Adhanom Ghebreyesus, WHO Director-General

25 August 2019

Justice Edwin Cameron, Dr Peggy Hamburg,

Distinguished members of the committee,

Colleagues and friends,

Good morning, and welcome to WHO. It’s a pleasure to host you once again to consider this very important issue.

When you met last time, you recommended that it would be irresponsible for anyone to proceed with clinical applications of human germline genome editing, and that regulatory authorities in all countries should not allow any further work in this area until its implications have been properly considered.

I accepted those recommendations, which are now being communicated to more than 150 of our regional and country offices.

You also gave us some homework.

You asked us to start work on developing a registry of research involving genome editing.

At this meeting you will hear about the progress we have made in developing that registry.

You also asked us to engage with the broadest possible range of stakeholders to share and collect information. This we have also started to do. Last month, we put out our first call for contributions. You will discuss those contributions at this meeting.

This underlines a key point: it’s vital that we make this process as transparent and inclusive as possible. Too often, important voices are missing from discussions about science policy.

There are different views among different stakeholders in different parts of the world. I applaud your efforts to understand societal attitudes to this issue.

I’m also pleased that you have chosen to spend a day seeking external expert advice, which will help to complement the expertise of this committee.

It is critical that you stay abreast of relevant advances and developments outside of this committee.

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Since your last meeting, some scientists have announced their wish to edit the genome of embryos and bring them to term.

This illustrates how important your work is, and how urgent.

New genome editing technologies hold great promise and hope for those who suffer from diseases we once thought untreatable.

But some uses of these technologies also pose unique and unprecedented challenges – ethical, social, regulatory and technical.

History teaches us that science has enormous power to do good, and to do harm.

Your task is to chart a course for the world to maximize the benefits of these new technologies, and avoid the harms.

This is far from a simple task, but you are uniquely qualified to carry it out.

One of this committee’s greatest strengths is its diversity, both geographically and in terms of the expertise represented.

I often use this committee as an example of how we are seeking to transform WHO to make it more science-based and to move from reacting to events, to helping to shape them.

This is why the United Nations and WHO exist – to foster international cooperation by bringing together the world’s leading experts to find shared solutions to shared challenges.

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As you begin your discussions, I have three specific requests for you.

First, I urge you to continue working towards a framework for the governance of human genome editing. This will be a central output of your work.

The general approach outlined at your last meeting was an important milestone. Over the next few days, I hope you can make progress in fleshing it out.

Second, I encourage you to review the available information on relevant regulatory frameworks around the world.

A better understanding of what rules are currently in place will help to highlight what more needs to be done.

To this end, we are writing to all our offices, seeking information on relevant national measures. As this information becomes available, it will be fed directly into your work.

Third, practical action is particularly valuable. Your efforts to help us establish a registry, and to survey relevant regulations around the world, make important contributions to understanding what relevant research and development is being pursued and under what rules.

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You are aware of the intense public interest in this subject. The world is watching and waiting for the outcomes of your deliberations.

The stakes are high. The issues you are discussing could have profound consequences for the future of humanity.

I look forward to receiving any further recommendations or advice you may have. Should you identify actions you think need to be taken, I encourage you to convey them to me as quickly as possible. I am at your disposal, full-time.

We recognize that you need time and space to sort through these issues, and we are committed to giving you that time and space.

Thank you once again for your valuable time and expertise. Thank you so much for your commitment. I wish you a very fruitful discussion, and I look forward to hearing about your conclusions.

Thank you.