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National Institutes of Health Director and Top Science Experts Call for Global Moratorium on Editing Heritable Genes

Do you support a global moratorium on editing heritable genes?

by Axios | Updated on 3.14.19

National Institutes of Health director Francis Collins and top science and ethics experts in the U.S. and 6 other countries today called for an international 5-year moratorium on editing human germlines, or the type of genes that are heritable.

Why it matters: Spurred by the recent discovery of twin babies born after being edited as embryos in China, scientists and ethicists have debated what steps should happen next — and these experts say a temporary moratorium is needed until it's no longer believed that "the risk of failing to make the desired change or of introducing unintended mutations (off-target effects) is still unacceptably high."

What's happening: The commentary from scientists and ethicists published in Nature Wednesday as well as a supportive statement from Collins — calls for a 5-year moratorium and the development of a global framework to support future moves on germline editing.

Of note: The suggested moratorium would not cover germline editing for research purposes only, or the editing of non-germline cells in humans (called somatic cells) to treat diseases.

"Certainly, the framework we are calling for will place major speed bumps in front of the most adventurous plans to re-engineer the human species. But the risks of the alternative — which include harming patients and eroding public trust — are much worse."

Nature commentary

"Until nations can commit to international guiding principles to help determine whether and under what conditions such research should ever proceed, NIH strongly agrees that an international moratorium should be put into effect immediately. "

—Francis Collins in published statement

Meanwhile, the World Health Organization has formed an expert panel that is meeting in Geneva March 18–19 to recommend governance mechanisms and develop a 12- to 18-month work plan.

Details: According to a WHO spokesperson, its advisory committee plans to...

  • Review current research and applications being conducted in human gene editing, its potential uses and societal attitudes toward different uses of this technology.
  • Advise the secretariat and director general at WHO on potential oversight mechanisms for future research and application of the technology going forward.
  • Make recommendations on global governance structures for research and its application in human genome editing.
  • "Core to this work will be understanding how to promote transparency and trustworthy practices and how to ensure appropriate risk/benefit assessments are performed prior to any decision on authorization," spokesperson Tarik Jasarevic tells Axios.

Jonathan Moreno, medical ethicist from the University of Pennsylvania, tells Axios the use of the word "moratorium" today is strong and perhaps "pause" may have been a better choice.

  • "They don't want a treaty, but it is governmental, what they are asking for," he adds.
  • Moreno says he hopes WHO builds on the foundation from the 2017 consensus study report on human genome editing by the National Academies of Sciences, Engineering, and Medicine, with rules to boost transparency and scrutiny.
Axios

Written by Axios

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Leave a comment
(32)
  • Reinier
    Voted Oppose
    03/14/2019
    ···

    Those of you who oppose it clearly are in delusion. This is meant to treat genetic disorders such as down syndrome, cystic fibrosis, sickle cell anemia, hemophilia, Huntington’s disease, the list goes on and on.

    Like (6)
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  • RjGoodman
    Voted Support
    03/14/2019
    ···

    There are serious ethical issues that must be addressed before this technology is used.

    Like (5)
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  • John
    03/16/2019
    ···

    We will have an interesting choice. Preventing genetic diseases and boosting cures for acquired diseases genetically could be the greatest thing medicine ever accomplished. On the other hand, designer children for the wealthy, supermen armies that follow all commands, and unbeatable athletes will likely follow, here or elsewhere. Also, the inevitable botched cases that will occur along the way. Are we ready for this? We can’t agree on abortion, death penalty, torture, animal rights, etc. How about this?

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  • Tooluser1
    Voted Oppose
    03/14/2019
    ···

    More fear mongering? Sad.

    Like (5)
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  • CatherineCampbell
    Voted Support
    03/14/2019
    ···

    don't mess with Mother Nature. She doesn't like it and she holds all the cards. We also need to maintain as much biodiversity as possible. If you're not sure why just remember the Potato Famine in Ireland which was caused by lack of biodiversity. Imagine how our lives would be if we engineer cattle to the point that we eliminate their biodiversity and then Mother Nature strikes with a disease that kills them all. And the same thing applies to humans.

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  • Cindy
    03/15/2019
    ···

    Why does it have to be “global”, why is our congress not addressing issues oh yes they are doing more investigations. The US needs to set standards appropriate to how it’s continents view this issue not an NIH Director.

    Like (1)
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  • samiam6
    Voted Oppose
    03/14/2019
    ···

    Why declare another 'rule' that only half the world will acknowledge.

    Like (4)
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  • Vanguard
    Voted Support
    03/14/2019
    ···

    The genetics revolution may have many benefits, but there is a need to make sure that the risk of error is low especially when editing genes. There could be beneficial things that could come from gene editing, but I must ask is it really worth the risk of receiving the these benefits if there is a high chance that there may be possible miscalculations due to lack of knowledge? By pausing efforts to genetically modify humans it helps prevent unnecessary harm and keep people safe. It also keeps the genetics industry from trying to do something reckless by banning them from doing so until knowledge on the subject has been acquired and the necessary regulations are in place. The government should strictly regulate genetic modification in humans in order to keep people safe.

    Like (3)
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  • eliyak
    Voted Oppose
    03/14/2019
    ···

    I mean, come on. So many genetic diseases could be cured.

    Like (3)
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  • Ken
    Voted Support
    03/14/2019
    ···

    This Dr. Jekyl Mr. Hyde attempt of changing the uniqueness of humans sounds like a chapter out of a science fiction movie. What would be the long range affect on the individual and on society itself. Boys from Brazil on steroids.

    Like (3)
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  • Bill
    Voted Oppose
    03/14/2019
    ···

    A moratorium is not necessary nor likely to be effective mitigation for risk. Moreover, we don’t need government involved.

    Like (2)
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  • Ronald
    Voted Oppose
    03/14/2019
    ···

    Nice idea. Who would enforce, How would they enforce the "ban on editing gene moratorium? Humanity is opening Pandora's box, but how will we stop the Chinese, or someone for opening it? Will the damage be worse, or less for the first to open this box?

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  • Benni
    Voted Support
    03/14/2019
    ···

    We don’t know much about this technology. We should do more research before putting it into practice.

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  • John
    Voted Support
    03/14/2019
    ···

    There needs to be an agreed upon protocol for these procedures.

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  • Jason
    Voted Support
    03/14/2019
    ···

    This technology comes with a lot of concerns. Could cancer possibly be ended with gene editing? Yes. Could some other unforeseen germ or deadly organism be accidentally produced? Yes. For now let’s stick with the devil we know until more research can be concluded and shared.

    Like (1)
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  • Azrael
    Voted Oppose
    03/15/2019
    ···

    Let scientist be scientists Scientist unlike politicians have moral and ethical standards

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  • David
    Voted Support
    03/14/2019
    ···

    We have neither the wisdom nor the ethics to be editing genes at all let alone specific, heritable genes. A five year moratorium is insufficient. A full ban is needed.

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  • Jim2423
    Voted Oppose
    03/14/2019
    ···

    Hope much are you willing to pay to have the perfect child? I know this sounds great but I can see Companies getting rich off people frailties.

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  • Robert
    Voted Support
    03/14/2019
    ···

    We will become “Ancient Aliens” who probably hacked our own DNA😁

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  • Julia
    Voted Oppose
    03/14/2019
    ···

    Research should be supported.

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