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Information for delegates to the Global Summit on Childhood

April 2014

See the flyer here and the Power Point presentation here.

Dear Global Summit on Childhood Delegate:

Thank you for responding to our call to action on the issue of genetically modified babies.

The proposal to allow scientists to genetically engineer “three-parent” babies will be delivered to Parliament for a vote next month, May 2014. If it is approved, the United Kingdom would become the first country in the world to authorize scientists to manipulate the traits of future children.

With your help, we hope to be able to convince the authorities in the United Kingdom to postpone authorization of the use of this experimental procedure on human beings and to take time to fully explore the grave safety, efficacy, ethical, social, and policy issues raised by a growing number of scientists, researchers, and advocates across the world.

Here’s what you can do to help right now:

  1. Email and encourage your family, friends, and colleagues to email the authorities in Britain before April 25, 2014, to share your concerns. Here's a sample message and the names and addresses of key British authorities; and
  2. Help us spread the word about this crucial issue to other advocates for children and childhood. Contact us about scheduling  briefings for key organizations with which you are affiliated.

The “three-parent baby” procedure does not cure or treat anyone who is sick. It is designed to help a tiny number of women with a rare form of mitochondrial disease have biologically-related children unaffected by the disease. But these women have alternatives for forming families, from adoption to techniques that screen rather than manipulate embryos.

This procedure would use biologically extreme techniques – some similar to those that produced Dolly the cloned sheep – that are unsafe for women, as well as for future generations of children who would carry these manipulated traits. These children would, of course, have had their genetic makeup altered without their consent.

Techniques to produce “three-parent babies” could throw open the doors – both in terms of technology and policy – to further forms of genetic modification, and lead to a world of biotechnological eugenics. The creation of genetically modified designer babies would alter the relationship between parents and children, making children more like “manufactured products,” and could even create different classes of human beings – those who are genetically modified and those who are not.

More than 40 countries and several international agreements prohibit the genetic modification of children. No country should unilaterally breach this widespread agreement. The world urgently needs the leadership of advocates for children on this issue.

For more information on this technique please see CGS's resource page. The time to act is now and we thank you for joining this crucial effort.

Sincerely,

Enola Aird, Mothers for a Human Future
Marcy Darnovsky, Center for Genetics and Society

Sample letter

Please send your email to these UK authorities:

  • HFEA: [email protected]
  • Department of Health: [email protected]
  • Chief Medical Officer, Dame Sally Davies
    [email protected]
  • The following MPs:
    Robert Flello: [email protected]
    Dr. Therese Coffey: [email protected]
    Jacob Rees-Mogg: [email protected]
    Jim Dobbin: [email protected]
    Jane Ellison: [email protected]

Dear _________,

I am writing as someone who is deeply concerned about the health, well-being and rights of children. I have learned that the UK Department of Health is currently seeking public comments as part of a consultation titled, “Serious mitochondrial disease: new techniques to prevent transmission.”

Although we all want to prevent disease, I am gravely concerned that these experimental techniques would put the safety of the resulting children and future generations at serious risk. Unlike a risky drug trial, so-called “mitochondrial donation” will not be performed on a seriously ill child as a last resort, but will bring a new child into existence. The bar for safety standards must therefore be considerably higher.

It is strange and unfortunate that the UK, which prides itself on being at the forefront of responsible medical innovation, would disregard the many concerns that have been raised about this technique and the inadequacy of evidence for its safety and efficacy. The U.S. Food and Drug Administration held a public meeting in late February to discuss “mitochondrial manipulation.” After two days of presentations and discussions, chair Dr. Evan Snyder said that the “sense of the committee” was that the existing data do not support moving to human trials. According to some scientists serving on the committee, it could take decades to confirm the safety of this technique.

If the UK does allow this technique to move into fertility clinics in just a few months time, it would be the first instance of any nation allowing its scientists to create genetically modified babies. Every other country that has considered the genetic manipulation of embryos has rejected such an extreme measure. Less risky alternatives, such as egg donation and genetic screening of IVF embryos, are available.

I urge you to make children's health, well-being and rights priorities in this complex situation and to reject “mitochondrial donation” in favor of safer alternatives.

Thank you.




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