1.UK: Genetically engineered babies unless you act now!
2.Mitochondria Replacement Would Forever Alter the Human Germline. Do You Want a Say?
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1.Genetically engineered babies unless you act now!

Dear friends,

You probably hoped it wouldn't come to this, but it has. British scientists are calling for the legislation for a technique for creating babies with altered genes. There is no good medical argument for doing this. There are less than two weeks to persuade the government that the consequences of doing so would be disastrous. If you care about genetic engineering of crops and animals you should care about the threat of GE children.

Although microbes, plants and animals have been genetically engineered, surprisingly for the last 20 years governments around the world have strongly resisted scientists' attenpts to do the same to humans. Now scientists have found a way to cross this line without appearing to do so. Do not be fooled! Although these techniques are not genetic modification, they will result in babies whose genes have been intentionally altered. These genes will be passed down the female line to all their descendents, so this is genetic engineering. Once this crucial ethical line has been crossed it will be impossible to go back, and we will rapidly descend into the future of GM 'designer babies' eugenics that everyone wants to avoid. The only way to avoid that is to insist on the ban on any form of genetic engineering of humans.

Do not succumb to the emotional blackmail about preventing suffering! The birth of children with genetic diseases can already be prevented in a number of ways. All that the new techniques of 'mitochondrial replacement' add is that the mother will be genetically related to her child. This is a social, not a medical benefit, and although anyone can understand parents' wishes to be related to their child, the choice is not about preventing suffering or doing nothing. That social benefit for a very small number of women in no way justifies the consequences of crossing the crucial ethical and political line in the sand. The attached briefing gives more details of the technicalities and arguments.

This is a crucial moment, what may be one of the last chances to prevent a future of 'designer babies'. The British government needs to be told firmly that we do not agree with the legislation of these techniques. There is an online consultation at  http://mitochondria.hfea.gov.uk/mitochondria/ which must be completed by December 7th. PLEASE TAKE A FEW MINUTES FOR THE SAKE OF THE HUMAN FUTURE, FILL IN THE CONSULTATION NOW! Please forward this message to appropriate lists and contacts, and let HGA know what you are doing.

David King 
david.kingAThgalert.org
Human Genetics Alert
November 17 2012

[Contact David for a short HGA briefing on this]
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2.Mitochondria Replacement Would Forever Alter the Human Germline. Do You Want a Say?
Jessica Cussins 
Center for Genetics and Society, November 15 2012
 http://www.biopoliticaltimes.org/article.php?id=6518
(Go to link above for links in original article)

The Center for Genetics and Society has sent a letter strongly recommending against changing the United Kingdom law that – like those in dozens of other countries – prohibits procedures that would alter the genes we pass on to our children. Please consider adding your voice to this effort here.
 http://mitochondria.hfea.gov.uk/mitochondria/have-your-say/

A research team at the United Kingdom's Newcastle University is working on techniques that produce human eggs containing genetic material from two women, and using them to create human embryos – and potentially children – with DNA from three parents. Children born after such "mitochondrial replacement" procedures would pass these genetic changes to their children and all subsequent generations.

Testing the procedure in humans is currently illegal in the UK because it would constitute inheritable genetic modification – that is, it would irreversibly alter the human germline. Over 40 countries prohibit human germline engineering because of its profound social and ethical consequences, but the Newcastle researchers are eager to change the UK law so that they can bring their technique to clinical trial.

Mitochondrial replacement would not alter genes in the nucleus. But the prohibition against human germline engineering represents a critical line in the sand. If the Newcastle proposal to alter mitochondrial genes is approved, we will have crossed that line; it will be harder to argue against other inheritable genetic modifications in the future.

Like the research team from Oregon Health and Science University whose research was recently in the headlines, the Newcastle scientists stress that their procedures are worthwhile because they would enable women with unhealthy mitochondria to have a (mostly) genetically related child without mitochondrial disease. Inherited disease caused by mitochondrial DNA is relatively rare, affecting about 1 in 5,000-10,000 births. Women at risk of having an affected child have several other (far less experimental) options available to them, so these extreme procedures would be considered only in a very small number of cases. Because mitochondrial DNA and nuclear DNA interact with each other consistently and in complex ways that are imperfectly understood, the health risks to any future children created using these procedures would be very large. And these future children would obviously be unable to give their consent.

The Human Fertilization and Embryology Authority (HFEA) ruled last year that a minimum number of further tests would be required before the safety of mitochondrial replacement in humans could be assessed (section 5.4). Even though these tests have not yet been completed, the HFEA is moving forward in an effort to gauge the public’s point of view on the controversial technology. They have launched a public consultation to debate the ethical and social implications of the two novel technologies under discussion: pronuclear transfer (PNT) and maternal spindle transfer (MST).

HFEA’s consultation website has information on the science behind the new techniques being proposed and on various ethical concerns. The results of the consultation will be passed on to the Secretary of State for Health in the UK who will make the next decision as to whether these technologies can move to clinical trial in humans.

Please voice your thoughts or concerns on these issues by submitting them to the HFEA's public consultation by December 7. For more information on the many social and ethical implications of mitochondrial transfer, please see the letter the Center for Genetics and Society has submitted to the Chair of the HFEA and to the Secretary of State for Health in the UK here. 
 http://mitochondria.hfea.gov.uk/mitochondria/have-your-say/

Please also check back for updated information on our website.