Credit: Nuffield Council on Bioethics
Inherited genetic disorders caused by mutated mitochondrial DNA are progressive and can cause a wide spectrum of severe health problems including heart and other major organ failures, stroke, dementia, blindness, deafness and premature death. Symptoms of these disorders can appear at any time from birth, on a wide range of severity. There is currently no cure for these disorders. New variations of IVF techniques are being developed that aim to replace damaged mitochondria by using part of a donated egg from a healthy individual. The intention is to allow women carrying disorders of mitochondrial DNA the chance to have healthy children that are genetically related to them, but born free of those disorders. Such techniques are not currently permitted for treatment use under UK legislation.
The following two videos discuss the procedure which the Council declared to be ethical involving DNA from three parents to correct a genetic disorder that would otherwise be passed along by the mother.
Credit: Newcastle University
Credit: Wellcome Trust
This report sets out the ethical considerations arising from the possible use of such techniques for treatment in the future. The issues that it discusses include:
Implications for identity: the report considers a number of different notions of ‘identity’, discusses whether treatments for mitochondrial disorders might affect identity in some ways, and considers what significance this might have with regards to the acceptability of such treatments.
Germline therapies: the Working Group concluded that donation treatments for mitochondrial disorders would constitute a form of germline gene therapy. The report discusses various concerns about germline therapies, and how treatments involving mitochondrial DNA might differ from other types of germline therapy.
The introduction of novel techniques and follow-up of children: all treatments – new and established – are likely to involve some degree of risk and need to be regarded as experimental when first introduced. However, given the germline effects of mitochondrial donation techniques, particular issues are discussed concerning the ways in which any future treatment would need to be regulated and monitored, with follow-up of the families concerned.
Parentage of the child: mitochondrial donation techniques involve the introduction of mitochondrial DNA from a donor, so the resulting child would be born with a genetic contribution from a third party. The report discusses the potential significance of this in biological, social and legal contexts.
The status of the mitochondrial donor: the mitochondrial donor would go through the same procedures as a reproductive egg donor does when donating eggs for fertility treatments. The report considers whether the two types of donation should be treated in similar ways, or whether there are significant differences in terms of how the mitochondrial donor should be regarded, and the regulatory implications of this.
Credit: Nuffield Council on Bioethics
Implications for wider society and future generations: some people suggest that as mitochondrial DNA is inherited from the egg, any future mitochondrial donation treatments should be limited to creating boys so that possible adverse future impacts will not be passed on. This issue is discussed, as well as questions about attitudes towards people with mitochondrial disorders, and about other possible future uses of the techniques.
After considering a number of ethical questions, and having heard from a wide range of contributors, the Working Group identified a number of issues that require further consideration. The Council believes that continuing debate about these issues will be important, but it also reached a number of conclusions that the Government and others may wish to consider.
Nuffield Council on Bioethics Working Group concludes:
Given the above and subject to the appropriate oversight, we believe that as a research objective it is ethical to gather further information about pronuclear transfer and maternal spindle transfer in order that they can be considered for treatment use.
Issues for further consideration
Treatment as part of a research trial
We believe that in the first instance, novel techniques such as pronuclear transfer and maternal spindle transfer (or any comparable future treatment) should only be offered as part of a research trial in centres specialising in mitochondrial disorders. Consent to follow up would need to be included as a mandatory part of parental consent to participation in the trial.
Regulation: follow-up
Families using such techniques should commit to allowing very long term follow-up of their children and families in order to further knowledge about the outcomes of these techniques. To support this aim we would recommend the creation of a centrally funded register of any such procedures performed in the UK, accessible to researchers over several decades.
Parentage of the child
Although the perception of the personal and social relationships created by egg or embryo reconstruction would be essentially a matter for the individuals concerned, it is the view of the Working Group that mitochondrial donation does not indicate, either biologically or legally, any notion of the child having either a ‘third parent‘, or ‘second mother‘.
Regulation: status of the mitochondrial donor
The donor of mitochondria should not have the same status in regulation as a reproductive egg or embryo donor in all aspects. As part of this, we do not believe mitochondrial donors should be mandatorily required to be identifiable to the adults born from their donation.
Further issues for discussion
The novel treatments under discussion were viewed by the Working Group as examples of germline therapies. The wider policy debate could benefit from a fuller discussion of the ethics of the different kinds of prospective and theoretical germline therapies than was possible within the remit of this report. This would include potential therapies that would act on the cell nucleus with heritable effects, and therapies which might involve nuclear transfer in its various forms.
Discussion event: Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review
Mitochondrial DNA disorders – Introduction
Mitochondrial DNA disorders – Launch seminar presentations
Mitochondrial DNA disorders – Media coverage
Mitochondrial DNA disorders – About the Working Group
nanopatentsandinnovations.blogspot.com/2012/06/new-way-to-prevent-inherited-disease.html
THE ILLUMINATI AT WORK, THESE EVIL ENTITIES. HOME BASE OF THE FREEMASONS IS THE UK LITERALLY SPEAKING, GOD SAVE US FROM THESE LUCIFERIANS!
who cares what the Brits ..say I sat fk u!
Well he’ll is going to be full these ignorant sole are playing god and that is not going to work with the real god it is gone to far