June 12, 2012 in Genetics (Medical Xpress) -- An
influential independent body has found that a pioneering mitochondrial transfer
technique is ethical. Developed by a team at Newcastle University ,
the technique aims to prevent the transmission of maternally inherited
mitochondrial disorders. Today the Nuffield Council on Bioethics has announced
in a report that the technique would be an ethical treatment option for
affected families, so long as research shows that treatment is likely to be
safe and effective, and families are offered full information and
support.Mitochondria are essential to produce the energy that powers cells.
These small structures are located outside the cell nucleus and have a small
number of their own genes which affect mitochondrial function, but are not
thought to carry information on any other personal characteristics. Faulty
genes in mitochondria can, however, lead to serious disorders involving heart
malfunction, kidney disease, liver disease, stroke, dementia, blindness or
deafness and premature death. These symptoms can begin from any age and there
are currently no cures for mitochondrial disorders. It is thought that around
6,000 adults in the UK
are affected, either through mutated mitochondrial DNA or mutated nuclear DNA
affecting the mitochondria. One in 6,500 children - around 2,000 children in
the UK
- is thought to develop a more serious form of mitochondrial DNA disorder. Newcastle University scientists have pioneered
research into variations of IVF procedures (pronuclear transfer and maternal
spindle transfer) that could prevent the transmission of the genetic mutations
that cause these disorders. These techniques use part of an egg donated by a
healthy individual to replace the faulty mitochondria of the affected mother.
The intention is to give affected families a chance to have healthy children
that are genetically related to them, but born free of mitochondrial disorders.
Such techniques are not currently permitted for treatment in the UK ,
but under existing legislation Parliament could vote to allow them. Dr Geoff
Watts, Chair of the Council’s inquiry into the ethics of these potential
treatments, said: "If further research shows these techniques to be
sufficiently safe and effective, we think it would be ethical for families to
use them if they wished to, provided they receive an appropriate level of information
and support. "They could offer significant health and social benefits to
individuals and families, who could potentially live their lives free from what
can be very severe and debilitating disorders. We would recommend that families
commit to allowing long term follow-up of the resulting children, supported by
a centrally funded register of such procedures performed in the UK ,
which would be accessible to researchers over several decades." Alison
Murdoch, Professor of Reproductive Medicine at Newcastle University, part of
the team which has developed the technique, said: "We welcome the findings
of the Nuffield Council report, it is very reassuring that they support our
aims and we hope the Government will also give support. "We understand the
challenging ethical issues that are associated with our research and welcome
this comprehensive expert review. The Report places the ethical issues within
the context of our aim to prevent suffering due to MID (Mitochondrial Inherited
Disease). Whilst the ethical issues will
still be debated, it encourages the patients who are wishing us success with
our research and hoping that parliament will permit MT-IVF (Mitochondrial
Transplant IVF) treatment in the UK . "IVF started with pioneers
in the UK
and now millions of babies have been born worldwide from this treatment. Here in the UK , we have the opportunity to be
pioneers again. We want to take the knowledge and skills gained from helping
infertile couples to give hope now to those suffering from other medical problems.
"Research that is ethically challenging is difficult for scientists and
regulatory decisions are not easy for politicians who are distant from the
problem. But these problems are insignificant in comparison to those faced by
couples who carry a risk of passing illness to their children. "We are
delighted with the response that we have had from women in the North East who
have volunteered to donate eggs for our research. As a result we are making good progress to
understand the potential success rate and safety of the proposed treatments. As
the Report recommends, this is essential prior to offering MT-IVF
(Mitochondrial Transplant IVF) treatment." The Council concludes that the
proposed treatments would be a form of germline therapy, as changes resulting
from the replacement of mitochondrial DNA would be passed on not only to the
resulting children, but also to the descendants of any girls born from the
techniques, via their eggs. "We understand that some people concerned
about the idea of germline therapies may fear that if such treatments for
mitochondrial gene disorders were approved, a ‘slippery slope’ would be created
towards comparable alterations to the nuclear genome. However, we are only
talking about the use of these techniques in the clearly-defined situation of
otherwise incurable mitochondrial disorders, under strict regulation” said Dr
Watts. "Other germline therapies, including different techniques which
would act on the nuclear genome, would involve further ethical considerations
and would need to be considered separately. Future policy debates would benefit
from a fuller discussion of the ethics of prospective and theoretical germline
therapies than was possible within the remit of this particular report." The
Council’s report finds that no strong social or cultural emphasis is generally
placed on mitochondrial inheritance as a specific element of personal identity.
Many of the social and biological aspects which typically imply a ‘parent’, and
may be relevant in egg donation for reproduction, do not apply to mitochondrial
donation. The Council therefore suggests that if the treatments were made
available, mitochondrial donors should not have the same status in regulation
as reproductive egg donors. This would mean, for example, that it should not be
legally required for mitochondrial donors to be identifiable to the people born
from their donation. Clinical geneticist and member of the Working Group
Professor Frances Flinter said: "Whilst these children would have a
genetic connection to three people, only 0.1% of their DNA would come from the
donor and 99.9% of their DNA from their parents. As far as we know,
mitochondrial genes alone create no unique identifiable genetic link between
the child and donor. The child’s recognisable likeness to family members would
come from their parents’ nuclear DNA. Given these, and other reasons, we think
it is both legally and biologically inaccurate to refer to a mitochondrial
donor as a ‘second mother’ or ‘third parent’ to the child."
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