Mitochondrial disease – the definitive treatment – Lets go with this. Well done Newcastle University!

Three-parent baby’ fertility technique could be made legal
A fertility treatment which eliminates hereditary disease by
engineering babies to carry healthy DNA from a third biological parent
could be legalised next year.

Nick Collins

By Nick Collins, Science Correspondent

Members of the public are being asked whether families with a genetic
risk of incurable conditions like muscular dystrophy should be allowed
to use the DNA of a third party to create healthy children.

Although the resulting babies would inherit a small fraction of their
DNA from the donor and not their mother or father, the procedure would
spare all future generations from a host of rare and debilitating
conditions.

The technique is currently forbidden as a treatment, but a public
consultation launched today will help inform a decision by Jeremy
Hunt, the health secretary, on whether the clinical benefits outweigh
any ethical concerns.

Experts accept the technique, which involves genetically modifying a
human egg or embryo, enters “unchartered territory” and raises serious
ethical questions.

As well as the moral implications of engineering embryos, there are
questions over how the procedure would impact on a child’s sense of
identity and whether they should be allowed to contact the donor later
in life.
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Should Mr Hunt decide to give the treatment the green light the
technique could be written into law as early as next year, making
Britain the first country in the world to allow human trials.

Lisa Jardine, chair of the Human Fertilisation and Embryology
Authority (HFEA), which is conducting the consultation, said the issue
was of “enormous public interest”, and not just to affected families.

She said: “We find ourselves in unchartered territory, balancing the
desire to help families have healthy children with the possible impact
on the children themselves and wider society.”

Comparing the ethical debate with the birth of Louise Brown, the first
IVF baby, in 1978, she added that many people had expected the child
to be a “monster” and seen conception outside the womb as “absolutely
appalling”, but that IVF has since become commonplace.

She said: “Here, we are going that mile further which is a genetic
modification of the egg. That is uncharted territory. I feel very
strongly that once we have genetic modification we have to be damn
sure that we are happy, because this is not about us.

“This is not about our children. It’s not even about our
grandchildren. It’s about many generations down the line what the
consequences might be.”

An estimated one in 200 children born in Britain each year is thought
to have some form of mitochondrial disease, with defects in anywhere
between a handful and 90 per cent of their mitochondria.

In the vast majority of cases, where the number of defects is low,
there are no symptoms and the condition is never even diagnosed.

But in about one in 6,500 people the level of damage causes the
development of severe medical conditions including muscular dystrophy
and ataxia, a neurological condition affecting balance, coordination
and speech.

About 99.8 per cent of our DNA, including all our visible
characteristics, is contained in the cell nucleus and is passed down
from our father and mother in equal measure.

But a small fraction consisting of 37 genes is located in the
mitochondria, the tiny structures which supply power to cells, and is
inherited solely from the maternal side.

The new technique, being developed by researchers at Newcastle
University, is designed to tackle a range of genetic conditions passed
to children by their mothers through mutations in these genes.

The mutations can cause cells to malfunction or fail completely,
resulting in complications which are especially severe in parts of the
body which use the most energy – the brain, heart and muscles.

By removing the nucleus from a woman’s egg before fertilisation and
implanting it into a donor egg which has had the nucleus removed, and
then using the egg in traditional IVF, doctors could cut damaged
mitochondria out of the family line.

A similar technique could be used on an embryo by removing the nuclear
DNA from the mother’s egg and father’s sperm and implanting them into
a healthy donor embryo with its nuclear DNA removed.

The resulting child would inherit their identity from their mother and
father, but they and all future generations would have the
mitochondrial DNA of the donor.

A survey of 800 people by the Progress Educational Trust found that
two thirds supported the use of the technique while a third opposed
it, while a report by the Nuffield Council on Bioethics last year
claimed the approach would be ethical.

The public consultation, being overseen by the Human Fertilisation and
Embryology Authority, will run until December 7 with members of the
public encouraged to register their views via a dedicated website.

There will also be two public events held in London and Manchester
where people can learn about the technique and register their views. A
report compiling the feedback will be published in March.

The panel appointed to oversee the consultation includes scientists as
well as leading voices opposed to the treatment including Josephine
Quintavalle, of the Comment on Reproductive Ethics campaign group.

She said: “This is not about curing disease in an existing human
being, it is creating a new kind of embryo and the alterations you
have made will pass on to future generations. You are playing around
with the building blocks and restructuring how human life is created.

“Although IVF might be considered artificial it is just a way of
repeating what happens biologically, but this is a considerable step
in a completely different direction where you are changing those
building blocks forever.”

The Human Fertilisation and Embryology Act contains a window which
would allow the current ban on techniques which alter inherited
genetic material to be overturned by Parliament.

But the HFEA would have the final say on whether the treatment could
be used in clinics, and it is likely that much more information on the
safety and effectiveness of the technique would be needed before that
was given.

Prof Mary Herbert, part of the team researching the technique at
Newcastle University, said: “We want to make a difference to the lives
of our patients who live with mitochondrial diseases.

“These can seriously affect the quality of life of both patients and
their families and it often affects several generations. If we can
stop that happening it will be a tremendous help for many hundreds of
people who suffer with these diseases.”

Dr Marita Pohlschmidt, of the Muscular Dystrophy Campaign, said: “For
women who have been dealt the heavy blow of living with mitochondrial
disease, the prospect of bearing healthy children is of immeasurable
value.

“We believe that this technique could open up the possibility of
motherhood untainted by the fear of passing on a painful, debilitating
condition to their future children.”