GENET archive


8-Humans: UK ruling on embyros clears the way for 'designer babies'

                                  PART I
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TITLE:  HFEA agrees to extend policy on tissue typing
SOURCE: Human Fertilisation & Embryology Authority, UK, Press Release
DATE:   21 Jul 2004

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HFEA agrees to extend policy on tissue typing

The Human Fertilisation & Embryology Authority has decided to extend the
rules allowing embryos to be tested in order for families to have a child
who could be a tissue match for a seriously ill brother or sister.

The test involves taking a cell sample from the embryo at around the
eight cell stage. It allows a clinician to tissue type to find a match
for an existing child. In 2001 the HFEA adopted a precautionary approach
when considering this procedure and decided that it should only be
permitted when it was combined with tests to enable parents to select
embryos which are free from a serious genetic disorder. This was because
the technique is invasive and there was a concern about a potential risk
of damaging the embryo, so tissue typing was only allowed on cells which
had already been taken from the embryo for genetic diagnosis.

 The HFEA has now carefully reviewed the medical, psychological and
emotional implications for children and their families as well as the
safety of the technique. There have been three further years during which
successful embryo biopsies have been carried out, both in the UK and
abroad and we're not aware of any evidence of increased risk.

Suzi Leather, HFEA Chair says:

"Faced with potential requests from parents who want to save a sick
child, the emotional focus is understandably on the child who is ill. Our
job is also to consider the welfare of the tissue matched child which
will be born. Our review of the evidence available does not indicate that
the embryo biopsy procedure disadvantages resulting babies compared to
other IVF babies. It also shows that the risks associated with sibling to
sibling stem cell donation are low and that this treatment can benefit
the whole family."

The HFEA requires that any application submitted to carry out this
procedure must be fully supported by the clinical team who are going to
treat the existing sick child and they will have to show that they have
considered every other treatment possible first before applying to the
HFEA and that every step has been taken to find an existing match using
world wide tissue banks and cord blood banks. The HFEA regards
preimplantation tissue typing as a last resort.


Notes to editors

Applications to carry out preimplantation tissue typing need to be made
to the HFEA on a case-by-case basis. Applications must be accompanied by
a statement from the consultant responsible for the care of the sibling
giving detailed explanation of why alternative treatments have not been
successful and the reasoning that led them to prefer the one for which
they are applying. This should be supplemented by independent evidence in
support of the decision (e.g. a second clinical opinion or the opinion of
an appropriate professional body).

Follow up

Age appropriate counselling should be offered to all family members.
Centres must report their detailed arrangements for conducting long-term
follow-up studies of patients and families undergoing treatment,
including long-term medical and psychosocial follow up of children born
as a result. Patients and their families should be strongly encouraged to
participate in follow-up studies.

The HFEA was set up in August 1991 as part of the Human Fertilisation and
Embryology Act 1990. The HFEA's principal tasks are to license and
monitor clinics that carry out in vitro fertilisation (IVF), donor
insemination (DI) and human embryo research. The HFEA also regulates the
storage of gametes (eggs and sperm) and embryos. 

                                  PART II
-------------------------------- GENET-news -------------------------------

TITLE:  Ruling on embyros clears the way for 'designer babies'
SOURCE: The Independent, UK, by Maxine Frith
DATE:   22 Jul 2004

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Ruling on embyros clears the way for 'designer babies'

The fertility watchdog gave the go-ahead yesterday for parents to create
"designer babies" who can act as genetically-matched donors for their
sick siblings.

In a controversial policy change, the Human Fertilisation and Embryology
Authority (HFEA) decided to relax the rules governing the screening of
embryos before they are implanted in the womb. Experts predict that
around 20 couples a year may now use the procedure to create "donor siblings".

But anti-abortion groups warned the policy change could lead to babies
being created as "spare parts" rather than as human beings in their own right.

Over the past three years, several applications to the HFEA have been
made by couples who want to use pre-genetic diagnosis (PGD) screening to
help them select embryos which will be a genetic match and donor for
existing children suffering from life-threatening diseases and whose only
hope is a stem cell transplant.

Only one couple has been allowed to use the procedure so far and
fertility experts have complained the existing guidelines are outdated
and unethical.

Announcing the policy change Suzi Leather, the HFEA chairwoman, said:
"Faced with potential requests from parents who want to save a sick
child, the emotional focus is understandably on the child who is ill. Our
job is to consider the welfare of the tissue-matched child which will be born.

"Our review of the evidence does not indicate that the procedure
disadvantages resulting babies compared to other IVF babies. It also
shows that the risks associated with sibling-to-sibling stem cell
donation are low and that this treatment can benefit the whole family."

One of the first people to benefit from the policy change will be two-
year-old Joshua Fletcher, who suffers from a life-threatening blood disorder.

Joshua was born with Diamond-Blackfan anaemia, a blood disorder affecting
just 100 children in Britain. He needs blood transfusions every three
weeks and will soon have to start enduring painful injections into his
stomach three times a week to prevent complications from his condition.

The only cure is a transfusion of stem cells - the building blocks of the
body - to stimulate Joshua's production of healthy red blood cells.
Neither Joshua's parents Joe and Julie, nor his five-year-old brother
Adam are close enough genetic matches, so the Fletchers want to create up
to 12 embryos through in vitro fertilisation.

Scientists will then screen the embryos to find ones that match Joshua's
tissue type and genetic matches will be implanted into Mrs Fletcher, in
the hope she will become pregnant. At birth, stem cells will be removed
from the baby's umbilical cord in a painless procedure, and then
transplanted into Joshua.

Mr and Mrs Fletcher, from Co Down, Northern Ireland, insist they have
always wanted another baby and are not creating a child as a commodity.
Mr Fletcher, 36, said: "We only want to give our son the best chance of a
cure for a condition which could take his life."

Fertility experts welcomed yesterday's ruling.

Simon Fischel, who heads the Care fertility unit at Park Hospital in
Nottingham, said: "I am extremely pleased as this is the right decision.
I think that the previous regulation was ethically untenable in our society."

Dr Fischel has been treating Raj and Shahana Hashmi, the couple from
Leeds who last year were the first in Britain to be given permission by
the HFEA to use PGD in an attempt to create a donor sibling for their
seriously-ill son Zain.

Mrs Hashmi has gone through several cycles of IVF and has become pregnant
twice, but miscarried on both occasions. On the advice of doctors, she
has stopped IVF treatment, but still has a few screened embryos left
which could be used if the couple wanted.

Two years ago, Jayson and Michelle Whitaker were refused permission by
the HFEA to use PGD to create a genetically-matched sibling for their son
Charlie, who also suffers from Diamond-Blackfan anaemia. They went to the
America for the treatment and last year Mrs Whitaker gave birth to a son,

Cells from Jamie have been transplanted into Charlie and doctors are
waiting to see whether the procedure has been successful.

But anti-abortion groups condemned the ruling and said donor-siblings
could be emotionally damaged by the knowledge that they were created to
cure their brother or sister.

A spokesman for Life, which campaigns against abortion, cloning and other
scientific procedures, said: "To attempt to create another child as a
transplant source is not morally acceptable.

"How would this child feel, for example, when he or she discovers that
they were brought into the world primarily as a "spare part" for their
elder brother? Human beings - particularly children - must never be used
as a means to an end."

                                  PART III
-------------------------------- GENET-news -------------------------------

TITLE:  Couple tell of delight at baby decision
SOURCE: IOL Breaking News, Ireland
DATE:   21 Jul 2004 

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Couple tell of delight at baby decision

A Northern Ireland couple were tonight celebrating the decision of the
British Human Fertilisation and Embryology Authority to broaden its rules
on "designer babies".

Joe and Julie Fletcher, whose two-year-old son Joshua could benefit from
the new policy, toasted the decision over a glass of champagne.

Mr Fletcher said the news had come as a great relief.

"It is great news. It's just exactly what we needed."

The Co Down fireman said the case of Joshua, who suffers from a rare
blood disorder, had forced the HFEA to review its policy.

"This is a change in the rules. It isn't a judgment on our case. What we
need is for them to say: 'Yes. You have passed the criteria and can now

"That will come hopefully within a few short weeks and we will start
along the road. Tonight's decision opens up the door for us."

He added: "It was our case that forced them into looking at it because
all the press and medical people were behind us and against the HFEA's
previous stance."

Mr Fletcher said the family would now be discussing their next move with
their doctor, top fertility expert Dr Mohammed Taranissi, who applied to
the HFEA for a test case licence application.

Joshua, who suffers from Diamond-Blackfan anaemia, needs a transplant of
stem cells from a genetically matched donor.

Neither Mr and Mrs Fletcher nor their five-year-old son Adam were close
enough matches to allow for a transplant to go ahead.

Tonight's decision should allow them to press ahead with the process of
screening embryos created during IVF treatment.

The plan is to create up to 12 embryos using in vitro fertilisation and
then use pre-implantation genetic diagnosis (PGD) to select those with
the right HLA genes - the genes that decide a person's tissue type.


European NGO Network on Genetic Engineering

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Kleine Wiese 6
D - 38116 Braunschweig

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