APPENDIX 43
Memorandum from Mr Paul Rainsbury, Professor
Gedis Grudzinskas and Professor Alan Handyside
The arrival and employment of Pre-implantation
Genetic Diagnosis (PGD) as a viable clinical application with
wide-ranging potential in the treatment of infertility raises
many questions.
At the heart of the matter lies a question which
predates the Luddites.
"How can you deny society the benefits
of scientific advance?"
Two leading fertility experts at the Bridge
Centre, Professor Gedis Grudzinskas, Medical Director and Professor
Alan Handyside, Scientific Director, and Mr. Paul Rainsbury, whose
Rainsbury Clinic is supported by Bridge, have joined together
to issue the following statement:
"The introduction of PGD as a clinical
procedure is a challenge to us all. It seems to go to the very
heart of who we are, what we are and what we might be in the future.
The danger that we face is that lack of knowledge
about PGD can lead to a misunderstanding of what it is and what
it has to offer.
PGD is an instrument of choice not of change.
It is a series of techniques which allows us to apply emerging
genetic knowledge to the selection of human embryos with possible
deficiencies at a very early stage of their development.
PGD does not allow us to change the nature of
these embryos. Instead, it enables us to screen for evidence of
hereditary diseases and to identify harmful genetic abnormalities.
PGD also enables selection of higher quality embryos for IVF treatment
and can be used to determine the gender of these embryos with
high degree of accuracy.
These new choices present challenges but fewer
dangers than opponents would have us believe.
From a medical standpoint, the purpose of research
is to enable us to alleviate pain, distress and suffering in more
effective ways also, wherever possible, to apply crucial techniques
of preventative medicine in the infertility treatment of patients.
PGD has an important role to play which must
not be misunderstood or misinterpreted.
The case of the Kashmi family is not about "designer
babies". Instead it opens the way for crucial new therapeutic
benefits which may save Zian Kashmi's life and many others in
the future. There is no "design" involved but simply
a choice from what Nature has provided.
Parents who know they stand at risk of passing
on hereditary diseases represent another major category of beneficiary.
Hereditary diseases cause untold pain and suffering
and there are many which can be identified and potentially eliminated
from future generations. These include muscular distrophy, haemophilia,
Down syndrome, cystic fibrosis and Hunters disease. Many more
will be added in time.
Gender Selection is another area in which the
responsible exercise of choice can eliminate much, unnecessary
pain and suffering. The term Gender Selection is somewhat unfortunate—we
prefer Parental Choice or Family Balancing.
The case in favour of allowing Parental Choice
has two aspects—the first is family-balancing where a family
with two, three or more children of the same sex could elect for
IVF treatment using PGD-screened embryos of the opposite sex.
The second aspect already has a "cause
Celebre" in the Masterton family. This tragic story of a
Scottish family with four boys which then lost a fifth female
child in a domestic accident is well-known.
The Mastertons are appealing to the European
Court of Human Rights for the right to undergo IVF treatment to
ensure that a daughter is the certain outcome of any further pregnancy.
Who could deny that such permission would go a long way towards
alleviating the terrible distress they have endured?
Parental Choice offers further opportunities
through donor programmes. The balance of the sexes would be maintained
through the donation of all viable unused embryos (via embryo
adoption) to the hundreds of patients currently waiting for donor
eggs for whom the gender of the child they desire is not of importance.
Much good can be achieved and it is difficult to find harm.
The Bridge Centre has received strong support
for the use of PGD in specific areas in which the exercise of
choice of embryo can alleviate or prevent unnecessary suffering.
A questionnaire circulated to thousands of past
patients, donors and other contacts and also published on the
Bridge website reveals an extraordinary strength of feeling.
Over 80% of all respondents believe that Parental
Choice and Family Balancing should be exercisable in therapeutic
situations, in families of three or more children of the same
sex and in cases such as the Mastertons.
In the final analysis, we may only be dealing
now with what is inevitable in the future. All this will surely
happen in time and more than 500 babies have already been born
worldwide following PGD. The only questions to be answered are
in which countries the techniques will be applied and how effective
the ethical framework will be as a result.
The United Kingdom, with its multi-ethnic population
is ideally placed to resolve cultural, religious and ethnic issues
and set the fair and responsible standards for others to follow.
We should be mindful of, and reassured by, the
outrage which greeted the birth of the first "test-tube baby"
twenty five years ago. One million children have been born via
IVF and what has emerged since, is responsible and well-managed
clinical practice which has successfully addressed and solved
the terrible problem of infertility for thousands of families.
No doubt, we must distinguish clearly between
Science and Medicine. Scientists are committed to pushing back
boundaries, almost irrespective of the consequences. Medical practitioners
however, work under the humanitarian and ethical standards which,
when it comes to the infertility treatment, they place the health
and welfare of the unborn child as' the absolute priority. The
future use of PGD is firmly in the hands of the medical profession
with proper assistance by the scientific world.
PGD enables us to look forward to a world in
which the incidence of hereditary diseases is reduced, in which
the horrors of post-natal gender selection are eliminated and
in which the number of "happy families" are increased.
People who undergo fertility treatment make
many physical and financial sacrifices with very little certainty
of success. PGD enables them to make choices which have no conceivable
impact on others—no changes are being made, no advantages
are being created and many problems are solved.
Public opinion must shape our approach and,
when people truly understand that PGD points us towards a better
world, we believe the response will be overwhelmingly in favour
of responsible safe and ethical exercise of freedom of choice.
June 2004
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