Embryos should not be screened for cancer genes, Jennifer Swift argues
Suppose you had seen your mother or sister sicken and die of breast cancer.
Suppose you also knew that her fate was due not to chance mutation, but to one
of the relatively rare cases of breast cancer - an estimated five to ten per
cent - arising from a defective gene, and that you had inherited this gene
yourself (as a consultation document from the Human Fertilisation and
Embryology Authority (HFEA) says). Wouldn't you be eager to take steps to do
what you could to prevent your children from being born with a genetic
predisposition to develop breast cancer?
Thanks to breakthroughs in genetics and reproductive technology, this now
appears to be possible. Scientists have identified the two genes linked to most
cases of inherited breast and ovarian cancer, BRCA1 and BRCA2. Thus a woman can
learn from a blood sample whether she carries a mutated copy of one of these
genes and is prone to develop cancer herself.
Fertility doctors have discovered how to remove one or two cells from a very
early human embryo and analyse its genes to see whether the embryo has
mutations. This technique, known as pre-implantation genetic diagnosis (PGD),
can be combined with in vitro fertilisation technology so that a couple who
know they are carriers of a genetic disease can avoid having children with the
disease.
The woman is given drugs to stimulate the release of ten to 12 human eggs at
once. These eggs are collected and fertilised with the man's sperm, then the
resulting embryos are studied to see which ones carry the genes for the
disease. Only the embryos that are free of the disease are placed in the woman'
s womb to develop and be born.
In the UK, any new use of PGD technology must first be authorised by the
HFEA. So far, it has permitted couples to use PGD only to avoid having children
suffering from diseases such as cystic fibrosis or haemophilia. These are
early-onset diseases, handicapping the child from birth, and highly penetrant,
meaning that a child carrying the trait is virtually certain to develop the
disease. Therapies for treating them are currently very limited.
But the HFEA expects that very soon couples from families in which there is
an inherited susceptibility to cancer (genes are known for familial forms of
bowel and thyroid cancer, as well as breast cancer) will ask the authority to
license the use of PGD to screen out embryos carrying predispositions to these
cancers. So the HFEA is now carrying out a consultation, "Choices and
Boundaries", which seeks the public's views on the issue.
Many in Britain, including some in the Churches, will welcome this
possibility. Surely the only possible objection to it is the belief that human
embryos have full moral personhood from conception, and must be given the
opportunity to develop regardless of their genes. I acknowledge that the moral
status of the human embryo is a very serious issue, but there are other grounds
for objecting to this widening of embryo screening.
First, as the HFEA notes, unlike the conditions for which PGD is already
authorised, only a proportion of those who inherit familial cancer genes
actually develop cancer, and they will do so as adults. The risk can be high -
it is estimated that a woman with the BRCA1 gene has an 80 per cent chance of
developing breast cancer.
But it must be also borne in mind that survival rates from breast cancer
have been steadily growing, and, if it is caught in the early stages, they are
now approaching 90 per cent. Also, the close monitoring that BRCA carriers
receive should increase the likelihood of detecting tumours before they have
spread to other parts of the body (as Cancer Research UK says).
Recent studies suggest that breast cancer arising from a mutation in a BRCA
gene is no more likely to kill a woman than a breast cancer arising by chance
(according to M. Al Tamer in Annals of Surgical Oncology). Some women who are
uncomfortable with watchful waiting have even opted for surgical removal of
their breasts, which almost eliminates the risk of developing breast cancer.
Bilateral mastectomy is an operation that no woman would welcome, but is
that such a tragedy that it would be better never to have been born? Also, IVF
itself is not risk-free, even if the media generally fail to report this.
Multiple pregnancies, with their concomitant risks of handicap or stillbirth,
are much more common when in vitro fertilisation is used, and even singleton
IVF babies are more likely to have a low birth weight and even to die soon
after birth (Michael Le Page, New Scientist, 25 June 2005).
The IVF process is psychologically stressful for both parents, and the drugs
used pose both short- and long-term health risks, possibly also including a
greater chance of the woman's developing breast or ovarian cancer (according to
Judy Norsigien at
www.gene-watch.org).
If the HFEA licenses PGD so that parents can screen out embryos carrying
traits that are as treatable as breast cancer, the authority might find it hard
to draw the line and stop anxious parents from using the technique to prevent
the birth of children affected by virtually any condition with a genetic link,
whether it is adult-onset diabetes, schizophrenia, or even shyness.
Such parents would have to be well off in order to afford the expense of PGD
plus IVF, but there is still a serious risk that the same sort of people who
can afford to send their children to expensive schools will have their embryos
routinely screened for "defects", and that this will increase the pressure on
parents of all social classes to get as close as they can to having "perfect"
children, too. We can see this process already under way in abortion, which is
permitted right up to birth on the grounds of "serious handicap", a term left
to the parents and two doctors to define.
A eugenic utopia is not more desirable because it arises from social
pressures instead of state coercion.
Jennifer Swift is a writer on bioethics and co-convener of the Oxford
University Genetics Forum.
The HFEA consultation is at
www.hfea.gov.uk/consultations
. The deadline for responses is 16 January.