In trying to simplify complicated questions to provide neat ‘arguments’,
bioethicists tend to translate them into impersonal terms. They often distance
biomedicine from its social context by ignoring many of its short-term and
long-term implications. For example, the issue of abortion of defective
fetuses becomes a debate about fetal versus maternal rights, and ignores
questions about how society could improve the lot of mothers, babies and
disabled people and thereby extend the range of choices.

ÐÓ°ÉÔ­´´s and bioethicists like to offer reassurance that biomedical
developments ‘raise no new ethical problems’. They do this by reducing moral
dilemmas to their bare essentials, the eternal questions that have been
discussed since Plato’s time, such as ‘what is good?’. They also imply soothingly
that most of the old questions have been resolved.

Things look less clear when you examine the actual developments, such
as the autoimmune-deficient patented mouse with its implanted human fetal
organs (the so-called ‘Harvard onco-mouse’). These mice ‘allow’ scientists
to do research on living human tissue without it being human enough to worry
the bioethicists. Plato is not reported to have been worried by selective
abortion (infanticide was then accepted) or patents on transgenic animals.

Faced with evidence of the complex impact of biomedicine on late 20th-century
life, some bioethicists seem to prefer to celebrate scientific advances.
Typical examples include the mapping of the human genome and fetal surgery.
They label those who question whether we are advancing in the best direction
as Luddites, extremists or pressure groups, thereby deflecting attention
from their own alliance with the most successful pressure groups, such as
doctors and medical scientists.

The alliance appears when ethicists meet scientists to agree what moral
consensus is nationally acceptable under such headings as ‘The effects of
the human genome project on man’. (Its effects on mice have little relevance
in bioethics.) The phrase is a fine combination of old-fashioned sexism
and convenient biology-speak which, by reducing human individuals to a biological
organism, ‘man’, sweeps away social complexities and confines debate to
the simplicities of what we often call ‘nature’.

In a society where Salman Rushdie remains in hiding, where Northern
Irish leaders such as Ian Paisley and Cahal Daly can agree on little other
than their opposition to abortion, and where racism is rife, what does consensus
mean? It has become a way of glossing over irresolvable conflict between
groups with some interests in common, such as taxpayers (who want to save
money), scientists (who want to spend it on exciting projects) and people
with disabilities (who hope public funds will improve the quality of their
life).

A recent European Community survey challenges the assumption that an
informed public will uncritically support biomedicine. It found, as reported
in New ÐÓ°ÉÔ­´´ (This Week, 13 July 1991), that people who were more knowledgeable
about science were more critical and anxious about them. The British public
appeared to know little and care less.

Moral debates among scientists are oddly unrigorous. They rarely explore
why people, including scientists and bioethicists, hold certain views, such
as criticism or support for the theory of brainstem death, which permits
the removal of the heart from ‘donor’ bodies that still function.

Many examples suggest that people’s attitudes towards science are deeply
rooted. For example, there have been hardly any heart transplants in Japan.
This is due in part to ancient Japanese beliefs about how they should relate
to the living and the dead. Whereas Westerners link the brain with personal
identity, the Japanese tend to see the heart as the centre of the person.
This example indicates that propaganda to promote transplants has little
effect if it does not address the rationale on which public opinions are
based. ists like to present their research as a largely unpredictable
activity rather than as part of a well-planned programme driven by commercial
imperatives. They can then portray ethical dilemmas as surprising, inconvenient,
almost accidental side effects of the great enterprise of discovering ‘truth’.
Ethics becomes an afterthought, confined to deciding how best to apply scientists’
hard-won ‘value free’ knowledge, rather than determining what research is
to be pursued – and how.

The deficiencies in such retrospective bioethics are illustrated in
the idea of a moratorium on research in Antarctica during which scientists
and politicians evaluate the pros and cons of exploiting the continent.
Professional bioethicists would begin near the end of the debate, when research
programmes have, perhaps accidentally, brought penguin populations near
to extinction, and the question is whether to open a penguin preservation
programme at London Zoo. Reactive bioethicists reveal their unexamined alliance
with the scientists, who are left free to define society’s needs, to make
all the decisions during the research process, and to set the bioethics
agenda, leaving ethicists to attempt to tidy up the consequences.

The idea of an Antarctic moratorium could also be be cited as an example
of the potential dangers of restricting research and exploration when, say,
vital mineral resources are in short supply. But it would be a mistake to
characterise concern about science as merely ‘green’ or ‘Luddite’. Public
disquiet often expresses many positive values that bioethicists need to
take seriously. Accepting the links between science and society would be
a good start.

Priscilla Alderson and Naomi Pfeffer research and write on medicine,
health and social policy.

The voluntary Interim Licensing Authority (ILA) developed a consent
form for IVF which it called an ‘agreement’, putting consent to infertility
treatment on a par with hire purchase. The new Human Fertilisation and Embryology
Authority (HFEA), set up by this year by an act of parliament, judged this
agreement to be a good one for the purpose of consultation and included
it in its draft code of practice.

However the ILA’s agreement mixes together 19 different clauses: nine
relate to medical procedures; six to the fate of their embryos; three spell
out the low success rates of the procedure; and one gives doctors the right
to decide with consultation how many embryos to transfer into the women.

Early this year, Consumers for Ethics in Research (CERES), a new forum
for consumers to exchange and develop their views on medical research, wrote
to 45 British clinics that offer IVF. Clinics were asked to send a copy
of the consent form they used, how, when and by whom consent was obtained,
and what other information on IVF they provided to patients. Forty clinics
replied to the request.

Nineteen clinics said that none of their patients had any difficulty
with the ILA’s agreement. Only three said that some did. Yet the Plain English
Campaign believes that very few people could understand it. It describes
the agreement as a mess and criticises the extensive use of technical jargon.

People attending IVF clinics go to great lengths to make themselves
seem ‘respectable’ in case they are rejected for treatment on ‘social’ grounds.
So people would be reluctant to admit that they could not understand the
agreement. Such fears are justified; the HFEA emphasises the importance
of selecting only suitable people for IVF. And how is consent obtained from
people for whom English is not their first language?

The agreement asks women to give blanket consent, that is, it doesn’t
spell out what treatment involves. Yet it is complex and potentially hazardous.
Most women are treated with gonadotrophins, powerful but unpredictable drugs
that lead them to produce several eggs. Three per cent of women who take
them will suffer from the pot-entially lethal condition of ovarian hyperstimulation;
there is also a suspicion that the drugs may increase the chances of ovarian
cancer. To harvest the eggs, women may undergo surgery, with all the risks
that are attendant on anaesthesia.

About one in eight women who undergo IVF will conceive. Yet conception
itself does not guarantee a happy outcome. Infertile women are at risk of
ectopic pregnancy and miscarriage not only because of higher rates of multiple
pregnancies conceived as a result of IVF, and the problems attached to carrying
twins, triplets, quads or more, but also because infertility and its treatment
seem to make pregnancy unstable. Only nine out of every hundred women who
undergo IVF will give birth to a live baby. And because they are more likely
to be born prematurely, babies conceived through IVF may have long-term
health problems.

Women are not told that they can opt out of treatment whenever they
want to, perhaps because this may mean a financial loss to clinics. Yet
patients have the right to withdraw at any time, and according to current
good practice, they should be so informed.

Both the ILA’s and HFEA’s agreements require clinics to give patients
written information. Most clinics produce glossy packs with pictures of
premises, grounds and medical facilities, and portraits of the medical team.
One gives out a photocopied romance called Mother Hen. With no guidelines
on what the information is for, it is not surprising that there is no consensus.

Some clinics use information to promote their facilities; others as
a way of maximising compliance to the complex treatment programme; for others,
giving information means counselling; and for others, a way of ensuring
that consent is informed. Most of the phone calls to the Fertility Helpline
set up by the National Association of the Childless are from people who
have been unable to get specific information about medical procedures from
their doctor.

Women are asked to decide on the fate – storage, destruction, donation
or for research – of their ‘spare’ embryos at the same time as agreeing
to undergo treatment. In 32 clinics, a doctor asks patients to sign the
consent form. Yet doctors’ and patients’ interests do not always coincide;
a doctor may want a woman’s ‘spare’ embryos for research or for another
patient, whereas a woman may be undecided about their future.

Some clinics give women almost no time to consider their decision. Five
ask patients to sign the agreement at the initial consultation; three at
the second. Only five said that they give the form to patients to take home
to read before signing it. Thirteen ask for a signature just before treatment
commences; two do so at egg collection, which means that women do not give
written consent to the fertility drugs. One said, ‘when they feel ready
to’; and another, ‘if doctor satisfied patients understand implications
after consultation’.

The ILA used its agreement to reassure critics of IVF that only ‘suitable’
people – meaning infertile couples – are treated. It did this by addressing
both a woman and a man and making them state that they are ‘unlikely to
have a child by any other means’. In doing this, it asked a man to sign
consent to medical procedures which will be carried out on a woman’s body.
Perhaps the ILA was defensive because it was anxious about its legitimacy;
the loss of society’s general approval is more to be feared by an organisation
set up by doctors and scientists than damage to individual women and children.
CERES hopes that the legal status of the HFEA will enable it to be more
concerned with and responsive to patients’ needs.

Naomi Pfeffer writes on medical matters.

CERES can be contacted at PO Bix 1365, London N16 SDO.