In the words of its Executive Summary,
the White Paper details Government proposals to:strengthen specialist genetics services, build genetics into mainstream
services, spread genetics knowledge across the NHS, generate new knowledge and
applications and ensure public confidence (p.5).
We welcome the White Paper’s concern
with the management, by genuinely health-promoting means (including gene therapy[2]),
of medical conditions.Having
said this,there is much in the
White Paper we believe should be reconsidered, beginning with what we regard as
an excessively sanguine view of the usefulness of genetic knowledge for
healthcare purposes now and in the short-term future.To date, there has been relatively little achieved in genuinely
therapeutic uses of genetic knowledge, as opposed to discriminatory uses of such
knowledge -including those
unfortunately endorsed by the White Paper itself.
Our concerns relate to:
Prenatal selection:the lethally discriminatory attitude endorsed by the Paper with regard to
genetic testing in utero, and after IVF.
Genetic counselling:in the current social environment, proposing the option of prenatal tests
and abortion will be a large part of the counselling provided.Another large part will be proposing the option of contraception or
sterilisation.Subtle
pressures on couples to avoid having children who may be disabled are likely to
emerge from the counselling process, particularly in view of the financial
implications of the birth of disabled children for the State.
Screening of newborn babies:we are concerned by the suggestion that new-born babies might be screened
to provide ‘a comprehensive map of their key genetic markers, or even their
entire genome’(3.36).Such tests would reveal a range of medical conditions, with no
requirement that these conditions be early-onset and/or treatable in childhood.The assumption hitherto has been that individuals should be left to
choose, or decline, tests for late-onset disorders themselves when they are old
enough to do so.
Communicating genetic knowledge to the public:the media mentioned by the Paper for communicating such
knowledge(genetics knowledge
parks, the BBC and the Progress Educational Trust) will tend to convey a largely
uncritical view of developments in genetics.There are ideological and/or commercial interests involved which militate
against a serious questioning of the biomedical establishment.
Prioritisation of genetic research,
testing and treatment at the expense of other areas of research and healthcare.(For example, the BioBank project, a study looking at the influence of
genes on a large segment of the population,has been criticised by some scientists as disproportionately well-funded
in relation to its scientific merit.)
1. Prenatal selection
Screening in utero
Claims made in the Paper about the
possible benefits that might accrue from greater genetic knowledge must be seen
in the light of how such knowledge is currently used.Chapter 3 outlines the Government’s proposal to
‘incorporate genetic advances into everyday clinical practice’. One of the
proposals outlined in this section is to ‘ensure that by 2004/5, all pregnant
women are offered antenatal screening for Down’s syndrome and then counselled
by midwives to make an informed choice’ (3.29).This proposal comes immediately after paragraph 3.28, which highlights
the anxiety which can be caused by screening and the risk of false negative and
false positive results.
The purpose of prenatal screening
programmes is, as the name suggests, to ‘screen out’ (i.e. abort) babies who
do not fit into parental projects, due to their disability.This procedure fatally discriminates against those who have a
chromosomal/genetic disorder.In so
doing it ignores the fundamental equality of human beings based on their common
human nature, despite inequalities in age or in mental or physical performance.Given that this fundamental equality is the basis for a genuine,
non-arbitrary justice,prenatal
selection goes directly against the ethos needed for the practice of healthcare.
The increased use of screening has
already led to a large increase in the abortion rate for Down’s syndrome
babies.There is
evidence that abortion, as well as destroying an innocent human life, can cause
serious psychological problems for the mother, and that women having abortions
for foetal disability are particularly at risk.[3]
The proposal to expand prenatal testing
for Down’s will create serious problems of conscience for health professionals
who oppose this harmful, non-therapeutic practice.Only recently a doctor was found guilty of negligence for refusing
to refer a patient for an amniocentesis:a test closely linked to abortion, which itself carries a risk of 0.5 -1%
of causing miscarriage.
Preimplantation genetic diagnosis
Chapter 6 of the document observes that:
‘A technique known as pre-implantation genetic diagnosis (PGD) allows embryos
to be created through in vitro fertilisation (IVF) to be tested for a specific
genetic condition before being placed in a woman’s womb. In this way, couples
at risk of having a child with a serious inherited disorder can help ensure that
their baby is free of the condition.’ (6.9) This statement is somewhat evasive
in describing PGD.There is
no therapy being employed here, but rather the destruction of embryos deemed
unfit for birth.IVF is
a process that, by its very nature, reduces human embryos to products of
manufacture, and seriously damages the relationship between the parents and
their offspring.PGD is
an additional way of applying ‘quality control’ to early human beings, and
destroying those who are not thought worthy of continued life.
A
number of inaccurate claims are made in this section with regard to the
‘proportionate regulatory framework around genetics and health’;thus we read that ‘the HFEA was the first body of its kind in the world
and it now provides an invaluable safeguard in this area by ensuring that
genetic advances in reproduction are used only for serious medical purposes and
only in a responsible and appropriate way’ (6.10).In fact, the HFEA is highly permissive in its outlook, and is willing
(for example) to licence not only PGD for detecting medical conditions but PGD
to select embryos who can be tissue donors for a sibling.Nor is it the case that the Government shares the public’s repugnance
at ‘cloning people’ (6.10):human cloning for research purposes is, on the contrary,permitted by the Government, which has confined itself to prohibiting the
implantation of clones in the body of a woman.To find such statements in a chapter entitled ‘Ensuring Public
Confidence’ does not reassure us that the public will, in fact, be
well-informed by the Government or Government-sponsored bodies.
2. Genetic counselling
Proposals to increase the use of genetic
counsellors (Chapter 2) should, in the current social climate,be viewed with extreme caution.In
a more life-affirming society, genetic counsellors would act as advocates for
the unborn child, no less than for the parents–exactly as they would support the rights of new-born children
against the infringements of parents, regardless of how well-intentioned the
parents might be.In the present
climate, and given governmental proposals to expand prenatal screening
programmes, there is no reason to believe that counsellors will take on this
advocacy role.A genuinely
life- and health-affirming genetic counselling programme would also have in
place schemes whereby children and adults affected by genetic conditions could
meet with those being counselled and relate to them the lived experience of
their own genetic condition.Such
a scheme would reduce the anonymity of those with genetic disabilities, and help
to break down barriers of ignorance and prejudice against them. [4]
In the context of genetic counselling
very little is made of the possibility that carrier couples could be subjected
to pressure not to have children.In
a society where destructive genetic screening is widely practised, and indeed
proposed by genetic counsellors, it is likely that carriers who choose to go
ahead and have children will be thought irresponsible given the other
‘choices’ on offer, and given their child’s possible suffering and/or the
burden posed to society by his or her care.The very existence of screening programmes, and the very possibility that
genetic counsellors would regard destructive selection as an option,creates an atmosphere discouraging to carrier couples who may decide to
have children.No mention is made in the Paper of the danger
that counsellors may, inadvertently or otherwise, support the view that couples
should not have children unless those children require the least care possible
(i.e. are judged ‘perfect’ in terms of being minimally burdensome).We are also concerned that the main options proposed to
carrier couples other than abortion will be contraception and sterilisation,
rather than equally effective and (we would argue) morally preferable options
such as natural family planning and use of genetic information in selecting a
marriage partner.
3. Genetic screening at birth
Chapter 3 of the White Paper suggests
asking the Human Genetics Commission to work with the National Screening
Committee to consider the case for screening babies at birth and storing
information about their genetic profile for future use. The idea appears to be
that future healthcare might be tailored according to an individual’s genetic
makeup and specific needs.
This proposal raises a number of serious
questions.It does not appear
that the screening envisaged is in the child’s immediate health interest.Obviously, only substitute consent can be obtained for newborn babies.In cases of substitute consent it is important that the decision be made
in view of the good of the individual tested, and not for some greater or
societal good separate from the good of that individual.The White Paper reiterates throughout that such testing will be for the
benefit of the individual tested,and
couples this assertion with optimistic predictions of medical treatments being
‘tailored’ to genetic makeup. There has been very little progress in this
area, and certainly not enough to support the genetic profiling of all babies
born.Concerns regarding
privacy, insurance, etc., acknowledged elsewhere in the White Paper, surely
outweigh the merely possible and remote benefits that genetic testing may bestow
on babies.Only in a case of real
need should a baby be tested – i.e. when it is in his or her immediate health
interest, or at least, when the condition tested for will manifest itself before
the child is old enough to consent to the test. [5]It
is not enough that parents, scientists or medical professionals wish to obtain
genetic information which is not immediately required.
4.Non-consensual testing
While we welcome the proposal to make it
a criminal offence to test an individual’s DNA without that person’s
knowledge or consent (6.36), this is difficult to square with the proposal to
screen newborn babies where there is no immediate medical need (see paragraph 4
above).We also have
concerns about exceptions to this criminal offence in the use of DNA tests by
the police.While we do, of
course, accept that DNA testing is sometimes necessary for police purposes, we
are less confident that police access to genetic information collected for other
purposes (e.g. for the Biobank study) should be authorised (5.40).[6]
5. Communicating genetic knowledge and
funding priorities
Chapters 2 and 3 contain a number of
funding commitments from the Government, beginning with an ‘unprecedented
level of investment’ (2.26) in genetic testing services.Large sums of money are to be invested in
various schemes including employing genetic counsellors, the upgrade of NHS
genetics laboratory facilities and research projects in the area of
genetics-based health services.
5.34 notes that the Department of
Health,the Wellcome Trust and the
Medical Research Council are to provide an initial £61m to support the
development of the UK Biobank project which aims to ‘obtain comprehensive data
on the combined effects of genotype, life style and environmental exposure to
assess the risk of developing the common multi-factorial diseases of later
life’ .It should be noted
that the design of the Biobank project has been criticised by some scientists,
who have also raised concerns over funding priorities.It is questionable whether this investment can be justified in the face
of other areas of research and healthcare which are also in need of funding and
which promise more tangible results.
Chapter 5 pledges an investment of
around £15m to support the development of six genetics knowledge parks over
five years, which will‘carry out
research into…the implications of genetics for NHS services and broader
ethical, social and legal issues’ (5.11).We question whether ethical and social concerns will be properly
addressed by knowledge parks working in close partnership with the private
sector.Already
biotechnology firms have been successful in lobbying for procedures such as
embryonic stem cell research and cloning, and we would see the involvement of
such firms in investigating complex ethical issues in genetics as a worrying
development.The White Paper
makes no mention, in this context, of possible conflicts of interest.That the parks are entrusted to help the NHS to‘exploit the findings of genetic research and to improve public
understanding of genetic science’ (5.11) suggests to us that the biotechnology
industry will play a disproportionate and far from impartial role in
communicating knowledge of genetics and ethical aspects of its use.
The concerns that we have in this area
are compounded by the fact that, as the White Paper reveals (6.20), the
Government part funds organisations such as the Progress Educational Trust, a
group closely tied to the biotechnology industry, which has been critical of
government policy only insofar as it has held back industry in certain areas.It is scandalous that such a group is given funding and responsibility by
the Government when it effectively acts as a public relations firm for private
industry.That public money (£200,000 over the next three years)
is to be given to the Progress Educational Trust makes clear that little thought
has been given to assessing whether such groups are suitable providers of
genetic information to the public.
Also to be criticised is the claim that
‘The BBC (in collaboration with the Wellcome Trust and others) have made human
genetics the subject of responsible accessible television and radio
programmes’ (6.16).The
BBC’s coverage of reproduction and genetics is, we would argue, consistently
biased, as can be gleaned from a brief survey of BBC NewsOnline.The BBC has regularly broadcast programmes presented
and written by Lord Winston, who is himself involved in, and a strong advocate
for, such activities as embryo experimentation.We do not believe that, from an ethical point of view, especially given
obvious conflicts of interest, such programmes should be described as
‘responsible’.
Chapter 2 contains a number of funding
proposals aimed at strengthening specialist genetic services within the NHS.At 2.14 the prediction is made that ‘Genetic testing will expand
rapidly in the short and medium term’, and that ‘this increase will be
fuelled in patients by growing consumer demand.As people become more aware of the part played by genes in ill health,
they will naturally ask their GP’s for genetic tests’.We would suggest that a more cautious tone would be apposite, not least
because of the social and ethical concerns that need to be addressed in this
area.Simply to take it as
given that genetic testing will rapidly expand, and use that prediction to
justify a vast increase in funding in this area, at the expense of other needy
areas of healthcare, is too hasty.Consumer
demand for genetic tests will be greatly influenced by the way in which
developments in genetic knowledge are presented.Further, the assumption that there will necessarily be a ‘natural’
increase in consumer demand needs to be examined.
Our concern here is not so much that
people will want genetic tests, which they may want for good reasons, but rather
that the Paper is making optimistic assumptions to justify significant
investment in an area where much is unknown.A large increase in genetic testing will have a number of foreseen
undesirable side-effects which need to be adequately addressed.These include results being misunderstood by patients, the danger that
the seriousness of some conditions will be exaggerated, and what may follow in
terms of psychological disturbance, social stigmatisation, insurance problems
and pressure not to have children.The
interaction between genes and environment is an extremely complex area and we
would stress that any genetic test must be able to supply useful and accurate
information.The
attainability of any testing programme’s aim should be pre-tested via pilot
projects.
December 2003
Notes
[1] This Response was prepared by Dr Helen Watt, the Director of the
Centre, and Anthony McCarthy, the Centre’s Research Fellow.
[2] On the ethical issues raised by gene therapy, see H. Watt, Gene
Therapy and Human Genetic Engineering (London:Linacre Centre and CTS, 2003).
[3]
See e.g. G. Zolese and C.V.R. Blacker
(1992) ‘The psychological complications of therapeutic abortion’,
British Journal of Psychiatry, 160: 742-9;
E. Ring-Cassidy and I. Gentles, Women’s Health after Abortion
(Toronto: De Veber Institute
for Bioethics and Social Research, 2002).
[4]
It may also be useful for couples to
meet families of those affected by genetic conditions;
however, they should above all have the opportunity to meet affected
individuals.
[5] We would exempt from this the case of paternity testing where
requested in particular cases, since it is in a child's interest that
his/her father be identified early, both for financial reasons and for
social reasons connected with the father's sense of responsibility, and
the child's sense of identity.
[6] On the retention, use and disposal of human tissue in general, see
the Linacre Centre’s Response to the Department of Health consultation
Human Bodies, Human Choices (available on the Centre’s website at www.linacre.org).
