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Ante Natal diagnosis |
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Ante-natal
diagnosis: legal and ethical aspects
By Professor Theresa Marteau, John Gillott and Jonathan Montgomery
Introduction
What follows is a transcript of papers given at a seminar
held at Kent University Law School in the Autumn Term 1997.
The seminar was organised by Ellie Lee, a student at Kent
University and Co-Ordinator of Pro-Choice Forum, to give staff
and students the opportunity to discuss issues surrounding
fertility, ethics and the law.
Jonathan Montgomery
What I want to do is reflect first on issues that create problems
with the concepts of consent and confidentiality. These are
concepts that are used widely as key concepts in the regulation
of medical ethics, and I want to raise some questions that
come up in relation to ante-natal diagnosis, that make me
wonder whether these are more complex concepts that some lawyers
like to argue. Secondly I want to raise some issues about
the NHS in relation to ante-natal diagnosis and the provision
of services. These questions seem to me to be pressing and
interesting in this area. I want to end up discussing what
this area can tell us about the proper role of law and what
sort of things we should expect the law to be able to deal
with and where the limitations might be.
Dealing first then with the concept of consent, one of the
things that it seems to me to be difficult for the law to
grapple with in this area is problems about ranges of the
understanding people have about what is going on. I am married
to a midwife and one of the things midwives come into contact
with routinely is ultrasound scans. When my wife was pregnant
and we went for an ultrasound scan, our view was 'we hope
this doesn't turn up anything unusual'. Our understanding
of it, because of my wife's professional background was that
the purpose of the ultrasound was to find out if something
was wrong and detect anomalies. In my household it was therefore
about going for a scan for anomaly. Our friends who are having
babies saw going for an ultrasound as the first chance to
get the first glimpse of the baby, and found it very exciting.
The idea that something might come up which was very negative
really was not part of their contemplation when they were
going for that procedure.
This raises an important question to reflect on about getting
consent. It is easy to talk generally about the need to enable
women who are pregnant to have a choice about what goes on,
and to gain informed consent. Whether it is because women
do not hear what professionals think they are saying (and
I am being quite careful there, because what professionals
actually say may be different from what we think they have
said); or whether professionals are not coming clean about
why they are involved in ante-natal diagnosis; or whether
professional think it is a nice chance to see the baby too,
issues are raised here about informed consent.
Should you make it clear when you offer some sort of screening
procedure, not only what is going to happen, that is the physical
intervention (we are going to have a look at the baby, to
see what it looks like; we are going to do a test to see if
there is protein in the blood), but also explain why it is
being done? If this is the case, should it be explained in
general terms like: 'We are looking to see if the baby is
allright'? Or should it be done in such a way that we look
for problems where people are concerned that things are not
going smoothly? This would mean that the only consent would
be where women understand all the things that might be going
wrong, and agree to have a test in order to find out whether
their baby is suffering from a genetic defect, if there is
retardation, or if the baby is missing a vital organ. Should
we go through a whole catalogue of possible problems, before
we say that there is informed consent?
That seems to me to raise legal issues prefigured in discussion
of HIV testing. A line has been taken by some lawyers, most
notably Ian Kennedy and Andrew Grubb. They say that you are
not giving valid consent to be tested for HIV unless you are
clear that what you are having is an HIV test and you have
had counselling about the implications, and what the consequences
might be if the test proves to be positive. Their argument
is that English law requires us to consent to the nature of
the procedure being done, and part of the nature of an HIV
test is the consequences of the results. It is not just about
giving blood, it is about knowing why you are doing it.
If we think that is right, it raises for me some disturbing
questions about how to go about checking the right sort of
information has been given to women about quite a wide range
of tests that are happening during pregnancy and shortly after
birth. How do we define what the appropriate level of informed
consent is? If we define it in terms of the information being
pushed upon women, can that undermine their right to not know
about things that might happen during pregnancy and leave
things to chance? Should we do what I think most professionals
do, at least during ultrasound, and that is give women the
opportunity to ask, but not actually regarding that as a necessary
condition of valid consent? That leads to all sorts of important
questions for lawyers about how to balance the obligations
of professionals against the rights of women. I happen to
think we have not done too badly with the law in that respect,
by recognising that there are two sets of questions that need
to be asked. There is a set of questions about the minimum
standards for valid consent, which lawyers deal with as whether
the consent is real or not.
Here we should not expect all the ramifications of tests to
be rammed down women's throats. We should expect that women
are clear about what is going to happen to them physically,
and that they have the opportunity to ask questions about
things that concern them. We should separate that from the
question of what appropriate professional care is in opening
up possibilities for asking those questions, and indeed in
some contexts making it clear to people that the purpose of
the particular test is 'x' or 'y'. I think that is particularly
important where the uses to which certain information may
be put are very limited. This is the case where really the
only thing you are likely to do with a piece of information
is consider a termination of pregnancy.
I think if this is the case, if the only question is: 'Would
the person terminate the pregnancy if this diagnosis was made?'
Is it right to create a legal framework which confronts women
with that decision when they would be very clear about what
they will do, and therefore there is no need to raise the
stakes and levels of anxiety? Or is it that the better mechanism
is to look at some way of structuring the obligations of professionals,
which is not about is the consent valid or not, but rather
what appropriate practice is. This raises questions not unique
to ante-natal diagnosis, but more pressing to grapple with
because I can see how things could go wrong it that area rather
more clearly than I can say, in consent to curative surgery.
The second area is confidentiality. It seems to me this area
throws into question the whole idea of what it is we are actually
doing in our rules on confidentiality. Is it that what we
are trying to protect is an individual's privacy, and their
right to information about them to remain private and not
be broadcast? Or actually are we trying to deal with the regulation
of information itself, not necessarily about the person from
whom it is generated. That interests me particularly in relation
to genetics, because if you are going to do some sort of ante-natal
diagnosis that will reveal genetic information, that information
is not only going to be information about the woman who is
pregnant. It is going to be information about the child, it
may be information about the father of the child, or information
that more broadly still may be of interest to other members
of the family. So the question of confidentiality is not so
easy as the question of is it right that the person who is
the source of this information is entitled to tell health
professionals who and who cannot be told about the information.
Now I am not sure that this way of characterising things as
problematic, necessarily leads to different conclusions about
how to decide who can and who can not be told information.
However it does call into question the model of the professional's
relationship with a client that assumes it is a one-to-one
relationship. At the very least there is in the context of
abortion discussions, issues of responsibilities of professionals
to potential children. There are also questions about the
role of professionals in relation to families, which our models
of confidentiality which remain intensely individualistic
in most of the medical/legal literature, strike me as not
necessarily providing the smoothest of answers. It is not
that one would want to necessarily reject the outcomes, but
we do need to recognise a more difficult dimension and that
what might be crucial is the proper approach to handling a
regulating knowledge, which may involve more than the individual
immediately concerned.
The third area is the role of the NHS. I have no difficulties
at all in recognising the importance of ante-natal diagnosis,
and the ways in which people use this information to make
choices. It is therefore easy to say this is centrally part
of NHS services. It clearly provides information that enables
people to make decisions about their own health. It clearly
provides information that enables them if they choose to avoid
problems of ill health for a child that might otherwise be
born with a serious abnormality. There is no doubt that with
this service we are carrying on with what is at the heart
of the NHS, improving the health of the population. Remember
that what is set down legally as the obligation of the NHS
is to provide services for the population, rather than individuals.
Equally it seems to me we are dealing with issues where provision
of these services is going to enhance people's ability to
make choices about a very major part of their future lives,
and those choices might include issues about access to health
services now or later. So I have no trouble that this is part
of the National Health Service.
Where I think it becomes more difficult is in relation to
rationing and the setting of priorities. It seems to me very
difficult in the abstract to take the view that ante-natal
diagnosis is a higher priority than other services. I would
think we should be looking at questions of what sort of ante-natal
diagnostic services we are taking about. We may need to make
very hard choices about whether there are certain bits of
information which generally as a society we are not prepared
to pay for. We might consider whether there is a difference
between information where the impact of that information on
women and their families would be so great that we find it
difficult to justify not providing it.
What is very interesting about this issue is that it leads
us to a discussion about the rationality of drawing lines.
I sat on a working party in Southampton looking at this recently,
and one of the issues was age restrictions for diagnostic
services for screening for Down's. The discussion was whether
it was right to have an age restriction, where if you are
in your thirties you will get the service, but if not you
will have to push for it. The difficulty is in taking a decision
at a very abstract level on the basis of statistics, where
on one level you can say that difference in the rate of problems
for a woman who is 29 and a woman who is 30 is very small.
Yet one woman gets the service and the other does not. However
we are always having to draw these sorts of lines. One of
the things the working party discussed was whether we could
create a system where there was a core of services that the
NHS region should make available everywhere, where you could
identify and make room for local discretion, or whether some
extra services should be available if people are prepared
to pay for them.
Of course this makes it very difficult for our legal structure,
because we have a system where it is very difficult to mix
and match private sector care and NHS care. This struck me
however as an area where it might be quite reasonable for
professionals say that a patient is not at sufficiently high
a risk to justify spending money on this diagnosis, but of
course access can provided to the services if the patient
will pay. One of the issues that it is interesting to explore,
but where the law places constraints, is whether it is right
to make sure that a local health authority can go beyond the
minimum standards that the NHS will provide.
The final issue is about the role of the law in regulating
ante-natal diagnosis, and I want to draw a distinction between
two types of concerns that the law might have. One is a focus
on the substantive decisions that are made by individual women
in relation to their pregnancies. It could be that the proper
function for the law is to find of way of deciding if the
decision taken by the woman is one that we regard as acceptable
or unacceptable. That will take us, if we go down that track,
into the motivation for decisions.
Let us say we take the view that the commitment to an egalitarian
society, that doesn't discriminate on the basis of disability,
is the society we now are. Therefore we think it improper
to terminate pregnancy on the basis of at least some degrees
of disability. The sort of legal system that would follow
from that would not be the kind of legal system we have currently.
Our current regime on termination for abnormality has a very
loosely defined disability ground. It is filtered through
the views of two doctors; it is filtered through an undefined
concept of substantial risk and serious handicap. If we really
wanted to identify motive as what the law is about, we would
really have to tighten up those grounds, and also need to
think about whether it was desirable to place limits on termination
early in pregnancy, where we don't require women to go through
those hoops at the moment.
Is it possible, or desirable for the law to regulate individual
decisions, where we believe those decisions are highly charged.
Is it right to expect the law to deal with that? The contrasting
scenario, which I think loosely describes the situation I
think we do have is a system that doesn't concern itself with
the motivation behind decisions, but concerns itself with
allocating the power to decide. It doesn't allocate that power
just to women. If we were to do that, and just concern ourselves
with women's choice, we would not have any restrictions on
termination, we would just have the law of consent. We do
not do this, and instead we create a series of legal hurdles
that women have to get through, and we do begin to decide
on certain limits which create a space for a choice to be
made by the interested parties. We do set limits on time,
and we do go some way to defining the sorts of circumstances
in which we think termination is justified, although we don't
do that very precisely.
The image I would leave you with is one that will be familiar
certainly to lawyers who work on mediation. One of my other
interests is family law, and a lot of the literature on how
people negotiate in the shadow of family law. Some writers
suggest that assumptions that the way in which the law regulates
decisions provides incentives to reach certain settlements.
So if we are considering law relating to settlement of financial
provision on divorce, one argument is that because of what
is likely to happen in the courts, people come to decisions
that they think are in line with what the law will do. This
is what is called bargaining in the shadow of the law.
This assumes the law can do things. It can provide a mechanism
for settling disputes, but can also have an influence on negotiation.
Now this seems to me to raise a contrast. Is it that the law
is trying to create a framework that would only come into
play when there is a dispute to be resolved, that is in extreme
cases, but would still have something to say to people when
they are deciding what they want to do, and would influence
their decision? That would push us towards the motive model.
Or are we saying that all the law should do is to identify
those things where we are sufficiently clear about the right
outcome. Here we should make people do what we think they
should so. We should leave all the rest, hoping that they
act appropriately and rely on professionals to act appropriately
within a space that the law has marked off for them to work
with as best they can.
Theresa Marteau
I am a health psychologist, and I do not practice clinically.
The work that I do is to look at the psychological implications
of some of the technologies that Jonathan has been talking
about. For the last ten or more years I have been interested
in how doctors and midwives talk to pregnant women about pre-natal
tests. I am concerned with how they are actually talking to
women and what the consequences are for the women of undergoing
or not undergoing particular pre-natal tests.
I would say that in terms of what guides practice, my impression
is that the practice of health professionals is guided more
by policy in this area than the law. Central to all policy
is the idea that women, for most often it is women that are
spoken about, are making a choice that is theirs alone. Words
like autonomy are used frequently, in phrases such as 'there
must be respect shown for individual autonomy in this area',
and the issue of consent, which is the term that lawyers use,
comes up too. There is a particular reason for this because
of the history of eugenics in the last hundred years in the
Western World, which so horribly went wrong in Nazi Germany,
but there are many other examples too, not just that one.
For many people one of the central defining points of eugenics
is imposition from a State, to try to effect people with a
particular genetic state in a population.
It is felt to be very important that one way to disentangle
past abuses of genetics from the current use of genetics is
to make decisions individually based. The idea is that people
should have the choice, and it is not expected that people
will undergo terminations or that people will not undergo
terminations. It is seen as a private area that needs to be
protected.
What I want to do is give a couple of examples from research
by my own group as well as from others to ask the question:
'What does it actually mean to say that an individuals decision
has been autonomous?' I have no answer, but I think that the
concept of autonomy is quite problematic, certainly for a
psychologist. It is a potentially useful term, certainly for
reminding us of past abuses and why we need to be very careful
in trying to make the conduct of healthcare in this area better.
I think also that it is a bit of a smokescreen, because it
stops us going beyond political rhetoric and ideology.
I am going to look at research that illustrates two issues.
The first is that people's behaviour or choice is influenced
by the situation in which they find themselves. This has happened
to you already many times today. If you go shopping in a supermarket,
it is estimated that up to 50 per cent of things that end
up in our trolley were determined by packaging and where things
were put on the shelf. You also know that what you were able
to choose depends on what was put on the shelf. All of us
are already familiar with that idea. The supermarket manager
did not force you to put those things in your trolley, but
the situation determined what you actually did. I can give
two examples of this in the ante-natal context.
The first is a study that was conducted over ten years ago.
This was carried out in the States. It was not an experimental
study, but what they did was offer amniocentesis to women
who were aged over 35. This is an invasive test to check the
chromosomes, to see whether the baby has Down's Syndrome.
What this study shows is that if the doctor spoke about the
test, and told the woman that the test could be done that
day, then 93 per cent of the sample said yes, gave consent
and underwent the test. If the woman was told about the procedure
on one day, and then had to make a return visit to the hospital,
then only 78 per cent came back and underwent the procedure.
In both cases consent was obtained, but a different number
actually underwent the test.
Another example is from a study conducted in the UK by a group
I was working with, and a similar study conducted by colleagues
of ours in the States. What we were doing was offering carrier
testing for Cystic Fibrosis. What that means is that we were
offering adults, aged between 18 and 45, who were all registered
with one General Practice, the chance to find out if they
carried the gene for Cystic Fibrosis, which is a recessively
inherited condition. This means that if you have a child with
someone else who is a carrier, there is a one in four chance
that your baby might have this condition. 5 000 adults were
offered this test, and initially we sent a letter to a thousand
of then, in London, giving them the opportunity to come into
the centre, to take a mouth-wash to find out if they were
a carrier for this condition. We found that ten per cent came
for this.
We noticed up the road that there was a group of geneticists
carrying out the same test, but getting an uptake rate of
70 per cent, and we wondered what was going on. We found out
what they were doing and did the same thing and found that
lo and behold the rate changed. The method used was for a
very attractive researcher to approach patients when they
came in to see the GP and give them information about what
the test was about rather than them just receiving a written
letter. This way we also found that 70 per cent underwent
the test. We varied again, and they were offered the opportunity
to undergo this test face-to-face, but had to come back another
day to take the test. Here the uptake rate went down to 25
per cent.
The similar study in the States found essentially the same
pattern, whether there was a letter or information given face-to-face,
but the uptake in both cases is much lower. This may be something
to do with insurance concerns in the States and the issue
of abortion, where a higher proportion of people do not see
this as an option. Nonetheless, the point is that people choose
different things depending on how the information is given.
One question is which is better? The answer depends who you
are. If you run a CF testing company, then you will say face-to-face
same day testing, because you get a higher uptake. Really
one needs more information, because it may be that lower uptake
happens where the inconvenience factor has overtaken what
people want ideally, and compromised their choice. It may
be that higher uptake rates reflect social influence because
of face-to-face communication, which is not actually to do
with undergoing the tests. Although we hear a lot of talk
about how relationships with doctors has broken down, in the
main relationships between health professionals and the public
are very positive. Doctors and nurses are still powerful people
in our culture.
This evidence raises questions about what is a choice in this
situation. The other issue that I want to touch on is communication
between health professionals and their clients. How do doctors
and nurses talk to their patients about pre-natal tests? I
want to give one example from a study we conducted two years
ago where we tape-recorded routine consultations of obstetricians
and midwives, although I am just going to give the example
about obstetricians now, where they were talking about pre-natal
tests. The test is amniocentesis and this is what was said
by three obstetricians talking to women.
The first one says: 'Obviously at your age we would strongly
advise the amniocentesis test'. Another says: 'I would do
the same thing in your position'. The last says: 'If you were
my wife I would advise amniocentesis'. There is one school
of thought that says this approach is awful. It doesn't understand
the ethical sensitivities of ante-natal testing, and doctors
are exercising power in pushing their patients in one direction.
If you look at geneticists talking to patients, they would
not use this language. There is another argument that says
maybe the obstetricians are helping the women who are faced
with a quite isolated decision, and giving them more of a
sense of where they stand, given the majority of women do
undergo these tests. So one could approach it from a pragmatic
point of view, and do research to look at patterns of communication,
to see how patients are feeling following different patterns
of communication. It may be that actually women are much happier
about the decisions that they make when they have had a health
professional giving them some advice. It may be that ethicists
feel that women's happiness is not the important thing but
it is more important that the right process is stuck to. I
have characterised the debate rather crudely, but that is
one of the debates that runs through this area.
My sense is that all of us are operating in a social environment.
There is social influence going on all the time, and I do
not think there is any evidence of people being coerced or
forced to undergo these tests. Nevertheless the information
is being presented in such a way that is more likely to lead
people to undergo tests than not. That leads us to ask what
is the optimal way of giving information. One could say that
autonomy is being minimised in some of the clinics, but this
may not be the case.
John Gillott
To begin on a popular note, I don't know if any of you heard
about this story, but some adverts appeared in America in
mid-September which said 'Children made to order - there has
never been a better way to bring a child into the world. At
GATTICA it is now possible to engineer your offspring. Here's
a check-list to help you decide which traits you would like
to pass on to your new-born'. It begins with ways of making
sure most of the hereditary diseases can not be passed on.
It moves onto the character and behavioural traits, such as
musical ability or athletic prowess and so on. You may know
that this was a spoof, put out as a way of drumming up interest
for a film called GATTICA. However as an item in Nature pointed
out, quite a few people who are involved in medicine thought
it was serious and rang up to check, to see if they had missed
something.
Perhaps even more intriguingly, the day before the ad appeared,
not unrelated themes were on the agenda for the first meeting
of the Gene Therapy Policy Conference, sponsored by the National
Institutes of Health. At this conference, leading gene therapists
like W. French Anderson, were arguing that it was going to
be hard very shortly to avoid the possibility of testing for
enhancement through genetics, rather then simply the detection
of genetic disease. I throw this out because these are the
kind of things that fill the media all the time, and we may
want to talk about them during the discussion. I am not going
to talk about the speculative, futuristic issues myself, but
the advances in science to do with genetic disease are perhaps
no less rapid than some of the projections we do see in the
media.
A lot of the background to this discussion is about rapid
scientific advance, but there is great advance in services
as well. It is worth bearing in mind that pre-natal testing
is now allowing more conditions to be tested for, but there
are also safer methods of testing and earlier kinds of testing.
Soon we will have non-invasive methods of testing during pregnancy,
where it is going to be possible to isolate minute amounts
of fetal blood from the mother's blood stream. The testing
is soon to become quicker and less invasive, and picking up
in Jonathan's argument, perhaps cheaper.
This advance of the service, and the possibility of offering
testing more widely, from a public health perspective, have
raised a number of concerns. I want to look at three linked
objections or concerns in the area. The first is that science
and technology are shaping the demand for the service. This
is the idea that the advance of science itself is making people
opt for testing. Choices are not being freely made, but rather
are being constructed or encouraged. The second idea is that
the service is directive, even if it is not coercive. People
in the past used to fear eugenics, in the sense of a state
plan. Now the argument is more that we face eugenics by stealth.
The case made is that demands are shaped by science, services
will be directive, and this will lead to a context where parents
'choose' their offspring, but without real choice. De facto
there is a eugenics policy, without it necessarily being called
that. Linked up with this approach is the idea that this kind
of push will devalue and discriminate against disabled people.
I want to begin by talking about the issue of choice, but
take a slightly different approach to Theresa. I want to argue
that people can and do make choices. To look at this it is
worth breaking down who actually uses the service. The first
thing to bear in mind is that there is a group of people who
most obviously are making choices and who most obviously are
well informed. This is people with a genetic condition in
the family, with an affected child, who know a lot about the
condition. They are very well motivated and very aware about
the condition, often to a greater degree than a lot of the
medics. They are making a choice, on the grounds that they
know they are at high risk, and because of this actively want
ante-natal testing services.
That set of people also minimises some of the problems of
consent and confidentiality, precisely because the condition
is already known in the family, so there is just not a question
there. The second set of people is couples screening. Here,
generally speaking, most people who might have a child with
Cystic Fibrosis would not be aware that this could happen,
because they are not aware of a family history. What happens
it that in some places, for example Scotland, there is a very
well organised service offering couples screening during pregnancy,
and following that up with ante-natal testing were both partners
shown to be carriers of CF. There is a high uptake of this
service of around 80 per cent.
There are two ways of looking at this. You could argue, following
Theresa's point, that the medical profession is making this
choice. The medical profession is saying 'Here's this test.
You really want to take it'. The other way of putting it is
that people are inevitably naïve to the test being available,
because they have no family history, and do not think there
is an issue. Once it is made known to them during pregnancy
that there is some risk, and testing is available, then they
can become quite self-motivated to find out. We do know that
pregnant women and families as a whole are quite keen to make
sure that everything is done that is possible to ensure a
healthy birth. If the science is made known to them, and therefore
they are no longer naïve, it can be argued convincingly that
they are making their own choices. You can not make a choice
if you do not know what is on offer. But once it is known
what is on offer, then people are capable of making choices,
and pursuing what is best for them. The vast majority do undergo
couple screening and follow on with tests where necessary.
Where there is a question of things cropping up out of the
blue is in the area that Jonathan raised. This is about routine
screening, where problems are turned up which are not necessarily
associated with the screen. To put this in perspective, I
still think people can and do make choices. In the event of
a problem being detected, they have to be informed of the
issues, but then do make choices. I would argue that reasonably
strongly.
This is obviously a contentious area. I would slightly disagree
with the way Jonathan put this. Even if we did follow the
Ian Kennedy line on the law, and said we should impose law
which we think is right, I still think it would be possible
to have total freedom to terminate pregnancy on the basis
of genetic diagnosis, without in any way being discriminatory
to people with genetic conditions. Members of GIG for example,
who have children with a genetic condition, and choose not
to have any more, do not care less for or value less the child
they have already as a result of making this choice. It is
also possible at a society-wide level to have the same kind
of attitude.
It is important to separate out the medical condition from
the individual, and recognise people can be granted full human
rights, without having to say it is as beneficial to have
a genetic disease as to be free from it. In other words, there
is no need to link disease to identity. In think it is a feature
of the growth of a form of identity politics that the two
are often put together now. Respect for human rights is being
equated with being non-judgmental about having a medical condition.
In contrast I think we can talk about curing disease, and
say it is better not to have than to have a genetic disorder,
without saying we want to get rid of people with conditions.
I think this is an important point.
If you then add to that the status of a fetus and the status
of a living individual, however we define the difference between
those two, we can have a view which says it is in no way discriminatory
to seek to have people making choices to avoid the birth of
a child with a genetic condition. I do not think it is even
discriminatory for society from a public health point of view
to organise on that basis. It would be naïve to argue that
services are not organised in this way, in order to reduce
the incidence of genetic conditions, but I think at the same
time this is not equal to discrimination against the disabled.
Today we have a rise in genetic diagnosis, but it is not the
case that society is becoming more intolerant to people with
genetic conditions. People say there is less tolerance, but
I do not sense it myself in contemporary culture.
So I think people do make choices, and that there is nothing
discriminatory about those choices, even if organised and
promoted by society. The final point I want to look at is
raised by a piece of work that Theresa has co-authored. The
article is called 'Non-directiveness in genetic counselling
-an empirical study', published in the American Journal of
Human Genetics. It is a very interesting piece of work, which
documents the attitudes of counsellors, counsellees and uses
objective measures of directiveness during genetic counselling.
The main thing that came out of the research, was a recognition
that regardless of the professed desire to be non-directive,
whichever way you look at it, services are directive in one
way or another. This raises two important questions. One is
whether genetic services could ever be non-directive, and
the other is it a problem that they are not at the moment.
Is its desirable to even aspire to be.
I would make a few points in response to these issues. One
is that I do not see anything wrong in counsellors clarifying
likely implications of genetic conditions. If that is what
is meant by being directive, then so be it. I think it is
a necessary part of the job to do this, and a reasonable part
of the job. An interesting fact in the paper is that those
being counselled were happiest when the professionals were
being most directive. The post positive experience is where
they spell out what results mean, explain the implications
and say what other people have done in that situation.
We could go a step further and say that coming back to the
question of free choice, that there is perhaps an obligation
on genetic services to be directive, because people are not
initially aware of the choices they can make, and these should
be pointed out them. Most people come to services naïve to
the reality of genetic conditions, and it is reasonable that
this is pointed out to them. Second time around parents make
the choices they do knowing the reality of a genetic condition.
It would be quite reasonable for professionals to let people
know the first time that are considering a child what the
reality is. If that means being directive, we should not worry
about it, and in fact services should carry on in this way.
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