Social Science & Medicine 55 (2002) 743–753

Too many choices? Hospital and community staff reflect on the

future of prenatal screening
Clare Williamsa,*, Priscilla Aldersona, Bobbie Farsidesb
a
Social Science Research Unit, University of London, 18 Woburn Square, London WC1H ONS, UK
b
Centre for Medical Law and Ethics, King’s College London, Strand, London WC2R 2LS, UK

Abstract

Promoting informed choice is commonly recognised as the chief purpose and benefit of prenatal screening, its very
presence being viewed as a key way in which the process can be distanced from eugenics. As the number of conditions
and features which can potentially be screened for rises, dilemmas about how to achieve informed choice can only
increase. Seventy hospital and community staff working in or attached to two English hospitals were interviewed
individually on topics which included their views on genetic developments and moral beliefs and values, and how these
affected their daily work. The majority then took part in small discussion groups led by an ethicist. The research
identified a paradox. On the one hand, participants recognised the centrality of informed choice to prenatal screening,
although they had many doubts about whether it could be achieved. On the other hand, most saw the expansion of
screening, which might further compromise informed choice, as an inevitable and inexorable process over which they
had little, if any, control. This was despite the fact that many of them decided, managed or implemented prenatal
screening policies within their hospitals. The paper explores the factors which staff themselves identified as responsible
for this perceived inevitable expansion. It then discusses more generally how the expansion of medical technologies can
appear as inexorable to those involved. Finally, the paper calls for more inclusive, integrated and collaborative debate
and research around the whole area of prenatal screening. This is to ensure that as far as possible, the wider
consequences and implications of any proposed expansion to prenatal screeningFboth the promises and the potential
side-effectsFare debated ahead of their implementation, and also to help ensure that public policy represents and
serves contemporary society. r 2002 Elsevier Science Ltd. All rights reserved.

Keywords: Prenatal screening; Informed choice; Genetic knowledge; Health technology

Introduction the need to be absolutely clear and explicit about the

Promoting informed choice is commonly recognised
as the chief purpose and benefit of prenatal screening, as
reflected in many professional guidelines. The centrality
of informed choice is illustrated by the foreword to the
Second Report of the UK National Screening Commit-
tee (Department of Health, 2000), which states that an
important general theme is:
*Corresponding author. Tel.: +44-207-612-6397.
E-mail address: clare@williams-forbes.freeserve.co.uk
(C. Williams).
risks and limitations of screening. There is a
responsibility to ensure that people who accept an
invitation do so on the basis of informed choice.
The very presence of informed choice in prenatal
screening is often viewed as a key way in which the
process may be distanced from eugenics (Kerr, Cunning-
ham-Burley, & Amos, 1998a). In the area of prenatal
screening the concept of informed choice is a complex
one, although this has not always been acknowledged,
particularly, in the biomedical literature. Instead,
recommendations have tended to focus primarily on
the importance of increasing the knowledge of practi-
tioners and women, on the assumption that this will

0277-9536/02/$ - see front matter r 2002 Elsevier Science Ltd. All rights reserved.
PII: S 0 2 7 7 - 9 5 3 6 ( 0 1 ) 0 0 2 0 0 - 3
744 C. Williams et al. / Social Science & Medicine 55 (2002) 743–753
enable practitioners to ensure that women make
informed choices. One of the implications for practice
noted by The Health Technology Assessment (HTA)
Review (Bricker et al., 2000) is that, ‘Rapid changes in
care may leave maternity staff and women behind.
Better information is needed for both’ (p. 48). Whilst
this may well be true, other factors such as inadequate
resources have previously been recognised as negatively
affecting informed choice, even when only one screening
test was being offered (Green, 1994). As the number of
conditions and features which can potentially be
screened for rises, dilemmas about how to achieve
informed choice can only increase.
This paper explores the views of hospital and
community staff involved in prenatal screening and
testing. It looks at some of the main factors that they
identified as limiting informed choice, and then goes on
to explore why, despite their concerns, many felt that the
rapid expansion of prenatal screening was inevitable. At
the outset it should be stated that although many people
use the term screening in a broad sense to include
genetics, current prenatal screening is almost entirely
concentrated on phenotype information (Alderson et al.,
2001).
The study
The paper reports on one aspect of a larger project in
which the key research questions were: How is genetic
knowledge affecting policy and practice in perinatal
health care services? What challenges and opportunities
does the knowledge present, and how do practitioners
address these in their daily work, both individually and
together? What aims and values guide them, and how
can insights from ethics and social science help? How
can these insights be shared in more useful ways with
busy practitioners? Can multidisciplinary group discus-
sions help staff to discuss and resolve dilemmas?
Seventy people working in or linked to two English
hospitals (one teaching hospital and one district general
hospital) and in attached community services, were
interviewed individually by the two research sociologists
(P.A. and C.W.). The semi-structured ‘guided con-
versations’ (Lofland & Lofland, 1984) encouraged
respondents to give their own accounts and meanings.
The interview themes included interviewees’ views about
genetic developments and moral beliefs and values, and
how these affected their daily work.
Fifty six interviewees then took part in small (usually
4–6 people) discussion groups led by a health care
ethicist (B.F.), with 12 participants attending twice, at
their request. Their work related directly or indirectly to
perinatal care, and participants included: midwives;
health visitors; neonatal nurses; genetic counsellors;
sonographers; obstetricians; foetal medicine specialists;
haematologists; paediatricians; neonatologists; scien-
tists; psychologists; chaplains; legal, audit and primary
care managers. The 11 groups discussed topics raised
during the earlier interviews, which included informed
choice. The groups were of mixed disciplines and
seniority apart from one which was made up of
practitioners working within haematology. Discussions
lasted approximately 2 h, and with permission, were
taped and transcribed. This paper is based on the group
discussions.
Transcripts were analysed by content for emergent
themes (Weber, 1990) which were then coded (Strauss &
Corbin, 1990). Codes were compared for similarities and
differences across the groups, eventually leading to
broader themes which made up the overall theoretical
framework (Charmaz, 1983). Informed choice is part of
the conceptual theme exploring issues of equity in
relation to prenatal screening. The research team met
frequently to discuss the data and analysis and to
incorporate sociological and philosophical perspectives,
in order to add to the richness and validity of the
analysis.
To protect anonymity, each participant is identified
by a number and the hospitals are not identified,
although a similar range of views was found in each
one. In addition, participant titles have been purposely
kept broad, so for example, those described as midwives
range from junior midwives to senior managers, and
those described as obstetricians range from research
fellows to consultants, and include those specialising in
foetal medicine.
Informed choice
One of the reasons the hospitals were selected was that
they offered different antenatal screening programmes.
For example, the district general hospital offered the
more typical (within the UK) maternal serum screening
at 16 weeks gestation, which indicates whether there is a
higher chance of the baby having Down’s syndrome or
open neural tube defects. The teaching hospital offered
an innovative ultrasound scan at 12–14 weeks gestation,
which included within it the option of screening for
Down’s syndrome and major physical anomalies. When
discussing the purpose of prenatal screening, group
participants recognised the centrality of informed
choice:
Midwife, 50: yto give the client more of an opinion
as to what the risk factors areyto give them
more information, to be able to make an informed
choice.
Manager, 53: You don’t have to have screening, it’s
there. You choose to have it, it’s not compulsory, so
if you don’t want to know, you don’t need to take up
 C. Williams et al. / Social Science & Medicine 55 (2002) 743–753
screeningyand it goes back to information and
helping people make the choices, and it would be a
different matter if society said, ‘‘and if we found this
is the outcome you have to do thisy’’.
However, despite the freedoms implied by the
opportunity to choose, staff identified a number of
constraints on women’s choices.
Restrictions on individual choice through the offer of
screening
Many participants felt that women’s choices to opt in
or out of screening might be shaped through the very act
of screening being offered:
Midwife, 51: Of course antenatally we offer all the
different options, because they are there for couples
to choose. It’s their choice as to whether they have
serum screening, Bart’s tests [a type of serum
screening] and things like this. We have to offer it
because it’s individual choice and it’s there, but also
in a way if you are offering these things, you are in a
way implying that it is better to have the perfect child
if you see what I mean.
Manager, 57: I think if it’s [screening] there they will
have it in most cases, won’t they? If it’s offered to
them they will take it, because it gives them that little
bit of added reassurance, that little bit of comfort
sort of thingypeople take what’s offered.
Difficulties of ‘opting out’
Many participants felt that screening was commonly
perceived to be an integral part of antenatal care which
women might feel a responsibility to have:
Midwife, 31: I think society deems that everything
should be perfect and I think that a lot of women,
when they’re faced with the thought of having
screening and other invasive procedures, feel that if
they have a handicapped child, if they don’t have the
screening, it’s almost as if to say, ‘‘Well, it’s your
fault because you didn’t have the screening’’.
Manager, 53: It’s about the process of the whole of
antenatal care to me, it’s about a process of making
sure you have a normal baby at the end of it, and in a
sense you sign up to doing the right thing, so you get
this ‘perfect’ baby as a result, and that’s [screening]
just part of the process.
Most participants felt that it was much harder for
women to opt out of screening than to opt in, as
illustrated by the following sequence from Group 10:
745
Midwife, 45: It’s very difficult, because if a woman
now chooses not to have a scan, which is very
unusual, but if she does, it’s almost written every-
where, you know, ‘‘difficult womany’’.
Ethicist: But that goes back to the question of what is
screening about, and if it’s about giving choice, one
of the choices available is to opt out.
Manager, 57: I don’t think you are ever given that
choice to be honest.
Midwife, 45: You aren’t. It’s a very difficult choice,
and I think you have got to be very strong, because
every time you come to the clinic somebody says
something.
Manager, 57: Yes, and you’re labelledFit’s like,
‘‘Oh, she’s a difficult one’’.
Midwife 51: You’re deviant.
Some people felt that women had similar difficulties
later on, if they decided against the termination of an
affected pregnancy. For example, this health visitor
explains how she was notified about the birth of a baby
with Down’s syndrome on her caseload:
Health visitor, 62: I’ve had people phoning me up to
let me know that I’ve got a new Down’s baby and
it’s, ‘‘they had the test and they knew they were going
to have it [baby with Down’s syndrome]’’. It’s the
judgemental thing, saying any woman in their senses
would terminate.
A few participants, however, did not feel that the offer
of screening might put pressure on women:
Obstetrician, 18: Would an English woman ever go
into screening, including diagnosis and termination
because she feels pressurised by society that she
would be doing something bad if she didn’t? In
England, 1999, for Downs? I don’t feel that.
Lack of time to present choices
As noted in previous studies (e.g. Green, 1994),
almost everyone highlighted the lack of time to explain
the screening process fully to women:
Manager, 42: yI think the dilemma between saying
that people need good information and then saying
there’s not enough time, that is the dilemma we’re
grappling with, and personally I think screening has
been introduced without that resource commitment
being taken on boardyit is very much the physical
746 C. Williams et al. / Social Science & Medicine 55 (2002) 743–753
side of things are dealt with, and nobody says, ‘‘Well,
actually we need all this support around it’’.
How screening information is offered
Some practitioners recognised their own potentially
strong influence on women’s choices:
Midwife, 51: If you offer it in such a way that it may
not be such a negative thing to have a baby with
Down’s, then it may not beyyou may get someone
else who through past experiences may offer it in a
different way, so we have got an incredible amount of
power in that relationship.
Psychologist, 55: If the ethos is to prevent the birth of
babies who are disabled or who have problems then
you would expect the screening to be as it isyto say,
‘‘Well, there you go, there is a risk or there isn’t’’, and
then the mother or the parents are invited to make
the decision about whether to go on or not. That’s
where it stops really, doesn’t it? The emphasis I don’t
think would be on encouraging you in any way that
you are going to be able to cope.
Information given about conditions screened for
There was concern about the accuracy of the
information given to potential parents about the
conditions being screened for, or diagnosed:
Paediatrician, 58: ybut then sometimes I have had
the feeling that people, I wouldn’t say, are pres-
surised, but that they are not necessarily given a
realistic idea of what the outlook will be for their
unborn child, that too black a picture may be
painted, and maybe by people who don’t actually
know themselves.
Haematologist, 28: I think in most genetic diseases,
we are becoming less clear about prediction of
outcome, and how the range of interacting environ-
mental, genetic factors, which ultimately will govern
the medical care in that particular situation, and all
the social factors, are still largely unknown, so it
would be intellectually dishonest to predicate a
choice based on that knowledge.
Complex information presented at a sensitive time
posed difficulties for professionals and women:
Paediatrician, 58: ...but perhaps you need all this
information before you are actually pregnant because
I think when you are pregnant or when an
abnormality is found on a scan, that is a really
difficult time to try and explain the pros and cons of
what a cleft palate means, or what extra digits mean,
the sorts of things you can now see, and I don’t know
enough about it, but I worry that some people
probably make actually what turn out to be very
foolish decisions....
Societal attitudes to disability
Many staff saw a general lack of support within
society for disabled people and the difficulties this could
present for women in making informed choices:
Midwife, 8: One of the most important things is that
society here is not set up to cater for these children
once they’re born, I think that’s the major problem.
It’s not that people disagree with you having a
handicapped child, it’s just that when you do have a
handicapped child, you are then almost, not without
exception, but you’re almost left to deal with it
completely on your own, and it’s not necessarily a
disapproval thing.
Midwife, 51: I think we have gone down the line
where if you do have a child with Down’s, obviously
you need extra support, but I think, looking at the
resources we’ve got in society, we may not be able to
offer that support.
Thus, although participants recognised the centrality
of informed choice in prenatal screening, for a variety of
reasons, many doubted how achievable this aim was in
practice. Other specific difficulties highlighted, such as
the increased problems faced by women from ethnic
minority groups and the difficulty of providing non-
directive counselling, are discussed elsewhere (e.g.
Williams, Alderson, & Farsides, 2001). It is not
surprising that informed choice was seen as so important
amongst staff. Freedom of choice is central to western
biomedical ethics (Beauchamp & Childress, 1989), the
women’s health movement (Lippman, 1999) and to
prenatal screening (Parker, 2000), and Chadwick (1999)
points out how questioning the rhetoric of choice risks
appearing to argue against individual rights.
Many of the practitioners’ reported difficulties in
trying to promote informed choice are confirmed by the
research of others. For example, Kaufert (2000) states
that although more generally, screening has been
recognised as the defining characteristic of late 20th
century surveillance medicine (Armstrong, 1995), the
screening of women has to be seen as:
a philosophical and historical construct reflecting a
very particular view of health and disease, and a very
particular perspective on women and their bodiesy.
Being screened is a duty; evasion is tagged as
irresponsible behavior, a moral dereliction (pp.
166–167).
 C. Williams et al. / Social Science & Medicine 55 (2002) 743–753
Hallowell’s (1999) study of women attending genetic
counselling for hereditary breast/ovarian cancer found
the freedom to choose being increasingly challenged by
the obligation to know. She states that the rhetoric of
the new genetics constructs individuals as having a
responsibility to obtain genetic knowledge and subse-
quently to attempt to modify their risks, and also, to be
responsible for the health of others too. However, it
should be noted that there is a key distinction between
this type of screening with its emphasis on promoting
health and foetal screening, where, because of the
current lack of treatment, one of the main options is
termination of pregnancy. Lippman (1999) argues that
not only do constraints such as these set limits on the
opportunities women have for choice and control, but
they also increase the likelihood of blame for those who
make the ‘wrong’ choices. These findings echo the
concerns that many participants felt about antenatal
screening, that it was a routine that could be difficult for
women to decline without appearing irresponsible and
blameworthy.
The concerns expressed by a minority of staff about
the information given on impairments being screened for
are supported by Abramsky, Hall, Levitan, and
Marteau (2001), who found that too little, or inaccurate
information was often given about foetal sex chromo-
some conditions. The haematologist in particular, high-
lights the importanceFand the difficultyFof explaining
the variability of conditions being screened for, and the
need to move away from a genetically deterministic
view. The influence on uptake that practitioners may
have by presenting tests in a positive or a less positive
way has been shown by Simpson, Johnstone, and Boyd
(1998), in relation to HIV testing. Negative attitudes
towards disability which some practitioners felt affected
prenatal choices were also reported by Kerr et al.
(1998a), who state that decisions are made within
familial, cultural, economic and social experiences and
pressures, including the stigmatization and lack of
support given to people with disabilities. They believe
that in this way, ‘the line between individual, voluntary
choice and socially enforced coercion becomes blurred’
(p. 192). Kerr and Cunningham-Burley (2000) also argue
that reproductive choices are taking place within a
narrowing context of increasing state and economically
driven surveillance on the one hand, and a declining
sense of collective responsibility for those who are sick
or defined as ‘other’. Lippman (1999) goes further,
stating that dominating economic values serve to
reinforce new conceptions of normality and libertarian
self-reliance, without promoting true self-determination
and choice.
Thus, the concerns participants expressed about
constraints on prenatal informed choices are not new,
but what is perhaps surprising is the fact that they were
voiced by practitioners. Much research concludes that
747
health practitioners underestimate, or are even unaware
of structural and social factors which might restrict
choice. For example, Lippman (1999) states:
There is a tendency in much biomedical literature to
locate (all) influences/constraints on choice internal-
lyy. But overwhelming any such influences, and
generally ignored, are powerful external influences
and constraints on women’s choicesy (p. 283).
Kerr et al. (1998a) found that in the accounts of the
scientists and clinicians they interviewed, ‘simplistic
assumptions’ about neutrality, applied science and
individual choice undermined more sophisticated dis-
cussions about genetics. They argue that, in contrast to
professionals, lay people saw medical, structural and
cultural factors as ‘inextricably linked’ to people’s
decisions (Kerr, Cunningham-Burley, & Amos, 1998b).
Ettorre (1999) also describes how:
biomedical experts, similar to other scientists, distin-
guish between the ‘social’ (ie behavioural processes)
and the ‘intellectual’ (i.e. objective science)y. As a
strategy to maintain professional dominanceythey
attempt to ensure the dominance of the intellectual
by constantly opposing ‘social’ intrusions’ (pp. 550–
551).
However, in our discussion groups, many practi-
tioners, both senior and junior, illustrated that they were
not only aware of, but were troubled by structural and
social factors which they perceived as affecting informed
choice in prenatal screening. These included the
recognition of their own power within negotiations.
Given their concerns about the achievability of what
they regarded as the chief purpose of prenatal screening,
why did participants think that screening services were
expanding so rapidly? During the group discussions, a
number of interlinked factors were cited by staff. These
indicated that although the participants were active in
helping to create and implement screening options, they
did not tend to see themselves as agents.
Momentum of new technology
Many staff felt that the technology of prenatal
screening seemed to have taken on a momentum of its
own:
Health visitor, 56: yas long as we’re offering
antenatal screening, how long is it before another
test gets added, and another test, and anothery?
Midwife, 2: yI’m not convinced thatFperhaps at
all, and certainly not on a regular basisFthat those
of us involved, those of us who provide this service,
really ask ourselves why we’re doing it. It may be
different from place to place, but in my career as a
748 C. Williams et al. / Social Science & Medicine 55 (2002) 743–753
midwife, I’ve never heard a really ‘begin at the
beginning’ discussion about the provision of antena-
tal screening in the same way that we have these
discussions about the provision of other health care
services. It feels to me like something that’s been
dropped in and evolved, and that we haven’t really,
well, certainly, I haven’t been involved in really
serious discussions about, ‘what’s this really about?’
A few participants envisaged the possibility of a
societal decision being taken to halt the process:
Manager, 42: You know, as a society you could go
backwards, we could decide that we’re not going to
provide screening for the entire pregnant population
Fit’s a decision that could be made.
However, the majority felt that the process was
unstoppable:
Obstetrician, 11: The problem is how do we goFwe
can’t go back now. We’ve got here and we’ve got all
this information.
Health visitor, 56: The thing is, you can’t uninvent
things.
A ‘culture of screening’
Linked to the momentum of these technologies was
the perceived importance of screening both in antenatal
care and in health care more generally:
Paediatrician, 58: ybecause that’s the road we’re all
on, that screening is part of life isn’t it, or a certain
amount of screening is part of life, and we just all
accept it.
Midwife, 2: We’ve got into a situation where, you
know, if the average midwife was asked what do they
believe, I would be surprised if the majority of
midwives here said, ‘‘let’s abandon the screening’’.
They have also been drawn into that culture.
Market competition
Market competition was also expected to lead most
hospitals into wanting to adopt the latest screening
techniques, partly in order to retain expert staff:
Health visitor, 56: yare you going to say, well, at
this hospital you can only have the basics, and if you
want anything more expensive you have got to go to
X Hospital? You get into a wheel, don’t you, and
everybody wants to be at the forefront of what’s
going on, don’t they?yand then are all the experts
going to want to go and work at X Hospital, to your
detriment?
Consumerism
Participants felt that the consumer driven society
affected screening policies and options, with dominant
sectors of the public expecting to be offered all available
information, services and options:
Paediatrician, 59: ythe scientific knowledge is
leaping away and will carry on advancing over and
above our capacity to make sustainable decisions
about these thingsyand where the decision makers
of the day draw those lines will be partly consumer
led, because you have such a consumer orientated
society.
Paediatrician, 58: The whole NHS is, the whole
business of costing, genetics, drugs and all sorts of
things, is driven by public demand eventually, isn’t it?
Most felt that consumer demand would continue to
drive the further expansion of prenatal screening
programmes, possibly moving it on from selection to
avoid impairments towards the selection of children with
specific characteristics (Parens, 1998):
Midwife, 46: It depends on their background and
how much they’ve read. You get women who want
serum screening, they will want nuchal translucency,
they want every sort of screening test available to
enable them to obviously make a choice and to have
a ‘perfect’ child.
Obstetrician, 44: I certainly think expectations have
gone up, they are very high, and they have gone up
for whatever they [consumers] envisage to be perfect.
Now, that may be disease free, it may actually go on
to be other thingsywe have people who actually
want to have a certain genderFthat’s their perfect
child.
Restricted notions of ‘normality’
Linked to the perception of growing consumer
demand were concerns about how changing concepts
of ‘normality’ might serve to expand the screening
process:
Psychologist, 22: I have to voice my worry here,
something that troubles me, the issue about growing
demand. If there is a society in which one can make
an individual informed choice that you don’t want to
have a baby with a minor abnormality, then over a
period of years we will see less and less babies with
abnormalities born on the wholeythen the social
pressure on those who are disabled will rise and rise,
and the stigma that will be attached to them will be
even greater. We create this world of perfect people
 C. Williams et al. / Social Science & Medicine 55 (2002) 743–753
where the minor abnormality will be seen as a stigma,
as a very bad thingy.
‘Disposable culture’
The recognition, that with the current lack of
available treatment for many foetal impairments a key
outcome of prenatal screening is termination of preg-
nancy, led to reflections on a modern ‘disposable
culture’:
Health visitor, 56: But we are becoming a society like
that aren’t we? If the washing machine breaks down
it’s cheaper to get a new one than it is to have the old
one repaired, and it’s a continuation of that.
Litigation
The threat of litigation if foetal conditions were not
identified was also seen as a powerful factor aiding the
expansion of prenatal screening:
Midwife, 51: And legally, if you don’t offer it where
do you stand, if those tests and things are available
but you don’t offer it?
Haematologist, 28: ..there have been a number of
successful claims for wrongful births arising out of a
failure to identify genetic riskFthe haemoglobin
disorders specificallyFand so in a sense that dictates
one aspect of our stance on screening.
Economic ‘solution’
Some participants felt that prenatal screening could
be seen as a convenient economic ‘solution’ to the
‘problem’ of disability by the state, as a cheaper option
than providing suppport for disabled people. They felt
that women would have increased options to continue
with their pregnancy, if they could be assured of such
support networks:
Midwife, 47: ...screenings have their purpose, but at
the end of the day, what are we really trying to
sayF‘‘OK, your baby is not normal, not really
accepted in this sort of society that we are living in,
we can terminate it’’. I think it goes a bit deeper than
just saying, ‘‘we are looking after your wellbeing’’.
Are we looking after your wellbeing or are we
looking down the line of how much is this going to
cost?
Manager, 67: I think if the screening programme is
really for people then the support networks should be
there. So your question comes up again, who is the
749
screening programme for? In some ways I feel they’re
being led by economics.
Manager, 53: The other thing to think about is, is it
cheaper actually to invest in screening and therefore
treatingFwhatever you take to be treatingFthan
actually dealing with something afterwards and the
longterm cost implications?
Screening for Down’s syndrome was picked out as
being seen as particularly economically advantageous by
the state:
Obstetrician, 70: I think for Down’s syndrome
everything started from the government, because if
you go back, the whole screening for chromosomal
abnormalities was Down’s syndrome, because they
live and they are expensive for the government, so I
think the emphasis was given to that, and this was the
only reason, because they are more common than
other abnormalities, they can live for 40 years, and
they are expensive for the government so it was more
profitable for the government to terminate those
pregnancies than to support those pregnancies.
Discussion
The research appeared to highlight a paradox. On the
one hand, many participants doubted that informed
choice could be achieved, although they saw it as both
an essential feature of, and a key reason for prenatal
screening. On the other hand, despite these concerns,
most saw the expansion of prenatal screening, which
could further compromise informed choice, as an
inevitable and uncontrollable process. Kerr et al.
(1998b) state that ‘a narrow and privileged group’ of
individuals are making decisions about genetics, includ-
ing prenatal screening programmes. However, the
majority of participants in our study, many of whom
decided, managed or implemented antenatal policies in
their hospitals, felt that they had little control over
prenatal screening expansions, and that they did not
belong to this ‘narrow group’. The discussion will firstly
address the factors which staff themselves identified as
combining to bring the expansion about. It will then
move on to discuss more generally the ways in which the
expansion of new technologies can appear as inexorable
to those involved.
Factors identified by participants
Our research indicates that despite the fact that many
participants recognised their power within individual
situations, they felt they had limited agency, being
mainly reactive, rather than proactive. They perceived
750 C. Williams et al. / Social Science & Medicine 55 (2002) 743–753
powerful forces which they felt were combining to
promote the rapid expansion of screening techniques,
but perceived many of these forces to be outside their
control. Describing how prenatal screening could be
seen by the state as an economic solution to the
‘problem’ of disability, some staff recognised that within
the centralised British National Health Service system,
options and ‘choices’ could be ruled out from above by
those within the Department of Health who shape
policy, supporting Kerr et al.’s (1998b) notion of a
‘narrow and privileged’, and it seems, unknown (to
those on the ground) group of individuals. The idea that
the technology seemed to have a momentum of its own
echoes the work of Brown, Rappert, and Webster
(2000), who draw attention to the ways in which agency
may be attributed to actual technologies, so that they are
seen to be developing ‘naturally along identifiable lines’,
as their ‘‘‘self-evident’ benefits are taken up by users’’ (p.
9). One powerful consequence is that any questioning
about whether a particular option should be taken up
disappears, to be replaced simply by questions about
when it will come about. They state that in this situation:
human agency becomes reduced to engaging in
behaviour to ensure the speedy uptake of particular
technological possibilities. The force implied in this
attribution of agency is that one can either ride the
wave of advancement or drown in the waves of
progress (p. 9).
The culture of screening was also identified by
participants as a force which promotes prenatal screen-
ing. Pregnancy is being seen increasingly as an ‘at risk’
time, with every pregnant woman being offered a
growing number of screening possibilities (Petersen,
1999). As Beck-Gernshein (1995) observes, the over-
riding principle of ‘informed choice’ means that practi-
tioners are duty bound to point out the options to all
women, so that even women who choose deliberately to
avoid screening cannot do so until they have thought
through the process. In the antenatal setting, the links
between being responsible and being a ‘good’ mother
have long been recognised as very powerful, with blame
being attributed to women who fail to act in what is
deemed an appropriate manner (Ehrenreich & English,
1978; Oakley, 1984). Many practitioners felt that,
particularly in the antenatal setting, the offer of a
screening test could be seen as a recommendation which
compromised free and informed choice (Press &
Browner, 1997). As practitioners recognised, these
constraints need to be set within more general trends
in Western society including the current individualised
focus on screening and preventive medicine (Beck,
1992).
The powerful rhetoric of individual choice and
personal responsibility is set firmly within a consumer
discourse (Lippman, 1999; Kerr & Cunningham-Burley,
2000). Participants identified factors within this dis-
course which they felt were serving to expand prenatal
screening. These include market competition between
hospitals, and, as in the United States, the threat of
litigation was seen to be an increasingly important factor
promoting prenatal screening (Press & Browner, 1997).
Understandably, staff were reluctant to argue against
individual consumer choice, as this links so closely with
arguing against individual rights (Chadwick, 1999). It
also goes against the ‘nondirective’ ethos which remains
a key feature of genetic counselling (Clarke, 1997).
Serious concerns were expressed during the groups
about what the eventual impact of individual consumer
choice might be for wider society, including increased
stigma for disabled people, and the notion of the
provisional, expendable pregnancy subject to quality
control on the basis of its future potential (Rothman,
1988). The concerns expressed by participants about the
emphasis on the ‘perfect baby’ have been highlighted by
those who argue that the changes in prenatal screening
and testing may be altering the relationship between the
pregnant woman, her foetus, and the social world
(Rapp, 1999). Dumit and Davis-Floyd (2000) state that
the combination of technocratic emphasis on the baby-
as-product and the development of new technologies to
assess foetal quality has led to a strong focus on the
production of ‘the perfect baby’, with pregnant women
being described as ‘genetic gatekeepers’ (Rapp, 1999).
Indeed, the phrase ‘perfect baby’ was used by some
participants as if it was an unproblematic term. Some
staff perceived there to be little sense of collective
responsibility for disabled people within society, which
they felt affected the choices of women (Lippman, 1999;
Kerr & Cunningham-Burley, 2000). As Rose (2000)
points out, ‘choice’ must be contextualised, so for
example, if women live in a society perceived as hostile
to the needs of disabled people, their choices may be
constrained. However, it should be pointed out that our
research only explored the views of health care staff, not
those of women, nor the actual local services available.
Acceptance and expansion of innovative technologies
The discussion will now focus on two key pieces of
research which explore the ways in which similar
innovative technologies gainedFor are gainingFaccep-
tance, in an attempt to explain further why, despite their
reservations, practitioners seemed to view further rapid
expansion of screening technologies as inexorable.
Whilst the first study by Press and Browner (1997),
explores in detail how actual patient choices to accept
and use the innovation of maternal serum alpha
foetoprotein test (MSAFP) came about in California,
the work of Beck-Gernshein (2000) looks more broadly
 C. Williams et al. / Social Science & Medicine 55 (2002) 743–753
at the factors she considers essential for ‘paving
the road’ for the acceptance of innovative technologies.
Press and Browner (1997) extended McKinlay’s (1982)
model of how medical innovations come to be routinised,
arguing that one of the key reasons MSAFP testing
acceptance was achieved was because the new test was
absorbed ‘under the rubric’ of previous, noncontraversial
routine prenatal care. Once it had been accepted as a
routine part of prenatal care, it was seen by women to
convey the advantages associated with such care,
including information, reassurance and the prevention
of maternal and foetal harm. This then led to consumer
demand, reinforcing the ‘need’ for the service. Press and
Browner (1997) state that although MSAFP was initially
introduced specifically to detect neural tube defects, AFP
was soon identified as a marker of a much wider range of
foetal health problems than was anticipated, and these
expanded uses also became rapidly incorporated into the
screening process. Kerr and Cunningham-Burley (2000)
recognise this normalisation process, stating that, ‘where
new tests fit old paradigms, uptake is higher and
concerns are more muted’ (p. 289). In addition, the
recent HTA Review (Bricker et al., 2000) of ultrasound
screening in pregnancy comments how, rather than being
strategically introduced, antenatal screening programmes
tend to ‘creep’ in (p. 82). This subtle but rapid process of
incorporation, routinisation and consequent consumer
demand may be one reason why Midwife 2 claimed that
she had ‘‘never heard a really ‘begin at the beginning’
discussion about the provision of antenatal screening’’,
but instead had a sense that it had ‘‘been dropped in and
evolved’’.
In the second study, Beck-Gernshein (2000) argues
that in relation to genome analysis, two major values of
modern society, the concepts of health and responsi-
bility, act as cultural prerequisites, helping to create
cultural acceptance of the technology. Then, in a spiral
shaped social process, through the spread of genome
analysis, the very values of health and responsibility are
altered. She states that the introduction of a new
technology requires a bridgehead in the social system,
as the basis for expansion. In the case of genome
analysis, partial acceptance stems from linking it to the
importance of health, and in this way, ‘obstacles are
pushed aside, doubts are allayed, critics are silenced (or
fall silent of their own accord’ (p. 126). With the growing
acceptance and use of gene technology, the concept of
health itself then changes and expands, ‘gradually,
silently, but nonetheless radical in its results’, leading
to rising expectations. Beck-Gernshein points out how
easily preventive health measures gain legitimacy and
rationality, not by direct compulsion, nor a voluntary
act, but by something in between which she calls
‘voluntary compulsion’. This exerts a subtle pressure
which is arguably even more powerful than overt
compulsion (Lukes, 1974).
751
Beck-Gernshein (2000) then focuses on the ways in
which the concept of responsibility has been adapted to
the new options of reproductive medicine and prenatal
diagnosis, in that it now refers to prenatal qualitative
selection. The words used, such as prevention, link, ‘to
goals which are widely accepted because they serve the
interests of the individual (maintaining health, avoiding
pain) as well as the interests of society (cost saving)’ (p.
131). However, she argues that a change of attitudes is
occurring, posing the question, ‘Do ethics in the age of
genetics mean that avoiding the birth of a handicapped
child becomes the obligation of today’s responsible
citizen?’ Beck-Gernshein believes that there are signs
that this is the case, with blame being attachedFsome-
times in subtle waysFto those who do not act
‘responsibly’. As she states,
freedom of choice is proclaimed as a basic right, with
a great deal of goodwill and good intentionsybut on
the other hand, there is the momentum of technol-
ogy, and in gradual stepsFalbeit at first hardly
noticeableFthe concept of responsibility changes its
content; it is being expanded and adapted along with
the increasing options of technology (p. 132).
In adddition, although very few practitioners men-
tioned it as a factor, the possibility of screening and
genetics research becoming increasingly influenced by
corporate and commercial interests should not be
ignored (Rose, 2000; Kaufert, 2000).
The work of Press and Browner (1997) and Beck-
Gernshein (2000) illustrate many of the subtle factors
which may promote the acceptance of innovative
technologies and help to explain why, apart from the
reasons that participants identified as important, the
process might appear as uncontrollable to them, despite
their concerns. Lock (1998) believes that perhaps
because of their focus on the clinical encounter, social
scientists have tended to create an oversimplified picture
of physician dominance. In relation to prenatal screen-
ing, it appears that a complex pattern of wider cross
currents emerges, involving criss-crossing trends and
counter-trends, both internal and external to medicine
itself (Williams, 2001). Whilst women attending for
screening might assume that staff have made a deliberate
and expert decision to offer specific screening policies
within the context of informed choice, and have devised
strategies to ensure that this happens, it appears that, for
a variety of reasons, this may not always be the case.
Within group discussions facilitated by the ethicist,
participants felt able to express their concerns about
prenatal screening, which are similar to those high-
lighted by members of the general public (Kerr et al.,
1998b). Unlike the professionals interviewed by Kerr
et al. (1998a), many of our participants recognised the
complex factors mitigating against informed choice. It
752 C. Williams et al. / Social Science & Medicine 55 (2002) 743–753
appears that these technologies are confronting health
care staff with dilemmas, but many said that this was
their first opportunity to discuss these issues in any
depth with others (Williams et al., 2001). The impor-
tance of debate about medical and scientific innovations
has long been supported. For example, in its 1995
report, ‘Human Genetics’, The House of Commons
Science and Technology Select Committee stated:
The dilemmas that genetics poses will be resolved by
the public and parliamentary debate, not by aca-
demics alone. But that debate must be well informed,
both about the science itself and about its ethical,
legal and social implications.
Although we make no claims for our participants
being ‘representative’, our research took place in two
very different hospitals, and it seems likely that the lack
of opportunities for debate is common, even amongst
staff directly involved in offering and implementing
prenatal screening programmes. The importance of
including a full diversity of views in order to achieve
more accountable and sophisticated policy making has
been persistently called for (e.g. Kerr et al., 1998a).
However, the ongoing lack of inclusive public demo-
cratic debate has been highlighted (Shakespeare, 1999),
as has the enduring notion that the ‘public’ need only to
be educated about science, rather than their expertise
being drawn on to inform debate about what directions
science should or should not be taking (Rose, 2000).
Without this inclusive dialogue and debate, even the
more seemingly straightforward aspects of informed
choice such as the information to be given about
screened for conditions will be impossible to address,
let alone the complexities of issues such as the advance
of DNA diagnostics. In conclusion, this paper adds to
the calls for inclusive, integrated and collaborative
debate and research. This is to ensure that as far as
possible the wider consequences and implications of
prenatal screening technologiesFboth the promises and
the potential side-effectsFare debated ahead of their
implementation, and also to help ensure that public
policy represents and serves contemporary society.
Acknowledgements
We are very grateful to everyone who participated in
this research, and to The Wellcome Trust Biomedical
Ethics programme for funding the project (No. 056009).
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