Is nondirectiveness possible within the context of antenatal screening and testing?

Social Science & Medicine 54 (2002) 339–347

Is nondirectiveness possible within the context of antenatalscreening and testing?

Clare Williamsa,*, Priscilla Aldersona, Bobbie Farsidesb

aSocial Science Research Unit, University of London, 18 Woburn Square, London WC1H ONS, UKbCentre for Medical Law and Ethics, King’s College London, Strand, London WC2R 2LS, UK

Abstract

Partly in order to dissociate itself from eugenics, genetic counselling values the principle of nondirectiveness as a key

feature. Recent reports have upheld the importance of this approach, treating it unproblematically. However, doubtshave been expressed about whether nondirective counselling is possible or indeed, desirable. Changes in organisationalaspects of antenatal screening delivery in the UK have meant that genetic counselling is now being carried out by a

variety of practitioners other than counsellors and specialists. These are often practitioners such as obstetricians andmidwives who, in many other aspects of their work do not practise in a nondirective way. This paper explores some ofthe difficulties health practitioners encountered when attempting to work nondirectively. Reasons given by practitioners

for not following this approach fell into categories, which in turn formed a continuum. Categories along the continuumranged from acting directively at the request of women, through to deciding for women, either covertly or overtly, intheir ‘‘best interests’’. It appears that for practitioners, the boundary between choice and coercion is not a clearcut one,and visualising it instead as a continuum may make it easier to see how slippage between choice and coercion can occur.

The paper highlights the dilemmas which a variety of practitioners are dealing with in their daily work, in the hope ofencouraging debate about these complex clinical and ethical issues. # 2002 Elsevier Science Ltd. All rights reserved.

Keywords: Prenatal screening; Nondirective counselling; Genetic risk; Genetic counselling

Introduction

Over recent years the principle of nondirectiveness hascome to be seen as a ‘‘universal norm’’ in relation to

genetic counselling (Burke & Kolker, 1994). It isbelieved that client autonomy can best be encouragedwithin this approach, with only the client’s values being

discussed within the counselling process (Fine, 1993).Clarke (1997) describes such an approach as:

. . .not to lead clients to make particular decisions orchoices (those preferred or recommended by theclinician, the health service or by society) but to help

them to make the best decisions for themselves and

their families as judged from their own perspectives

(1997, p. 180).

Clarke goes on to highlight four key reasons why

nondirectiveness is seen as so important in the area ofgenetics. Firstly, respect for the dominant ethicalprinciple of autonomy; secondly, a strong desire to

dissociate the area of genetics from the recent history ofeugenics; thirdly, to create an ‘‘emotional distance’’from clients, thus protecting the professional from over-involvement; and lastly, to ensure that professionals will

not be held legally accountable for decisions taken byclients.

Recent reports have upheld the importance of this

approach, treating it unproblematically. For example,The National Confidential Enquiry into Counselling forGenetic Disorders by Non-Geneticists (Harris et al.,

1999) used access to nondirective counselling as one ofthe specific standards against which levels of care were

*Corresponding author. Tel.: +44-0207-612-6396; fax: +44-

0207-612-6400.

E-mail address: [email protected]

(C. Williams).

0277-9536/02/$ - see front matter # 2002 Elsevier Science Ltd. All rights reserved.

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retrospectively audited. However, doubts have beenexpressed about how achievable nondirective counsel-

ling is in practice. For example, Cunningham-Burleyand Kerr (1999) point out how evaluations of geneticservices such as that by Michie, Bron, Bobrow, and

Marteau (1997) highlight the complex relationshipsbetween practitioners and clients, including the differentperspectives held about genetic risk and disease. Theybelieve that such evaluations serve both to challenge the

notion of the neutrality of practitioners, and to‘‘problematise the boundary between choice and coer-cion on which the distinction between genetics and

eugenics so often rests’’ (p. 661).There are also doubts expressed as to the desirability

of pursuing a nondirective approach. Drawing on the

work of Kessler (1992), Clarke (1994) puts forward theview that directiveness may be acceptable if it is explicit,partly because it might allow clients to consider

implications that they might not have thought about.He warns that unacknowledged directiveness could befar more manipulative. Burke and Kolker (1994) statethat directiveness has become a ‘‘dirty word’’ in genetic

counselling, and that this may be creating furtherdilemmas. They argue that the desirability of thenondirective approach should be reassessed, including

a debate as to ‘‘what is permissable directiveness andwhat is impermissable’’ (1994, p. 51). Following herresearch on individuals undergoing counselling for

prenatal genetic testing, Anderson concludes thatpursuing nondirectiveness ‘‘serves to reinforce prevailingsocietal moral imperatives embedded in the professionalcultural milieu that currently governs the delivery of

prenatal genetic services’’ (1999, p. 135).Nondirectiveness is also taken to imply, almost

implicitly, moral neutrality on the part of the counsellor,

with only the client’s values having any part in decisionmaking. Caplan (1993) states that during the 1970s and1980s there was a shift away from the prescriptive goal

of prevention, which resulted in an enhancement ofclient autonomy. So, for example, one commonlyquoted view of genetic counselling states that it should

be performed ‘‘in a nondirective manner wherein thecounselor maintains a morally neutral attitude about theparticular choices clients may eventually make’’ (Yar-borough, Scott, & Dixon, 1989). Clarke (1997) believes

that value neutrality may be an ‘‘attractive position’’ forgeneticists to adopt, as it simplifies the decisions to bemade about introducing new tests. Rather than profes-

sionals having to arrive at a consensus decision aboutwhat testing should be made available, the decisions caninstead be left to individual clients. However, Stacey

(1996) argues that neutrality in the unequal relationshipof doctor–patient communication is simply not possible.In relation to genetic population screening, she believes

that more is needed than reassurance as to the goodintentions of practitioners, stating that the ethos of

neutrality contributes to a lack of public discussion ofsuch difficult issues as ‘‘improving the population’’.

Caplan (1993) also believes that clinging to the ethos ofvalue neutrality stifles open debate of these issues bothwithin the area of genetics, and in the public arena. One

solution, Gervais (1993) suggests, is that the conceptionof autonomy be revised from an individualistic, towardsa more communitarian approach, which would necessi-tate the client being directed through a more intensive

values-based examination of available options. Thisview, however, ignores the fact that the choices peoplemake are strongly influenced by the values and beliefs of

the society in which they live (Stacey, 1996).Much of the debate, particularly contributions from

the USA, assumes that genetic counselling is carried out

by specialist counsellors, who are a key professionalgroup there (e.g. Marks, 1993). However, in the UK,changes in organisational aspects of screening delivery

mean that genetic counselling is now being carried outby a variety of individuals other than genetic counsellorsand specialists. These are often practitioners such asobstetricians and midwives, who, in many other aspects

of their work do not practice in a nondirective way. Infact this approach could in other circumstances be seenas a potentially negligent way of working, for example,

in situations where professional ‘‘best practice’’ advice isappropriate (Caplan, 1993). In addition, Clarke (1997)points out that there are a number of problems as a

result of the ‘‘piecemeal fashion’’ in which ultrasoundscanning for the detection of fetal abnormalities hasbeen introduced in Britain. These include the lack ofprovision for proper counselling, such as inadequate

time, which has resulted in variable standards of pre-scan counselling (Smith & Marteau, 1995).

This paper focuses on one of the areas causing

concern to practitioners involved in offering antenatalscreening and testing, namely, the provision}or not}ofnondirective counselling. In exploring the views of

practitioners as to what takes place within theseconsultations, this paper focuses on only one part ofwhat Clarke describes as individual directiveness, as

opposed to structural directiveness (1997). In so doing, itdoes not consider the many other factors, such as thesocial structures and pressures which may influencepractitioners and women, although it is recognised that

in practice these factors are interrelated.

The study

This paper reports on one aspect of a larger project

which aimed to explore how practitioners addressquestions about genetics and ethics which affect theirwork. In order to help contextualise the paper, our

overall key research questions were: How does newgenetic knowledge affect policy and practice in perinatal

C. Williams et al. / Social Science & Medicine 54 (2002) 339–347340

health care services? What challenges and opportunitiesdoes the knowledge present, and how do practitioners

address these in their daily work, both individually andtogether? What aims and values guide them, and howcan insights from ethics and social science help? How

can these insights be shared in more useful ways withbusy practitioners? Can multidisciplinary group discus-sions help staff to discuss and resolve dilemmas?

Seventy practitioners working in two English hospitals

(a teaching hospital and a district general hospital withdifferent antenatal screening policies) or in the attachedcommunity and management services were interviewed

individually. All of the interviews were carried out by thetwo sociologists in the research team (PA and CW). Theinterviews were conducted as flexible, semi-structured

‘‘guided conversations’’ (Lofland & Lofland, 1984) in anattempt to increase the likelihood that respondents’ ownaccounts and meanings would take priority. The interview

guide consisted of a series of prompts relating to broadtopics such as thoughts about genetic developments;moral beliefs and values; and the impact of ‘‘new genetics’’on daily work. The guide was updated as new areas for

discussion emerged from the interviews. With permission,the interviews were taped and fully transcribed.

The majority of those interviewed then took part in

small (mainly 4–6 participants) multidisciplinary discus-sion groups facilitated by a health care ethicist (BF).Most of the participants in the groups worked in areas

which related either directly or indirectly to variousaspects of perinatal care, and included: midwiferymanagers and midwives; health visitors; ultrasoundscanners; obstetricians; fetal medicine specialists; hae-

matologists; paediatricians; haematology counsellors;genetic counsellors; psychologists. However, some par-ticipants such as chaplains, neonatal nurses and audit

managers were not directly involved in antenatalscreening and testing, and this paper focuses specificallyon the views of those who were directly involved in this

aspect of health care. In order to make the discussiongroups relevant for participants, the topics for eachgroup were derived from the individual interviews

carried out with the group participants. Thus eachgroup covered a variety of different topics, although alleleven groups discussed the issue of nondirectivecounselling. Apart from one which consisted solely of

those working within haematology, the groups were ofmixed disciplines and seniority. Whilst the groupdiscussions were facilitated by the health care ethicist,

the two sociologists observed and occasionally partici-pated. Discussions lasted approximately two hours, andwith permission, were taped and fully transcribed.

Following the discussions participants were contactedby CW for feedback and evaluation of their group.

Individual and group transcripts were read and coded

by each author individually, using a system of opencoding, described by Strauss and Corbin (1990) as: ‘‘the

process of breaking down, examining, comparing,conceptualising and categorizing data’’ (p. 61). A

grounded theory approach was taken, which allowedthemes and concepts to emerge from the data andinform the theoretical framework (Charmaz, 1983). The

research team met frequently to discuss the project,particularly the coding and analysis, as we felt that theincorporation of all of our perspectives was essential inadding to the richness and validity of the analysis. The

coded data were compared for similarities and differ-ences between participants, and for similarities anddifferences in how individuals expressed themselves in

the contrasting settings of interviews and group discus-sions. Over time the codes were grouped into broader,conceptual themes which eventually became part of the

larger theoretical framework, only one small aspect ofwhich can be discussed here. Nondirective counselling ispart of the conceptual theme exploring issues of equity

in the services offered.Each practitioner is identified by an individual

number, but in order to maintain anonymity thehospital type is not identified, although a similar range

of views was found in both hospitals. Again, to maintainanonymity practitioner titles have been purposely keptbroad, so for example, practitioners described as

obstetricians range from research fellows to consultants,and include those specialising in fetal medicine.

Dominant themes

Except where indicated, the data presented in thispaper are drawn from the group discussions. In

individual interviews and initially within the groups, itseemed that participants were often cautious aboutdiscussing their use of any approach other than a purely

nondirective one. However, as the group discussionsdeveloped and practitioners realised that others hadencountered difficulties in using this approach, they

became more confident in voicing the problems they sawas inherent in it. Indeed, in the group evaluations, somecommented that one of the most positive features of

attending the group was the realisation that others werefacing the same dilemmas. The next section will lookbriefly at some of the key difficulties practitioners hadwith the nondirective approach, whilst the remainder of

the paper will explore the reasons practitioners gave fornot following a nondirective approach.

‘‘Taken for grantedness’’ of nondirective approach

Given the almost ‘‘taken for grantedness’’ of this

approach, it is not surprising that many practitionerstalked at least initially in the groups of how they

C. Williams et al. / Social Science & Medicine 54 (2002) 339–347 341

maintained a strictly nondirective approach, particularlyin terms of not giving a personal opinion. For example:

Midwife, 7: ‘‘To me that’s an easy question, becauseyou can never decide what someone should do}they

have to live with the consequences. . .and part of thecounselling skill is to introduce issues they mightwant to think about, but you could never, ever say,

that’s your opinion’’.

Obstetrician, 36: ‘‘You don’t know why they’re

asking, is it as a neutral person, or is it for you tomake the decision, and for that reason I don’t tellthem}I don’t say anything. I make sure I’ve giventhem all the information I can so they can decide,

then I say, ‘‘I can’t possibly make the decision onyour behalf’’ ’’.

Some key difficulties with the nondirective approach

As the group discussions developed, practitionershighlighted particular difficulties}either for themselvesor for women}of following this approach.

Difficult/impossible to be completely nondirective

Many practitioners acknowledged that for them, the

nondirective approach was very difficult, if not impos-sible to carry out in practice:

Obstetrician, 70: ‘‘It is difficult to be nondirective,completely nondirective. I think that if you takeinformed consent, you direct them}not for all

cases, but for some cases, you express what youthink people should do, even if you try not to. . .evenif you don’t realise it, but if you listen to yourself,then I think you direct them in one direction or

another’’.

Haematologist, 10: ‘‘. . .maybe you shouldn’t talk

about nondirective counselling, I think it’sabsolutely terrible. I think we should talk abouttrying to minimise direction. In my view, when

people talk about nondirective counselling they arekidding themselves, and if you actually listen tothem. . .’’.

Different from more usual practitioner–patient

relationship

Practitioners highlighted the fact that they felt the

nondirective approach was often confusing for women,as it contrasted with the more typical practitioner–patient relationship they were used to, where practi-

tioners would offer their opinion as to the best courseof action:

Midwife, 7: ‘‘Yes, they’re in this medical settingwhere they’re being asked to choose, to come up with

the answer’’.

Some. practitioners drew attention to groups ofwomen who they felt this to be a particular problem for:

Obstetrician, 44: ‘‘I often get this, particularly fromour Asian patients. They’re used to going to thedoctor, the doctor tells them what the problem is andthen tells them what to do’’ (interview).

Linked to this, practitioners also recognised thegravity of the decisions people were making, forwhich they were having to take sole responsibility and

blame:

Obstetrician, 11: ‘‘You go through all the options,and then, if I had a pound for everytime someone

said, ‘‘what would you do?’’ Part of it is that theywant your guidance to tell them what you think, butalso they don’t want the responsibility in a veryserious, difficult situation, because you’re saying to

them, ‘‘you make the decision and you take theblame’’, which is very hard when you’ve got amomentous decision to make’’.

There is evidence from a variety of sources whichindicates that a sizable minority of people may wantsome direction from health practitioners when they are

making important health decisions, although it is notknown what the effects of fulfilling such requests mightbe in relation to antenatal screening and testing(Marteau, Drake, & Bobrow, 1994).

Reasons for not following a nondirective approach

The reasons given by practitioners for not following anondirective approach fell into categories, which in turnformed a continuum. Categories along the continuumranged from acting in partnership with women at their

request, through to deciding for women, either covertlyor overtly, in their ‘‘best interests’’. Although somepractitioners appeared to consistently use a particular

perspective, many reported that they moved along thecontinuum, depending on individual situations. Ratherthan mapping the whole range, the paper picks out key

points along the continuum.

Directiveness in response to women’s requests

The first category describes examples practitionersgave as they talked about occasions when womenmight specifically request more directive counselling,

and how this in turn might lead to a more directiveapproach.


Desire for further information

There was a recognition that women might be askingfor the views of others, particularly practitioners, as away of seeking out further information to help them

reach a decision:

Midwife, 2: ‘‘I’m thinking about myself, and I would

like to know what someone else would do. I’m notsaying, ‘‘if anything goes wrong it’s all your fault’’, Imight just be testing different opinions’’.

Psychologist, 22: ‘‘How much of this is them shiftingthe responsibility and blame onto the doctor, versus

them having another piece of information, like, ‘‘howwould this expert deal with this situation?’’ ’’

Integral part of working relationship/partnership

Some women were seen to be asking for the views ofpractitioners within the context of a close relationshipwhich had often been nurtured by the practitioner, andwas seen by that practitioner as important, or even

integral to the way in which s/he worked:

Midwife, 2: We have some groups of midwives whowork one to one with women, and they becomepotentially very powerful, but sometimes the womenare very interested in their view and the midwives

give it and I think they should.

Haematologist, 10: ‘‘. . .if they insist, I say, ‘‘If youreally want to know what I would do, this is what Ithink I would do’’, but I may have to say, ‘‘I haven’tgot that circumstance, and I haven’t got a child like

that, so I can’t tell you what I would do because Idon’t know, I can tell you what I think I would do’’,but I think if pushed we are wrong not to say

anything. I know some people absolutely refuse tosay anything, but with some of these, they arepatients I might have known for 10 or 15 years, and if

you have got that sort of relationship I think then topull out is not actually being helpful. . .’’.

Indeed, having to follow what some practitionersunderstood to be the ‘‘official’’ nondirective policy couldbe the cause of considerable frustration:

Midwife, 21: ‘‘. . .and you know, women say, ‘‘whatwould you do?’’, and we suddenly are mute and can’t

even comment on perhaps the variety of ways inwhich other women make decisions which could behelpful’’.

This section supports the findings of Anderson, whobelieves that attempting to give scientific facts and

medical knowledge in a value-neutral way can under-mine the possibility of encouraging open communica-

tion. She states: ‘‘Tension created by a nondirectiveapproach to genetics counselling undermines the possi-

bility of creating genuine human relationships betweenprofessionals and patients’’ (1999, p. 1310). It has alsobeen argued that patients vary in their preference for

involvement in decision making during consultations(McKinstry, 2000), and that they may not always wantto control what happens to them, the priority being tomaintain choice, which may include the choice to

relinquish control to another person (Deci & Ryan,1985; Harrison, 2000). In addition, the denial of requestsfor advice may be interpreted as a lack of care by women

(Shiloh, 1996), or as an indication of how the counsellorviews the severity of the information given (Shiloh &Saxe, 1989). Clarke (1997) states that one of the reasons

why nondirectiveness is seen as so important is that itserves to create an emotional distance from clients, thusprotecting the professional from over-involvement.

However, a number of practitioners, particularly thosewho had developed a close relationship with women,found this very difficult and felt that in many ways thisapproach was incompatible with their notion of a caring

practitioner–client relationship. This must be set againstresearch which reports mismatches between the judge-ments of health professionals and patients in relation to

factors such as the patient’s need for information andher or his emotional state (Williams, Weinman, Dale, &Newman, 1995; Michie et al., 1997).

Supporting women in decision making

In this category, examples of directiveness were notnecessarily as a result of women requesting it, but were

seen in terms of supporting or helping women in thedecision-making process.

Helping women make their decision

There were occasions where women or couples werefelt to be struggling to make a particularly difficultdecision, as in this case, for example, about whether tohave a diagnostic test for Down’s syndrome:

Obstetrician, 44: ‘‘. . .a decision has to be reached,and I will allow a reasonable length of time for thatdecision to be reached in separate consultations,often with them on their own, and with their partner,

but you have got a space of maybe a week or so forthem. If you are really going round and round incircles and they are not getting anywhere, then I do

actually say, ‘‘Well, given your major dilemma withcoping with termination of pregnancy, you willprobably have to decide to go on with this

pregnancy. . ..I cannot coerce you into having adiagnostic procedure with the downside of losing a


wanted normal baby if you are that ambivalent aboutit, I really can’t. I would rather be directive about

continuing’’’’ (interview).

Supporting women in their decisions

Practitioners also recognised the difficulty of thedecisions women were being asked to make, andsometimes moved from what they perceived as the

‘‘correct’’ nondirective approach in order to support thewoman or couple, once they had made their decision:

Psychologist, 55: ‘‘. . .would you find yourself endor-sing some of these decisions? I think you would}itdepends, doesn’t it, being human, doing what you

would do, you probably do endorse, even if it’s notsaying, ‘‘Terrific, you picked the right choice!’’ Howcan you not?’’

Obstetrician, 44: ‘‘. . .when you’ve got a late diag-nosis, how does a mother cope with the psychologicalimpact of intracardiac KCl [injection of potassium

which stops the heart of the fetus]? It’s bad enoughhaving to make the decision to terminate thepregnancy, but to actually say yes to that, for them

to know they’ve made that decision. They can’tabdicate the decision, because we are being so goodat being nondirective, they actually can’t even give

that decision to someone else. I must admit some-times, when I feel they have actually come to thestage where they have made a difficult decision, I say,

‘‘I think it’s perfectly reasonable for you to make thatdecision’’. That’s all I can do, to help to take some ofthe burden from them} not just to say, ‘‘fine, you’vemade your decision’’, because you’ve got to give that

individual some support’’ ’’ (interview).

These quotes appear to be supporting the findings of

Anderson (1999) and Shiloh (1996) cited earlier, whoboth argue that the nondirective approach can serve toundermine the possibility of caring human relationships

between practitioners and women.The first two categories on the continuum can in many

ways be seen as examples of practitioners acting in

partnership with women. The next two categories can beseen as moving towards acting for or deciding for women.

Directiveness of information given

Deciding what information is needed

During consultations, practitioners recognised that indecided what information individual women should be

given, they were being directive. However, the majorityof practitioners felt that realistically, there had to be

some selection about what information was appropriatein individual situations:

Midwife, 2: ‘‘It is terribly complex}it isn’t goodinformation giving when you tell everybody abso-lutely everything all of the time, I don’t think’’.

However, alongside this, practitioners recognised theinherent difficulties of them deciding what informationshould be offered to individual women:

Obstetrician, 36: ‘‘. . .there are always very, very rarethings that can occur that you decide not to put intothe discussion because you know it’s not relevant to

the discussion, and it’s not helpful and it would causeanxiety. But the difficult issue is where you draw theline, there’s a grey area about what is important’’.

Midwife, 8: ‘‘I think it depends on where they’recoming from to start with, perhaps on their educa-tional background. . ..so that makes it very difficult

because you have to pitch yourself at separate levelsfor each patient. You have to first of all be able to geta handle on how much they understand before you

start offering them the screening service and then youhave to try and channel your discussion with them tofocus on that particular area. . .that’s quite a chal-lenge for the people who are offering the services and

one of the reasons why it, maybe, although it seemsto be very egalitarian it may not be because theydon’t all come from the same starting point’’.

There were also individuals who felt that in order topromote pregnancy as a ‘‘normal’’ event, limitedinformation should be given to the majority of women

at the outset of the screening process:

Obstetrician, 71: ‘‘My personal opinion on balancewould be that it’s better to promote pregnancy as

normal, and to deal and pick up the pieces at the endthan to try and prepare everybody for a tragedywhich is not going to be the case for the major-

ity. . ..My feeling is that the balance is wrong, youworry too many people for the sake of the few. It’sbetter to deal with it when it happens’’.

Deciding how to present information

There was an acknowledgement from all of thepractitioners that the way in which they presentedinformation was crucial, and could also be very dire-

ctive, particularly in the complex area of explaining risk:

Obstetrician, 72: ‘‘This is another crucial point, if youscan people and you say, ‘‘You have a 1 in 200 risk of

Downs, they say, ‘‘Is that good or bad?’’ And thenyou say, ‘‘I’ll put it another way. This baby is 99.5%


likely not to have Downs, and they say, ‘‘Oh well, Iwish you had said that first’’ ’’.

These quotations illustrate some of the ways in whichthe unequal power relationship between practitioners andwomen can manifest itself, supporting Clarke, who states:

‘‘It is we professionals who decide what is to count asa fact, which facts to present, and how to present

them; these decisions (perhaps only ever madeimplicitly or by default) impose a professional framewithin which our clients are confronted with the

restricted range of options from which we expectthem to choose’’ (1997, p. 184).

Overtly or covertly influencing women to follow particular

pathways in screening

This final section describes examples at the other endof the continuum, where practitioners recognised that

they influenced women}either overtly or covertly}tofollow particular screening pathways.

Seeing screening as ‘‘normal’’

A number of practitioners recognised that they foundit easier to accept the decisions of those women who

opted for what was seen as the more ‘‘normal’’ patternof screening acceptance, and realised that this couldinfluence the choice of women:

Midwife, 31: ‘‘One of the women that I saw recentlyactually suggested to me that when people don’t havescreening we tend to write reams in the notes, we

write pages about the fact they they have refused atest, whereas if they have them we write little ornothing at all, so what are we saying to them? Was

that person abnormal because they didn’t want tohave that screening or are we just protectingourselves [legally]?’’

This midwife appears to be contradicting the view ofClarke (1997), who states that nondirectiveness is seen asimportant in helping ensure that professionals will not

be held legally accountable for decisions taken byclients. From the midwife’s perspective, it seems thatthe acceptance of antenatal screening by women acts as

her legal ‘‘protection’’. In addition, the quote illustratesone of the many subtle ways by which antenatalscreening becomes a ‘‘routinised’’ part of the pregnancy

care package (Lippman, 1994).

Acting in women’s ‘‘best’’ interests

A few practitioners described how it was possible to‘‘guide’’ women down particular pathways, covertly:

Midwife, 8: ‘‘You can easily force, not force them[women] but you can easily channel them into the

decision making process that you feel is cor-rect. . ..and. it’s almost like you couch your repliesto them slightly differently because your gut instinct

tells you that there’s something badly wrong, and youthink, ‘‘they’re not going to do anything about it’’,and you feel they should do’’.

These decisions were not taken lightly by practi-tioners. However, it could be argued that this type ofaction falls into what Clarke (1994) describes as

unacknowledged directiveness.

Discussion

Although it is recognised that there may be differences

between self-report and actual clinical practice, thediscussion groups highlighted the fact that for manypractitioners there are a number of dilemmas around the

whole area of nondirective counselling. Practitionersdescribed a variety of circumstances when nondirectivecounselling did not seem to them to be possible, or to bethe most appropriate response to the situation. These

circumstances and practitioners’ responses formed acontinuum, ranging from acting in response to women’srequests for directiveness, through to covertly making

decisions on behalf of women. It appears that forpractitioners, the boundary between choice and coercionreferred to by Cunningham-Burley and Kerr (1999) is

not a clearcut one. Visualising it instead as a continuummakes it easier to see how slippage between choice andcoercion can occur. Currently, nondirective counsellingis used as an all encompassing term, but it may be that

conceptualising the process as a continuum will facilitatediscussion as to which}if any}aspects of directivenessare acceptable, and which are not. As Clarke (1997)

points out, the use of nondirectiveness results partlyfrom the desire to dissociate genetics from the recenthistory of eugenics. However, it seems that anxiety over

not wanting to appear eugenicist may be stiflingdiscussion as to what is actually taking place duringconsultations. It appeared that many practitioners were

struggling to decide just what kind of directiveness waspermissable and what was impermissable (Burke &Kolker, 1994), but this was often an individual, privatestruggle. For the majority of practitioners this was

the first opportunity that they had had to discussthese issues in any depth with others, and there wereoften differences of opinion amongst people working

within the same units. However, as previously stated,participants were reassured that others had the samedilemmas and welcomed the chance to discuss them in

what they perceived as a nonthreatening multidisciplin-ary environment.


The intention of this paper is not to lay down strictguidelines or recommendations for practitioners to

follow. Rather, it has been written with the aim ofhighlighting the dilemmas which a variety of practi-tioners are dealing with in their daily work, in the hope

of encouraging debate about these complex clinical andethical issues. Indeed, the term ‘‘guidelines’’ impliessomething static, and it seems apparent that this is anever changing area in which services should be

frequently discussed and critically re-evaluated. Thisshould not be a managerial exercise, but a reflectiveactivity which needs to be incorporated within the work

of all practitioners.In addition, there are a variety of ways of evaluating

prenatal screening programmes. For example, Clarke

(1997) provides a useful starting point by suggesting thatprogrammes are located and assessed on a spectrumbetween contrasting types, which he describes as the

‘‘informed choice’’ model, and the ‘‘genetic cleansing’’model. Similarly, Caplan (2000) argues that in order todistinguish ‘‘moral’’ from ‘‘immoral’’ prenatal screening,a number of features need to be in place, so, for

example, the decision needs to be voluntary; there has tobe informed choice; all options should be explained;there should be no penalties if people decline termina-

tions of pregnancy; there should be no overt coercion;there should be time for deliberation; and individualdecisions should be driven by personal values. However,

this research illustrates how complex each of theseaspects is and how difficult they can be to achieve inpractice. Some factors can be addressed more straight-forwardly than others. For example, shortage of time

was often cited by practitioners as a problem when itcame to explaining antenatal screening, and there needsto be a recognition that adequate time for discussion is

an essential part of the introduction of new reproductivetechnologies (Spencer, Spencer, Power, Moakes, &Nicolaides, 2000). Other factors, such as the differential

power relations operating within the clinical setting(Kerr & Cunningham-Burley, 2000) and the meaning ofinformed choice will be harder to resolve, as there are

many subtle elements which may influence these.However, it is essential that these issues are addressedas it is well recognised that there are already powerfulsocial, moral and economic forces which channel women

into accepting prenatal screening and testing as‘‘routine’’ (Lippman, 1991; Press & Browner, 1997).

Conclusion

Genetic counselling and information giving is movingout of specialised clinics and is rapidly being incorpo-rated into the routine work of a variety of health

practitioners, many of whom have not received, and areunlikely to receive, specialist counselling training. At the

same time, there is general debate about both themeanings and the appropriateness of nondirective

counselling techniques, and the issues to be discussedmay well become more complex as the Human GenomeProject develops. For example, Petersen (1999) argues

that increased surveillance and intervention may lead tocounsellors becoming more directive ‘‘behind thesmokescreen of the rhetoric of value-neutrality andnondirectiveness’’ (p. 263). It seems that professional

discussion and public debate around these and otherareas is vital, in order to help decide what arrangementsshould be put in place that would convincingly prevent

any slide towards ‘‘helping’’ individuals improve thequality of the population (Stacey, 1996).

Acknowledgements

We are very grateful to all those who participated inthis research, and to The Wellcome Trust BiomedicalEthics programme for funding the project ‘Cross

Currents in Genetics’ (no. 056009). We also thankmembers of our Advisory Group and Alan Petersen fortheir valuable comments on earlier drafts of the paper.

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Is nondirectiveness possible within the context of antenatal screening and testing?