GENETIC TESTINGVolume 5, Number 3, 2001Mary Ann Liebert, Inc.

Psychological Aspects of Genetic Counseling. XIV. Nondirectiveness and Counseling Skills

SEYMOUR KESSLER

ABSTRACT

The difficulties some professionals have in achieving nondirective goals is largely due to the inadequate andineffective application of basic counseling skills. The “new genetics,” with its emphasis on decision-making inassociation with genetic testing is among the most demanding forms of personal counseling, the effectivenessof which depends largely on the professional’s human experience and counseling abilities. Examples are givenshowing inadequacies in professional responses to clients in genetic counseling which, in turn, defeat theachievement of a nondirectiveness that is helpful to clients, supports their self-directedness, and leaves themmore psychologically prepared for quality decision making. Other models of counseling (e.g., shared decisionmaking) will not fare any better than the nondirective one unless counseling skills of professionals in geneticservices are upgraded in a significant way. Professional organizations need to give greater attention to thetraining and postgraduate supervision of all personnel involved in genetics services.

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INTRODUCTION

THE CONCEPTS OF DIRECTIVENESS AND NONDIRECTIVENESS

(ND) illustrate the potential mischief caused by applyingideas from one discipline to another. In its original context—psychotherapy—ND was a technique used to foster free asso-ciation whereas directiveness was one used to suppress such as-sociations. Transferred to the field of medical genetics andgenetic counseling, these concepts took on a different flavorand lost their connections to the clinical procedures that pro-vided their foundation. In their new home, directiveness andND gradually came to signify either an ill-defined associationwith(holding) advice-giving, a moral stance, or both. To con-fuse the situation further, the ND of genetic counseling wasmistaken for the ND associated with the ‘client-centered’ psy-chotherapeutic procedures developed by Carl Rogers. The lat-ter relied heavily on a reflecting-back technique as well as adogma that clients, when given sufficient rope, would not hangthemselves but would somehow find the inner courage, strength,and intelligence to make something positive out of their lives.In my opinion, Rogerian procedures were particularly ill-suitedfor genetic counseling, where client contact was frequently briefand where they had major needs for professional feed-back(e.g., diagnosis, risk figures), pertinent information, and activeassistance in sorting out complex decisional options.

With the growing complexities imposed by the so-called

“new genetics,” attention to the issue of giving advice began tobe reconsidered and genetic counselors found themselves floun-dering in their attempts to remain neutral in their counselingand at the same time satisfy the needs of clients, employers,ethicists, and all the other constituencies currently involved ingenetic services. A new look at the problems of directivenessand ND was clearly indicated. However, several obstacles toconceptual clarity stood in the way.

CONCEPTUAL PROBLEMS IN GENETIC COUNSELING

The first obstacle involves the definition of genetic coun-seling itself. So long as practitioners persisted in thinking ofgenetic counseling as a ‘process of communication’, theessence of what was involved on human and practical levelscould not be realized. To speak of a ‘process’ without first ad-dressing the fact that human beings were involved in a give-and-take (an interaction or relationship) that transcended ge-netics, medicine, and biology relegated discussions ofcounseling to the realm of abstraction. This, in turn, tended tonarrow the range of potential discourse to one representing theprofessional’s interests and world-view and subordinated thoseof the client. The result often was, and continues to be, a lackof professional understanding of what transpires in the hearts

Department of Pediatrics, University of California, San Francisco, San Francisco, CA 94143.

and minds of clients, a well-known chronic problem in the doc-tor–patient relationship.

A second stumbling block to progress was the lack of clear-cut working definitions of directiveness and ND. To say thatND is the absence of directiveness is not very informative; amore operational definition had long been needed despite thefact that some have argued that the terms directiveness and NDought to be abandoned. It is probably too late for that becausethese concepts are already deeply interwoven into the fabric ofgenetic counseling. With this in mind, Kessler (1997) proposeddefinitions that focused attention away from the issue of giv-ing or not giving advice to the question of how advice was givenand how counseling in general was conducted. The proposeddefinitions follow:

Directiveness refers to any procedure used in genetics ser-vices that uses one or more means to persuade a decision thatmight not otherwise have been made by the client. Methods us-ing deception, threat, and coercion are all forms of directive-ness; procedures that lack these elements are not directive, butnot necessarily nondirective. This definition reduced the scopeof what ought to be considered directiveness to an intuitivelysensible level. Thus, instances of advice-giving, directions, sug-gestions, and so on, as for example, those cited by Fraser (1979)and by Michie et al. (1997) were all diminished to more be-nign categories, saving true directiveness for those rare caseswhere techniques of persuasive coercion were used. But, thereare instances where “phenocopies” of directiveness occur. Forexample, when professionals lose their neutrality by overem-phasizing one out of several possible options or the negativeconsequences of certain options, leaving out possible positiveones, clients can understand this as “pressure” to make a deci-sion they may not otherwise have made. Also, some profes-sionals lose sight of the fact that self-interest, economic andotherwise, may be involved in offering certain advice and em-phasizing certain options. Some clients I have seen followinggenetic counseling reported that they felt that they had beensubjected to a “sell-job” rather than to objective information.Are these examples of directiveness? Possibly. But, even theseare less egregious than instances where there is a deliberate at-tempt to mislead, misinform, or coerce a client to make a givendecision. Much of the nondeliberate movement toward direc-tiveness arises because many counselors are not well trained intechniques of neutrality and, like most human beings, are blindto the extent to which their personal beliefs and ideas intrudeinto their counseling—what psychotherapists call, counter-transference.

ND refers to any procedure used in genetic services that pro-motes the autonomy and self-directedness of the client. Guidedby this definition, it is possible to imagine instances where giv-ing direct advice might be conceived as being nondirective, pro-vided that they lead to the promotion of the greater autonomyand self-directedness of the client. Conversely, it is also possi-ble to imagine situations where absolutely no advice or direc-tion is given but where the client emerges from the session feel-ing emotionally battered or worse; this is not ND, it is poorcounseling.

It needs to be kept in mind that no definition of ND will ap-ply to every single case; good professional judgment cannot andshould not be waived in a blind fostering of client autonomy.What if the professional believes the client is making a serious

error or a bad medical choice? For example, let us say a preg-nant woman insists on having a chorionic villus sampling (CVS)because having failed to take folic acid she is concerned abouthaving a fetus with spina bifida. Should the professional remainsilent or supportive of the client’s request, knowing that the testdoes not detect this disorder and that the woman may be in-flating the actual risk for spina bifida when folic acid is notused? Good sense suggests not.

A third obstacle to understanding ND was, and is, the ten-dency to conflate ND with directionless counseling. All coun-seling, including Rogerian therapy, has a direction; there aregoals to be achieved (transcripts and videotapes of Dr. Rogersworking with clients are available and I encourage the readerto study these to confirm my assertion). Directionless counsel-ing is an oxymoron. Should it occur, it is likely to result in asituation in which the needs of both clients and professionalsremain unsatisfied, even frustrated.

Nondirective genetic counseling has goals and direction (seethe definition above) and is decidedly an active strategy to as-sist clients to achieve personal health-related goals. Among thetasks of nondirective genetic counseling is (and has alwaysbeen) to help clients make personally relevant decisions by aid-ing them to think through the various options open to them,grapple with the meaning of various choices for themselves andtheir greater family in both the short and long term, identifyand attempt to defuse the obstacles, affective and otherwise, inthe way of their autonomous decision-making and so on. Theseactivities are not dissimilar to those advocated by Brunger andLippman (1995), Kenan and Smith (1995), and, more recently,Elwyn et al. (2000) for shared decision making (SDM), an ap-proach developed in primary health care, which, apparentlyevolved from the ‘tradition of beneficient paternalism’.

Elwyn et al. (2000) point out several similarities betweenSDM and ND: they both share a respect for client autonomy,they encourage a two-way interaction between client and pro-fessional, and both require an individualized approach to clientsrather than a one-size-fits-all type of counseling. So far as I cansee, none of the merits of SDM are incompatible with the goalsof nondirective genetic counseling. However, Elwyn et al.(2000) suggest, and I concur, that applying the SDM model maynot be as simple as it seems. It is unclear what “sharing” reallymeans in the genetic counseling situation. Certainly it does notmean: “You tell me your troubles and I’ll tell you mine.” Nor,when all is said and done, does the professional share in thefall-out of whatever “shared” decision is eventually reached(e.g., it is not the professional’s breast that may be prophylac-tically removed). Then again, how will professionals handle sit-uations where clients want to make a decision differing fromthe former’s counsel and opinions? Professionals ought to beprepared in advance for such a contingency and avoid gettinginto a conflict that might destroy the client’s need to see theprofessional as someone helpful rather than as an antagonist.But that takes skill, counseling experience, control over one’scountertransferential reactions, and a considerable amount ofhumbleness on the professional’s part.

A fourth stumbling block to understanding ND involves amisconception about the term neutrality. Nondirective coun-selors strive for neutrality, but, contrary to the approach thatsimply says, “You have two options, A and B,” period, no com-ment, they explore the clients’ understanding of each option,

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the specific ramifications it may have for them, and assist themto reach a decision they can live with consistent with their psy-chological functioning, maturity, and needs. It is in this sensethat they actively add to or sustain the client’s ability for self-directedness. The (passive) neutrality one frequently hears ingenetic counseling sessions, especially when the counselor hasminimal counseling skills, does not achieve the goal of ND and,often, leaves clients less autonomous and self-directed.

The point Elwyn and co-authors do not sufficiently under-score is that the attempt to help others reach personally relevant,emotionally-charged decisions—ones that clients regard as mat-ters of life or death—requires enormous human experience andcounseling skill. Formulating counseling only in terms of ad-vice-giving or sharing information begs the issue of how essen-tial professional sensitivity and understanding of the broader ex-istential, interpersonal and human issues truly are for clients. Inmy opinion, the greatest obstacle to quality genetic counselingis the inadequacy of counseling skills among professionals.

REALITY PROBLEMS IN GENETIC COUNSELING

Reading transcripts of actual genetic counseling sessions,listening to recordings of such sessions, and working with pro-fessionals in counseling skills workshops have led me to con-clude that some professionals have exceptionally fine skills,even though they may not realize it. Their judgment is usu-ally on target and they have an exquisite knack of saying the‘right’ thing at the right time. However, I am saddened to re-port that too many professionals in genetic services are poorlyprepared and lack even a modicum of basic counseling skills.Despite their best intentions, they do not respond to clients inways that leave the latter believing that they have been un-derstood. They sometimes convey little, if any, empathy toclients and have difficulty establishing a working relationshipwith them. They cannot deal effectively with affective eventsand emotional material. (Michie et al. (1999) point out thatmany genetic counselors react with discomfort or near terrorin the face of emotional issues. (Frankly speaking, this is in-excusable and may be prima facie evidence of inadequatecounseling skill.) They have difficulty hearing beyond the lit-eral level and thus do not even realize that clients are con-veying important personal information to them. They some-times say harmful, hurtful, or thoughtless things to clients.They lack the flexibility in shifting from an educative role toa counseling one. And, if that were not enough, there is apainful absence of words that convey simple decency towardclients and their personal struggles; words that ease their pain,provide a sense of hope, and help them find meaning in whatis happening to them (Kessler, 1999). No model of geneticcounseling can be effective if the professional’s counselingskills are lacking, poorly developed, or inadequately used.

Quality genetic counseling is marked by interactions inwhich counselor and clients make contact on a human level andleave the latter in a more cognitively and affectively integratedplace than when their contact began. This is not to say that aprofessional can remove the sting of “bad news” or relieve guiltor the pain of various choices. But, at least the client can havethe satisfaction of being understood in a compassionate way,

of leaving with words of decency and/or hope sounding in theirears. No professional in genetic services needs to be trained inpsychotherapeutic techniques to provide such quality counsel-ing; nonetheless, the acquisition of basic skills is a necessity.In the following excerpts of genetic counseling the inadequa-cies of skill are painfully apparent. The examples involve ses-sions of women at risk for breast cancer who, following thecounseling, decided to have prophylactic surgery. The genderof the counselors is unknown to me; they appear to have a the-oretical commitment to ND (i.e., neutrality) as a strategy. Thenumbers in parentheses refer to the line number on which thecomment that follows is based (C, client; P, professional).

Example 1

A woman has received a 40% risk for developing breast can-cer and reacts to the option of prophylactic surgery:

1. C: That is rather . . . drastic.2. P: Yes, it is drastic, but I just want you to know that the pos-

sibility exists.3. C: I could just say that I want to do this and then you would 4. fix it . . . or? Is that how it happens?5. P: Yes.6. C: Without you knowing more?7. P: Yes, it is up to the patient to consider, understand, and 8. perceive this risk. Often there is a strong anxiety behind one

not wanting to live with this risk.

Here is an interaction in which both C and P are strugglingto contain their emotions. P (2) begins to say something thatmight have turned out to be empathic, but immediately pullsback and distances him/herself from C’s strong reaction (1).He/she may feel responsible for having “upset” C; he/sheseems to be apologetic as if to say, “I was only trying to giveyou neutral information.” C (3) continues to struggle with herfeelings and tries to obtain fresh information and seems sur-prised (6) by P’s matter of fact reply (5). P (7) has lost com-plete contact with C; he/she is now talking about an abstract‘patient’ and a ‘one’ (8) rather than directly to C; there is noresponse to C’s reactions or concerns. Thus, step-by-step, theprofessional’s working relationship with the client dissipates.Also, P (7) loses an easy opportunity to turn the situationaround. C (6) has clearly said that she needs or wants to tellP something important about herself. Here was a chance forP to ask her, “What more do you want me to know?” Thiswould have expressed interest in C as a human being and in-formed her that he/she was listening.

What is P’s problem? P needs to develop two basic skills:first, the capacity to manage his/her emotional reactions bet-ter so that contact with clients can be maintained and, sec-ond, the capacity to say things that give clients the sense thatthey are understood. This may consist of developing greatercompassion for others and better listening and response skills.In other words, P has an opportunity to hone his/her skillsand make his/her counseling more effective and more human.But, this professional development does not happen on itsown; it requires having a teacher/supervisor/consultant togive input and then the willingness to practice newly acquiredskills.

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Example 2 (a continuation of the example above)

1. C: Well my risk . . . or my anxiety has come from my hav2. ing recently become a mother . . . I have two girls. Just that, 3. it is two girls . . . and since I was nine years old when my 4. own mother died, I am afraid that . . . imagine that I die from

them, too. I know how awful it is to lose your mother whenyou are a child, so that’s where my anxiety started.

5. P: Yes, that is how it has been for others as well.

C needs to tell her story so that P has a better understandingof who he/she is dealing with. She reveals (1–4) her fear of re-peating her own childhood abandonment experience in aban-doning her own daughters. An old wound has been reopenedand she is emotionally hyperaroused; she has moved quickly inher thought processes from being a (currently) healthy womanto being dead and buried. She is in a vulnerable place and whatP will say to her can have a special significance if it is on themark. P’s task is actually simple; he/she needs to move closerpsychologically so that C is left feeling that she is understoodand not alone “stuck” in her abandonment fears. C is asking forhelp to contain her anxiety of anticipated abandonment of herown daughters, an anxiety that would interfere with her mak-ing a considered decision about the options open to her. Thus,P needs to respond to her as a living, breathing, frightened pres-ence, not as a subject or abstract entity.

P’s response (5) is weak, but not disastrous. He/she says whatyou are experiencing is not unique; others have felt the wayyou feel. What makes the response weak is the lack of ac-knowledgment of the specific woman he/she is facing, of herpersonal experience and the implication it carried that C shouldfind comfort in the fact that others suffer too; in that sense Pdismisses her angst and personal history. Also, conspicuouslyabsent is a “gift of decency”: words of kindness that acknowl-edge how thoughtful and feeling a mother she is to be so con-cerned about the welfare of her children; words that instil inher a sense that another recognizes her painful loss, her strug-gle to recover from the pain of the loss; her strengths andcourage; thoughts that would bind her anxiety; words that giveher hope that the professional will stand by her as an ally ratherthan as a salesperson selling a course of action; words that ad-dress her inner being and illuminate the path ahead of her.

Example 3

The professional has just presented two options: regular sur-veillance or prophylactic surgery.

1. C: Certainly . . . do I have to choose that myself?2. P: No . . . yes, yes, in some way I have to say yes because 3. I cannot choose for you, nobody can choose for you, we sim4. ply give you the information, this is the risk you run, this big 5. risk of developing ovarian cancer, one can . . . inform you

about the risks and the advantages with an operation and thenyou have to make the decision yourself.

6. C: Yes, of course.

P (2) seems flustered and seems to assume that C is askinghim/her to make the choice for her. Could it be that C (1) isasking something very different, something along the line of,

“Will you help me make that choice?” P (2) might have askedin return, “Should someone else make the choice?” as a way ofobtaining greater clarity on C’s question or said, “No, I will domy best to help you make that choice.” Instead, P (3) becomesdefensive (‘we simply give information’) and unwittingly losesneutrality in overemphasizing the “big” risk (3–4) and mini-mizing the possible personal impact of the surgery (5). Sachs(1999) reports that C felt she had been pressured to have sur-gery by P.

This professional shares some of the same difficulties as theone in Example 1. He/she seems to need assistance to learn howto phrase his/her thoughts in a more productively neutral man-ner. In addition, by referring to him/herself as ‘we’ (3) and ‘one’(4) this professional dismisses the relational aspects of the in-teraction with the client and keeps the client at arm’s lengthjust at a moment when greater closeness is needed. In beingdistant, the professional is disengaged and thus would have dif-ficulty “reading” the client’s feelings or understanding them ac-curately even if he/she could.

DISCUSSION

Although the excerpts above are brief, they are very reveal-ing of the kinds of common inadequacies in the counseling skillsof genetic counselors. Prominent is the commitment of the pro-fessionals to “neutrality,” but an absence of skill to achieve ND,in the sense of promoting the clients’ autonomy and self-di-rectedness. I strongly suggest that these inadequacies permeatethe field of genetic counseling.

Fortunately, the situation is not beyond repair. First, thereneeds to be a recognition that a problem exists in the field, thatis, that the counseling skills of genetic counselors require sig-nificant upgrading. Heretofore, the profession has tended to takethe easy path by shifting blame elsewhere when problems arise.The model of ND has been a convenient target for criticismwhen professionals are in a quandary, as, for example, whenthey have difficulty dealing with such direct questions as, “Whatwould you do in my place?” Also the client has inevitably beenheld responsible for failures in acquiring information; few, ifany, within the profession suggest the possibility that profes-sionals may not have the pedagogical skills to convey infor-mation effectively. When professionals in the field face the factthat their pedagogical and counseling skills are not up to snuff,real changes in the quality of professional work may occur.

Second, training in counseling skills should be upgraded; ac-crediting agencies need to raise the bar in this regard. Mini-mum standards of training in counseling skills should be es-tablished and given as much privilege as that accorded toknowledge of statistics or genetic principles. Methods to eval-uate the skills (an observed practicum, for example) of indi-vidual professionals need to be developed; knowledge of the-ory is an insufficient criterion on which to certify competencein counseling skills.

Third, all professionals in the field require continuing edu-cation in counseling skills. These should be mandatory or, atleast, as mandatory as requirements for upgrading one’s com-petency in medical and genetics knowledge. Workshops inwhich experienced “master” counselors, regardless of what de-

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gree follows their name, could demonstrate specific skills andhelp individual attendees practice and perfect their counselingwork, especially in self-defined areas of difficulty. Such work-shops have already been offered with considerable success bothin the United States and abroad (Kessler, 2000) to audiences ofsenior professionals in genetic services.

Fourth, all professionals should be required to have a mini-mum number of hours of ongoing postgraduate counseling su-pervision; 1000–1500 hrs would not be unreasonable. Despitemany advances in the field of medical genetics, attention tomany of the basic issues of professional competency in the face-to-face interaction with clients have not been dealt with exceptin the most superficial way. Standards of supervision, whichhave been made part of every other field of personal counsel-ing, have yet to be developed by our profession. It is as if theprofession were guided by the delusion that a person’s knowl-edge of genetics, biological processes, and statistics, in combi-nation with a medical or postgraduate degree, automaticallyconfers the ability to communicate with others, help them reachautonomous decisions and, whenever possible, ease and helpthem cope with their emotional distress—the tasks confrontingall the counselors in our field. These tasks are based on skillsthat are not always easy to acquire and, once acquired, requireconstant honing and upgrading; supervision is the pathway toaccomplish this. In this regard, the wider use of audiotapes andvideotapes in counseling sessions and their use as a basis forsupervisory work is also a long-overdue development in thefield. Aural or visual records of what was said and heard is areality check in a situation in which mishearing and misread-ing are common occurrences.

I wish to reiterate that the situation regarding the ineffec-tive counseling skills of genetic counselors is not a hopelessone. It can be remedied. There are a sufficient number of med-ical geneticists and genetic counselors in the field with ex-ceptional human and counseling skills who can guide and teachothers how to make their counseling more competent. The ini-tial step in that direction is the broader recognition that thisstep is necessary both for the benefit of the field and for theclients we serve.

ACKNOWLEDGMENTS

The author wishes to thank Dr. Lisbeth Sachs for grantingpermission to use excerpts from her published transcripts andRobert Resta for his counsel and helpful suggestions.

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ELWYN, G., GRAY, J., and CLARKE, A. (2000). Shared decisionmaking and non-directiveness in genetic counselling. J. Med. Genet.37, 135–138.

FRASER, F.C. (1979). Degree of directiveness. In Genetic Counsel-ing. H.A. Lubs and F. de la Cruz (eds.). (Raven Press, New York)pp. 579–581.

KENEN, R., and SMITH, A.C.M. (1995). Genetic counseling for thenext 25 years: models for the future. J. Genet. Counsel. 4, 115–124.

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KESSLER, S. (1999). Psychological aspects of genetic counseling.XIII. Empathy and decency. J. Genet. Counsel. 8, 333–343.

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MICHIE, S., BRON, F., BOBROW, M., and MARTEAU, T.M. (1997).Nondirectiveness in genetic counseling: an empirical study. Am. J.Hum. Genet. 60, 40–47.

MICHIE, S., SMITH, J.A., HEAVERSEDGE, J., and READ, S. (1999).Genetic counseling: Clinical geneticists’ views. J. Genet. Counsel.8, 275–288.

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Address reprint requests to:Dr. Seymour Kessler

P.O. Box 7702Berkeley, CA 94707

E-mail: seykessler@aol.com

Received for publication December 12, 2000; accepted June 20,2001.

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