GENETIC TESTING

Volume 5, Number 3, 2001

Mary 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 and
ineffective application of basic counseling skills. The “new genetics,” with its emphasis on decision-making in
association with genetic testing is among the most demanding forms of personal counseling, the effectiveness
of which depends largely on the professional’s human experience and counseling abilities. Examples are given
showing inadequacies in professional responses to clients in genetic counseling which, in turn, defeat the
achievement of a nondirectiveness that is helpful to clients, supports their self-directedness, and leaves them
more psychologically prepared for quality decision making. Other models of counseling (e.g., shared decision
making) will not fare any better than the nondirective one unless counseling skills of professionals in genetic
services are upgraded in a significant way. Professional organizations need to give greater attention to the
training and postgraduate supervision of all personnel involved in genetics services.

INTRODUCTION “new genetics,” attention to the issue of giving advice began to

be reconsidered and genetic counselors found themselves floun-

T HE CONCEPTS OF DIRECTIVE NESS AND NONDIRECT IVENESS

(ND) illustrate the potential mischief caused by applying
ideas 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 and
genetic counseling, these concepts took on a different flavor
and lost their connections to the clinical procedures that pro-
vided their foundation. In their new home, directiveness and
ND gradually came to signify either an ill-defined association
with(holding) advice-giving, a moral stance, or both. To con-
fuse the situation further, the ND of genetic counseling was
mistaken 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 a
dogma that clients, when given sufficient rope, would not hang
themselves 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-suited
for genetic counseling, where client contact was frequently brief
and where they had major needs for professional feed-back
(e.g., diagnosis, risk figures), pertinent information, and active
assistance in sorting out complex decisional options.
With the growing complexities imposed by the so-called
dering in their attempts to remain neutral in their counseling
and at the same time satisfy the needs of clients, employers,
ethicists, and all the other constituencies currently involved in
genetic services. A new look at the problems of directiveness
and ND was clearly indicated. However, several obstacles to
conceptual 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 of
genetic counseling as a ‘process of communication’, the
essence of what was involved on human and practical levels
could 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 of
counseling to the realm of abstraction. This, in turn, tended to
narrow the range of potential discourse to one representing the
professional’s interests and world-view and subordinated those
of the client. The result often was, and continues to be, a lack
of professional understanding of what transpires in the hearts

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

187
188
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 that
ND is the absence of directiveness is not very informative; a
more operational definition had long been needed despite the
fact that some have argued that the terms directiveness and ND
ought to be abandoned. It is probably too late for that because
these concepts are already deeply interwoven into the fabric of
genetic counseling. With this in mind, Kessler (1997) proposed
definitions that focused attention away from the issue of giv-
ing or not giving advice to the question of how advice was given
and how counseling in general was conducted. The proposed
definitions follow:
Directiveness refers to any procedure used in genetics ser-
vices that uses one or more means to persuade a decision that
might 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, but
not necessarily nondirective. This definition reduced the scope
of what ought to be considered directiveness to an intuitively
sensible 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 cases
where techniques of persuasive coercion were used. But, there
are instances where “phenocopies” of directiveness occur. For
example, when professionals lose their neutrality by overem-
phasizing one out of several possible options or the negative
consequences of certain options, leaving out possible positive
ones, 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 and
otherwise, may be involved in offering certain advice and em-
phasizing certain options. Some clients I have seen following
genetic counseling reported that they felt that they had been
subjected to a “sell-job” rather than to objective information.
Are these examples of directiveness? Possibly. But, even these
are less egregious than instances where there is a deliberate at-
tempt to mislead, misinform, or coerce a client to make a given
decision. Much of the nondeliberate movement toward direc-
tiveness arises because many counselors are not well trained in
techniques of neutrality and, like most human beings, are blind
to the extent to which their personal beliefs and ideas intrude
into 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. Guided
by 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 autonomy
and 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 poor
counseling.
It needs to be kept in mind that no definition of ND will ap-
ply to every single case; good professional judgment cannot and
should not be waived in a blind fostering of client autonomy.
What if the professional believes the client is making a serious
KESSLER
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 about
having a fetus with spina bifida. Should the professional remain
silent or supportive of the client’s request, knowing that the test
does not detect this disorder and that the woman may be in-
flating the actual risk for spina bifida when folic acid is not
used? 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 are
goals to be achieved (transcripts and videotapes of Dr. Rogers
working with clients are available and I encourage the reader
to study these to confirm my assertion). Directionless counsel-
ing is an oxymoron. Should it occur, it is likely to result in a
situation in which the needs of both clients and professionals
remain unsatisfied, even frustrated.
Nondirective genetic counseling has goals and direction (see
the definition above) and is decidedly an active strategy to as-
sist clients to achieve personal health-related goals. Among the
tasks of nondirective genetic counseling is (and has always
been) 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 and
their greater family in both the short and long term, identify
and attempt to defuse the obstacles, affective and otherwise, in
the way of their autonomous decision-making and so on. These
activities are not dissimilar to those advocated by Brunger and
Lippman (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, apparently
evolved from the ‘tradition of beneficient paternalism’.
Elwyn et al. (2000) point out several similarities between
SDM 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 clients
rather than a one-size-fits-all type of counseling. So far as I can
see, none of the merits of SDM are incompatible with the goals
of nondirective genetic counseling. However, Elwyn et al.
(2000) suggest, and I concur, that applying the SDM model may
not be as simple as it seems. It is unclear what “sharing” really
means in the genetic counseling situation. Certainly it does not
mean: “You tell me your troubles and I’ll tell you mine.” Nor,
when all is said and done, does the professional share in the
fall-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 from
the former’s counsel and opinions? Professionals ought to be
prepared in advance for such a contingency and avoid getting
into a conflict that might destroy the client’s need to see the
professional as someone helpful rather than as an antagonist.
But that takes skill, counseling experience, control over one’s
countertransferential reactions, and a considerable amount of
humbleness on the professional’s part.
A fourth stumbling block to understanding ND involves a
misconception about the term neutrality. Nondirective coun-
selors strive for neutrality, but, contrary to the approach that
simply says, “You have two options, A and B,” period, no com-
ment, they explore the clients’ understanding of each option,
NONDIRECTIVENESS IN GENETIC COUNSELING
the specific ramifications it may have for them, and assist them
to reach a decision they can live with consistent with their psy-
chological functioning, maturity, and needs. It is in this sense
that they actively add to or sustain the client’s ability for self-
directedness. The (passive) neutrality one frequently hears in
genetic counseling sessions, especially when the counselor has
minimal 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 and
counseling 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. In
my opinion, the greatest obstacle to quality genetic counseling
is 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 poorly
prepared and lack even a modicum of basic counseling skills.
Despite their best intentions, they do not respond to clients in
ways that leave the latter believing that they have been un-
derstood. They sometimes convey little, if any, empathy to
clients and have difficulty establishing a working relationship
with them. They cannot deal effectively with affective events
and emotional material. (Michie et al. (1999) point out that
many genetic counselors react with discomfort or near terror
in the face of emotional issues. (Frankly speaking, this is in-
excusable and may be prima facie evidence of inadequate
counseling 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 to
a counseling one. And, if that were not enough, there is a
painful absence of words that convey simple decency toward
clients and their personal struggles; words that ease their pain,
provide a sense of hope, and help them find meaning in what
is happening to them (Kessler, 1999). No model of genetic
counseling can be effective if the professional’s counseling
skills are lacking, poorly developed, or inadequately used.
Quality genetic counseling is marked by interactions in
which counselor and clients make contact on a human level and
leave the latter in a more cognitively and affectively integrated
place than when their contact began. This is not to say that a
professional can remove the sting of “bad news” or relieve guilt
or the pain of various choices. But, at least the client can have
the satisfaction of being understood in a compassionate way,
189
of leaving with words of decency and/or hope sounding in their
ears. No professional in genetic services needs to be trained in
psychotherapeutic 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 the
counseling, decided to have prophylactic surgery. The gender
of the counselors is unknown to me; they appear to have a the-
oretical commitment to ND (i.e., neutrality) as a strategy. The
numbers in parentheses refer to the line number on which the
comment 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 struggling
to contain their emotions. P (2) begins to say something that
might have turned out to be empathic, but immediately pulls
back and distances him/herself from C’s strong reaction (1).
He/she may feel responsible for having “upset” C; he/she
seems to be apologetic as if to say, “I was only trying to give
you neutral information.” C (3) continues to struggle with her
feelings 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 no
response to C’s reactions or concerns. Thus, step-by-step, the
professional’s working relationship with the client dissipates.
Also, P (7) loses an easy opportunity to turn the situation
around. C (6) has clearly said that she needs or wants to tell
P something important about herself. Here was a chance for
P to ask her, “What more do you want me to know?” This
would 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 that
they are understood. This may consist of developing greater
compassion for others and better listening and response skills.
In other words, P has an opportunity to hone his/her skills
and make his/her counseling more effective and more human.
But, this professional development does not happen on its
own; it requires having a teacher/supervisor/consultant to
give input and then the willingness to practice newly acquired
skills.
190 KESSLER

Example 2 (a continuation of the example above) “Will you help me make that choice?” P (2) might have asked
in return, “Should someone else make the choice?” as a way of
1. C: Well my risk . . . or my anxiety has come from my hav
obtaining greater clarity on C’s question or said, “No, I will do
2. ing recently become a mother . . . I have two girls. Just that,
my best to help you make that choice.” Instead, P (3) becomes
3. it is two girls . . . and since I was nine years old when my
defensive (‘we simply give information’) and unwittingly loses
4. own mother died, I am afraid that . . . imagine that I die from
neutrality in overemphasizing the “big” risk (3–4) and mini-
them, too. I know how awful it is to lose your mother when
mizing the possible personal impact of the surgery (5). Sachs
you are a child, so that’s where my anxiety started.
(1999) reports that C felt she had been pressured to have sur-
5. P: Yes, that is how it has been for others as well.
gery by P.
This professional shares some of the same difficulties as the
C needs to tell her story so that P has a better understanding
one in Example 1. He/she seems to need assistance to learn how
of who he/she is dealing with. She reveals (1–4) her fear of re-
to phrase his/her thoughts in a more productively neutral man-
peating her own childhood abandonment experience in aban-
ner. In addition, by referring to him/herself as ‘we’ (3) and ‘one’
doning her own daughters. An old wound has been reopened
(4) this professional dismisses the relational aspects of the in-
and she is emotionally hyperaroused; she has moved quickly in
teraction with the client and keeps the client at arm’s length
her thought processes from being a (currently) healthy woman
just at a moment when greater closeness is needed. In being
to being dead and buried. She is in a vulnerable place and what
distant, the professional is disengaged and thus would have dif-
P will say to her can have a special significance if it is on the
ficulty “reading” the client’s feelings or understanding them ac-
mark. P’s task is actually simple; he/she needs to move closer
curately even if he/she could.
psychologically so that C is left feeling that she is understood
and not alone “stuck” in her abandonment fears. C is asking for
help to contain her anxiety of anticipated abandonment of her
DISCUSSION
own daughters, an anxiety that would interfere with her mak-
ing a considered decision about the options open to her. Thus,
Although the excerpts above are brief, they are very reveal-
P needs to respond to her as a living, breathing, frightened pres-
ing of the kinds of common inadequacies in the counseling skills
ence, not as a subject or abstract entity.
of genetic counselors. Prominent is the commitment of the pro-
P’s response (5) is weak, but not disastrous. He/she says what
fessionals to “neutrality,” but an absence of skill to achieve ND,
you are experiencing is not unique; others have felt the way
in the sense of promoting the clients’ autonomy and self-di-
you feel. What makes the response weak is the lack of ac-
rectedness. I strongly suggest that these inadequacies permeate
knowledgment of the specific woman he/she is facing, of her
the field of genetic counseling.
personal experience and the implication it carried that C should
Fortunately, the situation is not beyond repair. First, there
find comfort in the fact that others suffer too; in that sense P
needs to be a recognition that a problem exists in the field, that
dismisses her angst and personal history. Also, conspicuously
is, that the counseling skills of genetic counselors require sig-
absent is a “gift of decency”: words of kindness that acknowl-
nificant upgrading. Heretofore, the profession has tended to take
edge how thoughtful and feeling a mother she is to be so con-
the easy path by shifting blame elsewhere when problems arise.
cerned about the welfare of her children; words that instil in
The model of ND has been a convenient target for criticism
her a sense that another recognizes her painful loss, her strug-
when professionals are in a quandary, as, for example, when
gle to recover from the pain of the loss; her strengths and
they have difficulty dealing with such direct questions as, “What
courage; thoughts that would bind her anxiety; words that give
would you do in my place?” Also the client has inevitably been
her hope that the professional will stand by her as an ally rather
held responsible for failures in acquiring information; few, if
than as a salesperson selling a course of action; words that ad-
any, within the profession suggest the possibility that profes-
dress her inner being and illuminate the path ahead of her.
sionals may not have the pedagogical skills to convey infor-
mation effectively. When professionals in the field face the fact
Example 3
that their pedagogical and counseling skills are not up to snuff,
The professional has just presented two options: regular sur- real changes in the quality of professional work may occur.
veillance or prophylactic surgery. Second, training in counseling skills should be upgraded; ac-
crediting agencies need to raise the bar in this regard. Mini-
1. C: Certainly . . . do I have to choose that myself? mum standards of training in counseling skills should be es-
2. P: No . . . yes, yes, in some way I have to say yes because tablished and given as much privilege as that accorded to
3. I cannot choose for you, nobody can choose for you, we sim knowledge of statistics or genetic principles. Methods to eval-
4. ply give you the information, this is the risk you run, this big uate the skills (an observed practicum, for example) of indi-
5. risk of developing ovarian cancer, one can . . . inform you vidual professionals need to be developed; knowledge of the-
about the risks and the advantages with an operation and then ory is an insufficient criterion on which to certify competence
you have to make the decision yourself. in counseling skills.
6. C: Yes, of course. Third, all professionals in the field require continuing edu-
cation in counseling skills. These should be mandatory or, at
P (2) seems flustered and seems to assume that C is asking least, as mandatory as requirements for upgrading one’s com-
him/her to make the choice for her. Could it be that C (1) is petency in medical and genetics knowledge. Workshops in
asking something very different, something along the line of, which experienced “master” counselors, regardless of what de-
NONDIRECTIVENESS IN GENETIC COUNSELING
gree follows their name, could demonstrate specific skills and
help individual attendees practice and perfect their counseling
work, especially in self-defined areas of difficulty. Such work-
shops have already been offered with considerable success both
in the United States and abroad (Kessler, 2000) to audiences of
senior 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. Despite
many advances in the field of medical genetics, attention to
many of the basic issues of professional competency in the face-
to-face interaction with clients have not been dealt with except
in the most superficial way. Standards of supervision, which
have been made part of every other field of personal counsel-
ing, have yet to be developed by our profession. It is as if the
profession 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, automatically
confers the ability to communicate with others, help them reach
autonomous decisions and, whenever possible, ease and help
them cope with their emotional distress—the tasks confronting
all the counselors in our field. These tasks are based on skills
that are not always easy to acquire and, once acquired, require
constant honing and upgrading; supervision is the pathway to
accomplish this. In this regard, the wider use of audiotapes and
videotapes in counseling sessions and their use as a basis for
supervisory work is also a long-overdue development in the
field. Aural or visual records of what was said and heard is a
reality 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 hopeless
one. 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 teach
others how to make their counseling more competent. The ini-
tial step in that direction is the broader recognition that this
step is necessary both for the benefit of the field and for the
clients we serve.
191
ACKNOWLEDGMENTS
The author wishes to thank Dr. Lisbeth Sachs for granting
permission to use excerpts from her published transcripts and
Robert Resta for his counsel and helpful suggestions.
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Address reprint requests to:
Dr. Seymour Kessler
P.O. Box 7702
Berkeley, CA 94707
E-mail: seykessler@aol.com
Received for publication December 12, 2000; accepted June 20,
2001.