Professional Documents
Culture Documents
Genetic counseling is the process of communicating ies is addressed by cases which focus exclusively on
genetic information to patients or clients who will use advice given in the prenatal situation. We cannot as-
it to make health care decisions. Initially conducted by sume responses would be the same if geneticists and
M.D. and Ph.D. geneticists, counseling today is often genetic counselors were presented with cases concern-
provided by master’s-level genetic counselors. Nondi- ing testing for genetic conditions in adults. It is impor-
rectiveness is, and has long been, an explicit norm for tant to clarify the norms that actually guide practice,
genetic counselors [Marks, 1993] and a strategy that as genetic counseling services continue to evolve.
genetic counselors have adopted to promote autono- Therefore, we asked genetic counselors about the im-
mous decision making [Fine, 1993]. The Code of Ethics portance of nondirectiveness in their work.
for Genetic Counselors states:
The counselor-client relationship is based on val- METHODS
ues of care and respect for the client’s autonomy, Survey
individuality, welfare, and freedom. The primary We surveyed genetic counselors between April and
concern of genetic counselors is the interests of June, 1993, to better understand how they view the
their clients. Counselors strive to . . . Enable their role of nondirectiveness in practice. Respondents were
clients to make informed independent decisions, asked to indicate the extent to which nondirectiveness
free of coercion, by providing or illuminating the is important in their clinical practice, how they define
necessary facts and clarifying the alternatives and directiveness, and under what conditions they believe
anticipated consequences, . . . [or] refer clients to they are directive. Additional survey questions solic-
other competent professionals who can, when they ited information about respondent demographics; focus
are unable to support the clients [National Society and setting of practice; educational needs; and time
of Genetic Counselors, 1991]. spent giving information, listening, and providing sup-
When Wertz and Fletcher [1989] conducted a 19- port during genetic counseling sessions. Responses to
nation survey of M.D. and Ph.D. geneticists they found survey questions are presented below.
a high level of endorsement for nondirectiveness. In 3 Sample
cases which focused on counseling approaches in a situ-
ation where the fetus was affected by a condition A questionnaire was sent to 781 full members of the
viewed as ‘‘low burden,’’ there was 75% or greater con- National Society of Genetic Counselors. Two follow-up
sensus in 75% of the nations that counseling should be postcards were sent as a reminder to return the survey.
nondirective. In regard to a possible small neural tube Any identifiers were removed from the survey prior to
defect, 98% of respondents would disclose the informa- scoring for results. Three hundred eighty-three or
tion and 87% would counsel nondirectively, while 5% 49.0% of practicing counselors returned completed sur-
would advise carrying to term and 8% would advise veys. Sample demographics are reported in Table I. We
abortion. compared all demographic information in Table I with
Although nondirectiveness is the most universally that obtained by Boldt [1994] in a professional survey
espoused norm in genetic counseling literature, some of members of the National Society of Genetic Counsel-
data suggest that it is not always followed in actual ors. Although not representative of the general U.S.
practice [Brunger and Lippman, 1995; Yarborough et population, the respondents were representative of the
al., 1989]. For example, when genetic counselor re- membership of the NSGC.
sponses were compared to those of geneticists using
Analyses
scenarios similar to those used by Fletcher and Wertz,
their responses generally corresponded. But in some Two independent judges (one doctoral level psycholo-
instances which addressed disclosure of information, gist and one medical doctor/lawyer) were trained in the
counselors more consistently favored patient autonomy same system for coding the open-ended responses for
and confidentiality [Pencarinha et al., 1992]. definitions of nondirectiveness and reasons for direc-
In a more recent survey of geneticists based on the tiveness. Thirty response sets were randomly selected
same case studies, Marteau et al. [1994] showed that in to calculate interrater agreement using the kappa sta-
the United Kingdom, Germany, and Portugal there is tistic as recommended by Tinsley and Weiss [1975] and
broad agreement on the goals of genetic counseling Hill [1985]. The kappa statistic for definition of nondi-
among geneticists, but not all consider nondirective rectiveness was .82; while the kappa for reasons for
counseling appropriate in all situations. They found directiveness was .98. The relationship between each
that on a scale of nondirectiveness, German and Por- category and respondent demographics was tested for
tuguese geneticists were significantly more directive significance using a Chi-square analysis of contingency
than U.K. geneticists. In prenatal testing, German ge- tables.
neticists were more likely to encourage continuing
pregnancies, while Portuguese geneticists were more RESULTS
likely to encourage termination of affected pregnan- Counselor Activities During Genetic
cies. Responses to cases which described varying ge- Counseling Sessions
netic conditions indicated no strong agreement on the
proper approach to a specific condition [Marteau et al., Respondents were asked ‘‘What percent of the time
1994]. do you spend in each of the following activities during
It is noteworthy that nondirectiveness in these stud- a genetic counseling session: provide support, listen,
174 Bartels et al.
give information, and ‘other’?’’ As outlined in Table II, TABLE III. Directiveness vs. Nondirectiveness
counselors spend more than half of their time providing Importance of nondirectiveness in respondents’ genetic
information to clients, greater than 40% listening and counseling practice (n 4 371)
giving support, and only a small percentage of time
Not at all important Extremely important
engaged in ‘other’ activities.
When asked whether ‘‘counseling’’ is an appropriate 1 2 3 4 5
term for the services they provide, the majority of coun- 0% 0.8% 3.2% 38.5% 57.4%
selors answered affirmatively. Percent of counselors who are ever directive in their genetic
counseling (n 4 349)
Descriptions of Nondirectiveness Yes 72.2%
No 27.8%
Counselors were asked, ‘‘In your own words, please
describe ‘nondirective’ as concretely as you can.’’ The
majority of responses fell into three major categories.
Present both (all) sides. Almost 63% of the and nonverbal responses are nondirective. For ex-
sample indicated that nondirectiveness means giving ample, ‘‘I am never purposely directive. However, I am
adequate information about all options and supporting sure that at times a patient may not perceive me as
all options equally to avoid influencing the decision. such based on my posture, voice, etc. I am not sure
Allow client values to determine the outcome. anyone can really remain nondirective.’’
Forty seven percent of the respondents indicated that The next most frequent responses, each mentioned
they respect client values and many commented that by more than 5% of the respondents, included the fol-
they, ‘‘don’t let personal opinions/values influence the lowing: to recommend genetic testing (15.4%); client is
client’s decision.’’ They also indicated that counselor unable to understand (9.3%); if a better choice is clear
support should not be conditional in relation to client (8.6%); to recommend medical treatment (8.6%); and
decisions or values. client cannot decide (6.5%). Examples of illustrative
Be objective. To be objective was mentioned by respondent comments follow.
36.8% of the respondents and was defined as present-
ing information in an unbiased way, or letting the pa- To Recommend Testing
tient/couple decide.
‘‘I counsel women from high-risk cancer families–I
Examples of descriptors provided by respondents to
am not neutral about offering guidelines for screening.
define nondirectiveness include: client-centered, i.e.,
I feel this type of counseling is substantively different
meaning reflecting the client’s perspective; empathic;
from prenatal reproductive counseling.’’
and nonjudgmental. These responses very closely re-
‘‘In pediatric genetics, we must sometimes refer for
semble those included in Carl Roger’s [1951] nondirec-
testing that could identify further problems once a con-
tive, person-centered approach to counseling.
Directiveness Versus Nondirectiveness TABLE IV. Reasons Given by Sample of Genetic Counselors
for ‘‘Directiveness’’*
Respondents were asked to rank on a five-point
Likert scale (14not important at all; 54very impor- Frequency %
tant), ‘‘How important is nondirectiveness in your clini- Nonverbally/order of information/word
cal practice?’’ As shown in Table III, the majority of choice 65 23.3
respondents endorsed a rating of five or four where five To recommend testing/screening 43 15.4
indicated ‘‘extremely important.’’ None of the counsel- Client is unable to understand 26 9.3
ors endorsed ‘‘not important at all.’’ Even though non- If better choice is clear/patient choice is
not best one 24 8.6
directiveness appears to be very important, 72% stated To recommend medical care/counseling 24 8.6
that they are sometimes directive in their sessions. Client has difficulty deciding 18 6.5
Respondents were invited to ‘‘Please comment,’’ and Prompted by drug/alcohol/teratogen use 14 5.0
279 counselors wrote extensive comments about their To support/backup patient’s decision 14 5.0
directiveness, often in an apologetic tone. Their re- When asked what I would do/what I
sponses were categorized into reasons for directiveness think 13 4.7
To encourage patient/couple to take time
and are summarized in Table IV. The most frequently to decide 11 3.9
cited reason, which was indicated by 23.3% of respon- With low functioning clients (e.g.,
dents, focused on the difficulty of ensuring that verbal mentally retarded) 11 3.9
In extreme or critical cases/patient’s life
in danger 8 2.9
TABLE II. Counselor Activities During Genetic When it is culturally/ethnically
Counseling Sessions appropriate 6 2.2
When pressured or inappropriate referral
How time is spent during a genetic counseling session
by M.D. 6 2.2
(n 4 355)
With very young mothers 6 2.2
Providing support 16.8% Other 9 3.2
Listening 24.5% No comment given 104 27.2
Giving information 54.1%
Other 5.8% *Percentages add up to more than 100% due to multiple responses. n 4
279.
176 Bartels et al.
dition has been identified (e.g., renal scan to find tionally be directive is if a child was not getting the
Wilms’ tumor in Beckwith-Wiedemann patients).’’ appropriate care or treatment due to parental denial
‘‘I am directive in reference to carrier screening. In and all else failed.’’
all counseling sessions, I am sure I am directive to a
degree in terms of the length of time I spend on a topic Client Cannot Decide
and how I present information.’’ ‘‘Occasionally I am directive with clients unable to
‘‘Prenatal clinic patients who are under 18 years of make choices for various reasons (e.g., being paralyzed
age with abnormal ultrasound findings incompatible by indecision) when they clearly indicate a preferred
with life . . . We encourage them to consider the option choice.’’
of TOP seriously.’’ ‘‘I talk to people from many different ethnic groups
Client Is Unable to Understand and as much as I try to let them make their own deci-
sions, some expect me to tell them what to do.’’
‘‘I try not to be, but in the cases in which patients are ‘‘There are times when clients have difficulty making
very low functioning (i.e., mentally retarded) I find my- choices due to language/cultural barriers (e.g., husband
self sometimes suggesting the option which I feel may making decisions for a wife without considering her
be most appropriate.’’ feelings).’’
‘‘We deal with a lower socioeconomic class that might ‘‘Sometimes a gentle push is necessary for clients
not understand the consequences of their actions or who are paralyzed by fear–rational or irrational–and
need some guidance in making decisions.’’ stuck, unable to come to any decision whatsoever. The
‘‘Sometimes it is very difficult to be nondirective ‘push’ is used not to force them into decision making,
when a patient presents at 28 weeks and does not but to enable a new focus putting fear into perspective.’’
speak English well. Patient does not seem to under- Although several counselors mentioned that refer-
stand information . . .’’ ring physicians were sometimes unhappy with their
‘‘A patient couldn’t decide about a coagulation test nondirective stance, they indicated that they are tena-
for hemophilia A. I told her to have the test because I cious in their attempts to be nondirective.
didn’t feel she understood the situation.’’ Relationships between counselor demographics and
‘‘Rarely–in situations where client immaturity, cul- their responses to ‘‘are you ever directive’’ and ‘‘impor-
tural practice, educational background, or comprehen- tance of nondirectiveness’’ were examined by Chi-
sion renders decision-making seemingly impossible.’’ square analyses. None of these analyses indicated a
significant relationship between counselor responses
If a Better Choice Is Clear and age, gender, ethnicity, education, hours of psycho-
‘‘Sometimes if a patient is choosing a procedure that social counseling coursework, years of genetic counsel-
is clearly not the best choice (e.g., CVS in view of family ing experience, number of counseling sessions con-
history of NTD or CVS in view of history of infertility ducted per year, whether the counselor is currently
and bleeding in pregnancy), I will try to steer [the] practicing, or work setting or primary focus of counsel-
patient toward a better option.’’ or practice. This differs from the findings of Pencarinha
‘‘Occasionally I will be directive through reassur- et al. [1992] who found that genetic counselors who had
ance. When I perceive a risk to be very small and a more counseling education and who spent more time
patient doesn’t seem to be keeping it in perspective.’’ with patients have stronger opinions about patient au-
‘‘When counseling couples regarding issues that may tonomy and right to choose.
potentially have a large impact on other family mem-
bers, such as familial translocations or familial disor- DISCUSSION
ders such as Fragile X Syndrome, I strongly encourage The results of this study suggest that nondirective-
persons to discuss the information with at-risk family ness is a valued goal of genetic counselors. Almost 96%
members or to have those persons contact our office. I of the sample rated nondirectiveness as very important
do inform them that it is their decision.’’ to their clinical practice. This percentage is higher than
To Recommend Medical Treatment that obtained by Wertz and Fletcher [1989] who re-
ported that 75% of their international sample of medi-
‘‘One patient’s life was endangered by her medical cal geneticists were committed to a nondirective prin-
situation, complicated by a dying fetus with a lethal ciple. Perhaps nondirectiveness is more widely en-
condition. I agreed with her M.D. that the pregnancy dorsed ‘‘as a paradigm for counseling’’ (p. 429) in the
should be terminated now, rather than let nature take United States, and/or by individuals who are educated
its course.’’ to provide genetic counseling. In addition, support for
‘‘If a client is continuing an abnormal pregnancy I nondirectiveness did not vary by gender in the present
may pressure them to return for their follow-up care to study as it did for geneticists in the Wertz and Fletcher
monitor the pregnancy/baby.’’ [1989] study where men were found to favor ‘‘. . . more
‘‘. . . Only if, in my professional opinion, a child’s directive approaches’’ (p. 36) to counseling.
health would be jeopardized otherwise . . . referring to The present results also indicate that respondents
counseling parents of a child with a metabolic condi- adhere to a relatively uniform conception of nondirec-
tion, for instance, that requires a specific diet that the tiveness. Their written definitions included these
parents may not want to follow.’’ themes: presenting both (all) sides, allowing client val-
‘‘The only situation where I feel that I would inten- ues to determine the outcome of decisions made after
Nondirectiveness in Genetic Counseling 177
receiving genetic information, and being objective. directive in telling people how to go about resolving
Terms used by respondents to describe nondirective- conflict/making decisions, but will not be directive
ness include client-centered, empathic, and nonjudg- about what the decision should be.’’ This process-
mental. These descriptors reflect a Rogerian orienta- outcome distinction is important. Genetic counselors
tion [Rogers, 1951] to counseling consistent with those are experts both in genetic information transmission
described by Marks [1993] and incorporated into the and in conducting counseling sessions. As such, they
Genetic Counselors Code of Ethics [National Society of are responsible for directing the flow of the session in
Genetic Counselors, 1991]. order to convey sufficient information to prepare cli-
Although nondirectiveness was endorsed as a pri- ents to make informed decisions. However, once clients
mary goal of genetic counseling practice, 72% of the have had an opportunity to receive and understand the
respondents indicated that they are sometimes direc- available information, then the final decision ought to
tive with their clients. Their responses support Wolff reflect their values, and not counselor values.
and Jung’s [1995] argument that genetic counseling is Does this imply that counselors should always re-
an influence process and that counselors need to ac- frain from disclosing personal biases and values to
knowledge and reflect upon their influence. The re- their clients? The majority of genetic counseling texts
spondents wrote extensive comments explaining the indicate that what a counselor might decide to do is
circumstances in which directiveness occurs. The tone irrelevant to the client’s decision since the circum-
of their comments was frequently apologetic as they stances and values of each person can be quite unique.
described veering from the morally right course of non- However, Wachbroit and Wasserman [1995] have a dif-
directiveness. Similar to the findings of Brunger and ferent perspective. They argue that it is possible for a
Lippman [1995], many of the genetic counselors in the
counselor to express values, ‘‘so long as she carefully
present sample experience conflict between the ideal of
disclaims any special expertise in matters of value,’’ (p.
nondirectiveness and the reality that they are some-
3) and clarifies that the views expressed do not have
times directive.
the authority of science behind them. Furthermore, the
The respondents provided some compelling reasons
for intentionally moving toward more directive re- counselor should be very clear about the necessity for
sponses. Many noted that it is impossible to be totally clients to examine their own values and to take respon-
nondirective in one’s choice of what information to in- sibility for subsequent decisions. Similarly, Brunger
clude and exclude from a counseling session. These and Lippman [1995] suggest that it is no less directive
comments support Brunger and Lippman’s [1995] con- to withhold one’s opinion than to give it, and that dis-
clusion that genetic counseling is not a ‘‘one-size-fits- closing one’s perspective can help the counseling pro-
all’’ endeavor; rather, information must be tailored to cess be ‘‘. . . more open, honest, and less stressful for
specific clients and their circumstances. Many respon- counselors’’ (p. 165). We would add the caveat that
dents also commented that it is impossible to control counselors must work to ensure that their opinions do
nonverbal behaviors and acknowledged that they not lead to premature closure of the client’s decision-
might be communicating their opinions to clients making process and do not unduly influence decision
through their nonverbal responses. A number of re- outcomes.
spondents indicated that they were directive when they In addition to the reasons for directiveness described
recommended genetic or medical testing. This type of above, a few infrequently reported reasons merit care-
directiveness is consistent with informed consent, a ful consideration. Some respondents stated that they
principle that may supersede the nondirective stan- were directive when they determined that clients ei-
dard. Informed consent requires that professionals ther could not understand or were unable to make a
share relevant information with their patients/families decision. Specific comments indicate that these in-
in comprehensible terms so that they can make health cluded situations where the counselors believed that
care decisions. Genetic counselors are expected to pro- the clients could not understand due to cognitive im-
vide this type of information. pairment, the clients could not ‘‘make up their minds,’’
Several respondents reported that they were direc- or the clients expected on the basis of their cultural
tive in recommending medical treatment when it was backgrounds to be told what to do. In these cases the
available and relevant to the health of their clients or counselors were directive about decision outcomes, as
their clients’ children. It was evident from the ex- opposed to directing the decision-making process.
amples they provided that these recommendations It is our opinion that intellectual functioning, inde-
were intended to prevent harm, which is one of the cision, and cultural differences should not automati-
most basic moral tenets of the medical and genetic cally lead genetic counselors to make decisions for their
counseling professions. Indeed, in instances where sub- clients, especially without considering viable alterna-
stantial harm might result from nontreatment and/or tives. For example, counselors could recommend other
lack of information, it is the counselor’s duty to make resources to assist with the decision. A parent or
strong recommendations to promote health and/or to guardian, spouse, and/or community leader may be in a
prevent serious consequences [Beauchamp and Chil- better position than the counselor to assist the client in
dress, 1994]. decision-making that is consistent with the client’s val-
One respondent differentiated directiveness in pro- ues and the cultural context in which she or he lives.
cess versus directiveness in outcome: ‘‘When clients are Genetic counselor medical expertise is not synonymous
having a hard time making a decision . . . I will be very with either moral or cultural expertise.
178 Bartels et al.