Vous êtes sur la page 1sur 15

MARY TERRELL WHITE

DECISION-MAKING THROUGH DIALOGUE:


RECONFIGURING AUTONOMY IN GENETIC COUNSELING

ABSTRACT. Nondirective genetic counseling developed as a means of promoting informed


and independent decision-making. To the extent that it minimizes risks of coercion, this
counseling approach effectively respects client autonomy. However, it also permits clients
to make partially informed, poorly reasoned or ethically questionable choices, and denies
counselors a means of demonstrating accountability for the use of their services. These
practical and ethical tensions result from an excessive focus on noncoercion while neglecting the contribution of adequate information and deliberative competence to autonomous
decision-making. A counseling approach that emphasizes the role of deliberation may
more reliably produce thoroughly reasoned decisions. In such an approach, characterized
by dialogue, counselors are responsible for ensuring that decisions are fully informed and
carefully deliberated. Counseling remains nonprescriptive, but in the course of discussion
counselors may introduce unsolicited information and/or challenge what they believe are
questionable choices. By this means clients can be better assured that the decisions they
make are fully considered, while counselors demonstrate a limited degree of professional
accountability.
KEY WORDS: autonomy; decision-making; dialogue; ethics; genetic counseling;
nondirective

INTRODUCTION
Genetic counselors throughout North America currently practice what they
describe as nondirective counseling, the aim of which is to enable clients
to make informed and independent decisions with minimal risk of manipulation or coercion. Nondirective counseling is grounded in the belief
that clients are capable of solving their own problems. In order to ensure
that decisions are informed, the counselors role is to provide clients with
accurate genetic information and respond to their questions and concerns.
Counselors minimize the risks of coercion or manipulation by communicating in value-neutral terms as much as possible and unconditionally
supporting client choices.
Genetic counselors are committed to nondirective counseling primarily because it is considered an effective and efficient means of providing
information and support to clients while respecting their freedom to make

Theoretical Medicine and Bioethics 19: 519, 1998.


c 1998 Kluwer Academic Publishers. Printed in the Netherlands.

MARY TERRELL WHITE

their own decisions. Nondirectiveness also represents a pragmatic compromise between several competing social and political values. Because this
approach dissociates counselors from responsibility for decisions made,
genetic counseling cannot be identified with any particular position on
abortion or eugenics. By maintaining a stance of moral neutrality, genetic
counseling is also implicitly pro-choice, a position that is ideologically
in agreement with mainstream feminist values and is consistent with the
emphasis on patient autonomy that currently dominates medical practice.
For all of these reasons, nondirective counseling has remained largely
unchallenged as the most appropriate approach for contemporary genetic
counseling.
But nondirectiveness is not without its practical and ethical limitations.
First, nondirective counseling may not reliably or effectively meet clients
needs. Given the complexity, ambiguity, and unfamiliarity of genetic information, some clients may feel confused or uncertain of their ability to make
decisions independently; indeed, some may not even desire to make decisions alone. For clients that do not know what questions to ask, do not
understand the information given, lack necessary reasoning capacities or
are otherwise unable to make a decision, nondirective counseling creates
the possibility that decisions may be partially informed, based on misunderstanding, or poorly reasoned. To the extent that counselors believe
they must unconditionally support client choices, they may be reluctant to
question or challenge such decisions.
Second, some counselors express awareness of a discrepancy between
the principles of nondirectiveness and the needs of the clients they work
with in their counseling practices.1 Studies of counseling interactions suggest that counselors may shape information according to what they perceive
as their clients needs, and thereby depart from strict nondirectiveness.2;3
Counselors caught in a conflict between theory and practice may feel they
are either failing to serve their patients well or are failing to counsel appropriately. Similarly, the expectation that counselors unconditionally support
even decisions they believe to be unethical such as sex selection can be
highly stressful.4 The conflict between the requirements of nondirectiveness and what counselors believe is professionally appropriate not only
impinges on counselors personal and professional integrity, but supports
the view that nondirectiveness may not always serve clients or society
well.
Third, by providing no constraints on misconstrued, poorly reasoned,
or ethically questionable decisions, genetic counseling is at risk of being
perceived as professionally irresponsible. As the experts, clients expect
counselors to help them make the best decisions possible. If counselors fail

DECISION-MAKING THROUGH DIALOGUE

to do this, they may be perceived as neglecting their duties as professionals.


Furthermore, unlike many kinds of medical decisions, genetic information
may have implications for persons other than the decision-maker. These
implications may pertain to health, insurability, or the imposition of social
stigma or other kinds of disvalue. Because of these potential consequences,
it can be argued that counselors have a professional responsibility to promote decisions that are socially responsible. If counselors cannot demonstrate some means of accountability for the use of genetic information,
they may become targets of a political backlash.
In this paper I propose a counseling model that maintains the central
values of nondirective counseling while suggesting a means by which these
ethical and practical tensions may be considerably reduced, if not resolved.
I argue that the central weakness of genetic counseling lies in an incongruence between the interpretation of autonomy reflected in nondirective
counseling and the needs of clients faced with a genetic decision. I build
my argument in several steps. First, I establish that nondirective counseling reflects a particular interpretation of autonomy: as clients right to
non-interference in decision-making. Second, by drawing on studies of the
different factors and kinds of reasoning that contribute to decision-making,
I claim that this construal of autonomy limits counselors ability to reliably meet the needs of clients. Third, I examine some of the elements that
contribute to autonomy, focusing on the respective roles of information,
freedom from coercion, and deliberative competence. Finally, I reconfigure
the interpretation of autonomy in genetic counseling, shifting the emphasis from non-interference to the quality of the decision-making process.
This construal of autonomy suggests a model of genetic counseling that
is characterized by dialogue, in which decisions arise from a process of
deliberation between counselor and client. By means of this new model I
argue that clients will more reliably make informed and thoroughly considered decisions, while counselors can demonstrate a greater degree of
professional accountability.
In this discussion my focus is on Masters level genetic counselors
those trained specifically in nondirective counseling for the genetic setting.
Numerous other health care professionals currently provide genetic counseling, including physicians, nurses, and social workers,5 but the degree to
which these professionals adhere to principles of nondirectiveness is not
known.6 I base my critique of nondirective counseling primarily on studies of prenatal testing and reproductive decision-making. The counseling
model I propose is suitable for any genetic counseling purpose.

MARY TERRELL WHITE

I. NONDIRECTIVE COUNSELING: WHAT KIND OF AUTONOMY?


The meaning of autonomy in genetic counseling is not defined in the
literature; nonetheless, the theory and principles underlying nondirective
counseling and propounded in the Code of Ethics of the National Society
of Genetic Counselors, suggest that genetic counselors interpret autonomy
in a specific way.
The primary goal of nondirective counseling is client-education, while
the ethical priority is to minimize the risk of coercion. Nondirective counseling is adapted from the client-centered counseling method Carl Rogers
developed for the therapeutic setting in the 1950s.7 In Rogers client centered counseling, discussions are led by the questions and concerns of
clients. As a rule, counselors do not raise additional issues or question
clients choices lest they risk imposing their own agenda on the discussion. Instead, the counselors role is to view the problem from the clients
perspective. From a stance of empathic regard, she clarifies and reflects
what she hears as means of helping clients organize their priorities and
values. In this way the counselor communicates understanding, respect,
and confidence in the clients decision-making ability.
Genetic counseling departs from Rogers counseling approach in that
genetic counselors must provide a certain amount of genetic information. Beyond that, the extent to which counselors adhere to clientcentered discussion undoubtedly varies with personal styles and clients
circumstances.6;8 But consistent with Rogers, the focus is on the clients
needs and values and on minimizing the counselors influence in the discussion as much as possible.
To further reduce the risk of manipulation, counselors are trained to
be alert to their own values and preferences and to speak in value-neutral
language as much a possible. It is not possible to communicate in terms that
are completely value-free, but in the effort to do so counselors often express
information in a number of ways and try to use objective terminology as
much as possible. One consequence of this effort is that in their practice
counselors may focus on medical facts rather than psychosocial issues as
the latter are more difficult to discuss without expressing values.
The central values of nondirectiveness are captured in a few succinct
passages in the Code of Ethics of the National Society of Genetic Counselors:
The counselor-client relationship is based on values of care and respect for the clients
autonomy, individuality, welfare, and freedom. The primary concern of genetic counselors
is the interests of their clients. Therefore, genetic counselors strive to:
Respect their clients beliefs, cultural traditions, inclinations, circumstances, and feelings.

DECISION-MAKING THROUGH DIALOGUE

Enable their clients to make informed independent decisions, free of coercion, by providing or illuminating the necessary facts and clarifying the alternatives and anticipated
consequences9 (p. 170).

Although these passages acknowledge the value of information in selfdetermination, they focus on the importance of respect for individual differences and freedom from coercion. The emphasis on avoiding coercion and
supporting client choices suggests that in genetic counseling autonomy is
interpreted in a certain way: as clients right to noninterference in decisionmaking. This interpretation reflects the dominant view of autonomy in
contemporary American culture, however, is not clear that it corresponds
to the needs of clients faced with a genetic decision.

II. GENETIC COUNSELING: UNCERTAIN EFFECTIVENESS


An underlying assumption of nondirective counseling is that counseling
helps clients make decisions having to do with genetic information. But
studies of reproductive decision-making suggest that this may not be a
reliable assumption. A basic premise of counseling is that the information
counselors provide contributes to client decision-making. But studies of
reproductive decision-making indicate that genetic counseling has little or
no influence on client decisions that are made prior to counseling and does
not reduce uncertainty for most of those who are undecided.10;11 These
findings suggest that either the kinds of information counselors provide is
not that on which clients base their decisions, or that intrinsic features of
genetic decisions, such clients desire for certainty, cannot be successfully
addressed by counselors.
That nondirective counseling does not significantly influence client
choices is not surprising given that counselors provide primarily medical
and genetic information. There is much yet to be known about the process
of decision-making, but existing studies indicate that genetic decisions
are based on far more than risk assessments and diagnoses and suggest a
number of reasons why nondirective genetic counseling may fail to meet
clients needs. First, if the effectiveness of genetic counseling depends
on the types and quality of the information provided, studies suggest that
clients may be more interested in psychosocial issues and the affective
dimension of the counseling interaction than medical information.11 16
Clients cultural backgrounds may also influence the kinds of information
sought.1 The question of whether clients would prefer more directive guidance has rarely been explored, but in one study a majority of respondents
wished to know the opinion of the genetic counselor.17

10

MARY TERRELL WHITE

In addition to the information provided by counselors, numerous other


factors contribute to genetic decisions. The perception of risk has been
found to be associated with clients prior knowledge of, or experience
with, the disorder in question; whether or not the clients know anyone
with the disorder; and the particular form of expression of the disorder
in the known person.18 Other factors known to contribute to reproductive
decisions include clients desires for children; perceptions of burdens
emotional, physical, financial, and social; past reproductive history; confidence in parenting ability; clients age; timing of testing; and the anticipated responses of other children and relatives to decisions.12;15;16;19;20
Of those for whom uncertainty is insurmountable, some may displace
decision-making responsibility onto the genetic counselor by claiming the
counselor somehow signaled approval, while others may opt for inconsistent use of contraception as a means of making decisions.21
The findings from these studies perhaps cannot be generalized to all
genetic decisions; nonetheless they are revealing of the complexity of
decision-making and suggest that nondirective counseling may be neglecting many important issues germane to genetic decisions by limiting discussions to medical facts and issues raised by clients. If the goal of counseling
is to help clients make informed and independent decisions, how might
this more reliably be accomplished? What does respect for client autonomy
require?
III. AUTONOMY: THE ROLE OF DELIBERATIVE COMPETENCE
In its most literal sense, autonomy refers to the human capacity for selfrule or self-determination. Autonomy is understood not with reference to
persons but actions, because persons may be autonomous with respect to
some types of actions but not to others. At minimum, autonomous choice
requires intentionality, adequate information, freedom from controlling
influences, deliberative competence, and available alternatives. Intentionality refers to the clients desire to act autonomously, in the absence of
which self-determination is not possible. Because counselors generally
cannot affect either clients intentionality or access to alternatives in the
course of a counseling session, the counselors potential contribution lies
chiefly in the quality of the information she provides, the extent to which
she attempts to minimize controlling influences, and her involvement in
the decision-making process.
As information provider, one of the central questions for counselors is
how much and what types of information she must provide in order for
clients to make autonomous decisions. Information is not value-neutral.

DECISION-MAKING THROUGH DIALOGUE

11

The way it is presented and the types of information provided or omitted


may shape the way a client thinks about the decision. Because genetic information is usually complex and unfamiliar, and clients needs to know and
capacities for understanding vary, counselors must balance their responsibility to provide information as accurately as possible with sensitivity to
the particular needs of clients.
Freedom from controlling influences refers primarily to manipulation
or coercion by others, but it also requires that internal inhibitors such as
fears, ignorance, and stress be minimized. Perfect freedom is unattainable. A persons choices are both shaped and limited by numerous factors,
including the persons socioeconomic status, education, cultural and religious beliefs, health, significant relationships, and the environment within
which he or she lives and works. Because the very factors that constrain
a persons choices may be those that define his or her identity, in genetic
counseling freedom from controlling influences usually refers to freedom
from coercion by other persons, with specific attention given to avoiding
manipulation by counselors themselves.
Given intentionality, adequate information and a reasonable degree
of freedom from controlling influences, self-determination depends on a
clients ability to weigh and choose, to deliberate between alternatives, and
finally, to arrive at the decision that seems best under the circumstances.
This capacity is defined as competence, or the ability to make reasonable
decisions based on rational reasons22 (p. 83).
Most philosophical and ethical analyses of autonomy equate good decisions with competent decisions and postulate rational thinking as the defining characteristic of competence. Rational thinking would include such
considerations as costs versus benefits and related pragmatic issues. However, studies in psychology and behavioral science demonstrate that human
motivation is driven at least as much by unconscious impulses, emotional
responses, fears, wishes, and dreams. The studies cited above suggest that
few genetic decisions are based entirely on rational factors. Many sentiments that contribute to decisions, such as clients desire for children,
anxieties as to how decisions will be interpreted by others, and perceptions
of parenting, usually cannot be logically deduced or defended, and hence
may best be described as non-rational.
A full account of autonomy must accommodate the contribution of both
rational and non-rational factors to decision-making. One such account has
been developed by Bruce Miller.23 Miller identifies three distinct deliberative frameworks each of which represents a different kind of autonomy. These he characterizes as authenticity, effective deliberation, and
moral reflection. Authentic choices are those that are in character, con-

12

MARY TERRELL WHITE

sistent with a persons most cherished values, goals, and beliefs. Effective
deliberation resembles the traditional definition of competence, referring
to the conscious, rational evaluation of alternatives and their consequences
based on perceptions of risks and burdens in view of available resources
and services. Morally reflective decisions are evaluated in view of the
moral values they represent. While Miller argues that a decision made on
the basis of any one of these frameworks can be considered autonomous,
his analysis also suggests that autonomous decisions draw on a wide range
of factors and deliberative approaches.
I believe that the central weakness of nondirective counseling lies in
its neglect of the role of deliberation in autonomous decision-making.
Because most clients are unfamiliar with genetic information and the types
of decisions to be made, they cannot be assumed to be aware of all the
factors relevant to their decisions or to be independently capable of anticipating the consequences of their alternatives. Their prior knowledge and
experience may both inform and mislead them, while the stress of the
circumstances may impair their judgement. To the extent that nondirective
counseling limits counselors freedom to raise additional issues or question clients decisions, clients are at risk for making partially informed
or poorly reasoned choices. By focusing excessively on noninterference,
counselors could be construed as abandoning clients to errors of ignorance
or poor judgment, while clients are denied the full benefit of counselors
knowledge and experience.
IV. COUNSELING AS DIALOGUE
If client autonomy is to be respected in genetic counseling, opportunities for misconstrued, poorly reasoned, or ethically questionable choices
cannot be entirely eliminated, but it is important that they be minimized.
This can be achieved by reconfiguring the elements of autonomy, shifting the counselors attention from noninterference to the quality of the
decision-making process. This shift reflects a change in the understanding of autonomy. In nondirective counseling autonomy is construed as
a negative right: as clients right to noninterference in decision-making.
Alternatively, autonomy can be viewed as a positive right: as the right to
a maximally enhanced decision-making capacity.24 The aim of counseling remains unchanged: to enable clients to make decisions that are fully
informed and carefully deliberated, and consistent with their goals, values,
and beliefs.
In the interests of promoting sound decision-making, I propose that
counseling take the form of a dialogue in which counselor and client are

DECISION-MAKING THROUGH DIALOGUE

13

mutually involved in the deliberative process. If nondirective counseling


suggests a one way flow of information, in dialogue, deliberation would
take the form of a conversation in which both counselor and client have
important roles. Counselors would bring to the discussion their knowledge
and experience and be free to offer additional information or question
clients choices. Clients would bring their values, goals, and beliefs, which,
if a decision must be made, would provide the criteria by which alternatives
are evaluated. Clients make their final decisions independently, but not until
both counselor and client are satisfied that the deliberative process has been
thoroughly and carefully conducted.
I characterize counseling in terms of dialogue because I believe dialogue more closely resembles the way in which persons naturally make
decisions. When persons are faced with decisions of consequence they
often deliberate in the form of a dialogue. The dialogue may involve conversing with another person, consulting an authoritative text, or creating
an internal debate in the decision-makers own mind. Persons may engage
in dialogue for a number of reasons: either for affirmation that their decision is correct, for assistance in decision-making, or for explicit guidance
or advice. Because dialogue requires at minimum two voices, a counseling approach modeled on dialogue affirms that decisions are not made
in a social vacuum. Rather, people make choices by reflecting on their
own experiences and values in contrast with those of others within their
communities.
The dialogical approach recognizes that a persons perceived values and
goals emerge from his or her experience and the communities with which
he or she identifies. But depending on that experience, a person faced with
a decision may or may not be aware of the subtleties of the information or
range of alternatives relevant to his or her circumstances. This is often the
case in genetic counseling in which the types of information and decisions
to be made are usually unfamilar to clients. For example, a woman seeking
breast cancer testing may not fully grasp the significance of what a positive
diagnosis might mean for her. Prospective parents with a fetus diagnosed
with Down syndrome may not realize the range of expression of that
disorder and the corresponding medical complications or special services
available for the child. If a client seems to be missing important points
or basing a decision on a narrow view of the circumstances, a dialogical
counselor can offer additional information and perspectives as a way of
broadening the clients understanding or range of options. In nondirective
counseling this kind of intervention could be seen as manipulative; in a
dialogical approach it would be seen as deepening the clients grasp of his
or her alternatives. The aim would not be to exhaustively educate the client,

14

MARY TERRELL WHITE

but simply to minimize the likelihood of future regret due to some easily
avoidable error of omission, ignorance, or unanticipated consequences.
The goal of dialogical counseling, then, is an informed and wellconsidered decision, the quality of which is directly related to the thoroughness of the deliberative process. But what should be the content of
such a process? By what criteria should thoroughness be evaluated? How
might a counselor or client know when deliberation has reached its limit
and the best decision has been found?
Millers analysis of autonomy provides some guidance. His three frameworks suggest distinct types of values and content areas that should be
included in discussion. The framework of authenticity calls for consideration of clients prior beliefs, values, and experiences as well as their goals
and preferences. Effective deliberation requires consideration of pragmatic
factors, including but not limited to the medical diagnosis, existing family
responsibilities, financial resources, and available support services. Moral
reflection calls for examination of the ethical values of clients and the communities in which they live, and any consequences for other individuals or
society that may arise from genetic testing.
A thoroughly deliberated decision would be one that had taken account
of each of these kinds of considerations, even though they may not all be
reflected in the final choice. The optimal choice would represent a point
of balance, or equilibrium, between the values, beliefs, and goals of the
decision-maker. It may be at some remove from a clients initial thinking,
depending on what is included in the discussion and whether the client has
had to reevaluate his or her priorities. Decisions are not immune to regret,
because persons values change with time and experience. But clients that
believe their decisions are soundly reasoned can at least be confident that
they have made the best choice possible at that moment in their lives.
By ensuring that decisions are thoroughly considered, dialogical counselors can not only better meet the needs of clients, but in the process they
demonstrate responsibility for the use of their services. This responsibility
is limited, but not insignificant. It is limited because genetic counselors
cannot attempt to impose restrictions on the way genetic information is
used. Genetic decisions are highly personal, and in a pluralist society there
are no common values that could serve as ethical guidelines for the uses
of genetic information. This is clear from the kinds of decisions made.
While one person might perceive raising a child with Down syndrome as
imposing intolerable suffering on the child or a burden on society, another
might view the same child as an opportunity for parenting and compassion. While some may want to know if they carry a gene for a late onset
disorder in order that they may feel empowered and responsible, others

DECISION-MAKING THROUGH DIALOGUE

15

would rather ignore the burden such knowledge might impose. The Asian
couple that needs a male child in order to maintain a family lineage may be
viewed by Americans as discriminating against women. Clearly, the differing values and needs of clients must be acknowledged and respected. But
errors of ignorance, poor judgement, or harms to others must be avoided.
To this end, the only prerogative counselors have is to ensure that clients
carefully consider the full range of personal, practical, and ethical issues
that are potentially relevant to their decisions. Because counselors must
respect clients final choices they cannot prevent poorly reasoned or ethically questionable decisions. But by taking responsibility for the quality of
the deliberative process, counselors not only can have the satisfaction of
knowing that they have done all they can to promote responsible decisionmaking, but they also demonstrate as much professional accountability as
is possible while upholding clients freedom of choice.
A dialogical model of counseling is not without its own limitations.
Critics will argue that a dialogical approach would take too long and risks
compounding clients confusion. This is a possibility. But it is also possible
that with slightly different training counselors can become astute in quickly
discerning which issues are sources of conflict for clients and which are
not. Dialogical counseling does not require that all facts and alternatives
be equally addressed, but that within the three frameworks, the types of
information and perspectives the client deems meaningful be given careful
consideration. As in nondirectiveness, much of the counselors skill will
entail determining how much clients want and need to know; when to offer
additional information or further explore clients reasoning; and when the
decision-making process is approaching resolution.
It will additionally be argued that clients should be free to make illinformed or poorly reasoned choices as they wish that the dialogical
model intrudes on client autonomy by requiring clients to think about
issues they might prefer to ignore. This is a legitimate claim. Some clients
may indeed prefer to be left to make their own choices without interference,
even knowing they may make a decision they may later regret. But I believe
the majority of clients want to make the best decisions they can, and that
counselors have a responsibility to help them to do so. This responsibility is
derived from counselors greater knowledge and experience with genetic
decisions, and the fact that clients come to them for help. In all other
areas of health care, when experts provide medical alternatives they do
not expect patients to make decisions without guidance or assistance as it
is assumed that patients cannot grasp the significance of the information
provided without help. Only in genetics, perhaps because of the Nazi
legacy and the fear of eugenic associations, have professionals exempted

16

MARY TERRELL WHITE

themselves from participating in decision-making. This excessive focus


on nondirectiveness assumes that clients are readily manipulable, prone to
coercion easy targets for any unscrupulous genetic counselor. But this
perception is outdated. Today it is more often the medical professionals
that are afraid of being victimized by those they serve. Clients must be
given credit for a reasonable degree of resilience to coercion and offered
the full benefit of counselors knowledge and experience as they make
their decisions.
Granting counselors a more substantial role in deliberation does increase
opportunities for manipulation. These risks could be minimized by means
of an informed consent process that would clarify the aims and limits of
the counseling dialogue as well as prepare clients to make the best use
of counseling services. Counselors should make it clear to clients that
the decision is to be made by the client and that the counselors aim is
only to ensure that the decision is informed and carefully considered.
Counselors should ask for permission to introduce unsolicited information
and question decisions, and ask clients to tell them if they feel they are
being pressured into a choice that is not their own. Such a process could
do much to minimize the risk of coercion. However, it cannot eliminate it.
If a counselor is determined to be manipulative, no process of informed
consent or mandate to be nondirective will provide an effective constraint.

CONCLUSION
Dialogical counseling retains many of the features of nondirective counseling. By focusing on clients values, experiences and circumstances,
dialogical counseling could equally be described as client-centered. The
professional stance and many of the counseling strategies used in nondirective counseling may similarly be employed in the dialogical approach.
These include the use of empathy as a means of understanding clients
perspectives; sensitivity to the particular experiences and concerns of individual clients; conscious efforts to avoid manipulating client choices; and
perhaps to begin with, client-led discussion as a means of developing trust
and rapport. The key difference in the dialogical model lies in the expanded
role of the genetic counselor. She is no longer nondirective, but an active
participant in the decision-making dialogue. She is not morally neutral, but
responsible for ensuring that decisions are based on careful consideration
of all the factors the client identifies as significant. By taking responsibility
for the quality of the decision-making process, she demonstrates a degree,
if limited, of responsibility for the use of genetic information.

DECISION-MAKING THROUGH DIALOGUE

17

Through the expanded role of the genetic counselor, dialogical counseling begins to address the ethical tensions outlined at the outset of this
paper. A dialogical counseling approach should enable clients more reliably and confidently to make fully informed and thoroughly considered
decisions. In this approach, counselors autonomy and integrity would be
enhanced to the extent that they would no longer feel torn between following the requirements of nondirectiveness and contributing what they
believe is most beneficial to the decision-making process. And by holding
counselors responsible for the quality of the deliberative process, dialogical counseling offers a means by which counselors can demonstrate a
degree of professional accountability for the use of genetic information.
This proposal has focused on the ethical dimension of the counselorclient relationship; it does not address the practical details of genetic counseling and client decision-making. Undoubtedly, dialogical counseling will
require more training in psychology and ethics than is currently offered in
most graduate programs. To be maximally effective it will require further
study of the deliberative process the factors and cognitive strategies used
in decision-making, and the ways counselors can contribute to, or interfere
with, that process. The meaning of social and professional responsibility in the context of genetic counseling also needs clarification. But as
a theoretical framework, dialogical counseling offers a way of maintaining the ethical priorities of nondirective counseling while addressing the
need for accountability brought on by the rapid increases in genetic testing. Undeniably, this counseling model imposes new responsibilities on
both counselors and clients. As partners in dialogue, counselors have an
increased responsibility to be at once broadly informed and skilled educators, psychologically astute counselors, and ethically reflective individuals.
Clients, on the other hand, must bring with their desire for information a
willingness to use that information wisely and responsibly. As an alternative to nondirectiveness, dialogical counseling thus may not be the easier
approach, for either counselors or clients. But in a future filled with testing
oportunities, it may be the only way to ensure responsible decision-making
while upholding individual freedom of choice.

ACKNOWLEDGEMENTS
The author is grateful to Robert D. Rece, Ph.D., Therese Lysaught, Ph.D.,
and John Douard, Ph.D., for their thoughtful comments and suggestions
on earlier drafts of this paper.

18

MARY TERRELL WHITE

REFERENCES
1.
2.
3.
4.
5.

6.

7.
8.

9.

10.
11.

12.
13.

14.
15.
16.

17.

18.
19.

Rapp R. Chromosomes and communication: the discourse of genetic counseling.


Medical Anthropology Quarterly 1980; 2: 143157.
Lippman A, Wilfond BS. Twice-told tales: stories about genetic disorders. American
Journal of Human Genetics 1992; 51: 936937.
Brunger F, Lippman A. Resistance and adherence to the norms of genetic counseling.
Journal of Genetic Counseling 1995; 4: 151167.
Burke BM. Genetic counselor attitudes toward fetal sex identification and selective
abortion. Social Science and Medicine 1992; 34: 12631269.
Andrews LB, Fullarton JE, Holtzman NA, Motulsky AG, eds. Assessing Genetic
Risks: Implications for Health and Social Policy. Washington D.C.: National Academy Press, 1994: 149.
Michie S, Marteau T. Genetic counseling: some issues of theory and practice. In:
Marteau T, Richards M, eds. The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Cambridge: Cambridge University Press, 1996:
104122.
Rogers CR. Client Centered Therapy, Boston: Houghton Mifflin, 1951.
Sorenson J. What we still dont know about genetic screening and counseling. In:
Annas GJ, Elias S, eds. Gene Mapping: Using Law and Ethics as Guides. New York:
Oxford University Press, 1992: 203212.
National Society of Genetic Counselors. Code of Ethics. In: Bartels DM, LeRoy BS,
Caplan AL, eds. Prescribing Our Future: Ethical Challenges in Prenatal Counseling.
New York: Aldine de Gruyter, 1993: 169171.
Kessler S. Process issues in genetic counseling. Birth Defects: Original Article Series
1992; 28: 110.
Kessler S. Psychological aspects of genetic counseling: VI. A critical review of the
literature dealing with education and reproduction. American Journal of Medical
Genetics, 1989; 34: 340353.
Wertz DC, Sorenson JR, Heeren TC. Genetic counseling and reproductive uncertainty.
American Journal of Medical Genetics 1984; 18: 7988.
Zorzi G, Thurman SK, Kistenmacher ML. Importance and adequacy of genetic counseling information: impressions of parents with Downs Syndrome children. Mental
Retardation 1980; 18: 255257.
Shiloh S, Avdor O, Goodman RM. Satisfaction with genetic counseling: dimensions
and measurement. American Journal of Medical Genetics 1990; 37: 522529.
Frets PG, Niermeijer MF. Reproductive planning after genetic counseling: a perspective from the last decade. Clinical Genetics 1990; 38: 295306.
Lippman-Hand A, Fraser FC. Genetic counseling the postcounseling period: I.
Parents perceptions of uncertainty. American Journal of Medical Genetics 1979; 4:
5171.
Furu T, Kaarlainen H, Sankila E-M, Norio R. Attitudes towards prenatal diagnosis
and selective abortion among patients with retinitis pigmentosa or choriodema as well
as among their relatives. Genetics and Society 1993; 43: 160165.
Wertz DC, Sorenson JR, Heeren TC. Clients interpretation of risks provided in
genetic counseling. American Journal of Human Genetics 1986; 39: 253264.
Frets PG, Duivenvoorden HJ, Verhage F, Niermeijer MF, van de Berge SMM, Galjaard
H. Factors influencing the reproductive decision after genetic counseling. American
Journal of Medical Genetics 1990; 35: 496502.

DECISION-MAKING THROUGH DIALOGUE

20.

19

Ekwo EE, Kim JO, Gosselink CA. Parental perceptions of the burden of genetic
disease. American Journal of Medical Genetics 1987; 28: 955963.
21. Lippman-Hand A, Fraser FC. Genetic counseling the postcounseling period: II.
Making reproductive choices. American Journal of Medical Genetics 1979; 4: 73
87.
22. Beauchamp TL, Childress JF. Principles of Biomedical Ethics, New York: Oxford
University Press, 1989: 83.
23. Miller BL. Autonomy and the refusal of lifesaving treatment. Hastings Center Report
1981; 4: 2228.
24. Brody H. The Healers Power. New Haven: Yale University Press, 1992: 51.

Department of Community Health


Wright State University School of Medicine
P.O. Box 927
Dayton, OH 45401-0927, USA

Vous aimerez peut-être aussi