Findings
Genetics and Pastoral Counseling: A Special Report
by Philip J. Boyle
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Knowledge and Skills
Those interviewed consistently identified
the genetics knowledge base of pastoral
counselors as a major stumbling block.
Clinical genetics professionals discount
those without an understanding of genetics. While there was no agreement about
the extent of genetics knowledge that
pastoral counselors need, interviewees
reached broad agreement that the lack of
a rudimentary understanding of inheritance
patterns, prognosis, and social consequences
of genetic diagnoses was an
obstacle to pastoral counselors' participation.
Of particular concern was misinformation
that some pastoral counselors
had given to patients and families. In
one case, for example, misunderstanding
the prognosis prompted the pastoral
counselor to advise termination of lifesustaining
treatment of an impaired newborn
whom geneticists judged to have a
good prognosis for survival.
Most pastoral counselors are not
adequately prepared by their training to
deal with the technical issues raised by
genetics. A large portion of their training
focuses on the theological doctrine
of their tradition, and specialization
usually concentrates on those skills
needed for teaching, preaching, and
other aspects of ministry. Very little theological
education is devoted to science,
and specifically to genetics, except in
courses about healthcare ethics. Of
those who specialize in pastoral ministry,
most undertake extensive preparation
in clinical programs such as
clinical pastoral education; however, even those programs that are situated in
a healthcare setting do not provide sufficient
exposure to the science of genetics.
Pastoral counselors' ignorance of
clinical genetics can lead to feelings of
inadequacy in addressing any aspect of
genetics, even though they may be familiar
with the religious and spiritual issues
associated with other, non-genetic causes
of illness and death, issues which
genetic conditions might also raise. The
complexity of the science can obscure
the vision of pastoral counselors and
prevent them from recognizing that they
have valuable professional services to
offer. Several informants noted that pastoral
counselors are unaware they can
assist, and so need to be informed about
the contribution they can make.
Clinical genetics professionals
interviewed believed that pastoral counselors
are unaware of psychosocial issues
that patients and families face in dealing
with genetic diagnoses or conditions.
Interviewees' perception, accurate or
not, was that congregational clergy are so
involved in administering organizations
that they might not have encountered
the problems that genetics concerns
pose for congregants. The absence of
particular knowledge was thought to be
one of the reasons pastoral counselors
did not integrate this information into
their preaching, teaching, or counseling
on health- and faith-related issues.
Also, some moral options that genetic
knowledge presents are controversial in
particular faith communities; thus some
pastoral counselors fear to discuss them.
A significant number of those
interviewed identified inadequate pastoral
knowledge and skills on the part of
pastoral counselors as the greatest obstacle
to participation. "I'm afraid they
[pastoral counselors] are going to do
more harm than good" was a common
refrain. Most focus groups surfaced several
horror stories in which the genetics
professional had directly experienced a
pastoral counselor who, for lack of pastoral
knowledge or competence, had significantly
harmed the patient, family, or both. Those interviewed also believed
that pastoral counselors did not adequately
understand counseling techniques,
which the healthcare workers
assumed should always be nondirective.
Not surprisingly, bad experiences with
one pastoral counselor often established
the stereotype for everyone else.
Clinical genetics professionals
questioned whether some pastoral counselors
understood the nuances of their
religious tradition sufficiently to provide
patients, families, and healthcare
providers with options that were consistent
with the patient's religious tradition.
Pastoral counselors who had
provided misinformation about a religious
tradition created a need for additional
resources to reeducate the patient.
Genetics professionals' level of
knowledge of religious issues was also a
barrier. Subtle differences within or
between religious groups complicated
referrals, because clinical genetics professionals
did not feel they understood
the differences among religious perspectives
or recognized whether the differences
would help or hinder treatment.
Several respondents suggested that the
healthcare team does not know enough
about how religious or spiritual communities
look at the genetics issues. As
one interviewee stated, "Medical training
does not focus enough on spirituality
and ethics; doctors are used to thinking
in scientific method."
Those interviewed also noted that
the limited skill base of pastoral counselors
was an impediment. This lack of
skill might cause them to "botch the
job," as one interviewee put it. Almost all
focus groups listed a range of worst practices
that should, in their view, never be
employed in counseling. These include
being too directive or condemning, and
then ostracizing patients and families
who acted contrary to the pastoral counselor's
recommendations.
Finally, one interviewed religious
professional noted that even if pastoral
counselors were more willing to study
and understand the psychological,
social, and religious ramifications of
genetics, a significant barrier would
remain: it is hard to get busy pastoral
counselors to attend seminars for education
on genetics.
Practice Patterns
The practice patterns of healthcare
professionals also pose a hurdle. One
problem is timing. Clinical genetics professionals
acknowledge that they make
most referrals when patients or families
are in crisis. Absent a crisis, even though
a genetic condition might raise religious
and spiritual issues for the patient, referrals
to pastoral counselors for these
issues are not routine. As a result, some
respondents observed that pastoral
counselors are brought in too late—when,
for instance, the patient is already hospitalized.
Some interviewed considered
another problem to be the intrusiveness
of inquiring into a patient's religious
background. This hesitancy created a
pattern of avoiding religious issues.
Another obstacle is the nature of the
clinical setting where genetic diagnosis
and treatment first occur. Geneticists
indicated that referrals to pastoral counselors
from the physician's office (for
example, after genetic diagnosis and
counseling) are more the exception than
the rule, and are generally made only at
the request of the patient. Still another
obstacle, previously mentioned, is that
clinical genetics professionals are reluctant
to refer to unknowns. If they are
unsure of a pastoral counselor's training,
they don't know what they are getting and
are therefore more likely to be protective.
Finally, some clinicians reported that
referrals were problematic because there
was a lack of teamwork. In situations
where there was teamwork and pastoral
counselors were available, clinical genetics
professionals made more referrals.
Interprofessional Relations
Interprofessional relations, or the lack
thereof, are another hindrance. One
interviewee stated that professional location
is an obstacle, that is, some genetic
counselors have little or no contact with
pastoral counselors, and the same is true
for pastoral counselors' contact with
clinicians working in genetics. More critical
is the issue of professional turf, viz.,
what issues should and should not be
addressed by pastoral counselors. For
example, one informant contended that
pastoral counselors should not be
involved in providing any diagnostic or
medical information to patients or families.
Professional turf issues were also
raised when the clinicians felt that they
needed to protect a patient from a pastoral
counselor who might contradict
the clinician or be directive in a way that the clinician could not accept.
Ideologies and Biases
Healthcare professionals' ideologies and
biases are formidable obstacles. As
observed by a few focus group members,
and confirmed in the literature, many
clinicians are unaware of their own
value assumptions. For example, in the
drive to be nondirective, geneticists and
genetic counselors list options for
patients without recognizing that these
have religious implications. During
interaction among the geneticists and
genetic counselors in focus groups, a few
self-conscious clinicians observed that
as much as clinicians intended to be
nondirective, they were very directive in
making sure that patients did not go to
pastoral counselors who clinicians
thought were directive.
A few participants stated that they
never had made and would not consider
referrals to pastoral counseling. It
was not their "place as scientists to promote
religion." Less subtle were geneticists
who were wary about the benefit of
religious resources. Some geneticists'
bias against religion was tempered in the
focus groups, perhaps because the overall
premise of the research was to find
ways to better integrate pastoral counseling
into the new genetics.
Genetics professionals and pastoral counselors noted that a barrier to
involvement for some pastoral counselors
includes some religious professionals'
distrust of science. From certain
religious perspectives, genetic science
seems to undermine or contradict religious
doctrine. Acceptance of the genetic
inheritance of all life, for example,
supports evolution, and thereby contradicts
some interpretations of Abrahamic
religions' view of creation. Also,
behavioral genetic theories that are
believed by some to foster moral determinism
and diminish free will, add to
the suspicion. Finally, as one informant
noted, some pastoral counselors from
the Catholic and Evangelical traditions
paint genetic counselors as professionals
who will recommend only morally
problematic options (such as abortion)
that may be proscribed by a religious
tradition.
Barriers Created by System/Institution
Some interviewees noted that there is a
lack of capacity in the system because
too few individuals have an understanding
of both genetics and pastoral
counseling. This dearth of professonals
with dual expertise in genetics and pastoral
issues is an obstacle to referrals,
cooperative work, and the translation
and communication of meaning between
the medical and the religious/spiritual
realms. Some clinical genetics professionals
admitted that they were unsure
what the religious issues related to genetic
diagnosis look like. They added that
if it was important for healthcare institutions
to have these issues addressed,
the institutions would have to look for
ways to bridge this translation problem.
Institutional priorities that are
shaped by limited resources pose a barrier
to adequate funding for pastoral
counselors who could address the religious
needs of patients and families
with genetic diagnoses. With constant
pressure to reduce the cost of delivering
health care, healthcare institutions are
reexamining pastoral care budgets,
reducing funding, and in some cases
"outsourcing" responsibilities to volunteers
from local congregations. One
interviewee noted that while a clinical
genetics professional might follow a
patient and family through an entire
chronic illness or long-term need for
hospitalization, an equivalent continuity
of pastoral care is unlikely.
A few interviewees with backgrounds
in religion noted a dual barrier
created when inadequate training in
pastoral counseling receives de facto
support from institutional hiring practices.
For budgetary reasons, persons
may be allowed to function as pastoral
counselors in health care even though
they have insufficient theological and
pastoral education. In many areas, shortages
of clergy have resulted in the delegation
of their role to lay chaplains
who have minimal training in theology,
pastoral care, or healthcare ethics. Over
the past decade graduate theological
education has been compressed into
two-year programs, and many shorter
certificate programs have emerged. The
result has been an increased number of
lay ministers who have minimal knowledge
and skills in pastoral counseling.
While there has been a significant
movement in healthcare institutions to
require adequate preparation in pastoral
counseling, there remain a significant
number of institutions that, for
various reasons, will allow less wellprepared
pastoral counselors to serve
despite inadequate preparation.
SOLUTIONS
The potential volume of pastoral
counselors, the paucity of genetic
counselors, and the positive features
that pastoral counselors bring to persons
with genetic conditions all argue
for better integrating pastoral counselors
into the provision of genetic services.
Yet any attempt to do so will
require addressing knowledge, skills,
and best practices for all the parties
involved: pastoral counselors, geneticists,
genetic counselors, social workers,
and institutions that train and sustain
them. The solutions offered below
emerge both from the interviews and
from scholarly literature. While many
of the proposed solutions respond to
the obstacles described above, they
also address issues that did not arise in
the focus groups but were acknowledged
in other venues as problems.
Knowledge of Genetics
The amount and kind of genetics knowledge
needed by pastoral counselors was
a significant thread in conversations
with interviewees. Informants did not
agree on how much genetics pastoral
counselors should know. Opinions
ranged from a recommendation to skip
genetics entirely, to a proposal that all
theological education have required
courses in genetics and certification of
pastoral counseling competency in
genetics. Despite the range, most agreed
that genetic misinformation is dangerous.
Clinical genetics professionals discount
input from pastoral care when it
demonstrates ignorance about the complexities
of genetic science. Yet, as one
geneticist noted, "in the healthcare
world where [even] the family physician
is not as versed in the advances of genetic
science, it is unrealistic to expect
extensive knowledge on the part of the
pastoral counselor."
Most interviewees agreed that
pastoral counselors need at least rudimentary
genetic knowledge, such as
knowledge of basic patterns of inheritance.
Misunderstanding about the probability
of inheriting a genetic condition
can lead to inappropriate pastoral counseling.
One interviewee told of a pastor
counseling a couple whose child had
died of thanatophoric dysplasia, a lethal
form of dwarfism. The couple had no
prior history of this condition in their
family; it had arisen as a copy disorder of
genes between generations. The genetic condition was thus an isolated event,
and quite unlikely to occur in future
children. Without adequate information,
the local pastoral counselor informed
the couple that it was a sin to have
another child and pass on a horrible
disease.
Knowledge of recurrence risks
could have helped the pastoral counselor
function competently. The local
pastor needed to know that even if the
genetic disorder followed an autosomaldominant
pattern of inheritance, in
which only one copy of the gene is needed
to pass the disorder from parent to
child, there is only a 50 percent chance
that the next child will inherit the gene.
Similarly, the pastor needed to understand
another pattern of genetic inheritance
called autosomal-recessive, which
requires the child to inherit two copies
of the gene, one from each parent.
When both parents carry an autosomalrecessive
gene, there is a 25 percent
chance that any child born to them will inherit the genetic disorder. If the child
receives only one copy of the gene, he or
she is a carrier for the genetic disorder but
will never express the disorder. Further,
the pastor needed to understand that other
patterns of inheritance arise because of
random mutation in genes between generations,
as in this case of thanatophoric
dysplasia. Pastoral counselors need to
know these basic patterns and the probabilities
of passing genetic anomalies from
one generation to another.
Interviewees stressed that while
detailed knowledge of all genetic disorders
is not necessary, it is important to
know something about basic disease
processes and prognosis. As one informant
noted, "Clergy who are misinformed
about critical conditions can
mislead families in thinking through
their options." For example, pastoral
counselors should understand how variable
circumstances can be within one
genetic condition, such as Fragile X disorder,
a common form of mental retardation
that can express itself with varying
degrees of severity. Knowing whether
the disease process will end in death or
disability will aid the counselor in knowing
how to walk or talk with the patient
and family. As one informant put it,
"Enough medical facts so that you don't
counsel someone about death and dying
who is really not [dying]." "Knowing
enough not to say anything stupid,"
another remarked. "Pastors need to see
enough to know what they're talking
about. In other words, not like right-tolifers
who are prognosticating about a
child with birth defects and never having
seen one—that is dangerous. . . . Clergy
need to know that things aren't always so
concrete."
Finally, one informant summed up
a shared view: "Clergy need to know
that lifestyle doesn't influence genetics.
For example, don't blame the alcoholic
dad for the kid with Down Syndrome."
Although the informants admitted that
some environmental factors can spontaneously
cause genetic mutations, it is
important for pastoral counselors to have
some notion of the etiology of genetic
anomalies so that they avoid compounding
the guilt of parents whose
child may inherit a genetic condition.
Are there any guideposts for pastoral
counselors in the range between
knowing a little and knowing a lot of
genetics? Several informants noted that
adequate understanding would include
enough knowledge in genetics to dispel
misinformation. Such understanding
need not include knowing every medical
detail, but in a given instance should
permit an appreciation of the disease
process and what the patient and family
will face. A pastoral counselor, like a
patient's family, needs some basic
resources to understand the patient's
disease, but perhaps more fundamentally
needs to know what the patient
understands about the disease. Like
family members, pastoral counselors
should not assume the role of providing
information about a patient's disease—
they are not "physician extenders"—or
providing information about care
options. Since normally they are not
trained in the details of genetics, this
role is not appropriate for pastoral counselors
or family members.
One informant nicely summarized
the amount of genetic knowledge that
pastoral counselors need:
Genetic literacy is the key factor in
how effectively pastoral counselors
will play this role. This is not to say
that pastoral counselors are expected
to become geneticists. But in the
absence of a solid understanding of
genetics, its clinical applications, and
its pastoral implications, it would be
difficult for pastoral counselors to
interact with professionals working in
genetics, to carry out appropriate referrals,
or to counsel congregants confronted
with genetics-based anomalies.
The informant highlights a point
often made in the interviews, namely,
that the professional credibility of pastoral
counselors is commensurate with
their general knowledge of patterns of
inheritance and their familiarity with
the physical and social ramifications of
any particular genetic condition.
In some limited situations when
the pastoral counselor and patient come
from a religious tradition that is very
directive about what actions are
approved or proscribed, the pastoral
counselor's genetics knowledge base
must be greater than that of religious
peers. One respondent who is a clinical
geneticist explained, "I have been heavily
involved with decision-making
because of Jewish law . . . self-mutilation
is forbidden. Therefore, the question of
how much validity to give to prophylactic
success of mastectomies becomes a
part of the decision-making process.
And because I am actively involved in
the scientific area . . . I hold a pastoral
position. I have a large number of such
questions that come in regularly by
phone and by email."
Knowledge of Psychological and Social
Consequences
Beyond the medical facts, pastoral counselors
can provide accurate information
about the psychological and social
considerations that a person with a
genetic diagnosis and his or her family
will face. Many theological issues related
to genetics initially arise in conversations
when the person with the genetic
condition or a family member articulates
the problems in terms familiar to those
who grasp the psychological dimensions
of genetic disorders. For example,
some genetic conditions create
circumstances that elicit a grief
response, an issue that trained pastoral
counselors have experience addressing.
Five prominent associations that
represent pastoral counselors have identified
the skills that are necessary for
professional healthcare chaplaincy, and
have created a gold standard for anyone,
including the clergy person, rabbi,
imam, and lay minister, who serves the
religious and spiritual needs of patients
and families.
Professional chaplains reach across
faith group boundaries and do not
proselytize. Acting on behalf of their
institutions, they also seek to protect
patients from being confronted by
other, unwelcome . . . forms of
spiritual intrusion. . . . They
provide supportive spiritual care
through empathic listening, demonstrating
an understanding of persons
in distress. Typical activities include:
- Grief and loss care
- Risk screening—identifying individuals
whose religious/spiritual
conflicts may compromise recovery
or satisfactory adjustment . . .
- Crisis intervention . . .
- Spiritual assessment
- Communication with caregivers
- Facilitation of staff communication
- Conflict resolution among staff
members, patients, and family
members
- Referral and linkage to internal and
external resources . . .
- Staff support relative to personal
crises and work stress . . .
These recommendations make it clear
that, in addition to understanding the
religious dimensions evoked by the
genetic condition, pastoral counselors
must possess a skill set needed by any
counselor working in health care.
Pastoral counselors will be focused
on dealing with religious coping; however,
they need to be aware of the psychological
needs of the patient and
family. As one informant put it, "Pastoral
counselors should have some sense
of human compassion and community
and hope." That said, "Pastoral counselors
can't and shouldn't handle all
diagnoses. When clinical depression or
violent behavior is an issue, psychiatric
referral is vital."
Pastoral counselors will also need
to be familiar with the ethical and social
issues that arise in cases of genetic diagnosis
and illness. Most obvious, and perhaps
what sets genetic disease apart from
other forms of illness, is the fact that
most genetic information is not only
about the patient but also about the
family. Genetic information has ramifications
for the parents who transmitted
the condition, present or future siblings,
and extended family members who
might also inherit the condition. This
sensitive genetic information can be
used to label people and to discriminate
in insurance, employment, and
other areas of social life. Thus, pastoral
counselors must understand the risks
associated with genetic privacy and confidentiality.
From an institutional perspective,
the existence of these issues
does not necessarily mean that schools
for professional education in genetics,
genetic counseling, social work, and
theology need to offer more bioethics
courses, but at a minimum it does
require more focus on the integration of
scientific, ethical, and pastoral issues.
Knowledge of Theology and Pastoral
Counseling
Several interviewees who were religious
professionals pointed out that the religious
issues raised by genetics are not
applicable only to genetics. Pastoral
counseling issues that arise in genetics
are transferable in large measure to
non-genetics contexts, for example, to
issues raised by death, dying, and chronic
illness. Anyone who is afflicted with
some kinds of chronic illness in childhood,
early adulthood, or later life will
potentially face eclipsed possibilities in
career and family life, and may face
functional impairment. Whether or not
the cause of the chronic illness is genetic,
the patient or family might reveal a
range of religious responses and questions,
including anger at God, bargaining
with God, seeking healing from God,
and attempting to understand God's
will. Those affected might ask whether
the condition is punishment from God
or results from the sins of the parents, or
why an all-good God allows suffering.
These religious responses and
questions are commonly occasioned by
illness and the prospect or reality of
death, and each religious tradition
responds in a manner informed by its
sacred texts and traditions. Consequently,
pastoral counselors who are
working with patients and families from
their tradition need to know enough of
the tradition to theologize and apply it to
the particular circumstances of the
patient and family. Such education
would include abilities to connect the
medical facts with ethical concerns and
principles from the religious tradition,
and to apply them effectively in the concrete
pastoral situation. The pastoral
counselor should be aware of whether
the religious tradition has already
addressed the issue comprehensively or
in part. One Muslim respondent noted,
for example, that imams need to be
aware of positions taken by the Islamic
Medical Association of North America so
they can avoid giving inappropriate guidance
to families.
Those interviewed also wondered
whether there are theological and pastoral
counseling issues that are unique
to genetics. Interviewees most frequently
identified ethical mandates that arise
out of a particular tradition, for example,
Roman Catholic perspectives prohibiting
abortion and artificial means of procreation
such as in vitro fertilization.
While those interviewed were less certain
about the ethical mandates of other
religious traditions, there were questions about whether specific elements of
Judaism, such as Orthodox Judaism,
had ethical mandates prohibiting marriage
between persons who carry lethal
genetic conditions. In these cases some
interviewees said they thought it necessary
for pastoral counselors either to
know these particular ethical prohibitions
or to know from whom to obtain
relevant information. The few comments
made did not suggest that pastoral
counselors need to know world
religions, but rather that they should
know the limits of their knowledge and
be honest with patients and families
about those limits.
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Second Opinion #11
Publisher: Park Ridge Center, Chicago
Date: April, 2005.
ISSN: 0890-1570
105 pages.
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