Findings
Genetics and Pastoral Counseling: A Special Report
by Philip J. Boyle
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OVERVIEW
INTRODUCTION
I had a case where I was called to the
pediatric intensive care unit and
greeted by a dad who said, "Our baby
of nine months died of a genetic
health problem in a Boston hospital
and I turned my back on G-d." And
before the child died the mother was
pregnant with twins. Now they are in
the pediatric intensive care unit
because one of the twins has the same
genetic heart defect. So the parents
did not find out about the genetic
heart conditions until after the death
of the first child and she was already
pregnant. And he said to me, "I went
through the death of one child without
G-d and I don't want to go
through the death of another child
without G-d and I don't know how I
am going to find G-d and reconnect
with G-d, but I am going to need a lot
of help." I have dealt with similar
parents who reject G-d saying, "If
G-d is going to cause this much suf-
fering in death, then I am just going to
reject G-d." As a chaplain you never
know what will turn them one way or
the other, but it has to be addressed as
part of their healing.
—An interviewed chaplain
With the first draft of the map of
the human genome complete, forecasters
predict that during the next decade hundreds
of genetic tests and therapies will
be available, will be integrated into the
healthcare delivery system, and will have
a cascading effect. The increase of genetic
diagnosis will bring with it a host of
medical and moral options, all of which
will carry serious social and religious
implications, as the chaplain's story illustrates.
Today's thousand-plus clinical geneticists and two thousand genetic
counselors will barely be able to keep up
with medical aspects of genetic counseling,
and they will probably be unable to
meet the religious and spiritual needs
evoked by the new technology. Patients,
families, and genetics professionals will
turn to pastoral counselors (a term used
here to encompass a broad range of persons
providing pastoral or spiritual care
and counseling, e.g., Christian clergy,
imams, rabbis, deacons, chaplains, and
nonordained lay ministers); they will also
wonder whether these pastoral counselors
have the education and skills to
meet the growing need. The study discussed
in this article explored the kinds
of pastoral counseling currently offered
and asked what needs to be done to enhance the role of pastoral counseling
in responding to genetics issues.
The goal of this project was to
identify the nature and extent of the
pastoral counselor's role in dealing with
the range of genetics issues. Specifically,
this research examined
- Whether and how pastoral counselors
might help individuals cope
with the ethical and religious issues
that arise in genetic diagnosis and
treatment
- The knowledge and skills necessary
for pastoral counselors to serve
effectively in genetics cases
- The institutional and professional
factors that hinder or facilitate pastoral
counselors' involvement in
genetics issues
The initial method for achieving
the goal was to have geneticists, genetic
counselors, and social workers who
work with persons with genetic conditions
articulate what role they thought
pastoral counselors could helpfully play.
The study was expanded to have pastoral
counselors who work with genetics
cases articulate what they found helpful,
harmful, and unique in working with
genetics issues. With the use of national
telephone focus groups, 17 in all,
more than 140 professionals (including
geneticists, genetic counselors, social
workers, and pastoral counselors) were
interviewed about the questions listed
above. Interviewees were asked to talk
about pastoral counselors, a group that
in their experience included clergy, pastors,
rabbis, imams, chaplains, deacons,
spiritual counselors, and nonordained
lay ministers. Consequently, this study
uses the term "pastoral counselors" in a
generic sense to designate a range of
religious professionals who serve the
religious needs of all faiths. Most interviewees
were unaware that the term
pastoral counselor can refer to a specific
group of professionals with distinct
credentials and competencies.
FINDINGS
The range of professionals who
study the social, ethical, and religious
implications of the human genome project lacks evidence about the nature
of pastoral counselors' involvement in
genetics counseling, healthcare professionals'
expectations of pastoral counselors
and their roles, and the types of
obstacles and opportunities that pastoral
counselors encounter. This study
adds qualitative evidence to fill in
these gaps in understanding, and provides
baseline data for reconceptualizing
policies and practices that address
pastoral counseling in relation to
genetics.
Problems Identified
Those interviewed recounted an array of
problems and obstacles, most notably:
- Uncertainty about the identity and
nature of pastoral counseling and
who is qualified to provide the service
- Conflicting expectations about the
level of understanding in genetics
that a pastoral counselor needs, and
variation in the level of skills and
experience deemed necessary for
practice in pastoral counseling
- Turf wars over the extent and limits
of pastoral counseling practices in
genetics-related cases
- Patterns of practice by clinical
genetics professionals that reduce
the likelihood of involving pastoral
counselors in genetics cases
- Unhelpful stereotypes in which
clinical genetics professionals are
perceived as nondirective in counseling
and pastoral counselors as
always directive. Other stereotypes
frame religion as simplistic and
monolithic in its approach to ethical
norms and religious responses,
and assume that religious traditions
share a single, extensive view about
how to address the religious and
spiritual issues raised by genetic
diagnoses.
- Interprofessional relations that are
sometimes fueled by mistrust,
based, for example, on long-standing
suspicions between science and
religion
- Institutional barriers in the form
of suboptimal hiring practices and
inadequate funding for pastoral care
services
Recommendations
Among their more salient recommen-
dations, the interviewees highlighted
the following:
- Healthcare institutions ought to utilize
only pastoral counselors who
have the professional education,
skills, and competencies recommended
by professional associations
involved with pastoral
counseling. Clinical genetics professionals
ought to refer only to
pastoral counselors who are known
to have the requisite qualifications.
- Pastoral counselors need to consider
what education and skills are
needed for dealing with genetics,
and clinical genetics professionals
need to consider their own educational
deficiencies in understanding
the nature and content of pastoral
counseling and its relationship to
genetics questions.
- Professional associations of pastoral
counselors should reexamine
whether existing credentialing proprocesses
will adequately address the
spiritual and religious issues occasioned
by the increasing number
of genetic diagnoses.
- Clinical genetics professionals
should develop a rudimentary
understanding of issues associated
with religious coping, including
a capacity to assess patients' needs
for pastoral counseling and determine
how and to whom such
patients should be referred.
- Schools offering theological and
pastoral education, and national
and regional denominational organizations
(e.g., dioceses), should
consider providing continuing education
programs on pastoral counseling
skills, and should collaborate
with clinical genetics professional
organizations, medical schools, or
healthcare institutions to provide
education in clinical genetics.
THE STUDY
BACKGROUND
In the past ten years, the use of
genetic screening and diagnostic testing
has grown exponentially. The completion
of the Human Genome Project
(HGP) will, according to the Institute of
Medicine's Committee on Assessing
Genetic Risks1 (hereinafter "the Committee"), increase even further our ability
to conduct predictive testing for
monogenic, late-onset disorders such as
Huntington's disease, and susceptibility
testing for late-onset disorders involving
complex genetic-environmental interactions,
such as breast cancer. Society
can also expect more testing of embryos,
fetuses, newborns, and prospective parents.
As a result of the HGP, the next
decade will see testing to identify the
genetic components of disease and will
see a rapid increase in the number of
tests available to detect a growing number
of illnesses. Test kits and diagnostic
products will become readily available to
the public. The Committee notes that
commercial and academic "genetic testing
services" will probably offer their
products without approval from the Food
and Drug Administration (FDA). "Multiplex"
tests that can detect simultaneously
the presence of numerous genetic
markers for disease, carrier status, and
susceptibility have already emerged. In
the face of this explosion of knowledge
and capacity, there has long been a
question whether there will be enough
trained individuals to provide education
and counseling.2
The number of trained genetic specialists
is still relatively small. The Directory
of Board Certified MedicalSpecialists lists some 1,000 medical
geneticists in the United States.3 In addition,
approximately 1,800 professional
genetic counselors practice in the United
States, with about 145 new counselors
graduating each year.4 It is widely
recognized that this number is insufficient
to meet the increased demand for
genetics education and counseling that
increased numbers of genetic tests,
screens, and interventions will generate.
A 1998 report shows the following
regional distribution of genetic counselors
in the U.S.: 7 percent are in New
England; 29 percent in the Mid-Atlantic
States; 10 percent in the Southeast; 20
percent in the Midwest; 9 percent in
the Mountain/Southwest region; and
20 percent on the West Coast.5 The combination
of the increased availability of
genetic services, lack of genetic counselors,
and uneven distribution of genetic
counselors nationally, supports the
call for new models of counseling service
delivery.6 If, for example, there will
indeed be genetic tests for an increasing
variety of monogenic and complex diseases, and for susceptibility to more
common disorders such as breast, colon,
and other cancers, who will provide the
counseling that those undergoing these
tests—and receiving the results—will
need? The Committee concludes that
these developments will require the
design of other models of service delivery
beyond those that have until now
provided genetic testing and screening.
Convinced that the point of genetic services
delivery will increasingly be primary
care practice, the Committee
envisions the growing involvement of
pediatrics, obstetrics, internal medicine,
and family practice in providing genetic
testing, screening, education, and
counseling in a variety of individual
and group practice settings.7
As the number of physicians
involved in genetic testing and screening
expands, their professional inclination
to advise and treat may compromise
autonomous, well-informed decision
making by patients, particularly when
the disorder being tested for has no
immediately available treatment.8 To
counterbalance this tendency, a broader
array of counseling and educational
services, made available through less
traditional models of service delivery, is
essential to meet the needs of a wider
spectrum of the population.9 As the
Committee observed, "The social and
cultural meaning of class, race, ethnicity,
and religion all impact on genetic
testing and reproductive decision making."
10 For these reasons, genetic counseling
should respect the culture and
convictions of the client. The involvement
of the client's faith community,
possibly through the presence of a pastoral
counselor such as a Christian clergy
person, rabbi, imam, or nonordained
chaplain, is one way to achieve this end.
Given the revolution already under
way in the delivery of genetic services,
there are compelling reasons to consider
why and how pastoral counselors can
be significantly involved. As the number
of available genetic tests increases, so will
the number of those who receive the
test information and wonder about its
religious and ethical meaning.
The potential number of pastoral
counselors who could address issues
related to genetics is remarkable. The
number of ordained clergy in the
United States alone exceeds one half
million: 45,000 are Roman Catholic,11
488,000 are Protestant and Orthodox
Christian,12 4,600 are rabbis for the four
major branches of Judaism,13 and
approximately 980 are imams.14 Hundreds
of clergy and other spiritual leaders
serve Buddhist, Hindu, Sikh, and
other immigrant religious groups,
although figures are not readily available.
More important in North America,
nearly 10,000 of the professionals listed
above identify themselves as working
in health care as they participate in five
of the largest organizations of chaplains
and pastoral educators: the Association
for Clinical Pastoral Education
(approximately 1,000 members), the
Association of Professional Chaplains
(approximately 3,000 members), the
Canadian Association for Pastoral Practice
and Education (approximately
1,000 members), the National Association
of Catholic Chaplains (approximately
4,000 members), and the
National Association of Jewish Chaplains
(approximately 400 members).15
Beyond the remarkable size of this
potential work force, other factors suggest
why and how pastoral counselors
might be able to assist persons with
genetic conditions. First, as the number
of cases grows, more patients and health
professionals are likely to involve pastoral
counselors. Recent research indicates that pastoral counselors are
increasingly being called upon to advise
patients and professionals in healthrelated
areas. Thus they have the potential
to affect knowledge, attitudes, and
behavior related to health and its religious
and spiritual implications.16 Moreover,
a review of the literature shows
that pastoral counselors are in a strategic
position to offer health-related information
and counseling.17 Rabbis, priests,
imams, and ministers enjoy a natural
entree in the genetics-related context
when they counsel couples who intend
to marry, have given birth to an impaired
child, or have a genetic illness.18 In
addition, the research shows that congregants
have come to expect help in
health-related problems from their clergy,
particularly when there has been a
prenatal diagnosis of abnormality.19
Research indicates that congregants can
benefit from and, increasingly, are looking
for spiritual and moral assistance to
help them apply knowledge of human genetics and employ reproductive technologies
in their own situations.20
Pastoral counselors offer several
important benefits to patients and families
who struggle with genetic diagnoses
and conditions. First, pastoral counselors
provide the opportunity and the religious
resources that permit individuals
and their families to seek answers to
moral and spiritual questions raised by
genetic testing and illness. The questions
vary, depending on the severity of
the genetic condition and when during
the life span it affects the patient or family.
Couples contemplating marriage and
starting families might reconsider marrying
if one or both of the partners carry
a lethal or debilitating gene, or one that
could be passed on to the next generation.
If they marry and conceive, they
may consider prenatal diagnosis and
face questions about abortion; they may
also consider alternative means of conceiving,
such as in vitro fertilization. A
couple giving birth to a child afflicted
with a lethal or debilitating genetic illness
might have to struggle with termination
of life-sustaining treatment or
caring for a disabled infant.
Children and young adults with
genetic disabilities, some of which stem
from lethal conditions, will have to face
eclipsed futures. Couples might face
marital problems occasioned by genetics-
related issues.21 Older adults with
late-onset genetic disorders will struggle
with infirmity and sometimes with endof-
life decisions. Therefore, genetic conditions
will afflict patients and families
across the life span and will pose unique
moral and religious questions, depending,
for example, on the time in life
when the affliction emerges, on spiritual
maturity, and on life circumstances
(such as being married or not). Pastoral
counselors can help patients and
families integrate their religious worldview
with the implications of the genetic
condition.
Second, pastoral counselors can
support and complement the work of
genetic counselors. While both professions
help patients and families cope
with grief, a pastoral counselor engages
patients and families in conversation
about the moral, religious, and spiritual
meaning of the grief and can help
them find support from their religious
tradition. Pastoral counseling can also
integrate the patient's or family's religious
priorities with the medical treatment
plan and thus lessen the potential
for conflict and stress. In some cases
information provided by genetic counselors
for purposes of informed consent
will differ from religious information
that a pastoral counselor might offer
and a patient might want to consider.
Third, pastoral counselors help
connect individuals and their families to
larger faith communities that can provide
support.22 While genetic diagnoses
are made within hospitals, clinics, and
physicians' offices, patients and families
return to local communities, where they
spend the majority of their time, to find
resources for coping and making meaning.
Pastoral counselors help patients
and families draw on the resources of
their local congregations and support
networks.
Fourth, as patients and families
return to their communities, pastoral
counselors associated with congregations
are more available and accessible
than healthcare professionals. Pastoral
counselors can help congregants appreciate
how their religious faith, of whatever
depth, can influence decisions they
might make under stress. It is important
not to underestimate the significance
for a person of religious faith that the
birth of a child with Down's syndrome
or Tay-Sachs disease may have. Also, it
is important not to overlook the anxiety
of the expectant mother whose decision
to undergo amniocentesis may have
created doubts in her own mind about
her fidelity to her religious beliefs. After
genetic counseling, pastoral counselors
play a positive role by supporting the
work of the genetics counselor, thereby
securing the religious well-being of congregants
who find themselves dealing
with genetics-related issues in their personal
and family life.23
Fifth, research shows that ethical
and religious counseling by an informed
pastoral counselor can add a dimension
to the genetic counseling process
that genetic counselors and members of
the medical community alone cannot
provide.24 This dimension is counseling
that moves beyond the medical discussion
of what happened, to a religious
and spiritual discussion of why it happened.
For example, genetic counselors
explain birth defects at a chromosomal
or metabolic level. But explanations
of this sort can leave patients looking for
more because, although they know what
has happened, they do not know why it
has happened in the larger, possibly
transcendent, sense of "why."
This sense of dissatisfaction may
not disappear when the genetic counselor
reassures parents that nothing they
did contributed to the genetic problem:
it was "just one of those things." When
parents find no comfort in a random statistical
process as the explanation for the
genetic problem of their child, they frequently
resort to religious explanations.25
The case of a couple who lost a
child to anencephaly illustrates the critical
difference. The genetic counselor,
by way of explanation, had described
the fetal development of the brain and
spinal cord, explained how the level of
alpha-fetal protein was increased in the
amniotic fluid and maternal blood, and
pointed to this process to indicate what
had caused the child's abnormality.
That the physiological explanation was
less than satisfying is apparent in the
comment of the mother who, when
asked subsequently what had caused
the anencephaly, replied that God had.
By allowing the death of her child, the
mother explained, God had taken care
of the mistake.26 Religious explanations
of this kind are quite common.27
For instance, parents who deal with a
prenatal genetic problem frequently ask
questions that imply God's involvement
as a cause of the problem and a source
of its solution. They ask questions with
the understanding that God expects the
parents to do something, even though
what to do may not be clear at the
moment.28
One can explain the difference
between what genetic counselors say
and what parents say about the same
genetic anomaly as a matter of seeing
from differing perspectives and finding
different meanings in the same event.
Operating out of a self-perceived nondirective
role, genetic counselors are
inclined to omit discussion of "final"
causes of genetic disorders as professionally
inappropriate. In contrast,
many parents trying to live their lives in
the presence of genetic anomalies and
their implications seem compelled to
search for ultimate answers.
Parents frequently consider their
children affected by a genetic condition
as tests set before them by God;
they do not view the child in the same
light as genetic counselors do. Ultimately,
genetic disorders are not, for
many parents, the result of impersonal,
probabilistic forces. They are neither
arbitrary nor anonymous; rather, they
are specific problems affecting particular
families, and they require particular
explanations.
From the perspective of faith,
genetic diagnoses and conditions press
patients and families at a fundamental
level to consider their role and participation
in creation.29 And it is in this
context that people facing choices about
things that earlier were assumed to
belong exclusively to God will confront
the theological and moral dilemmas
posed by genetics.30 If they are people of
faith, a fundamental question for them
may be how they should conceive and
bear children. Should they test the
fetus? Depending upon what the tests
reveal, should they terminate the pregnancy?
Is it still possible for people of
faith to see fetal development as a sacred
mystery, and childbirth ultimately as a
gift of God's creation?31
Behind these questions lies a tension
between seeing themselves as made
in the image of God and as merely the
sum of their genes. There is also the
tension between wanting only the best
for their children and the disposition to
accept them as they are, with whatever
abilities and disabilities they may have.32
While genetic counselors may recognize
such distress and sympathize with
their patients, they may not view sympathy
as something to account for in
their professional capacity as counselors.
33
Pastoral counselors are often
uniquely qualified to help individuals
and their families resolve these tensions
and answer questions of ultimate
meaning. In general, genetic counselors,
medical geneticists, and physicians
do not have the professional
training to help answer questions that
link one's genetic decisions to one's
religious faith. But since the desire for
a broader-than-medical context is common among those who confront genetic
anomalies, it would greatly assist
them if some component of the counseling
process recognized and responded
to that desire.
Sixth, as genetic testing becomes
more commonplace, healthcare professionals
and organizations would be wise
to consider what may happen to patients
if pastoral counseling is not provided.
Will individuals who might otherwise
benefit from genetic testing stay away
from it on religious grounds? What are
the long-term psychosocial consequences
for individuals when they undergo genetic
testing but are denied the opportunity
to engage in guided reflection with a
pastoral counselor on the religious meaning
of the medical intervention? While
this research did not answer these questions
directly, it did provide a sense of the
dimension that pastoral counseling
brings to the care of patients and families
with genetic disease.
A Snapshot of Current Practice
If pastoral counselors are a potential
source of service in the rapidly expanding
genetics field, interview data from
our study and others suggest varied
expectations and practices on the part of
pastoral counselors and of clinicians
who might refer patients to them. A
snapshot that the 140 interviewees provided
of their activities depicts no uniform
practice or expectation regarding
the nature and extent of pastoral counseling
services in genetics. Wide variability
exists in how pastoral counselors
become involved and how they subsequently
participate.
How pastoral counselors become involved
Pastoral counselors' opportunities
to participate in genetics-related cases
arise in four ways: they are expected to
participate as staff members of healthcare
institutions; they are invited by
healthcare professionals; they proactively
intervene with the patient and/or
family; or they are sought out by the
patient or family. When they are members
of an institution's staff, pastoral
counselors experience the fewest barriers,
since in institutions that employ
them there are standing expectations
that patients will receive spiritual and
religious care. Nevertheless, while an
institution may employ a pastoral counselor,
there is no guarantee that the
clinical staff will recognize a patient's or
family's need for pastoral counseling in
genetics-related situations. Some interviewees
reported that pastoral care was
included as a participating discipline
during daily rounds within teaching
hospitals. Some hospitals with large
pastoral care staffs expect that chaplains
will visit all inpatients, a fact that
makes it more likely that inpatients suffering
from a genetic condition will
receive pastoral care.
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Second Opinion #11
Publisher: Park Ridge Center, Chicago
Date: April, 2005.
ISSN: 0890-1570
105 pages.
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