Findings
Genetics and Pastoral Counseling: A Special Report
by Philip J. Boyle
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Genetics professionals in health care who were interviewed speculated about the amount of theological education that they as professionals need to have. A few believed that clinical genetics professionals should not be involved with anything religious, either because it extended beyond their professional competence or, as one respondent noted, because "religion was destructive and undercut their ability to appropriately treat patients." A more frequently expressed view was open to the usefulness of religion, and maintained that genetics professionals need enough familiarity with what counts as a religious issue to allow them to refer patients appropriately. A few expressed personal interest in understanding how religious coping differed from other forms of psychological coping. They believed that if they understood this difference they could explain it to patients and families and, in turn, be better able to make referrals suited to the patient's need. In sum, the original research question framed the issue as that of what pastoral counselors need to know about theology and pastoral counseling; however, a few interviewees restated the question by asking what theological and pastoral counseling information genetics professionals in health care need to know.

Skills and Competencies
All the focus groups in one way or another described the skills and competencies that delineate the best practices of pastoral counselors. Many of the criteria they identified are similar to those agreed upon by the consensus group of pastoral care associations listed above. It is important to note that some of the best practices suggested below might run counter to practices of particular religious traditions or to pastoral counselors' professional self-perception and sense of their obligations. While those interviewed painted a broad consensus, some criteria they proposed would neverthe-less be controversial in religious denominations whose theologies are less sympathetic to religious pluralism.

First and foremost, most interviewed thought that pastoral counselors need to be empathetic listeners, which they frequently described as being a "good listener," "compassionate," and "sympathetic." As one interviewee put it: "hearing the loss of [the family and] trying to bring some peace [to the situation] or to manage it . . . being able to hear the complexity and to be patient with [the] patient's process." Often this approach requires "knowledge of [the] family and individual's background." Some other features of empathetic listening include gestures ("holding patient's hand, being supportive") and perhaps participating with the patient and family in the informed consent process ("listening to the same information [the] patient gets so that discussion is possible later"). One interviewee noted that building bonds with families requires "being present every step of the way": "Availability at all hours builds trust" with patients, families, and clinical genetics professionals. One religious professional with credentials in pastoral counseling stated that empathic listening requires "pastoral openness, [an] ability to be teachable." The interviewee added that pastoral counselors need "to meet people where they are" and to be "open-minded" by not prejudging the situation because of prior experience or preconceptions of the problem and its resolution.

Several of those interviewed thought that listening also entails a translating function. One person called it "helping families understand doctors' language." Under certain circumstances, such translation might mean "helping families to accept medical recommendations to stop life support."

Many interviewees believed that pastoral counselors could help patients and families cope with suffering and loss, and expected that at times this role would include crisis counseling: "Help [the] family to come to grips with loss and with the sequence of events that lead to loss." Generally, as one respondent noted, this process entails "asking patients/couples what kind of meaning- making they want to come out of that experience, be it a termination (e.g., abortion) or something else." Another gave this example: "Efforts to make meaning out of shortened lives—stillbirths." Such coping support was aimed at bringing some resolution to the patient or family: "helping families to accept," as one interviewee noted. The task is not simply to bring meaning or resolution, but also "helping [the] family and individual feel supported and comfortable with whatever decision they may have made." As some pastoral counselors emphasized, achieving this aim may require long-term spiritual support after the crisis, for example, helping a couple cope with the death of a child due to a genetic disorder. A limited number of those interviewed voiced a need for the pastoral counselor to conduct an assessment of the patient and family as the pastoral counselor provides help in coping.

Informants were at an impasse over one crucial element of pastoral counseling skills, namely, whether to be directive or nondirective. The vast majority of clinical genetics professionals and some pastoral counselors agreed with the professional chaplaincy associations' consensus statement on healthcare chaplaincy, and insisted that pastoral counselors' approach be nonjudgmental. They agreed that pastoral counselors could assist patients and families through ethical discernment but that it should be "nonjudgmental and nondirective." At a minimum, this approach requires that a "counselor shouldn't impose personal opinions about decision- making on the at-risk or diagnosed person." Another respondent stated that pastoral counselors need to be "confident and comfortable enough to be supportive of family and individual decisionmaking . . . able to validate feelings even if unable to condone decisions." A few thought that a nonjudgmental approach requires "supportive and compassionate [response] even if [a] family's decision conflicts with its church's position."

Several interviewees objected to a nonjudgmental stance by pastoral counselors. Orthodox and Conservative rabbis and an imam noted that religious believers in their traditions sought directive counseling as a means of coping. Several geneticists also mentioned that families they treated were comforted when their decisions were confirmed by religious leaders from their traditions.

Several of those interviewed highlighted important caveats in the tension between directive and nondirective pastoral counseling. The fact that the patient or family come from a religious tradition that is directive does not mean they desire direction. Professionals will need to determine sensitively whether particular patients and families want such directive religious counseling. Most interviewees believed that if patients or families desire pastoral counseling that is directive, they usually have religious connections and know to whom to turn. If the patient or family desire directive counseling but they do not know a pastoral counselor from their tradition, the referring professionals need to make certain that, for example, the rabbi or imam has a reputation for knowing the religious tradition and rulings.

Another caveat related to directive counseling is best summed up in a story recounted by an interviewed geneticist. A clergyman who had counseled a couple through their child's long-term sickness and eventual death now counseled them as they considered whether to have another child and whether to request prenatal diagnosis. During the long-term relationship he changed his view to one that was at odds with his religious tradition. He counseled the couple that "abortion would be a sin [but] that he would absolve it for them." Such stories suggest that presuppositions about whether a counselor from a given tradition will be directive, or a patient from that tradition will seek directive counseling, need prudential examination by clinical genetics professionals.

An ability to support the professional genetics staff was frequently identified as an essential skill for pastoral counselors. Geneticists, genetic counselors, and social workers voiced the need for spiritual support and guidance when they were required to present options to patients and families but there seemed to be no good and, in fact, only tragic options. Some of those interviewed welcomed a proactive approach by pastoral counselors. They felt that pastoral counselors should ask the care team: "What could we bring?" "What would be supportive?" "What are ways we could be part of the team?" Some genetics professionals looked to pastoral counselors to network, not only among the team and with the family, but also within the wider community. A few wanted pastoral counselors to provide appropriate community referrals and to be a bridge with community pastors.

Interviewees named some skills and competencies of pastoral counselors that were distinctly religious and set them apart from other counselors. When in doubt about which skills were necessary, one respondent stated that "spiritual qualities [are] more important than genetic competence—though it would be nice to have both." The identified religious skills included conducting religious assessments and counseling, and conducting religious rituals. The religious aspects of coping mirror psychological coping. Some informants pointed out that pastoral counselors "help people to draw upon the religious connections that they do have." Another stated that "the biggest help is providing religious insight and guidance to patients— interpreting a patient's religious background in light of [the] decision that's facing him or her." For example, by addressing the issue of theodicy, pastoral counselors "help people to understand why bad things happen to good people." Overall, pastoral counselors' "discussion of religious beliefs, faith, and direct use of religion helps make sense of [the] situation." In addition to religious meaning making, pastoral counselors, as one religious professional noted, "give permission to patients to do this or that religiously." She went on to say that such permission giving "affirms a patient's decision making in the context of God's plan."

Another decidedly religious aspect of pastoral counseling is helping clinical genetics professionals respond more sensitively and appropriately to patients' religious and spiritual needs. Several pointed out that pastoral counselors provide genetics professionals with language and tools to help patients with these issues. Pastoral counselors "educate and sensitize physicians about the religious and spiritual issues that trouble patients." Also, "some genetic counselors have found clergy helpful in educating them about the cultural and religious values of specific traditions, which form the basis of their patients' worldviews." Beyond educating and translating for colleagues, trusted pastoral counselors can sensitively inquire about advice given by other clergy—for example, "where [a] pastoral counselor investigates whether it's ‘safe' for a patient to seek pastoral services in the local community."

Many interviewed believed that pastoral counselors should be involved in religious rituals for the patient and family. Most of the best practices mentioned were characterized by rituals that were flexibly adapted to the circumstances. For example, blessing babies before death and ritual praying with fetal remains were important for families. One clinician highlighted the need for religious rites to accommodate various conditions. The clinician recounted the story of two teenage Jewish boys with renal dystrophy, a progressive genetic neurological disorder that left them spastic and wheelchair bound. A rabbi would not allow one of the boys to go through a Bar Mitzvah, and thus compounded his sense of loss, while another rabbi came to the home of the second boy and conducted the ritual with a prayer shawl, prayers, and singing.

CONCLUSIONS AND RECOMMENDATIONS
Until this study, academic professionals who consider the social, ethical, and religious implications of the human genome project lacked evidence about the nature of pastoral counselors' involvement in genetics; healthcare professionals' expectations about pastoral counselors' roles; the types of barriers that impede effective use of pastoral counselors; and approaches needed to better integrate pastoral counselors into genetic services. This study adds qualitative information to fill in the gaps for the field, and provides baseline data for reconceptualizing policies and practices that address pastoral counseling in relation to genetics. None of the barriers identified by those interviewed is easily overcome. Realizing the opportunities for improvement will require the participation of all those who have a stake in better integration, including professional societies of geneticists, genetics counselors, social workers, pastoral counselors, and pastoral educators, as well as healthcare institutions. A review of the barriers and possible remedies suggests, however, that some stakeholders have greater responsibility for furthering the needed integration.

Identity
As the interviews demonstrate, there is no clear public perception about who is a pastoral counselor with the skills and competencies to address the religious needs of those facing genetic diagnoses and conditions. This confusion should lead all stakeholders to make distinctions within the large class of professionals who can serve as pastoral counselors. The simple designation of a person as a cleric, rabbi, imam, chaplain, pastor, deacon, lay minister, or spiritual advisor does not necessarily qualify the person to provide pastoral counseling for persons and families with genetic conditions. Clinical genetics professionals who are referring patients and families should assess carefully whether the pastoral counselor has experience, or a reputation for providing competent care. They should refer only to pastoral counselors who are known to have the requisite qualifications. Healthcare institutions ought to utilize or employ only those pastoral counselors who have the professional education, skills, and competencies commended by the five prominent professional associations involved with pastoral counseling. Pastoral counselors in healthcare institutions who make external referrals to pastoral counselors should select religious professionals who have equivalent skills and competencies.

Knowledge and Skills
Clinical genetics professionals interviewed consistently said that they would not use pastoral counselors who were perceived to have an inadequate understanding of clinical genetics or insufficient pastoral skills, because they could do more harm than good. The perception, and perhaps the reality, is that a majority of those designated as pastoral counselors are underprepared in knowledge of rudimentary genetics and genetics-related prognosis. Also, many in the large group of pastoral counselors may have insufficient training or experience in pastoral counseling and in theologizing about the pastoral situations that arise in relation to genetic diagnoses and conditions. The only class of pastoral counselors who could be viewed with reasonable confidence to have the requisite knowledge and skills are those who have spent hours in clinical pastoral education and who have worked in healthcare settings addressing the religious issues that arise in sickness, suffering, and grief.

The knowledge and skill problems identified were not limited to a lack of knowledge of clinical genetics and insufficient training in pastoral counseling. Rather, even with better educated and more experienced pastoral counselors, there would remain a significant translation problem in the relationship between clinical genetics professionals and pastoral care professionals. As noted by several of those interviewed, there are multiple stakeholders (e.g., patients, families, healthcare professionals, and pastoral counselors) looking at the same event but deriving multiple meanings from it—and holding differing expectations for pastoral care. Interviewees who discussed the issue agreed that genetics and pastoral care have incommensurable foci: genetics addresses the medical issues, and pastoral care the spiritual. While the two are inextricably bound, each professional group uses a different language, and knowledge of the genetics issues alone does not resolve the religious and spiritual issues.

A few of those interviewed voiced the opinion that the translation problem will not be resolved simply by having pastoral counselors develop a greater knowledge base in clinical genetics and gain more pastoral experience. In order to provide competent care to the whole person, clinical genetics professionals will have to understand fundamental issues in religious coping, and learn both to assess patients' needs for religious counseling and determine how and to whom these patients should be referred. Instituting an assessment process will mean abandoning the practice of never intruding into the "private" area of a patient's religious needs. One genetics professional noted that she has made spiritual assessment a structural part of the overall assessment, and regularly probes patients' spiritual needs and supports related to genetic testing and diagnosis.

The responsibility to improve the knowledge and skills of all involved is wide ranging. Those providing theologi- cal and pastoral education should examine the recommendations regarding skills in facilitating religious coping made by the leading pastoral care professional groups and evaluate whether their training programs are adequate. Schools of theological and pastoral education, and national and regional denominational organizations (e.g., dioceses), should consider the need for 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. Clinical genetics professional organizations should consider offering their members educational programs on identifying and assessing religious needs of patients and on the nature and content of pastoral counseling.

Practice Patterns
Those interviewed clearly indicated that practice patterns of clinical genetics professionals very much affect whether a pastoral counselor will ever reach a patient in the inpatient setting. The previously suggested practice of making spiritual assessment part of the overall assessment would go a long way toward overcoming such barriers as the practice of referring to a pastoral counselor only if there is a crisis, or never giving patients an opportunity to bring up religious matters. Referral patterns will be a more difficult issue to address, since clinical genetics professionals typically make referrals only to known entities. One respondent suggested that healthcare institutions or regional groups of clinical genetics professionals develop resource directories of skilled and competent pastoral counselors for potential referrals. Another respondent suggested that institutions need to build their own capacity to meet emergent needs. Institutions, for their part, need to examine existing practice patterns for evidence of teamwork. If capacity already exists but is underutilized, the institutions might examine whether there are any local barriers that impede better integration of pastoral counseling.

Interprofessional Relations
The barriers to better interprofessional relations are a complex mix of turf wars, unhelpful stereotypes, and, ultimately, mistrust. The turf issue that clinical genetics professionals observed was the overstepping of role boundaries by pastoral counselors in ways that might undercut the treatment of the patient (e.g., pastoral counselors' being inappropriately directive). This issue can be partially resolved if all professionals involved understand the nature and purpose of pastoral counseling, as well as the skills and competencies of pastoral counselors. Each group of professionals needs to know more about the language, training, and roles of the other. This study began with the assumption that pastoral counselors needed to know more about genetics. Some interviewees made clear that interprofessional relations would not improve until clinical genetics professionals learned more about religious and spiritual issues, in order to understand more about the worldviews of their patients, and also learned more about the actual and possible roles of pastoral counselors, in order better to recognize when referral to a pastoral counselor would be appropriate.

Developing an antidote to mistrust is a complex process and requires frank introspection regarding unhelpful stereotypes. Foremost among these is the view that pastoral counselors are directive in counseling, whereas geneticists, genetic counselors, and social workers are nondirective. As the professional associations of pastoral counselors recommend, pastoral counselors should help patients pursue patients' agendas and not pastoral counselors' agendas. There should be a frank recognition by all parties that in some limited instances there are denominations or portions of denominations that encourage directive counseling by pastoral counselors.

On the other hand, a few of those interviewed also pointed out that clinical genetics professionals are more directive than their self-perception admits. Respondents highlighted the fact that geneticists and genetic counselors who steer patients away from some or all pastoral counselors are in fact directive. Their professional understanding of themselves as nondirective is unlikely to evaporate anytime soon; however, an honest public dialogue about what forms of directive and nondirective counseling are appropriate in dealing with patients will go some distance toward eliminating the unhelpful stereotypes of pastoral counselors as directive and clinical genetics professionals as nondirective.

Another instance of labeling that obstructs more cooperative relations between clinical genetics professionals and pastoral counseling professionals is the view that science is complex and religion is simplistic. Of healthcare professionals interviewed, most invoked long-standing suspicions between science and religion. Clinical genetics professionals who participated in the focus groups frequently remarked that focus group conversations about the role of the pastoral counselor, and the depth of the topics related to religious coping, dispelled preconceptions about the simplicity of religious ideation. Only a small minority of participants left the conversations with a still-tightly-held view that religion was not only unhelpful but harmful to patients.

A distinct but related stereotype is the view that religious traditions share a single, extensive ethical and religious view about how to address the religious and spiritual issues raised by genetic diagnoses. Again the interviews surfaced a broad vision of the diversity of religious views within and among faith perspectives on issues raised by genetics. With both stereotypes of religion (as simplistic or monolithic), joint meetings of the professions, and public conversations about their respective roles, could enhance mutual respect and trust, and could be an important step toward better collaboration.

Institutional Barriers
Those interviewed drew attention to the fact that institutions that do not have the capacity to integrate pastoral counseling into genetics-related cases might be unaware of the lack. In those institutions that have recognized the need and have built capacity, several respondents stressed the critical role that professionals who are both clinical genetics professionals and pastoral counselors have played. Respondents singled out professionals who bridged the two areas of concern by translating religious issues into terms clinical genetics professionals could understand and value as important, and vice versa. Credible bridge figures, such as priests and rabbis who are also geneticists or genetic counselors, are critical to raising awareness and articulating expectations for all involved.

A significant institutional barrier to integrating pastoral counseling in genetics issues is the structure of the provision of services. Those interviewed repeatedly commented that pastoral services were provided largely through inpatient services; however, a large portion of genetic services are provided in outpatient clinics and physician offices to patients who have chronic conditions. While healthcare institutions can control the quality of pastoral counseling services within the institution, there is little control over quality in outpatient services. Pastoral counselors in the community who already have extensive obligations as community and congregational leaders will need incentives and educational programs if they are to develop the skills necessary to address genetics cases. Clinical genetics professionals— or those working at the federal level on the Human Genome Project— who conclude that skilled pastoral counselors need to be developed in the community will face the complex task of creating incentives and identifying resources and networks.

The lack of funding as a barrier is as much a function of the rapidly fluctuating healthcare economy as of the extent to which pastoral care is recognized as essential in treating and healing the whole person. The boom and bust cycles of healthcare financing will always provide a reason to reduce pastoral counseling services, and the cycle is well outside the control of any institution or profession. However, what is in the control of professional societies is whether they will utilize the ongoing opportunity to examine the role of pastoral counseling and the value that it brings to the wholistic treatment of persons with genetic conditions. Professional associations of pastoral counselors should reexamine whether existing credentialing processes will adequately address the spiritual and religious issues occasioned by the rise of genetic diagnoses.

A final institutional barrier to better integration of pastoral counselors in genetics cases stems from the suboptimal qualifications of some professionals who are hired. Healthcare institutions ought to utilize or employ only pastoral counselors who have the religious education and professional skills and competencies recommended by the major pastoral counseling associations.

The original aim of this study was to address a few simply stated issues: 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; and the professional and institutional barriers and opportunities that prevent or facilitate pastoral counselors' involvement in genetics issues. The answers identified were not as predictable as the research group first imagined.

The barriers are substantial. While there is a large reservoir of religious professionals working in many ministries, nonetheless there does not currently exist a large number of pastoral counselors with adequate education in clinical genetics and the training in pastoral counseling skills needed to address clinical genetics issues. Those who are adequately educated and trained are difficult to identify unless they are part of healthcare institutions or are known by the referring clinical genetics professional. Even if a work force of pastoral counselors educated and trained to deal with clinical genetics issues emerges, significant obstacles will remain because of prevailing practice patterns of clinical genetics professionals, their perceptions and ambivalences about the nature of religion, and their misgivings about the sometimes directive style of some pastoral counselors.

The study interviews revealed that change will not be a one-way street. Enhancing the participation of pastoral counselors in clinical genetics cases will require cooperation among and action by clinical genetics professions' educational institutions and societies. To echo one interviewee, the first step will be "for geneticists to understand the positive dimensions that religious coping can bring to the suffering and healing of patients and families."

ACKNOWLEDGEMENTS I am deeply grateful to the research team who participated in all the conference calls and in the analysis of the data. I am especially indebted to the co-principal investigator, Carol W. Booth, M.D., for her years of clinical genetics insight that guided the project not only clinically, but pastorally. Also, this research would not have been possible without the expertise and savvy of George I. Balch, Ph.D., of Balch and Associates, who made the focus group conference calls possible. My colleagues at the Park Ridge Center, Rabbi Gail Glicksman, Ph.D., and Paul Numrich, Ph.D., were invaluable in analyzing the thousands of pages of transcripts. Finally, one Advisory Board member, Barbara Bowles Biesicker, M.S., observed many of the focus groups and provided priceless guidance.

I am also appreciative of the generous commitment of time and the helpful comments offered by Advisory Board members, including: Audrey R. Chapman, Ph.D.; Rabbi Elliot N. Dorff, Ph.D.; Kevin T. Fitzgerald, Ph.D., S.J.; Philip J. Hefner, Ph.D.; Eric Thomas Juengst, Ph.D.; Karen Lebacqz, Ph.D.; Colleen Scanlon, R.N., J.D.; Ronald Cole-Turner, Ph.D.; and Olivia Masih White, Ph.D.
—Philip J. Boyle


NOTES
1. L. B. Andrews, J. E. Fullarton, N. A. Holtzman, and A. G. Motulsky, eds., Assessing Genetic Risks: Implications for Health and Social Policy (Washington, D.C.: National Academy Press, 1994).

2. See the 1975 report of the National Academy of Sciences, Genetic Screening Programs, Principles, and Research. Report of the Committee for the Study of Inborn Errors of Metabolism (Washington, D.C.: National Academy of Sciences).

3. According to the American Board of Medical Genetics, as of 2002 there were 1,226 boarded (M.D. or Ph.D.) clinical geneticists (http://genetics.faseb.org/genetics/abmg/abmgmenu.htm).

4. As of 2002 there were 1,410 boarded (masters trained) genetic counselors.

5. National Society of Genetic Counselors, Education, Certification and Regional Representation Statistics: Membership Data Base (Wallingford, Pa.: National Society of Genetic Counselors, 1998).

6. B. B. Biesecker, "Practice of Genetic Counseling," Encyclopedia of Bioethics, ed. W. T. Reich (New York: Simon and Schuster, 1995).


7. Andrews et al., eds.

8. Ibid.

9. Biesecker.

10. Andrews et al., eds.

11. The Official Catholic Directory (New Providence, N.J.: P. J. Kenedy and Sons, 2000).

12. E. W. Linder, ed., Yearbook of American and Canadian Churches (Nashville: Abingdon Press, 2000), 351.

13. This figure includes 1,800 Reform, 1,250 Conservative, 1,000 Orthodox, and 250 Reconstructionist rabbis. See Careers.yahoo.com/employment/ococ/ocos062.htm

14. I. Bagbym, P. Perl, and B. Froehle, The Mosque in America: A National Portrait (Washington, D.C.: Council on American- Islamic Relations, 26 April 2001). There were 1,207 mosques in the United States; of these, 81% had an imam.

15. L. VandeCreek and L. Burton, eds., Professional Chaplaincy: Its Role and Importance in Health Care, http://www.healthcarechaplaincy.org/publications/
publications/white_paper_05.22 .01, 22 May 2001, Section 2.

16. P. Routh, "Preparation of Ministers Competent to Minister," Theological Education 2 (1979): 102-104.

17. W. E. Wylie, "Needed Health Counseling Competencies of the Minister" (doctoral dissertation, University of Tennessee, 1981).

18. J. C. Fletcher, Clergy Involvement in Genetic Decision-making and Pastoral Care, ed. R. C. Baumiller (White Plains, N.Y.: March of Dimes Birth Defects Foundation, 1981).

19. R. C. Baumiller, "Clergy Involvement: A Dimension of Real Need," Hospital Practice 18 (1983): 38A-38F; S. A. Babb, R. G. Best, and V. A. Vincent, "Assessing the Need for Clergy Involvement in the Genetics Counseling Process in South Carolina," paper presented at the 10th Annual Education Conference of the Association of Genetic Counselors, Cincinnati, 14-16 October 1990; W. E. Wylie, "Health Counseling Competencies Needed by the Minister," Journal of Religion and Health 23 (1984): 237-249; C. W. Brister, The Promise of Counseling (San Francisco: Harper and Row, 1978).

20. T. R. Mertens, J. R. Hendrix, and G. L. Mendenhall, "Indiana Clergy: A Survey of Their Human Genetics/Bioethics Educational Needs," Journal of Pastoral Care 40 (1986): 43-55.

21. M. W. Clark, "The Pastor as Genetic Counselor," Journal of Religion and Health 20 (1981): 317-332.

22. R. Cole-Turner and B. Waters, Pastoral Genetics (Cleveland: Pilgrim Press, 1996).

23. Ibid.

24. Mertens, Hendrix, and Mendenhall.

25. C. C. Bosk, All God's Mistakes (Chicago: University of Chicago Press, 1992).

26. Ibid.

27. Cole-Turner and Waters.

28. Ibid.

29. M. J. Reiss and R. Straughan, Improving Nature? The Science and Ethics of Genetic Engineering (Cambridge: Cambridge University Press, 1996).

30. Cole-Turner and Waters.

31. Ibid.

32. C. A. Berry, "Genetic Engineering and Medical Treatment," paper presented at "Genetic Engineering: Christian Responsibilities in God's World," conference organized by Christians in Science and the Christian Medical Fellowship, Paper 2, 5-6, 1992. (Transcript available from Christian Medical Fellowship, Partnership House, 157 Waterloo Road, London SE1 8XN).

33. Bosk.

34. VandeCreek and Burton.

35. Mertens, Hendrix, and Mendenhall.

36. Ibid.

37. P. Steiner-Grossman and K. L. David, "Involvement of Rabbis in Counseling and Referral for Genetic Conditions: Results of a Survey," American Journal of Human Genetics 53 (1993): 1359-1365.

38. We chose to interview geneticists for several reasons. First, they understand the clinical and scientific values by which they work as distinguishable from ethical and religious values. When the latter come into play, healthcare professionals are inclined to refer their patients to pastoral counselors as the most appropriate source of service. Healthcare professionals have, in the course of treating patients, first-hand experience of the moral and religious issues patients raise as they deal with their genetic problems. Using this experience, clinicians (medical geneticists, obstetricians, pediatricians, oncologists, genetic counselors) and chaplains working in genetics are well positioned to clarify the role of pastoral counselors in caring for patients undergoing genetic testing, diagnosis, and/or treatment. They have direct experience because they have observed their patients grappling with the ethical and religious implications of their genetic conditions or problems and asking the kinds of questions alluded to earlier, so they are able to describe the needs of patients confronted by these situations. Second, we knew from some limited research that pastoral counselors are already involved on a small scale in pastoral counseling in genetics-related areas. Presumably, then, healthcare professionals have some experience of how pastoral counselors engage their patients, how positive or negative the results of pastoral counselors' involvement have been— whether patients were helped or pastoral counselors' involvement unnecessarily complicated the clinical situation—and what steps might be taken to integrate the involvement of pastoral counselors with that of healthcare professionals. Third, healthcare professionals are not, presumably, immune to their own spiritual and religious questions, concerns, and doubts, which, left unaddressed, may well interfere with their professional interaction with patients. Thus we sought to explore, from the perspective of the ethical and religious needs of the healthcare professional, how pastoral counselors might mediate these issues in a way that would contribute to the overall improvement of the religious well-being of both patients and the healthcare professionals who care for them.

39. J. Asbury, "Overview of Focus Group Research," Qualitative Health Research 5 (1995): 414-420.

40. A. E. Goldman and S. S. McDonald, The Group Depth Interview: Principles and Practices (Englewood Cliffs, N.J.: Prentice- Hall, 1987); D. L. Morgan, "Focus Groups," Annual Review of Sociology 22 (1996): 129-152; D. L. Morgan and R. A. Krueger, The Focus Group Kit (Thousand Oaks, Calif.: Sage, 1998); W. D. Wells, "Group Interviewing," in Handbook of Marketing Research, ed. R. Ferber (New York: McGraw-Hill, 1974).

41. G. I. Balch, "C.A.T (Computer-Assisted Telephone) Focus Groups: Better, Faster, Cheaper Focus Groups for the ‘Hard-To- Reach,'" Social Marketing Quarterly 7, no. 4 (2001): 38-40; G. Silverman, Introduction to Telephone Focus Groups (Orangeburg, N.Y.: Market Navigation, Inc., 1994); G. I. Balch, Developing a Marketing Communication Campaign to Increase Enrollment in Clinical Trials: A Focus Group Report (Washington, D.C.: National Action Plan on Breast Cancer, 1994).

42. Silverman; G. E. White and A. N. Thomson, "Anonymized Focus Groups as a Research Tool for Health Professionals," Qualitative Health Research 5, no. 2 (1995): 256-261; G. I. Balch and E. Balch, The Role of Professional Values in Medical Societies: Focus Group Explorations among Executives (Chicago: Institute for Ethics, American Medical Association, 1999); G. I. Balch and E. Balch, Employer Values in Health Plan Decisions: A Focus Group Exploration (Chicago: Institute for Ethics, American Medical Association, 1999); G. I. Balch, "Employers' Perceptions of Dietetic Practitioner Roles: Challenges to Survive and Opportunities to Thrive," Journal of the American Dietetic Association 96, no. 12 (1996): 10-14.

43. VandeCreek and Burton.

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Second Opinion #11 Cover © 2004 by Park Ridge Center
Second Opinion #11

Publisher: Park Ridge Center, Chicago
Date: April, 2005.
ISSN: 0890-1570
105 pages.
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