Journal of Genetic Counseling~ VoL 3, No. 2, 1994

Training Genetic Counselors to Provide Teratogen Counseling Amy K. Stein, 1,2 Beth A. Fine, 1 and Eugene Pergament I

Provision of teratogen counseling requires acquisition of knowledge and skills from several disciplines. Traditionally, training in teratogen counseling has occurred "on the job." We describe a formal, didactic and experiential curriculum for teratogen counseling as an integral part of the Graduate Program in Genetic Counseling leading to the master of science degree at Northwestern University. All students complete a 5-week rotation with the Coordinator of the Illinois Teratogen Information Service (TIS). This provides them with an opportunity to evaluate a spectrum of teratogen exposures, to interpret teratogen studies in a manner useful for patients, and to develop skills in assessing and addressing psychosocial issues associated with fetal exposure to potential teratogens. Students also learn first hand about how a TIS functions and when and how to refer to TIS specialists. The goal of the program is to provide genetic counseling students with the opportunity to gain experience in accessing and interpreting teratology research and in communicating teratogen information to patients and health professionals in a sensitive, effective manner. KEY WORDS: teratogen; genetic counseling; training.

INTRODUCTION G e n e t i c counselors are often faced with the issue o f exposure to teratogenic agents b e f o r e and during pregnancy. T o this end, teratology and 1Section of Reproductive Genetics, Department of Obstetrics & Gynecology, Northwestern University, Chicago, Illinois. 2Correspondence should be sent to Amy K. Stein, Prentice Women's Hospital, Section of Reproductive Genetics, Department of Obstetrics & Gyneocology, 33 E. Superior Street, Suite 1565, Chicago, Illinois 60611. 133 1059-7700/94/0600-0133507.00/1 © 1994 National Society of Genetic Counselors, Inc.

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teratogen counseling should be an integral part of the genetic counseling graduate program curriculum. The necessity of teratogen training for genetic counselors was underscored at the 1989 Asilomar meeting on genetic counselor education, at which time it was recommended that genetic counselors complete both didactic coursework and clinical experience in teratogen counseling (Walker et al., 1990), and by the eligibility criteria for certification of genetic counselors by the American Board of Medical Genetics (American Board of Medical Genetics, 1992). Despite this recommendation, no formal models for teaching teratogen counseling currently exist. At the present time, those providing teratogen information services and counseling come from a variety of educational backgrounds and occupational experiences, some having had formal courses in teratology and others learning "on the job" (Koren, 1992). For most genetic counselors, the latter approach has been the customary way to learn teratogen counseling skills. We describe the teratogen training component of Northwestern University's 18-month Graduate Program in Genetic Counseling leading to a master of science degree. Training in teratogen counseling includes didactic coursework in teratology, embryology, and related subjects, an intensive 5week supervised practicum, and a series of educational experiences comprised of presentations at journal club and patient review sessions. Continuous feedback and performance evaluation are an integral part of the curriculum. Upon completion of the teratogen training program, genetic counseling students are expected to have achieved competence in the skills necessary for addressing questions raised in genetic counseling sessions regarding exposures to chemicals, infections, drugs, environmental pollutants, or other agents that might adversely affect pregnancy outcomes. In addition, students gain an understanding of the day-to-day activities of a Teratogen Information Service (TIS) as well as how and when to access assistance of a TIS specialist. Students also utilize these skills while participating in other clinical rotations, e.g., general genetics clinic, prenatal diagnosis clinic, and when conducting intake interviews.

CLASSWORK The didactic component of the Graduate Program in Genetic Counseling relevant to teratogen counseling includes lectures and readings on embryology, dysmorphology, and principles of teratology, which are integrated into the entire graduate program curriculum. The objective is to provide a foundation of knowledge pertaining to organogenesis, critical periods of development, and exposure risks (Wilson, 1978). In order to build interviewing and supportive counseling skills, first year courses such as "In-

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troduction to Genetic Counseling" and "Psychosocial Aspects of Genetic Counseling" incorporate lectures and role plays on teratogen counseling. These courses are completed prior to the beginning of clinical rotations. Courses in public health statistics and epidemiology, and clinical research design are also required components of the academic program. Students learn the differences between prospective and retrospective studies, case reports, cohort studies, and registries, as well as their appropriate applications in risk assessment (Rosenwasser, 1989). In their first year, students take the course, "Introduction to Clinical Genetics" which includes lectures on a wide variety of genetic disorders and conditions as well as specific presentations on dysmorphology, field defects, congenital heart defects, clefting syndromes, and sexual differentiation emphasizing developmental processes. First-year students also take a "Public Health Statistics" course offered through the Department of Preventive Medicine and Community Health. This course covers statistical methods and epidemiology. In addition, first year students attend a seminar on clinical research design, which focuses on skills and knowledge useful in conducting research as part of their thesis requirement. Participation in Journal Club provides additional opportunities for students to improve their skills in critically reviewing literature. This didactic classwork provides students with the skills to evaluate teratogen literature critically and to apply that information to human pregnancy exposures and teratogen counseling cases. A minimum of 15 classroom hours is devoted to teratology and teratogen counseling during the five academic quarters of the Graduate Program in Genetic Counseling.

TERATOGEN PRACTICUM The teratogen practicum, supervised by the teratogen coordinator/genetic counselor, consists of 5 weeks of intensive teratogen counseling training. Training in teratogen counseling parallels the goals of genetic counseling training in several ways. First, students learn how to provide factual information regarding possible risks of birth defects in a sensitive and straightforward manner while addressing psychosocial issues of women whose pregnancies have been exposed to potential teratogens. Second, students learn to be cognizant of, and sensitive to, patients of different ethnicities who often have their own cultural viewpoints and biases concerning pregnancy and exposure risks. Third, during the 5-week rotation, students respond to and manage teratogen telephone inquiries from the time of intake through the counseling session and follow-up. Students elicit basic information from each caller and complete both a teratogen intake form and data reporting forms required by the Illinois Department of Public Health.

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Fourth, students complete social and medical histories, similar to genetic counseling cases. Students obtain exposure information which includes the name of the agent, the timing, amount, dose and route of exposure, and whether the exposure was maternal or paternal in origin (Rosenwasser, 1989). Finally, students assess the level of parental concern and anxiety. The management of a teratogen inquiry involves student preparation and presentation of information to the caller followed by a letter summarizing the counseling session. In order to obtain current information students utilize computer databases such as Teris and Reprotox, complete literature searches, and evaluate published reviews of agents. Students also learn to identify and access professional consultants (e.g., specialists in infectious disease, occupational medicine, and radiology) as well as resources such as pesticide hotlines, the Art Hazards hotline, drug information centers and other Teratogen Information Services (TIS). Creativity, ingenuity, and resourcefulness in obtaining information and answers are encouraged; guidance by clinical supervisors is provided. After each telephone inquiry, students investigate and then present via role play to the teratogen coordinator an evaluation of the teratogen exposure and its potential effect(s). Through this supervised role play, students practice explaining exposure information, critical periods of organogenesis, and risks to the pregnancy. This facilitates a critical assessment of the material prior to its formal presentation to ensure that the patient is being given accurate information in an understandable, sensitive, and complete manner. Through this role play, students also develop skills in addressing psychosocial and ethnocultural issues associated with fetal exposure to potential teratogens. The supervisory role is critical in providing appropriate feedback to students as they develop their counseling skills (Bernard, 1988). Students are required to prepare an outline of the information to be discussed with the inquirer as well as a list of referral sources for any special tests or supportive services. Telephone calls and clinic counseling sessions are structured in the same way. In a teratogen counseling session, the material is presented in a style typical of a genetic counseling session. Students initiate contact with the patient and then contract with them. The patient's concerns and fears are carefully evaluated. Students ascertain the patient's support systems as well as their religious and cultural beliefs. Using clear, understandable language, students describe the stages of fetal development, identify the timing of the exposure during the pregnancy, and discuss the implications of each agent to which the pregnancy was exposed. By interacting with the patient during the counseling session, students can evaluate the patient's reaction to the information and determine the patient's level of understanding. Appropriate referrals are made to medical and/or sup-

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port services. Patients counseled in the genetics clinic have already been identified as being at significant risk for adverse pregnancy outcome and/or have psychosocial issues requiring immediate attention. The students are guided in the process of distinguishing between patients whom they would recommend for a clinic visit and patients who would be appropriate to counsel over the telephone. Psychosocial issues frequently arise during teratogen counseling. Students use counseling skills developed in psychosocial didactic courses to help identify and facilitate discussion of the patient's concerns. Often the caller will express feelings of anxiety, guilt and shame, while having an exaggerated perception of their real risk. Uncertainty and fear often surround questions pertaining to exposure to teratogens during pregnancy. Students are instructed to address these issues while counseling the patient about the various causes of birth defects. Appropriate risk framing by the students is intended to provide the patient with accurate information so that patient autonomy is maintained and an informed decision concerning the pregnancy is made. During the teratogen rotation students are required to spend approximately 15 hours per week at the TIS, which does not include any additional time necessary to conduct medical literature searches. In the course of the 5-week rotation, students service approximately 25 teratogen telephone calls and provide counseling in the TIS clinic to a minimum of three patients.

SUPERVISION

The Teratogen Coordinator is always present when students counsel by telephone and at the TIS clinic. Feedback after each patient encounter provides students with constant and consistent guidance. Oral and written assignments on teratogen case scenarios and specific teratogenic agents are required, thereby enhancing students' ability to communicate effectively (Bernard, 1988). A series of articles on various teratogens is required reading during the 5-week rotation. Students are also offered the opportunity of assisting in the preparation of a quarterly newsletter serving health professionals which reviews a specific group of teratogens (e.g., seizure medications, infectious agents, pesticides).

OTHER ACADEMIC ACTIVITIES A bi-monthly Teratogen Case Review session is attended by graduate students, genetic counselors, geneticists, obstetrics and gynecology residents

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and genetic laboratory staff. Students present each teratogen case for which they have been responsible during the past 2 weeks, including exposure history, pregnancy history and associated risks based on their review of the literature. During their teratogen rotation, students present articles on teratology from various journals at a weekly Journal Club attended by peers, genetic counselors, geneticists, house staff, fellows, and attending physicians. These activities foster the development of skills to present research findings and teratogen cases in a succinct and critical manner.

EVALUATION

Assessment of student performance during the 5-week teratogen rotation is conducted continuously by the teratogen coordinator. The supervisor evaluates the student's general knowledge of teratogens and counseling skills as well as progress in professional development via weekly meetings with each student. Objectives set forth at the beginning of the teratogen rotation (Table I) provide an outcome measure by which the supervisor and student can determine if the required goals of the rotation were met. Self-assessment by each student is encouraged (Bernard, 1988).

Table I. Objectives of the Teratogen Rotation 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12.

Define teratogens and their effects. Explain differences in teratogenic potential at various stages of pregnancy. Discern salient information necessary for risk evaluation. Elicit pertinent exposure history from callers. Use various resources to investigate a teratogen question (e.g., databases, publications, and consultants). Critically evaluate teratogen studies of animals and their applicability to human pregnancy exposure. Develop oral and written communication skills by counseling and writing letters to patients and physicians. Process teratogen calls from intake through the counseling session. Facilitate addressing unique psychosocial issues that arise in teratogen counseling (e.g., cultural biases). Explore personal feelings towards patients who expose their pregnancies to potential teratogens. Give factual information regarding possible birth defects and other problems in a sensitive and effective manner. Provide supportive referrals for counseling and rehabilitation.

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DISCUSSION

Teratogen counseling training at Northwestern University is designed to enable graduate students in genetic counseling to optimize their future role as genetic counselors by contributing toward their professional skills and competence in responding to inquiries by patients concerning exposure to teratogens. A combination of lectures, supervised clinical experiences, and case and literature presentations to peers and professionals comprise a significant portion of the Graduate Program in Genetic Counseling at Northwestern University. The teratogen practicum is designed to familiarize genetic counseling students with teratogen terminology and the role of embryology in the practice of teratogen counseling. Through the 5-week practicum, students gain experience in describing the clinical effects of teratogens in terms understandable to patients as well as health professionals. Finally, students become skilled in explaining differences in teratogenic potential at various stages of pregnancy. By working with the TIS, students learn how this service functions, who utilizes a TIS, and what constitutes appropriate use of such a service. Students learn to elicit pertinent exposure history from the caller, investigate a teratogen question using a variety of resources, and communicate teratogen information and risk assessments effectively. Each student is guided through the entire processing of a teratogen inquiry. Initially, all aspects of the inquiry are reviewed by the teratogen coordinator but as the student becomes skilled, responsibilities are increased to foster confidence and independence. There is daily supervision, weekly feedback and evaluation, and ongoing monitoring of student progress.

CONCLUSION Teratogen counseling requires critical thinking, problem solving, and communication skills. The Graduate Program in Genetic Counseling at Northwestern University is designed to develop and enhance these abilities through a teaching program combining didactic lectures, supervised clinical experiences, and oral and written presentations. Students who achieve the learning objectives of the teratogen rotation are prepared to address and/or refer to TIS, when appropriate, questions concerning exposures to teratogenic agents during pregnancy, thus integrating their TIS experiences into their genetic counseling practices.

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ACKNOWLEDGMENT The authors wish to acknowledge the contribution that Maureen Smith, M.S. h a s m a d e to t h e t r a i n i n g o f N o r t h w e s t e r n U n i v e r s i t y G e n e t i c C o u n s e l i n g s t u d e n t s in t e r a t o g e n counseling, I n a d d i t i o n , t h e a u t h o r s w o u l d like to t h a n k t h e g e n e t i c c o u n s e l i n g s t u d e n t s w h o s e critical i n p u t h e l p r e f i n e a n d s h a p e this t e r a t o g e n p r o g r a m .

REFERENCES American Board of Medical Genetics, Inc. (1992) Bulletin of Information, Description of Examinations. Bethesda, MD. Bernard JM (1988) Receiving and using supervision. In: Hackney H, Cormier LS (ed) Counseling Strategies and Interventions (3rd Ed). Engelwood Cliffs, NJ: Prentice Hail, pp 153-169. Koren G (1992) A quality assurance program for teratogen information services. Reprod Toxicol 6(4):293-295. Rosenwasser SK (1989) Critical issues in teratology for prenatal counselors. In: Zellers NJ (ed) Strategies in Genetic Counseling, Vol 2, Tools for Professional Advancement. New York: Human Sciences Press, pp 129-138. Walker AP, Scott JA, Biesecker BB, Conover B, Blake W, Djurdjinovic L (1990) Report of the 1989 Asilomar meeting on education in genetic counseling. A m J Hum Genet 46:1223-1230. Wilson JG (1978) Current status of teratology. General principles and mechanism derived from animal studies. In: Wilson JG, Fraser FC (ed) Handbook of Teratology, Vol L General Principles and Etiology. New York: Plenum Press, pp 47-74.

Training Genetic Counselors to provide teratogen counseling.

Provision of teratogen counseling requires acquisition of knowledge and skills from several disciplines. Traditionally, training in teratogen counseli...
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