Nancy Steinberg Warren

Spiritual Assessment in Genetic Counseling

One hundred and twenty seven full members of the National Society of Genetic Counselors participated in this study exploring current spiritual assessment practices of genetic counselors and reactions to a spiritual assessment tool. While 60% of genetic counselors reported they had performed a spiritual assessment within the past year, fewer than 8.7% of these counselors assessed spirituality in more than half of their sessions. Counselors reporting high perceived relevance of spiritual assessment performed an assessment more frequently than those reporting a low perceived relevance. Barriers to spiritual assessment included lack of time, insufficient skills, and uncertainty regarding the role of spiritual assessment within genetic counseling. Almost two-thirds of counselors expressed that having a spiritual assessment tool would increase their ability to elicit relevant information. These data suggest a need for increased training regarding the methods for and relevance of spiritual assessment in genetic counseling. Recommendations for future directions of research are explored.

Introduction to the Special Issue: Toward Diversity and Cultural Competence in Genetic Counseling

This introduction provides an overview of the professional issues and original research papers in this special issue. The articles address workforce challenges and/or cross-cultural education and communication with culturally and religiously diverse clients. Additional suggestions are made for moving the profession of genetic counseling toward diversity and cultural competence.

Outcomes of a Genetics Education Program for Nursing Faculty

&NA; A multifaceted educational program designed to teach nursing faculty about genetics was first offered in 1997 and subsequently repeated on an annual basis. The specific aims of the program were to: 1) increase nursing faculty knowledge about genetics and its clinical application, and 2) increase genetics content taught in entry‐level nursing education programs. The major components of the program included an annual Genetics Summer Institute (GSI), pre‐planned follow‐up strategies, and continuing education offerings. Measured outcomes included significant improvement in nursing faculty genetics knowledge and increased amounts of genetics content in their curricula. The majority of surveyed faculty focused curriculum change efforts on lectures or courses for which they were personally responsible. Thirty‐one percent were working on, or had developed, elective nursing genetics courses after attending a GSI. These findings indicate that this program provided the necessary foundational instruction and resources to enable nursing faculty participants to bring about change in their curricula.

Ethical issues in cancer genetics: I 1) whose information is it?

This article presents and discusses four clinical cases that exemplify the complexity of ethical dilemmas concerning the provider’s obligation to disclose or withhold genetic information from patients.Case 1: What is the responsibility of the cancer genetics provider to ensure that a positive test results is shared with distant relatives?Case 2: To ensure that results go to at-risk relatives, do we have the right to ignore the wishes of the designated next-of-kin?Case 3: Do we have the right to reveal a familial BRCA1 mutation to a patient’s relative, who is at 50% risk?Case 4: Do we have an obligation to reveal that a patient is not a blood relative and therefore, not at risk to have inherited a familial mutation?These cases form the basis for discussing the provider’s dual obligations to keeping patient confidentiality and informing patients and families about risk (i.e. duty to warn). We also provide a summary of consensus points and additional discussion questions for each case.

Minority Recruitment into the Genetic Counseling Profession

In the past, genetic counseling training programs have had an abundance of applicants for the number of slots available. They have, however, had a very limited pool of minority applicants. At the June 1992 meeting of the genetic counseling training programs directors the topic of minority recruitment was explored. The resources and recommendations that resulted from this discussion can be used by other medical training programs.

Career Research Interests and Training of Genetic Counseling Students

Research is important to validate clinical services, provide information on the effectiveness of practice techniques, and develop the knowledge base of a clinical profession. Genetic counseling students from American Board of Genetic Counseling (ABGC) accredited training programs were surveyed to determine their career research interests and interest in pursuing a hypothetical doctoral degree in genetic counseling. Genetic counseling program directors were surveyed to assess the emphasis on research training within their programs. A substantial number (46%, n = 92) of genetic counseling students are interested in performing research in their careers and many (40%, n = 80) would pursue a doctoral degree in genetic counseling if it was available. Students and directors from programs with a thesis requirement reported a significantly higher emphasis on career research preparation than those from programs without a thesis requirement. The results of this study indicate that future genetic counselors are interested in contributing to the research base that will advance the field. This study suggests a need to strengthen research training within ABGC accredited graduate programs and explore the development of a doctoral degree option in genetic counseling.

Characterization of the Practice and Attitudes of Genetic Counselors with Doctoral Degrees

Potential advantages and disadvantages of doctoral training in genetic counseling have been debated. In this study, individual interviews were conducted to characterize the practice and attitudes of genetic counselors who have achieved doctoral degrees in any field. Participants (N=31) were more likely to spend time in research and less likely to spend time in clinic than genetic counselors in general. Advantages identified by participants were consistent with theorized advantages, and included increased knowledge, wider research roles, additional opportunities and greater respect. Disadvantages identified by participants focused more on individual perspectives than previously theorized profession-wide disadvantages. These included increased time commitment and decreased patient contact. The attitudes of participants towards the development of doctoral training in genetic counseling were generally positive. The results suggest that doctoral training in genetic counseling would have more benefits than drawbacks for individuals pursuing this degree.

High school biology/life science teachers' presentation of genetic counseling and health care career options in their classrooms.

Studies show teachers play an influential role in the career decision-making process of students and early knowledge of genetic counseling (GC) increases the likelihood students will consider this career option. This quantitative study is the first to explore the presentation of GC and other health care career options by high school (HS) biology/life science (B/LS) teachers in their classrooms. Our findings indicate most B/LS teachers present GC as a career option to HS students, agree it complements classroom activities, and perceive students as interested in learning about the profession. However, teachers note many barriers to spending class time presenting GC careers. Consequently, a substantial number of teachers spent a minimal amount of time presenting health care careers in general. We discuss ways genetic counselors can enhance career resources, reduce barriers, and foster student interest in pursuing a career in GC by developing partnerships with HS B/LS teachers.

Jennifer Wiggins and Anna Middleton (eds): Getting the Message Across: Communication with Diverse Populations in Clinical Genetics

Goal Edited by genetic counselors in the United Kingdom (UK), this book targets genetic counselors and other genetics professionals working in the UK and other English-speaking countries with “practical tips that support cross-cultural counseling” (preface xi). Each of the 15 chapters is authored by genetic counselors, and other genetics and/or other medical professionals with impressive credentials. The contents most definitely apply to genetic counseling practice, although there is sufficient breadth for the book to be helpful to all genetics and other professionals and staff involved in communicating with clients in health care settings. At times, the authors note practice and resource differences in other countries, but for the most part, the content is applicable to genetic counseling practice anywhere. The preface chapter succinctly reviews the elements of effective communication, including fundamentals such as: treat each client as unique, avoid bias and stereotyping, continue to hone counseling skills, and strive to provide all clients with the best learning opportunities possible. Written communications, verbal communications in person, by phone, and use of assistive devices, as well as attending to non-verbal and emotional communication cues are addressed in multiple places throughout the book.