Expert Commentary by Jon Weil, Ph.D. Genetics, Ph.D. Clinical Psychology
Jon Weil, Ph.D. Genetics,
Ph.D. Clinical Psychology
Associate Clinical Professor of Pediatrics
University of California,
San Francisco
Mail: 2015 Mira Vista Drive, El Cerrito, CA 94530
Phone: 510-237-1906
weilj@berkeley.edu
Commentary on the case of Yunhua and Biao
In genetic counseling interactions, psychosocial and ethnocultural issues are inevitably interwoven. This is illustrated by the case of Yunhua and Biao. Michelle must address the significant differences between her clients’ culture and her own, while also drawing on her knowledge and experience regarding empathy, grief, guilt, shame, stigma, couple interactions and countertransference, among others. Yet despite this interconnectedness, ethnocultural issues are frequently discussed as a largely separate topic. For example, the extended discussions by Weil (2000, chapter 8), Oosterwal (2009) and Lewis (2010) are all individual chapters in books in which psychosocial issues are primarily addressed in other chapters. Ideally, ethnocultural issues would be integrated with psychosocial issues, thus more closely mirroring the reality of genetic counseling.
The case involving Yunhua and Biao helps bridge this gap through its combination of case-specific information, broader ethnocultural information, questions for thought and reflection, and study exercises. To build on the opportunity this provides, I will expand on the case in terms of the interplay of ethnocultural and psychosocial issues it presents. However, I must emphasize that this discussion in no way represents the way or an ideal way to address the issues. Rather, it will illustrate how the genetic counselor might fruitfully interweave the psychosocial and ethnocultural issues.
I begin with Michelle’s feelings about the session. Because the clients’ culture is so different from hers, she may feel anxious or apprehensive while reviewing the case, meeting the clients, or in the interactions that follow. If she does not acknowledge and address these feelings, her anxiety during the session may limit her effectiveness. Yunhua and Biao’s reluctance to discuss their emotions may also resonate with previous cases, in which European American’s unwillingness or inability to express their emotions left her feeling incompetent and frustrated. If she does not attend to her feelings about reticent clients, she may express anger or frustration toward Yunhua and Biao, or she may withdraw emotionally.
There are also more positive reasons for attending to her emotions. Her anxiety about working with Asian American clients is a resource for understanding and empathy toward Yunhua and Biao since they may also be anxious – about working with a European American genetic counselor. Will she understand their feelings and how to respond to them respectfully? Will she expect responses that feel intrusive and foreign to them, with the potential for feeling shamed in front of her? Recognizing her own feelings may help Michelle empathize with Yunhua and Biao. In addition, recognizing the reciprocal concerns and anxieties in this cross-cultural exchange may help Michelle view working with Yunhua and Biao as a bridge that needs to be built rather than an obstacle that has to be overcome. Reflecting on her feelings about working with reticent clients can also be a source of empathy and understanding. Have there been difficult, painful times in her life when the well-meant questions of family or friends felt intrusive? What would she have preferred? Were there friends or family who handled the situation in a way that felt more comfortable and understanding? If so, how?
Thinking about these issues can help Michelle draw on her knowledge about and experience with giving bad news. Central to this difficult process is the need to provide empathy, understanding and a sense of safety (Buckman, 1992). As Michelle explains their baby’s condition, Yunhua hangs her head, turns to Biao and says, “I’m so sorry - I didn’t mean for this to happen.” Instead of first asking about their emotions, Michelle could make a simple empathic statement such as, “I am so sorry that this has happened.” She could then allow a quiet interval in which Yunhua and Biao can speak to each other and begin to process their emotions. This is respectful, personally and culturally. It also gives Michelle an opportunity to observe how Yunhua and Biao respond to the information and to think about how she can be most helpful to them.
Yunhua’s reaction suggests she is feeling responsibility for the pregnancy outcome and shame toward Biao. Based on this initial assessment, Michelle can draw on her knowledge and experience with issues of shame. However, she must keep two things in mind. First, our understanding of how to assess and address shame is primarily based on research and clinical experience with European Americans (e.g., Kessler, Kessler & Ward, 1984). Second, since Yunhua and Biao speak English well, they may have, to greater or lesser extent, adopted relevant Western attitudes and values. When responding to clients’ shame, a non-judgmental attitude, empathy, validation and normalization are central. Thus Michelle might say, “This is a great shock to both of you, so it is understandable that you feel responsible.”
Biao’s request that Michelle explain exactly how this could have happened suggests multiple layers of meaning and emotion. It is critically important that Michelle ask Biao and Yunhua what their beliefs are about why this happened. Careful attention to their beliefs will build trust and mutual cultural respect. It will help Michelle understand how to discuss the etiology in a way that incorporates or complements their beliefs and corrects (from a Western medicine perspective) critical misperceptions. Both the nature of their beliefs and the manner in which they are presented (including reticence) may provide clues to feelings of responsibility, shame, guilt and blame. And, as in any attempt to help clients with guilt and shame, allowing full expression of feelings and beliefs is an essential first step (Weil 2000).
This brief elaboration of the case illustrates the interwoven relationship between psychosocial and ethnocultural issues. However, the terms “psychosocial” and “ethnocultural” imply a dichotomy that potentially limits how we look at these issues. As Michelle works with Yunhua and Biao – and learns in the process – her understanding of shame, blame, building trust, and crafting an appropriate explanation of etiology shifts, to some degree, from primarily European-American to more multicultural. This incremental process occurs numerous times for numerous genetic counselors and is aided by professional resources such this website. Stated more broadly, the continuing development of ethnocultural competence may be seen as a process in which psychosocial genetic counseling evolves from monocultural to multicultural (Weil and Mittman, 1993). To the extent that genetic counselors, and the profession, can adopt the unifying concept that our understanding of psychosocial issues should be broadly multicultural, the ability to work effectively with clients in our multicultural world will be enhanced.
References
Buckman, R. (1992). How to Break Bad News: A Guide for Health Care Professionals. Baltimore: Johns Hopkins University Press.
Kessler, S., Kessler, H. & Ward, P. (1984). Psychological aspects of genetic counseling. III. Management of guilt and shame. Am J Med Genet, 17, 673-697.
Lewis, L. (2010). Honoring diversity: Cultural competence in genetic counseling. In B. S. LeRoy, P. McCarthy Veach & D. M. Bartels (Eds.), Genetic Counseling Practice: Advanced Concepts and Skills (pp. 201-233). Hoboken: Wiley-Blackwell.
Oosterwal, G. (2009). Multicultural counseling. In W. R. Uhlmann, J. L. Shuette & B. Yashar (Eds.), A Guide to Genetic Counseling (pp. 331-361). Hoboken: John Wiley and Sons.
Weil, J. (2000). Psychosocial Genetic Counseling. New York: Oxford University Press.
Weil, J. & Mittman, I. (1993). A teaching framework for cross-cultural genetic counseling. J Genet Counsel, 2, 159-170.
Jon Weil is the former Director of the Masters Degree Program in Genetic Counseling, School of Public Health, University of California, Berkeley (1989-2001). A major focus of his tenure was the development and promotion of ethnocultural competence as a central issue in genetic counseling. He pursued this through teaching and supervision at the program level and with seminars, workshops and publications at the national level. His book, Psychosocial Genetic Counseling, Oxford University Press, 2000, has an extensive chapter devoted to ethnocultural issues. Since retiring in 2001 he has remained active professionally through writing, seminars, teaching, mentoring and serving on the Editorial Board of the Journal of Genetic Counseling, with continuing involvement in promoting ethnocultural competence.
