A Genetic Counseling Cultural Competence Toolkit


About Us
   
Rationale for Project  |  Advisory Group  |  Peer Review Process  |  Acknowledgements

About Us

New in 2013, we offer talks and workshops to make the content of the Toolkit come to life! See this link for more information: http://www.geneticcounselingtoolkit.org

The 2009 JEMF award funded the development of this Genetic Counseling Cultural Competence Toolkit, as proposed by Nancy Steinberg Warren, MS, CGC. Ms. Warren is a genetic counselor with over 30 years of experience in the field, who envisioned a resource for use by everyone in the field, including genetic counselors, students, and training programs, as well as other health care professionals and consumers. Ms. Warren’s leadership, passion, and focus on promoting education and outreach have been captured in this online resource portal.

Ms. Warren was an assistant director or program director of the University of Cincinnati Genetic Counseling Training Program for almost 20 years. As an educator, she mentored and taught her students, while listening to and learning from them. She reached out to attract prospective students into the profession by giving talks, developing materials, and mentoring others to do the same. She is proud to have led a team in developing the NSGC prospective student recruiting brochure. In her career, Ms. Warren also focused her outreach efforts on helping other health care professionals learn about genetic counseling. Among other projects, she developed a genetics website for speech-language pathologists and audiologists with NCHPEG (http://www.nchpeg.org/shla/site.html). With several professional colleagues, she presented a webinar for the Diversity Rx organization. The webinar explores the complexity of genetic counseling encounters and the multiple layers of communication that are integral to assure provision of the best possible, culturally competent patient care. This webinar can be found at: http://www.diversityrx.org/language-culture-and-genetics-webinar

Personal Reflections about Genetic Counseling and Cultural Competence

Boat in a harborIn my professional learning journey facilitated by the JEMF Fellowship, my task and privilege was to learn everything I could about cultural and linguistic competence and genetic counseling. I networked with national experts, attended conferences and learned new terminology, concepts and practices. However, I needed to go back to the basics: Genetic Counseling 101. As I re-read articles from our genetic counseling literature, many “old” articles took on new meaning. I came to realize that experts in cultural competence in our field such as Vivian Ota Wang, Ilana Mittman, Jon Weil, and others, HAD been speaking and guiding me and all the members of the genetic counseling profession, but I had not been fully “listening.”

Immersion in these topics resulted in a better appreciation of how genetic counseling is inherently grounded in principles of culturally competent health care. A fundamental tenet of genetic counseling is to provide individualized, client-centered care. We work from the client’s agenda and provide more or less guidance as each family needs and wants. We have solid and versatile skills that generally “work” with most clients, as long as we always use individual approaches and don’t assume anything! We ask colleagues for help when we are “over our heads.” The profession of genetic counseling has a firm foundation for providing culturally competent health care. But, there is more to it.

Cultural competent genetic counseling means admitting that we’ll never know everything we need to know. Therefore, we are committed to continually learning. We are humble and introspective, always reflecting on what went well and what we need to improve. We have biases that can cloud our thinking, influence our behaviors, and contribute to health disparities. We do our best to identify our biases by paying attention to our thoughts, feelings, and experiences and openly sharing them in peer supervision settings. We take full advantage of using resources developed outside our field, such as cultural and spiritual assessment tools, that can help us more completely understand our patients. And, we consider what goes on in each genetic counseling appointment in the context of that client’s physical, family, and socio-cultural worldviews.

The essence of culturally and linguistically competent counseling was described in general terms by Carl Rogers (cited in The Seven Habits of Highly Effective People, Stephen R. Covey, p. 267): “The more authentic you become, the more genuine your expression particularly regarding personal experiences and even self-doubts, the more people can relate to your expression and the safer it makes them feel to express themselves. That expression in turn feeds back on the other person’s spirit and genuine empathy takes place, producing new insights and learning and a sense of excitement and adventure that keeps the process going.”

This toolkit does not re-invent genetic counseling practice for working with culturally and linguistically diverse clients. Rather, it incorporates our foundational principles and applies them within an accessible electronic educational resource with broad potential utility. I take responsibility for the toolkit content and scope, but I also owe credit to many others for the resources and ideas presented within. I utilized many sources of input, including the literature, genetic counseling colleagues, cultural competence experts, students, health care providers, consumers, etc.

Thanks to JEMF and the NSGC

I want to thank the Jane Engelberg Memorial Fellowship grant and the National Society of Genetic Counselors for supporting this project as a strategy for actively involving the genetic counseling profession in the national dialogue on reducing health disparities. As the recipient of the 2009 JEMF Fellowship, I was privileged to immerse myself in professional development opportunities. Despite that wonderful opportunity, my learning curve is still at an early stage. I have much to learn from experts in other fields, and from each of you as my colleagues. I hope the GCCCT promotes discourse among genetic counselors. Sharing our challenges and accomplishments will help us, as individuals and as a profession, to assess where we are and where we are going in the cultural competence continuum.

I am proud to have my efforts acknowledged by my peers with the 2013 NSGC Cultural Competence Award! Thank you and I look forward to our continued joint efforts!

Nancy Steinberg Warren, MS, CGC
2009 JEMF Fellowship Awardee
2013 NSGC Cultural Competence Awardee

(click here to see the LinkedIn page)

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