Embracing the unique role of genetic counselors: Response to the commentary by Madeo et al.

Genetic counselors have long recognized and acknowledged the important relationship between our profession and the disability community. We embrace unique and challenging roles in supporting clients' reproductive freedoms as well as advocating for patients and families with disabilities. As such, the relationship between the genetic counseling profession and the disability community is a complex and multifaceted one, deserving of examination. One such assessment is presented in the Commentary, “The Relationship of the Genetic Counseling Profession and the Disability Community: A Commentary” by Madeo et al. [2011]. In the Commentary, the authors express their opinions and concerns on the dichotomous relationship between the disability and medical communities, specifically that of the genetic counseling profession. The National Society of Genetic Counselors (NSGC) appreciates the opportunity to comment on the editorial. We believe there is significant overlap in the core values espoused by both the genetic counseling and disability communities and that the gap between the two is not nearly as wide as Madeo et al. believe. The NSGC promotes the professional interests of genetic counselors and provides continuing education opportunities as well as a network for professional communications and discussion of all issues relevant to human genetics and the genetic counseling profession. The NSGC's mission is to advance the various roles of genetic counselors in health care by fostering education, research, and public policy to ensure the availability of quality genetic services. As such, the society understands the unique identity and challenges of this profession and strives to provide the support our members' need to fulfill their professional responsibilities and obligations. These efforts include recognizing and addressing challenging issues and relationships between our profession and multiple communities. Historically, the early study of human genetics had disastrous implications for people with disabilities. Although the eugenics movement preceded the genetic counseling profession by almost half a century, the backlash it spawned against the medical model of disability continues to this day. The development of the genetic counseling field in the late 1960s was fueled in large part by the recognition of the complex emotional impact of genetic conditions on individuals and families. During the same time that the genetic counseling profession was evolving its views on patient advocacy, reproductive choice, and human diversity, the modern disabilities field focused its efforts on civil rights, self-determination, and societal change [Finucane et al., 2003]. Clearly both groups are working towards many of the same goals. As the authors correctly point out, few studies have examined genetic counselors' attitudes and practices related to disability. Likewise, there is limited research on the disability and advocacy community's perceptions of genetic counselors. The NSGC agrees that the genetic counseling profession would benefit from more research in this area. In addition, we advocate for continuing educational efforts and expanding curricula for students. We strongly concur that more active involvement by genetic counselors, both professionally and personally, with individuals who have disabilities will lead to increased understanding and acceptance. “The counselor-client relationship is based on values of care and respect for the client's autonomy, individuality, welfare, and freedom. The primary concern of genetic counselors is the interests of their clients.” ([NSGC, 2006], Code of Ethics) Genetic counselors guide clients through difficult decision-making processes with the ultimate goal that clients make decisions in alignment with their own values and beliefs. It is critical for genetic counselors to recognize their own biases when relaying information and options to clients so as not to influence clients' decisions. Navigating balance in these difficult discussions is delicate and requires considerable skill. Genetic counselors possess this skill by virtue of their specialized training. The NSGC believes the training of genetic counselors and our Code of Ethics enable genetic counselors to advocate for patients on a personalized basis providing the support for an individual or family's needs. As the professional association for genetic counselors, we also strive to provide the support our members need to fulfill their professional responsibilities and obligations. One of the most important roles of a genetic counselor today is that of patient advocate. This role has helped to advance momentum toward patient empowerment, encouraged individuals and families with disabilities to seek support from others facing similar challenges, and fostered an atmosphere of societal acceptance. For example, genetic counselors have a rich history of working alongside individuals and families to establish syndrome and disability-specific support organizations. Members of these groups grapple with broad issues ranging from advocacy to research to anticipatory medical and educational guidance; at the same time, individuals and families support each other in dealing with questions of self-determination, societal discrimination, and reproductive decision-making. Genetic counselors, by virtue of their training and expertise, are uniquely qualified to play a key role in supporting both reproductive choice and advocacy for the clients they serve. In their subjective commentary, Madeo et al. [2011] imply that discussing reproductive choices with clients and describing medical aspects of certain diagnoses in some way devalues people with disabilities. We concur that genetic counselors do “hold much responsibility in meeting the needs” of all client groups and must not favor, or even appear to favor, one group over another. The NSGC contends that, more than other professionals, genetic counselors have the unique ability to address all sides of these complex issues We are proud of our members' extensive involvement with patient support organizations, many of which look to genetic counselors' professional expertise in balancing complex issues related to disability and reproductive choice. The NSGC recognizes the unique challenges facing our profession and as a result actively engages and embraces the disability community in a variety of ways. In their commentary, Madeo et al. cited the NSGC website (www.nsgc.org) as a primary source of information about the society's activities related to the disability community. Like many other professional organizations, however, not every activity the NSGC undertakes is recorded on its website. We highlight below several examples of current and long-standing NSGC initiatives that reflect our ongoing commitment to and support of the disability community. In 2010, the NSGC Public Policy Committee revised the Society's Position Statement on Reproductive Freedom [NSGC, 2010a] to be more inclusive of all options available to patients participating in reproductive genetic counseling. In particular, the statement was carefully crafted to assure that no option was given more weight than others. Importantly, a central point of the discussion was the need to support families affected by disabilities. As an outcome of the work on the Reproductive Freedom Statement, the Public Policy Committee has also developed a Position Statement on Disability [NSGC, 2011] and genetic counselors' important role in advocating for individuals and families according to their unique needs. The NSGC Annual Education Conference (AEC) regularly features patient presentations. In 2010, a father spoke about the many positives of parenting a child with severe disabilities. Past presentations have included speakers with Down syndrome, autism, cystic fibrosis, and parents of children with Fragile X syndrome. Monies received from sponsorship of NSGC educational initiatives are allocated for development of educational programs, free or reduced cost registrations for disability advocacy groups at the AEC, and reduced exhibitor fees for support groups or patient organizations at the AEC. At the 2010 AEC, 12 advocacy organizations/support groups exhibited representing 20% of the 59 exhibitors. The NSGC recently approved Practice Guidelines for communicating a prenatal or postnatal diagnosis of Down syndrome [Sheets et al., 2011]. In 2010, the NSGC's Journal of Genetic Counseling began soliciting manuscripts for inclusion in a future special issue dedicated to developmental and intellectual disabilities. In the fall of 2010, NSGC representatives participated with the Down Syndrome Consensus Group in providing input on a book titled “Understanding A Down Syndrome Diagnosis” [Meredith, 2011]. NSGC worked with the publisher to provide a free copy of this book to all of our members in March 2011. The NSGC was an original member of the Executive Committee for the Coalition for Genetic Fairness, the alliance that pursued passage of the Genetic Information Nondiscrimination Act (GINA). The NSGC has many collaborative relationships with patient advocacy organizations as is evidenced by numerous letters secured in support of our proposed bill to amend CMS regulations recognizing genetic counselors as Medicare providers. The disability community has actively supported NSGC's many public policy efforts, including state licensure efforts that will provide greater access to genetic counselor services. The NSGC Neurogenetics Special Interest Group has a Disability Task Force that develops and provides resources for its members. In 2008, the NSGC established an Organizational Cultural Competency Task Force examining diversity issues. This group continues to carefully examine relationships with the disability community because disability is a form of human diversity. The genetic counseling profession and the disability community have many shared values and common goals. As the only national professional association for genetic counselors, the NSGC exists to promote the role of genetic counselors across the healthcare spectrum. In fulfilling our mission, it is critical that the NSGC supports our members' efforts to serve patients on a personalized basis and provide accurate and balanced information to all. We encourage in-depth discussions among our membership to ensure the best possible patient care. Ultimately, genetic counselors choose to enter this profession because they desire to help patients overcome challenges to achieve the best possible emotional and physical health. As asserted in our vision statement [NSGC, 2010], we strive to “integrate genetics and genomics to improve health for all.”