NCD Letter to ACGC on Genetic Counselor Programs

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December 12, 2019

Janet Williams, MS, CGC
President
Accreditation Council for Genetic Counseling
7918 Jones Branch Drive, Suite 300
McLean, VA 22102

Dear Ms. Williams:

The National Council on Disability (NCD) is an independent federal agency charged with advising the President, Congress, and other federal agencies on disability policy. On behalf of NCD, I write to inform you that we have submitted a report to the President and Congress titled Genetic Testing and the Rush to Perfection,[1] an examination of the impact of genetic testing on people with disabilities which discusses the rapidly expanding business of noninvasive prenatal screening (NIPS) and the importance of genetic counseling to help ensure that prospective and current parents of children with genetic conditions receive accurate information for making informed choices about genetic test results. Because life and death decisions are influenced based on the information that parents receive from genetic counselors regarding potential disabilities, NCD asks the ACGC to require substantive disability education in genetic counseling programs and in genetic counselor continuing education.

Genetic counselors, who stand on the front lines of providing information to facilitate informed reproductive choices for women, are subject to few requirements when it comes to disability cultural or social awareness, however, it is necessary for genetic counselors to provide a balanced understanding of what it means medically and socially to have a child with a genetic condition, and what it means to live with a disability. The necessity for doing so arises from the continued existence of deeply rooted social stereotypes and ongoing prejudice about disability, within and outside of the medical community. The lives of people with disabilities have long been undervalued and deemed less deserving of medical and societal resources, in fact, research shows that misinformation and negative beliefs about the quality of a life with a disability remain common. In the medical context, these beliefs can be fatal.

Genetic counseling students may have little or no experience or knowledge about disability from a medical, societal, and cultural perspective, and yet, they will be informing parents about disabilities in their daily work. Further, parents assume that genetic counselors have knowledge about disability and how a particular disability might impact their child’s life. Disability education is therefore critical to ensure that users of prenatal genetic testing receive full information about disability, including information on the lived experiences of people with disabilities.

ACGC’s current accreditation standards for graduate genetic counseling programs do not currently require much education on disability. The standards include “disability awareness” within a category of psychosocial content that one of nine general content areas required to support the development of practice-based competencies in genetic counseling, however, it is not clear whether this is aimed at teaching students how to communicate with patients (parents) with disabilities or to communicate with parents about disability and what it is like to live with a disability from an informed social and cultural standpoint – one that recognizes the challenges and also the value and promise of every life.

The need for substantive disability education has become even more important given the explosive growth and ready availability of prenatal testing products and the growing number of parents using them. Parents need full information when a test indicates that their child may have a disability – information devoid of stereotypes and negative beliefs. As was aptly stated by Parens and Asch, “If genetic professionals learn more about what raising disabled children can mean, rethink their approach to parents, and help those parents better imagine what a child’s disability might mean for their family, then some progress will be made in honoring the disability rights movement’s central message that our society must be able to value people and lives of many different sorts.”[2]

NCD is available to meet with you to discuss the report and the pressing need for genetic counselors to receive substantive education in the social and cultural aspects of disability. I invite you to contact Joan Durocher, General Counsel and Director of Policy, jdurocher@ncd.gov and Ana Torres-Davis, Attorney-Advisor, atorresdavis@ncd.gov, should you wish to arrange a meeting.

Respectfully,

Neil Romano
Chairman


[1] https://ncd.gov/sites/default/files/NCD_Genetic_Testing_Report_508.pdf

[2] Erik Parens and Adrienne Asch, “The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations,” Special Supplement, Hastings Center Report 29, no. 5 (September–October 1999): S1–S22.