As a nurse who has provided patient care and served as an educator and researcher, I write to express my support for rulemaking for the licensure of genetic counselors that is based on the highest standards of professional competence, and on the values of care and respect for the patient’s autonomy, individuality, welfare, and freedom. In 2014, a “refusal clause” was written into otherwise harmless legislation to license genetic counselors, allowing genetic counselors to refuse service to patients based on the counselors’ “deeply held moral or religious beliefs” and to shield those same counselors from damages. As a result of this legislation, a state-licensed genetic counselor will be able to act in a non-professional manner that is not consistent with the ethical principles of health professionals. For example, based on the genetic information provided to the counselor, s/he could deny counseling to any patient simply because the patient is lesbian or gay, is of a different religious faith, is unmarried and pregnant or the person may want to take an action with which the counselor doesn’t personally agree. This legislation is flawed because it is extreme and could shield a genetic counselor from damages even if the counselor took purposeful action based on his or her personal beliefs that results in actual physical harm or death to the patient.Notwithstanding this harmful refusal clause in the enabling legislation, the Board of Medicine and Department of Health Professions have recognized that patients rely on genetic counselors’ counseling and referrals to help patients cope with difficult pragmatic, ethical, and social implications related to genetic testing. The Board and Department have likewise recognized that, because many of these decisions are related to controversial political and moral issues, patients must be able to rely on genetic counselors to provide unbiased information and to protect patient privacy.
For all of the above reasons, I urge the Advisory Board on Genetic Counseling to promulgate rules directing that the scope of practice of genetic counselors be consistent with standards articulated by the American Board of Genetic Counseling. Moreover, I urge the Advisory Board to incorporate the Code of Ethics of the National Society of Genetic Counselors in its rules for the standards of professional conduct for genetic counselors. In addition, the Advisory Board should articulate with specificity: what constitutes a reasonable time period for the genetic counselor to inform his or her prospective and existing client of his or her refusal to participate in certain genetic counseling; what constitutes a reasonable time period by which the genetic counselor, upon refusal to counsel his or her patient due to moral or religious reasons, will refer his or her patient to the online directory of genetic counselors maintained by the Board; and finally, how the genetic counselor will accommodate the legal requirement for referral when the patient does not have, or cannot reasonably obtain, access to the online directory of genetic counselors maintained by the Board.  

I appreciate the difficult task the Board is undertaking, and trust that the principles of professional ethics for ALL health care professionals will prevail.

Sharon Williams Utz, PhD, RN, Associate Professor Emeritus, University of Virginia School of Nursing.