| Action | Initial regulations for licensure |
| Stage | NOIRA |
| Comment Period | Ended on 7/1/2015 |
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9 comments
I am asking that the patient be protected. The refusal clause in the licensure legislation is so broad that it would allow genetic counselors to deny counseling to their patients based on thecounselor"s personal beliefs. This could well lead to physical and emotional damage to the patient they are supposed to be helping.
Notwithstanding this harmful refusal clause in the enabling legislation, the Department has recognized that patients rely on genetic counselors’ counseling and referrals to help patients copewith difficult pragmatic, ethical, and social implications related to genetic testing. The Department has 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 these and other 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 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.
Thank you for protecting the patient.
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.
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. We at Falls Church Healthcare Center (FCHC), a faith based, community women’s center, often as part of our pre-conception or post-miscarriage healthcare, refer our patients for genetic testing or to genetic counselors. So we are following the current rulemaking for the licensure of genetic counselors that is before you now. As a result of the enabling legislation, a state-licensed genetic counselor will be able to deny counseling to any patient simply because the patient may want to take an action with which the counselor doesn’t personally agree; is of a different religious faith; is unmarried and pregnant or is lesbian or gay, etc. This legislation is so extreme that it will shield a genetic counselor from damages even if the counselor took purposeful action based on his or her personal beliefs and it resulted in the patient’s physical harm or death. Only your rulemaking can ensure the legislation is implemented in a way that ensures patients safety and health and ensures patients can trust and rely on genetic counselors to provide ALL the information they need. Do not enable terrible legislation.
The Board of Medicine and Department of Health Professions and we at FCHC recognize that patients rely on genetic counselors’ counseling and referrals to help patients cope with difficult implications related to genetic testing. Many of these decisions may be related to controversial political and moral issues. Patients must be able to rely on genetic counselors to provide medically sound and unbiased options and to protect patient privacy.
The Advisory Board and the rules you promulgate should include:
Thank you for your attention and your service to the public health and patient care of Virginians.
To the Virginia Board of Medicine and Department of Health Professions
As a physician, 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, based on the genetic information provided to the counselor, to 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, as some examples. This legislation will 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 these and other 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.
Health care practitioners, including genetic counselors, have a duty to put the interest of their patients ahead of their own interest. The “refusal clause” is fundamentally unethical and gives protection to practitioners who violate their duty.
Matthew Reeves, MD MPH FACOG
Medical Director
National Abortion Federation
During my training as a reproductive biologist at the Johns Hopkins Bloomberg School of Public Health, I collaborated with a team of genetic counselors at the Berman Institute Bioethics to explore a multitude of ethical challenges that we face as public health practitioners. A common theme of our discussions was the necessity for oversight and guidelines to ensure responsible practice.
As an OB/GYN in training, I continue to work alongside genetic counselors and acknowledge the benefits of a licensure protocol 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. However, a “refusal clause” written into an otherwise harmless legislation to license genetic counselors will allow genetic counselors to refuse service to patients based on “deeply held moral or religious beliefs” and will shield those same counselors from damages. As a direct result of this legislation, a state-licensed genetic counselor will be able to 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, as some examples. Moreover, this legislation is so extreme that it will 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.
In obstetrics & gynecology, I realize that many of my colleagues will make the personal decision to not provide abortions to patients in need. And while these conscientious objectors are not unfamiliar to the field of medicine, it is paramount to the safety and well being of our patients that protective measure and oversight are in place. In the case of fetal anomalies, individuals are often faced with serious and time sensitive decisions. In order to maintain the ethical responsibility to our patients, conscientious objection can only take place when adequate referrals systems are in place or another counselor is readily available. A blanket statement that genetic counselors can refuse to counsel a patient without appropriate guidelines is tantamount to malpractice.
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.
Respectfully submitted,
Brent Monseur Sc.M.
Medical Students for Choice, Board of Directors
VCU School of Medicine M.D. Candidate ‘16
Genetic counselors provide an invaluable service to physicians and patients. By providing the latest, up to the minute information about the diagnosis of inheritable conditions and diseases they assist physicians and patients make informed decisions about their healthcare and lifestyles. They serve as a physician extender providing service under the physician's supervision.
The right to informed consent is fundamental to modern healthcare and has been upheld in multiple court decisions. Without information and counseling about all options available, one can not make an informed decision.
As an OB/gyn for 27 years, I understand that informed consent means that the healthcare decision is the patient's to choose, not mine. Sometimes patients will make decisions that I believe are incorrect. Rarely, I am morally opposed to that decision. As a physician, I am not required to provide the medical or surgical care which I oppose, but it is my duty to help to help the patient find alternative care. Otherwise, it is abandonment and considered medical malpractice.
Genetic counsellors should never have the option of denying patients information they need to make an informed decision by claiming moral opposition to such information. Like their supervising physicians, they should be required to provide patients with alternative referral sources to help them make informed decisions. Their referral physician should also be informed of such a plan of care.
I agree that the Advisory Board of Genetic Counselors should craft legislation outlining the procedures to be followed in cases where genetic counselors are morally opposed to counseling about certain disease states or treatment options. Without such assurance, patients can not be guaranteed informed consent and physicians will be at the whim of each genetic counselor for whom we remain liable.
As a perinatologist, I write to express my support for rule-making 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, based on the genetic information provided to the counselor, to 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, as some examples. This legislation is so extreme that it will 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 these and other 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.
As a representative of Virgnia's lesbian, gay, bisexual, and transgender community,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, based on the genetic information provided to the counselor, to 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, as some examples. This legislation is so extreme that it will 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 these and other 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.
James Parrish
Executive Director
Equality Virginia
To the Virginia Board of Medicine and Department of Health Professions,
As a physician, I support legislation for the licensure of genetic counselors within the highest standards of medical responsibility. The refusal clause, as currently stated, allows a counselor to withhold full/accurate information based on personally held beliefs and while requiring disclosure of counseling refusal, does not explicitly state a reasonable time period for this disclosure or for referral. This could significantly impact patient care.
For these and other 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:
1. 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
2. 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
3. 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.
Thank you for your consideration,
Frances Casey, MD, MPH