Genetic Counseling Regulation Advances In Senate Committee

TRENTON – A bill sponsored by Senators Joseph F. Vitale, Jim Whelan, Shirley K. Turner and Nia H. Gill which would create a system of licensure and accountability for genetic counselors in the State of New Jersey was unanimously approved by the Senate Commerce Committee today.

“Genetic counseling has become an invaluable medical tool for parents looking to assess the risks of transmitting genetic disorders to their kids, and individual looking for greater understanding of their own health,” said Senator Vitale, D-Middlesex, the Chairman of the Senate Health, Human Services and Senior Citizens Committee. “As we move forward with cutting-edge health care – like personalized medicine and custom-made health care plans – genetic counseling is becoming an even bigger part of the future of medicine. Unfortunately, individuals looking for medical guidance have no way of knowing who’s an appropriate genetic counselor and who’s simply using the title without the necessary training and education.”

“Six other states in the nation already provide for the regulatory oversight and official licensure of genetic counselors because they recognize that qualified, experienced counselors serve the public good,” said Senator Turner, D-Mercer. “New Jersey has a responsibility to our citizens to ensure that only highly-trained, well-educated individuals pass themselves off as genetic counselors in this State. Through this legislation, we are advancing consumer protections for those looking for a better understanding of their own genetic history and ensuring that unscrupulous individuals don’t take advantage of the hopes and fears of patients seeking out legitimate genetic counseling.”

The bill, a Senate Committee substitute for S-1226 and S-1266, would establish a Genetic Counseling Advisory Committee under the State Board of Medical Examiners. The Committee would consist of five members, and would be charged with setting educational and experience standards and continuing education requirements for licensed genetic counselors, reviewing qualifications of applicants for licensure, ensuring proper conduct and standards of practice, and issuing and renewing licenses every two years pursuant to this act. The Committee would also maintain a record of every genetic counselor licensed in the State and promulgate any rules and regulations governing licensed counselors as designated by the Board of Medical Examiners.

Under the bill, genetic counseling is defined as a communication process conducted by trained individuals, which may include: obtaining and interpreting individual, family, medical and developmental histories; determining the mode of inheritance and risk of transmission of genetic conditions and birth defects; discussing the means of diagnosis and management of genetic conditions; evaluating the client’s or family’s response to the condition; and facilitating informed decision-making about testing, management and alternatives.

“By recognizing and licensing genetic counselors through the State of New Jersey, we are taking a strong step forward in legitimizing the practice in the eyes of the insurance industry,” said Senator Gill, D-Essex and Passaic, and Chairwoman of the Senate Commerce Committee. “Under the current system, many counselors, no matter how qualified or how helpful they are to their patients, cannot receive reimbursement from insurers for their services. However, with State licensure and regulation, we can put insurers fears to rest and can make a statement that genetic counseling has medical worth, and should be covered just like any other medical service.”

The measure would require that the following conditions be met as minimum criteria for licensure:

• A candidate for licensure must be at least 21 years of age;

• The candidate must be of good moral character;

• The candidate must have achieved a master’s degree or higher educational achievement in genetic counseling or its equivalent from an accredited institution of higher learning;

• The candidate must satisfy experience proficiencies required by the Genetic Counseling Advisory committee, which shall be at least equivalent to the standards set forth by the American Board of Genetic Counseling, or its successor.

Additionally, each individual would be required to pass an exam for licensure, which would be prepared and administered by the State Board of Medical Examiners, or through an approved testing organization.

“At present, genetic counseling is largely unregulated and unmanaged, and there’s no difference in the State’s eyes between counselors who’ve completed rigorous educational standards and fly-by-night operations,” said Senator Whelan, D-Atlantic. “People go to genetic counselors with hopes and concerns about their own health and safety and the health and safety of their children, looking for guidance in mitigating the risk of passing along genetic disorders. These people deserve to know that the counselors they’re speaking to are highly trained and have received the State’s ‘Good Housekeeping’ seal of approval.”

The committee substitute would provide that only an individual could be licensed as a genetic counselor, rather than a firm or corporation. Under the legislation, it would be unlawful for individuals, firms, partnerships, associations or corporations to advertise or offer genetic counseling services, or use the title of “genetic counselor” unless an individual with a current valid license would be rendering such services.

The measure would also exempt certain individuals from licensure, including those licensed to practice medicine and surgery, those licensed as registered professional nurses, students enrolled in an accredited genetic counseling educational program, or recent graduates of an accredited program who have not yet passed the examination for licensure, so long as these individuals do not hold themselves out as genetic counselors, or are acting as interns under the supervision of licensed counselors in the case of individuals currently studying or recently graduated from an accredited genetic counseling educational program.

Finally, the legislation would make it illegal for licensed genetic counselors from disclosing confidential information, except when disclosure is required by State or federal law, when the counselor is party to a civil, criminal or disciplinary action arising from their actions as a counselor; or when the patient is a defendant in a criminal proceeding and non-disclosure would violate the patient’s right to present testimony and witnesses in the trial.

The bill now heads to the Senate Budget and Appropriations Committee before going to the full Senate for consideration.

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