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Genetic Counseling Regulation Approved In State Senate

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 approved by the Senate today by a vote of 38-0.

“The future of medicine – particularly in the area of designer drugs, personalized medicine and custom-made health plans – is going to depend on genetic counseling,” said Senator Vitale, D-Middlesex, the Chairman of the Senate Health, Human Services and Senior Citizens Committee. “With this bill, we would put into place a regulatory structure to provide needed oversight and accountability for these health care professionals who can do so much to expand the effectiveness and affordability of health care moving forward. This bill is about making sure New Jersey has the foresight needed to meet the health care challenges of tomorrow, and ensure accountability and standards in the burgeoning genetic counseling field.”

“For the good of the people we represent, New Jersey needs to join the six other states around the nation which are currently providing licensure and oversight of genetic counselors,” said Senator Turner, D-Mercer. “Right now, it is difficult to tell the difference between a highly-educated, well-trained genetic counselor and a sophisticated fraud, and many people are finding themselves taken advantage of by con-men with fancy business cards. This bill advances needed consumer protections and ensures that only those qualified to offer genetic counseling in New Jersey do so.”

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.

“This bill allows New Jersey an opportunity of accountability and access to a cutting-edge field which will revolutionize the practice of health care in the very near future,” said Senator Gill, D-Essex and Passaic, and Chairwoman of the Senate Commerce Committee. “Genetic counseling is at the very core of personalized medicine, and will greatly enhance the ability of doctors to tailor health care to the very specific needs of individual health care consumers. By creating a mechanism for oversight and licensure of genetic counselors, we can take a strong first step to protect consumers and bolster genetic counseling in the Garden State.”

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.

“Without a licensure component, there is no difference in the State’s eyes between legitimate genetic counselors and con-artists looking to prey on the health care concerns of their victims,” said Senator Whelan, D-Atlantic. “Genetic counseling can be a useful tool in assessing the risks and dangers posed by diseases and medical conditions passed from one generation to the next. However, without proper licensure and oversight, consumers have no way of knowing whether or not they’re receiving a true genetic analysis or a scam report looking to capitalize on their fears and concerns over their own health and the health and safety of their kids.”

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 Assembly for a vote of concurrence with Senate Committee amendments. If approved, it would go to the Governor to be signed into law.

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