NCSL Genetics Brief
Genetic Counselor Licensing
By Alissa Johnson
The results of a genetic test to analyze an individual's genes, gene products or chromosomes—structures composed of DNA that lie inside a cell's nucleus—have complex implications for the individual tested and his or her blood relatives. Patients and medical professionals who lack skills in genetics may have diffculty understanding or correctly interpreting genetic test results. Genetic counselors specially trained in the scientific and psychosocial aspects of genetic testing can help families and their health care providers throughout the testing process. Recognizing that genetic counselors play a key role in the delivery of this technology to consumers, a number of states have considered or enacted legislation to require the licensure of genetic counselors and regulate the profession.
What is Genetic Counseling?
Health care providers may want a patient to decide whether to undergo genetic testing under certain circumstances such as to confirm a diagnosis, to conduct prenatal testing, or to determine whether an individual may have a genetic predisposition to a disease. Genetic counselors provide a variety of services before, during and after genetic testing. These services may involve the following:
- An explanation of the power and limits and risks and benefits of genetic testing;
- Interpretation of family histories and other medical information;
- Family health risk assessment for a condition;
- Outline of the options available to families prior to and post testing;
- Explanation of possible medical consequences of genetic test results;
- Counseling for individuals and families who receive unfavorable tests results to help them cope with genetic diagnoses and risks;
- Coordinate care; and
- Identify resources.
Health professionals may have particular difficulty navigating the decision-making process around predictive genetic testing to determine an individual's future risk of disease. In almost all cases, predictive genetic tests do not predict with certainty whether an individual will manifest a condition later in life. Test results are probability based with the rare exception of disorders such as Huntington disease. This means that results indicate an increased likelihood of future illness—if any—based on an individual's genetic makeup.
The volume of new developments in genetics also may hinder the ability of health care providers to appropriately consult with patients about testing. Nonspecialists in genetics may lack the training or time to keep up with the latest changes in research and technology. Practitioners who are able to gather the necessary information may not have adequate time in the patient visit to discuss all of the issues around genetic testing, which are often complex.
Policy Issues
At least 12 state legislatures have considered or enacted bills that require a license to practice genetic counseling--legally formalizing the role of the counselor in the genetic testing process. Components of genetic counselor licensing legislation may include:
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A definition of the practice of genetic counseling;
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Requirements for the supervision of genetic counselors by a referring physician or health care provider;
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Minimum qualifications to practice genetic counseling;
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Exemptions for individuals with specific certifications from some qualifying criteria;
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Temporary licensure provisions;
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Confidentiality measures regarding patient genetic test results;
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Licensure fees;
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Periodic license renewal and continuing education requirements; and
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Penalties for unprofessional conduct.
Resources for Policymakers
NOTE: The websites below are provided for informational purposes only. The viewpoints expressed of these organizations do not necessarily reflect those of NCSL.
Licensure of genetic counselors may help to further the practice of genetic counseling in several ways. For instance, licensure may encourage more individuals to consider genetic counseling as a profession and increase the number of practicing genetics specialists in a state, which in many cases is low. It also may ease the ability of genetic counselors to receive reimbursement for services rendered. In addition, patients may feel reassured that the individual who provides genetic counseling has the necessary qualifications to do so.
Interested policymakers may want to learn more about how licensure may impact the pool of genetic counseling services available in the state. For example, legislators may want to examine how licensure might improve or hinder the ability of individuals to practice genetic counseling across state lines where services may be provided remotely now or in the future. Policymakers also may want to look at whether individuals who have experience with genetic counseling but may not meet new licensure requirements might be allowed to continue to practice while taking the necessary steps to qualify for a license.
For More Information
Please contact NCSL's Health Program at 303-364-7700.
©July 2006 |
