Licensure
Who Are Genetic Counselors?
Genetic counselors are health professionals with specialized graduate-level training in medical genetics and psychosocial counseling. Genetic counselors are trained in accredited Masters degree programs and individually certified via examinations administered by the American Board of Genetic Counseling.
Genetic counselors have a presence across various medical specialties including Cardiology, Genetics and Genomics, Maternal-Fetal Medicine, Neurology, Oncology, and Pediatrics among others. Genetic counselors help patients and their healthcare providers understand medically relevant genetic risks and help guide clinical follow up.
Several genetic counselors provide their expertise to clinical genetic testing laboratories and industry partners while others are part of academic centers and are involved in research.
How Do Genetic Counselors Serve Texas Health Care Consumers?
Genetic counselors evaluate and assess risk for genetic disease by:
Obtaining and interpreting an individual’s medical history and family history
Identifying and facilitating appropriate genetic tests.
They communicate information about genetic disease by:
Assessing client’s education and knowledge level
Facilitating informed decision-making about genetic testing and clinical care
Discussing inheritance, natural history and prognosis of a genetic condition
Discussing diagnosis of, and recommended medical management for a genetic condition
Providing clear written documentation to clients and medical providers.
They assess the psychosocial and cultural impact of genetic disease by:
Evaluating and tracking the client’s response to the information.
Providing supportive, client-centered counseling.
Utilizing appropriate resources to enhance the adaptation process.
How Do Genetic Counselors Impact Health Care In Texas?
In 2008:
Genetic counselors touched the lives over 85,700 patients and families, a 62% increase in the total number of patients served in only 4 years.
Genetic counselors cared for almost 27,000 pregnant women at risk for fetal birth defects or genetic disease, 8,300 children and adults living with genetic disorders and 3,800 individuals at risk for hereditary cancer syndromes.
Genetic counselors provided consultation to more than 45,000 individuals, families and physicians utilizing genetic testing or information services.
Genetic counselors helped more than 1,200 individuals and families decide whether or not participating in genetic research was right for them.
The Need For More Licensed Genetic Counselors In Texas
In order to ensure all Texans have access to necessary medical care and appropriately trained genetics health care providers, it is imperative that we increase access to genetic counselors and high quality genetic medicine in the state.
Genetics in Healthcare
3% of all babies are born with a birth defect.
1 in 9 children admitted to the hospital has a genetic disorder.
20-30% of all infant deaths are due to genetic disorders.
1 in 2 cases of intellectual disability has a genetic basis.
1 in 12 adults admitted to the hospital has a genetic disorder.
1 in 22 people in the United States has a genetic disorder.
1 in 10 cancers is hereditary
1 in 10 cases of chronic diseases (heart disease, diabetes, arthritis) has a significant genetic component
Genetic testing is a powerful tool that provides information that can save lives through tailored medical care and therapeutic options. Genetic counselors are specifically trained to identify appropriate genetic tests, interpret genetic test results, and use the information to guide medical care. Genetic counselors are essential for the healthcare of babies with birth defects, as well as children and adults with genetic disorders.
The Shortage of Genetic Counselors in Texas
Despite the large impact genetics has on medicine and the important role genetic counselors play in healthcare, the state of Texas, one of the largest states in the United States, has a great shortage of genetic counselors. Currently, there are approximately 4 genetic counselors to serve every 500,000 Texans. Access to genetic counseling and genetic testing is even more limited for underserved Texans and those who live outside of the larger metro areas.
In some cases, when clinicians do not have access to local genetic counselors, they contract with out-of-state genetics specialists to provide care for their patients, which leads to Texas healthcare dollars flowing outside of the state.
The Burden On Non-Genetics Healthcare Providers
Genetic testing should be used responsibly and appropriately by trained experts. Misinterpreting genetic test results can lead to unnecessary & expensive surgeries or therapies, resulting in devastating physical, emotional and/or financial harm to patients. Moreover, ordering unnecessary testing can waste millions of healthcare dollars.
Lack of access to genetics specialists like genetic counselors often forces clinicians who have no training in medical genetics to provide genetics-related healthcare, which can have negative consequences for healthcare consumers and the healthcare system.
Studies show:
>30% of non-genetics medical providers misinterpret results of genetic tests.
>$60,000 can be saved by institutions per month by involving a GC in the genetic testing process
>$4 billion can be saved over 10 years by improving payor access to genetic counseling
The Rise In Direct-To-Consumer Genetic Tests
Genetics has become synonymous with precision medicine and advances in technology have led to more cost-effect genetic testing with a quicker turnaround time for results. This in turn has led to the rise of direct-to-consumer genetic tests that are available online with the click of a mouse or at one’s local drug store, without the involvement of a healthcare provider. These tests primarily provide information about common traits and ancestry as well as limited information about certain genetic health risks. However, these unregulated consumer-grade tests are not a substitute for clinical medical tests and should not be used to make healthcare decisions.
The clinical validity and utility the test methodologies used by these companies for assessing common diseases is not well established at this time. The genetic changes analyzed with these tests have a very small effect size and testing companies are sometimes not consistent in the findings they report, resulting in differing risk estimates. Despite this caveat, consumers do make medical decisions based on results from these tests with studies showing only about 1-14% of consumers seeking advice from a genetics healthcare specialist.
Furthermore, companies offering these tests often release a consumer’s raw genetic data, which can be uploaded to third-party tools for further interpretation. Research shows that approximately 40% of “clinically significant” findings identified by these interpretation tools are in fact false positives and can inaccurately be used to make drastic healthcare decisions if not further evaluated by a healthcare provider who can interpret this information.
The Rise In Fraudulent Genetic Tests
Increased availability and awareness of genetic testing has not only led to increased interest in learning about one’s own genetic risks, but has also led to a rise in scammers willing to take advantage of vulnerable populations. On June 3, 2019, the Office of Inspector General (OIG) issued a fraud alert informing the public about fraudulent genetic testing companies that were taking advantage of Medicare beneficiaries (https://oig.hhs.gov/fraud/consumer-alerts/alerts/geneticscam.asp). Scammers offered Medicare beneficiaries cheek swabs for genetic testing to obtain their Medicare information for identity theft or fraudulent billing purposes, and targeted individuals through telemarketing calls, booths at public events, health fairs, and door-to-door visits. This large-scale scam led to $2.1 billion dollars being billed to the U.S. Medicare Program.
Increased access to medical professionals trained in genetics will allow Texas consumers to consult with these providers in order to make informed decisions about their genetic healthcare.
The Importance of Licensing Genetic Counselors in Texas
Genetic counselors provide important medical care to healthcare consumers, similar to other medical professionals like physician assistants, nurses and physicians, who are licensed in Texas. It is important that genetic counselors in Texas be licensed to ensure that every genetic counselor practicing in the state of Texas meets minimum requirements for safe practice.
Without licensure, most genetic counselors in Texas cannot be credentialed by their employers or bill for their services. This makes it more difficult for medical centers or practices to hire genetic counselors, thereby making it harder for genetic counselors to offer services such as telemedicine to patients who may not otherwise have access to genetics services. Moreover, without licensure, genetic counselors are unable to practice independently, and require physician supervision, which puts further limitations on an already strained resource.
The National Landscape of Genetic Counselor Licensure
35 states currently issue genetic counselor licenses or have passed legislation for genetic counselor licenses.
13 additional states have proposed legislation to enact genetic counselor licensure.
References
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Fraud Alert: Genetic Testing Scam. Fraud Alert: Genetic Testing Scam | Office of Inspector General | U.S. Department of Health and Human Services. https://oig.hhs.gov/fraud/consumer-alerts/alerts/geneticscam.asp. Published August 14, 2019. Accessed August 12, 2020.
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Survey of 90/111 TSGC members 2013
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Cases of Harm
Nearly 17.5 million Texans are projected to benefit from the results of genetic analysis. Genetic counselors are highly trained healthcare professionals who help patients and their clinicians understand and use important genetic information for health care. Inappropriate genetic testing or misinterpretation of results by clinicians who lack appropriate training and have insufficient knowledge of genetic testing could lead to adverse outcomes for patients. These include irreversible medical decisions, unwarranted medical tests and surveillance, or the failure to adopt life-saving measures. High quality genetics care is achieved by the licensing of genetic counselors and the Texas Society of Genetic Counselors (TSGC) is committed to ensuring Texans have access to high quality care surrounding genetic testing by passing a bill to licensure genetic counselors in Texas. Please help TSGC in our licensure efforts by sharing your story.