Genetic counselors are health professionals possessing specialized graduate degrees and clinical experience in the areas of medical genetics and 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 are committed to expanding their knowledge of advances in medical genetics via continuing education activities and professional networking.

Cases of Harm

The stories below were taken from actual cases where Texans were given erroneous information regarding genetic conditions and/or genetic testing. In many cases, these individuals believed they were seen by a genetic counselor. Licensure of Genetic Counselors would seek to limit who can refer to themselves as such, thereby ensuring that patients receive appropriate services from credentialed and monitored health care providers. Unfortunately, the patients in these cases made decisions based upon the misinformation they received, sometimes resulting in poor outcomes. If you or someone you know has been in a similar situation to the ones below, please contact us.
A patient was seen by a private oncology office for breast cancer gene testing. She was seen by the “genetic counselor,” a physician's assistant whose only training was provided by the medical laboratory who offers the testing. The patient had a personal history of ovarian cancer and a family history of breast and ovarian cancer as well. One of her sisters had already tested positive for a breast cancer gene mutation, putting the patient at 50% risk. The physician's assistant calculated a 33% risk for the same mutation, but neglected to include the patient’s diagnosis of ovarian cancer in the calculation. Including this information would have increased her risk for the familial mutation to almost 100%, rather than the 33% that she was quoted. In this case the physician’s assistant did not understand the concept of dominant genetic inheritance or cancer risk assessment. Additionally, because the known familial mutation was ignored, this patient underwent full gene sequencing at a cost of $3120 instead of single mutation testing for $385.
A pregnant patient had an ultrasound and was told the baby had a gastroschisis, a defect of the abdominal wall generally associated with a good outcome after delivery and surgical correction. The woman, unaware of this information, pursued a termination of pregnancy based on what she believed to be a “poor prognosis and severity of the defect.” Had the patient had access to a genetic counselor, she would have received a clearer picture of the potential outcome for her child, prior to making this decision.
A couple delivered a child that was diagnosed prior to birth with a severe kidney abnormality. The child did not survive the newborn period, a genetic diagnosis was never made and genetic testing was never performed. Because the couple did not have access to a genetic counselor, they did not understand the importance of obtaining confirmation of the child’s underlying diagnosis. In planning for a future pregnancy, it is now impossible to advise the couple regarding the risk of recurrence for a similar problem, or whether there may be testing options available.
A man was referred to a neurology clinic for a movement disorder. His provider ordered genetic testing for Huntington’s disease outside of the standard genetic counseling/testing protocol. This lack of access to such counseling resulted in incomplete understanding by the family of the ramifications of genetic testing. When the man’s results indicated that he did, in fact, have a Huntington’s disease gene mutation, he was finally referred to a genetic counselor. During the session, the counselor learned that the man did not have life, disability, or long-term care insurance. The genetic counselor would have discussed the impact a genetic mutation may have had on the man’s eligibility for such insurance prior to his undergoing genetic testing. The man later attempted to obtain insurance and was denied due to his diagnosis.