It’s dizzying to consider how genetic testing could change our approach to managing our health, making it possible to focus effort based on risk, before a disease even develops.
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But it also raises complex questions about privacy. You might wonder whether the information that comes to light could raise your insurance premiums or affect an employer’s decision to hire you.
The answer is no — results of genetic testing cannot affect your future insurance coverage or employment. The Genetic Information Nondiscrimination Act prevents insurance companies from canceling your insurance or raising your rates as a result of testing. The act also specifies that your genetic information cannot be used in hiring or personnel decisions.
The Affordable Care Act (ACA) even requires insurance companies to pay for some types of predictive genetic testing. In some ways, it is a win-win situation because testing is much cheaper for insurance companies than eventual diagnosis and treatment.
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Detailed informed consent
Doctors usually refer patients for genetic counseling for a specific indication. During a consultation, the genetic counselor will determine if genetic testing is appropriate, and if so, discuss the options for genetic testing.
If you decide you want genetic testing, you should expect a detailed informed consent process. You and a genetic counselor will discuss the benefits, limitations and implications for both yourself as well as your family members.
“We work to do a great deal of education on the front end,” says Jill Polk, licensed genetic counselor with the Center for Personalized Genetic Healthcare, the clinical component of Cleveland Clinic’s Genomic Medicine Institute.
“It’s a process to provide information about people’s options, and what information they would obtain from proceeding,” she says.
Personal, family history review
At the initial consultation, you’ll provide a detailed review of your personal and family history.
The doctor’s reason for referring you will focus this discussion, which is geared toward assessing your overall risk.
“For example, if the patient may have risks for developing cancer, we might ask: “What types of cancers do people in your family have, and how old were they when they were diagnosed?” Ms. Polk says. She works to assess the person’s lifetime chance of developing the associated cancer.
“We also try to figure out what the chance is that the person’s presenting concern is due to genetic risk factors,” she says.
If the individual is found to have a genetic-related concern, sometimes other family members such as parents, siblings or even cousins want to follow up, Ms. Polk says.
Blood samples and results
Blood samples provide the basis for most genetic testing. Once a patient gives a blood sample, it is sent to specialized genetic testing laboratories for testing. Different types of testing require different turnaround times; your genetic counselor should let you know the timing.
When the results are ready, you will be notified by phone or, if you request, in person. The results will also be added to your electronic medical record.
“At Cleveland Clinic, any physician within the hospital system will have access to a patient’s result as they continue to manage their care. It becomes part of your medical history,” Ms. Polk says.
It’s crucial that the results be available to your doctors for implementing screening and management recommendations, she says.
Does it work?
Counseling provides predictive, preventive information that can help you and your doctors make future decisions. You might wonder: How good is this test at identifying my risk?
The answer to this question varies depending on the specific tests performed, Ms. Polk says.
“Patients sometimes come in with questions about the limitations of genetic testing. They want to know how sensitive the tests are.”
This varies by the disease or diseases being tested. “I and other genetic counselors work to educate each person about the specific test being performed as well as its sensitivity. Our testing technology is constantly being improved,” she says.
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