This is part of a blog series from genetic counselors at the Basser Center. This was written by Jessica M. Long, MS, LCGC.
Considering your options: Time, travel and telegenetics
A prior blog post reviewed the potential benefits, costs, and limitations of direct-to-consumer (DTC) genetic testing for hereditary cancer risk. For many people considering testing, it may be more beneficial to be evaluated in-person by healthcare specialists with expertise in hereditary cancer risk. Genetic counselors help guide a person through the process of genetic testing and cancer risk assessment. The major advantage of meeting with a genetic counselor before testing is to allow for a more complete assessment of your individual needs, including review of family history and personal health history, to help you decide which test may be best for you. Genetic counselors provide relevant information about available genetic test options, in order to help support informed decisions about genetic testing. Additionally, genetic counselors typically discuss the possible consequences of genetic test results, which can provide an upfront understanding of the impact this may have on a person and their relatives.
However, there are sometimes barriers to meeting with a genetic counselor in person, such as time or distance constraints. Other options are also available. Some will begin the testing process with their trusted local primary care provider, while others will test themselves with an at-home kit and then seek out a genetics specialist later, if necessary. Another option is the use of telegenetics, in which a genetic counselor is available by phone to help a person understand their genetic testing options, results, and implications. Some DTC genetic testing companies do employ genetic counselors working in telegenetics, while other genetic counselors in telegenetics are independently employed. Post-test genetic counseling can be worth pursuing, particularly for those who test positive for a hereditary condition on a DTC genetic test and need assistance determining next steps when in person medical care from an expert is difficult to find or arrange.
Genetic counseling: What to expect
Genetic counselors are healthcare professionals with advanced training in genetics and counseling. They educate and support people who wish to learn about hereditary conditions, understand test results, and consider the ways in which this information can affect a person and their relatives.
Prior to genetic testing, an appointment with a cancer genetic counselor can help a person learn more about available test options, including the advantages, disadvantages, and limitations of genetic testing. An individual’s personal and family history information also will be reviewed, which can help provide context to the potential outcomes of genetic testing. This includes potential medical decisions that may arise based on the genetic test result, as well as implications for relatives.
Before pursuing any genetic testing for hereditary cancer risk, it can be helpful to first consider:
- Do I feel fully informed about what this testing can and cannot tell me about my health?
- What could this information mean for me and my family?
- Is this a point in my life when I want or need to know this information?
- If I were to learn of a health risk, are there options and resources in place to help me address the risk?
After a person receives a positive genetic test result, a genetic counselor will help that person prioritize next steps. Genetic counselors often work closely with expert physicians knowledgeable about genetics, and will refer to these providers to help inform the nuanced medical decisions the patients will now face.
For individuals who sought genetic testing via an alternate route, such as an at-home testing kit, consulting with a genetic counselor can still be a worthwhile option, even if you have completed the test and have your results. Given the vast amount of new information conveyed with a positive genetic test result and the emotions involved, it can be difficult to fully process this information on first pass. Often, individuals in the post-test phase appreciate the chance to connect with a genetic counselor to revisit the meaning of results, ask new questions, and develop a plan for communicating those results to their relatives. Regardless of which path you take to learn your genetic test information, genetic counselors are dedicated to helping support you and your family on this journey.
How to identify a genetic counselor locally or by phone:
- National Society of Genetic Counselors – a national organization of genetic counselors that can help you locate a genetic counselor, either in person or by phone.
- Penn Medicine’s Telegenetics Patient Access Pilot – a pilot telegenetics program here at Penn Medicine.
- Informed Medical Decisions – telephone-based services provided by a national network of independent genetic counselors.
- Contact your local cancer center or closest academic medical center. For example, genetic counselors who provide BRCA genetic testing are often a part of the breast health centers at academic medical centers or cancer centers.