Genomic Medicine and Genetic Counseling in the Department of Veterans Affairs and Department of Defense
The following is a lightly edited transcript of a teleconference recorded in July 2019.
Vickie Venne. I want to move to our final piece. What do the referring providers tell the patients about a genetics referral and what should they expect?
Lisa Arfons. First and foremost, I tell the patient that it is a discussion with a genetic counselor. I make it clear that they understand that it is a discussion. They then can agree or not agree to accept genetic testing if it’s recommended.
I talk in general terms about why I think it can be important for them to have the discussion, but that we don’t have great data for decisionmaking. We understand that there are more options for preventive measures but then it ultimately will be a discussion between the PCP, the patient, and their family members about how they proceed about the preventive measures. I want them to start thinking about how the genetic test results, regardless of if they are positive, negative, or a variant that is not yet understood, can impact their offspring.
Probably I am biased, as my mom had breast cancer and she underwent genetic testing. So, I have a bit of an offspring focus as well. I already mentioned that you must discuss about whether or not it’s worth screening or doing any preventive measures on contralateral breast, or screening for things like prostate cancer at age 75 years. And so I focus more on the family members.
I try to stay in my lane. I am extremely uncomfortable when I hear about someone in our facility sending off a blood test and then asking someone else to interpret the results and discuss it with the patient. Just because it’s a blood test and it’s easy to order doesn’t mean that it is easy to know what to do with it, and it needs to be respected as such.
Ishta Thakar. Our PCPs let the patients know that GMS will contact the patient to schedule a video appointment and that if they want to bring any family members along with them, they’re welcome to. We also explain that certain cancers are genetically based and that if they have a genetic mutation, it can be passed on to their offspring. I also explain that if they have certain mutations, then we would be more vigilant in screening them for other kinds of cancers. That’s the reason that we refer that they get counseled. After counseling if they’re ready for the testing, then the counselor orders the test and does the posttest discussion with the patient.
Vickie Venne. In the VA, people are invited to attend a genetic counseling session but can certainly decline. Does the the DoD have a different approach?
Maj De Castro. I would say that the great majority of active duty patients have limited knowledge of what to expect out of a genetics appointment. One of the main things we do is educate them on their rights and protections and the potential risks associated with performing genetic testing, in particular when it comes to their continued ability to serve. Genetic testing for clinical purposes is not mandatory in the DoD, patients can certainly decline testing. Because genetic testing has the potential to alter someone’s career, it is critical we have a very thorough and comprehensive pre- and posttest counseling sessions that includes everything from career implications to the Genetic Information Nondiscrimination Act (GINA) and genetic discrimination in the military, in addition to the standard of care medical information.
Scenarios in which a servicemember is negatively impacted by pursuing a genetic diagnosis are very rare. More than 90% of the time, genetic counseling and/or testing has no adverse career effect. When they do, it is out of concern for the safety and wellbeing of a servicemember. For instance, if we diagnosis a patient with a genetic form of some arrhythmogenic disorder, part of the treatment plan can be to limit that person’s level of exertion, because it could potentially lead to death. We don’t want to put someone in a situation that may trigger that.
Vickie Venne. We also have a certain number of veterans who ask us about their service disability pay and the impact of genetic testing on it. One example is veterans with prostate cancer who were exposed to Agent Orange, which has been associated with increased risk for developing prostate cancer. I have had men who have been referred for genetic evaluation ask, “Well, if I have an identifiable mutation, how will that impact my service disability?” So we discuss the carcinogenic process that may include an inherited component as well as the environmental risk factors. I think that’s a unique issue for a population we’re honored to be able to serve.
