If for example, you encountered a client with G6PD deficiency or Hereditary Breast and Ovarian Cancer Syndrome (HBOC), what could be the genetic information that are important to impart to the client? How can the genetic counselor-client relationship be strengthened? How can the client's autonomy be supported? How can we ensure the resilience of our clients? How do we consider the client's emotions during the genetic counseling engagement?
Genetic counseling intends to assist patients and their families gain enough knowledge for them to make decisions about testing and technology, manage their genetic conditions, and cope with the aftermath of post-counseling and testing. We do not simply “educate” our patients about their condition nor do we only provide psychosocial support.
If I were to deal with a patient with Hereditary Breast and Ovarian Cancer Syndrome (HBOC), assuming she is female, before anything else I must be able to establish a good rapport with my patient and her family. Fostering a relationship with trust and good communication is paramount if we want to effectively counsel our patients.
Concerning education, the burden for me as a genetic counselor is how I would be able to elicit pertinent biomedical information from the patient and provide genetic information in a way that the patient would comprehend, taking into account the possible emotional impact of such information. Because no two patients are alike, I must be able to create an individualized plan of action for the patient. I must be aware that several factors affect the patient’s learning including, but not limited to, individual, familial and cultural characteristics; values; prior knowledge, beliefs, and experience.
Assessment of the patient’s desire for information also takes precedence. After gathering the pertinent information, I may be able to draw up the patient’s pedigree and trace the family history. It would be important to mention to the patient and her family that her condition may be associated with either BRCA1 or BRCA2 germline pathogenic variant. Evaluating the risk of relatives in the family may also be offered. I should explain that HBOC is an autosomal dominant condition and that she may have inherited it from one of her parents, but I should also explain that this may also not be the case. I should also discuss the risk of her having offspring with the same condition. I must also present the possibility of prenatal and preimplantation genetic testing to the patient. Also the available screening tests for other cancers that she may be at risk for due to her condition. I do not expect to cover everything there is to discuss about the patient’s condition in just one seating. Over the course of our counseling sessions, we may be able to discuss the possible options for treatment, possible prophylactic surgery and hormone therapy, and related genetic cancer research, among others.
According to Veach, genetic information is “loaded”, creating affective, cognitive, and behavioral reactivity in patients and their families. Hence, we must always give time for our patients to digest and process information. We can strengthen our genetic counselor-client relationship by making our clients feel heard and understood. We should foster an accepting and non-judgmental environment where our patients can feel free to air their concerns and ask any questions they may have.
We must always remind them that they have full control, that nothing will be done without their consent, and that we will be there for them every step of the way. We must respect their opinions but also be ready to lead them back gently to the right path should they stray too far for their own good. We must constantly assess our patients’ reception, perception, and use of genetic information given to them. We must constantly evaluate their emotional state throughout the whole ordeal to ensure their resilience. We must recognize and harness their strengths and prepare them for all possible outcomes. Ultimately, we must remember to always instill realistic hope in them.