Cancer Risk Assessment/Counseling and Cultural Competence
In 2004, the National Society of Genetic Counselors presented a set of practice recommendations for genetic counselors conveying cancer genetic risk assessment and counseling (Trepanier et al., 2004). A variety of information is collected to assess the client’s perceived estimate of personal cancer risk and the methods by which decisions are made. Such information may include but is not limited to the following:
1) Motivations for seeking a cancer risk consultation
2) Beliefs about cancer etiology and perception of risk
3) Ethnocultural information
4) Socioeconomic and demographic information
5) Psychosocial factors
6) Cancer screening
7) Health behaviors
8) Coping strategies
To assess Jean’s risk perception, what questions would you ask?
1) Phrase a question to ask Jean to assess her motivations for seeking a cancer risk consultation.
Example: What is your understanding of why you were referred for genetic counseling today? How do you feel about being here?
2) Phrase a question to assess Jean’s beliefs about her perceived risk of cancer.
Example: What do you think your chance is of developing breast cancer?
3) Phrase a question you would ask Jean to get a better understanding of her cultural framework.
Example: Do you identify with a particular culture? Please tell me about your culture.
4) Phrase a question to assess Jean’s socioeconomic and demographic information.
Example: Who lives at home? Tell me about your home life.
5) Phrase a question to assess Jean’s psychosocial support.
Example: Who have you talked to about this appointment?
6) Phrase a question to assess Jean’s cancer screening practices.
Example: Tell me about when and why you visit the doctor.
7) Phrase a question to assess Jean’s health behaviors.
Example: Jean, how would you describe your health? What do you do to stay healthy?
8) Phrase a question to identify Jean’s coping strategies.
Example: How do you usually deal with stressful events in your life?
Cultural competency is a set of skills, knowledge, and attitudes that enhances a clinician’s understanding of and respect for a patient’s
values, beliefs, and experiences; awareness of one’s own assumptions and value system; and ability to adapt care to the patient’s expectations and preferences. The PRACTICE mnemonic was developed to help health care providers integrate cultural competency
skills in genetics into primary care (Reynolds et al., 2005). Let’s consider how a typical cancer counseling session aligns with the format of PRACTICE. We’ve inserted typical topics of discussion in the cancer counseling session under each section of the PRACTICE mnemonic framework. We encourage you to consider ways to incorporate PRACTICE into your genetic counseling caseload.
Prevalence of a disease in the population, and known statistics and racial disparities in disease prevalence and mortality
Breast cancer is a common disease, and 1 in 8 women will develop breast cancer in her lifetime.
Risk that a disease has a genetic basis
About 5-10% of breast cancer is associated with hereditary cancer syndromes. Certain ethnic groups, such as individuals who are Ashkenazi Jewish, are more likely to have breast cancer due to a hereditary syndrome than others. Questions about the patient’s health and family history provide critical information for ruling out specific genetic causes of breast cancer and for determining risks.
Attitudes of physicians and patients and how these influence the delivery of genetic services
The attitudes of physicians can determine which patients are referred for breast cancer genetic counseling. The attitudes of patients can determine whether they will utilize genetic counseling services. Previous experiences in health care settings can lead patients to trust or distrust health care providers. These experiences will be influenced by factors such as language, discrimination, communication, and other cultural factors of the patient and providers.
Communication bridges and barriers with attention to the use of schematic illustrations and interpreters for difficult to understand concepts
Be sure to utilize interpreter services for individuals with limited English proficiency. Cancer genetic counseling sessions incorporate a variety of risk estimates such as percentages, odds, and ranges. Describe risks in multiple ways and with visual aids to help the client understand. Check client understanding and perceptions using different counseling strategies, including asking open ended questions, and asking the patient to describe her understanding of the content and/or her options (teach back).
Testing with references to sensitivity and specificity and positive predictive value of genetic testing for a specific disorder
Genetic testing for hereditary breast and ovarian cancer genes will identify about 90% of mutations.
Investigation of the family history focusing on clues for inherited disorders; discussion on how culture influences available family history information
An accurate family history is crucial to the genetic counseling cancer risk assessment. A patient’s culture and family dynamics may influence what information is reported to the provider.
Consent for testing and whether there are cultural preferences for oral verses written consent; and exploration of who makes decisions and who keeps medical information within families
The genetic counselor must consider cultural preferences for obtaining consent, including the appropriateness and ability of the ASL interpreter to translate the consent form. The provider should determine the patient’s preferences for involving others in the consent process.
Empowerment of the patient to take ownership of the decision whether or not to undergo genetic testing
The decision to undergo genetic testing is an individual choice that depends on many personal factors, such as cultural values, beliefs and experiences. The genetic counselor supports each client’s personal worldviews and how they impact genetic testing decisions.