Family Ties: Communicating Genetic Risk with Family Members
By Angela Bradbury, M.D.
Patients are often very concerned about how they will share knowledge of genetic risk with their families. It is important to discuss family or hereditary risk with your family member because it carries huge implications for everyone in the family. Communicating effectively may actually facilitate coping and adjustment. Open and supportive communication usually leads to less distress in patients and family members and better adjustment to the cancer experience.
Studies have been done in families where there is a hereditary cancer syndrome during which questions were asked about the sharing of risk information and how relationships were impacted. About half said that there was no change in the relationships, 37 percent said it was a positive experience and only a small percentage identified that there was some negative impact to having discussed genetic risk with the family.
Potential benefits of communication include:
- Feeling closer to loved ones after sharing the risk
- Improved communication, especially with relatives that might have been previously distant
- More understanding and support from family members
Potential negative aspects of communication:
- Keeping emotional distance after learning about risk
- Feelings of guilt about passing on hereditary disposition
- Difficulty in talking about family risk
Every family is unique and has its own set of circumstances that will factor into the result of communication about cancer risk. Families often have “scripts” — sets of expectations, beliefs and norms that exist within a family. These scripts often assign meaning to patterns of interaction, connect generations and provide guidance for interaction. It’s also important to remember that members within families will also differ in their communication.
One study identified several communication patterns in families with a diagnosis of a genetic predisposition for cancer. These patterns included:
- Open and supportive communication
- Blocking of communication
- Directly – hanging up the phone, refusing to answer questions, general agreements not to talk about it
- Indirectly – unresponsiveness, appearing uncomfortable
- Self-censored communication
- Reactive – not talking about the issue because the recipient has negative reactions
- Proactive – not talking about the issue out of concern for others and a desire to protect them from worry, fear, etc.
- Use of third parties
- Using a doctor or another family member to communicate information
Six-step strategy for communicating cancer risk or diagnosis
Dr. Mary Daly at Fox Chase Cancer Center developed a family communication protocol, called the Six Steps Skills-Building Strategy, to help family members think about how to communicate cancer risk and even cancer diagnoses.
- Getting started (or preparatory phase):
- Identify relatives who may benefit from knowing results.
- Consider the communication format (in person, telephone, etc.).
- Choose the appropriate setting (safe, comfortable environment).
- Prepare an opening question to start the dialogue.
- How much do they know?
- Are family members aware of your participation in testing?
- Does the family recognize their potential risk?
- Learn their perspective by asking opinions on genetic testing, what they think their risk and the family risk is, etc.
- How much do they want to know?
- Do your family members want to know about their risk?
- Ask for a clear invitation to disclose information — some family members may feel strongly about not knowing their risk, at least at that particular time.
- Key issue: At what level do they want to know? Some members may not be receptive to too much information at once and will need time to absorb and gather more information over time.
- Sharing the information:
- The goal is to educate. Bring the family member’s understanding of the medical situation closer to the facts by explaining the meaning of test results, giving information in small pieces, using lay language rather than medical terms and checking for understanding, which may result in reinforcement and clarification.
- Consider using written information.
- Responding to feelings:
- Acknowledge feelings and reactions, which may vary among family members, and realize that these feelings and reactions may change over time.
- Be supportive regardless of the reaction.
- Recognize when further intervention (consultation with doctor, etc.) might be helpful.
- Planning and follow-through:
- Refer family members to local genetic service providers.
- Develop a plan for staying current in cancer genetics and prevention.
- Follow-up after the recipient has some time to consider and process the information.
Communicating with family members is often a process, not a one-time conversation. It has the potential to be very therapeutic for some families or individuals to talk about risk and to increase understanding of family health history and its implications.
About the author
Angela Bradbury, M.D., is director of the Margaret Dyson Family Risk Assessment Program at Fox Chase Cancer Center. She has clinical expertise in areas of general oncology, breast oncology, clinical cancer genetics and clinical medical ethics. Her research focuses on ethical dilemmas that arise in cancer prevention and genetic testing.
To make an appointment for genetic counseling at the Familial Cancer Clinic at VCU Massey Cancer Center, please phone (804) 828-5116.