Learning that you have a genetic risk factor for a disease can be a difficult experience. It can bring on different emotions and questions as you think about what the results mean for you. You might also be thinking about your family members and what your results mean for them. Many people in this situation may want to discuss their results with their family. The reason could be as simple as wanting to receive emotional support. But because genetic risk factors can be passed down from generation to generation, the reason to share genetic information could also be to alert family members about a potential health risk they might have.
If you are considering talking to family members about your results, a few important questions to think about are:
- Would your family members want to know about their own potential health risks?
- How might different family members react?
- How comfortable are you with disclosing the information?
- Do you and your family members have the support you and they need?
It is also important to know that there are potential benefits and harms in discussing your genetic risks with family members.
Potential benefits of communicating genetic information include:
- Enabling family members to learn whether they also have the risk factor and take steps to manage their risk
- Feeling more connected and fostering relationships after sharing genetic risk information
- Strengthening communication among family members
- Gaining support and understanding from family members
Potential harms of communicating genetic information include:
- Telling a family member about a genetic risk that they do not wish to know
- Introducing anxiety and emotional distress to family members
- Creating emotional distance and tension among family members
- Causing family members to feel guilty or judged about passing on a genetic risk
- Unintended further disclosure of your genetic information
Every family is unique and there is no single formula for sharing genetic risk information that will work for everyone. Here are some ideas that may help you find the right approach for you:
Enlist the help and advice of a professional, such as a genetic counselor.
If you have questions about how your genetic results might affect you and your family, or would like advice on how to talk to your family about your results, a genetic counselor may be able to help. Learn more about genetic counseling.
Identify relatives who could benefit from the information.
Relatives who could benefit the most tend to be first-degree relatives (parents, brothers, sisters, and children) and second-degree relatives (grandparents, aunts, uncles, nieces, and nephews). Often you won't know on which side of the family (mother's side or father's side) the risk is being passed down. But if that information is available, you might choose to discuss your results only with those family members who are most likely affected.
When thinking about which relatives to share with, age should also be a consideration. It is important to be sensitive to the potential impact of sharing genetic risk information with children. For diseases that typically have a later onset in life, the genetic information wouldn't become relevant to them until they are adults.
Choose a communication medium that you are comfortable with.
There is no right or wrong communication method. Consider how private and secure you want the communication to be, and what method is most effective for you and others. Options include letters, phone calls, emails, and face-to-face conversations.
Assess which family members already know, who may need to know, and how much additional information they might want to know.
Keep in mind that everyone absorbs and interprets information differently. Within every family, there are individuals who want to know as much information as possible and there are individuals who may prefer not to know. You could adopt different communication styles, and even share different amounts of information, based on an individual family member’s preferences. You can also start by sharing information with a family member with whom you have a close relationship and enlist his or her support in talking with others.
Remember that you do not have to be an expert in genetics to discuss your results with family
Your family members may have questions after you share your results. You may not know the answers to all of their questions and that is normal. However, it may be helpful to provide your family with resources so that they can seek more information through a health professional or seek their own testing.
In sum, discussing genetic information with family members is a personal decision and there is not a one-size-fits-all formula for approaching this question. If, or when, you decide to share your genetic results with your family members, be aware that they will have their own feelings and reactions. Those feelings and reactions may also change over time. Therefore, talking about genetic risk factors may not be a one-time conversation, but an ongoing discussion that may gradually evolve. Remember — you do not need to convince your family to pursue testing. By providing them with information, you enable them to make informed and educated decisions about their own health.
Bradbury A. Family Ties: Communicating Genetic Risk with Family Members. Accessed 17 April 2016.
Greenberg MA, Smith RA. Support Seeking or Familial Obligation: An Investigation of Motives for Disclosing Genetic Test Results. Health Commun. 2016;31(6):668-678.
Montgomery SV, Barsevick AM, Egleston BL, et al. Preparing Individuals to Communicate Genetic Test Results to Their Relatives: Report of a Randomized Control Trial. Familial cancer. 2013;12(3):537-546.