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  Talking to Your Family About Risk

By Miriam Komaromy, MD

Reviewed by Beth Crawford, MS, CGC and Larry Prensky, CGC, CAGC
Last updated December 22, 2010



A doctor or genetic counselor assesses your risk for an inherited disease by taking a close look at your family medical history. Although the motivation to explore your genetic risk may have been personal, your family often quickly becomes involved in the process. Despite their involvement, it may be a mistake to assume that your relatives are ready know what you've learned in the process of exploring your genetic risk. However, by understanding your family's fears and considering how best to approach them, you can help make the process go more smoothly.

 
 
 

By Default, Your Family Is Involved

Gathering Family Medical Information. Gathering family medical information can involve talking with other relatives about difficult subjects, for example the death of their parents, or requesting that they release confidential medical information about themselves or their relatives to your health care provider.

A Family Member May Need to Get Testing for You to Determine Your Own Risk. Genetic testing contains paradoxes of it's own. Although you initially may have been the person pursuing risk assessment or genetic testing, you may not be the ideal person to test in your family. A detailed analysis of your family history may suggest that another family member, usually with a higher genetic risk, will give more informative and ultimately more useful information.

Genetic Risk Is Family Risk. The process of assessing your risk for disease may highlight the risks of other family members who may or may not be ready to hear this information.

Talking With the Genetic Counselor

Gina's sister died of breast cancer 5 years ago at the age of 38. When Gina met with a genetic counselor to try to understand her own risk, Gina told the genetic counselor that two cousins had had cancer; one had had breast cancer, and Gina thought maybe the other cousin might have had ovarian cancer. Gina wasn't sure, since she was not on good terms with them. Gina was dismayed when the counselor told her that if Gina wanted to pursue sorting out her own genetic risk, it would be best to contact one of the cousins and ask that she be tested first, since they are the only living family members who have cancer. Gina's own mother had died several years back, and the cousins had not bothered to come to the funeral. Gina had been angry at them at the time, and felt uncomfortable contacting them now to ask for their cooperation.

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Who Do you Talk To

It is best to talk to the affected family member directly.
When gathering medical information it is almost always best to talk to the affected family member because they will know the most about their medical history. If that person is deceased, try to find the person most likely to know about their condition and treatment. Likewise, when you are communicating information about heightened risk, try to talk to the person who is most directly affected by this information. Although approaching people directly is ideal, studies have found that individuals often don't feel comfortable communicating with certain family members, perhaps because of age differences, past disputes, or simply not knowing the person very well. When this is the case, the intercession of another family member can be helpful, for example someone who is closer to the person who you wish to communicate with.

Getting in Touch With Relatives

Clark was another of Gina's cousins, and was also cousin to the two women who had developed cancer. He had always gotten along with all of them, and had even attempted to patch things up after Gina's mother had died. Gina decided she would ask Clark to contact her cousins and tell them about the cancer risk that might be present in their family. She thought if he explained it in terms of risk for the whole family that the women might be more willing to consider testing.

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Overcoming Fears and Misconceptions

In an ideal world, all families would be composed of friendly, open, and helpful relatives excited to assist you on your journey. In reality, family dynamics are often difficult, family histories can be shrouded in secrecy, and individuals may or may not be ready to deal with and hear about their risks.

Often the reasons your relatives are hesitant to help stem from fear or misconceptions.

  • Elderly relatives may have been taught not to talk about certain conditions.
  • Other relatives may find talking about the past emotionally difficult.
  • There is a pervasive belief that genetic means inevitable that can lead to the belief that genetic risk assessment is futile.

The best way to overcome fear and misconceptions is education.
The best way to overcome fear and misconceptions is education. There are a number of different ways that you can help educate your family and Genetic Health can assist you with this process.

Written information. The simplest form of education is providing written information about the benefits of risk assessment. This can be as simple as a letter written by you, or information downloaded from the Genetic Health website. Your genetic counselor may also be able to help you write an appropriate letter to your family members, or provide you with informational pamphlets.

Making Contact

When Clark contacted Susan and Rachel, the cousins with cancer, they were very interested in what he had to say. Not only did they want to learn about their own risk for developing additional cancers, they were relieved to have a way to make peace with Gina. Clark told them he would have Gina contact them. In the meantime, Gina had asked her genetic counselor to send information on inherited breast and ovarian cancer to Rachel and Susan.

Helping Your Family Assess Their Own Risk. Additionally, some relatives may wish to use the Genetic Health website to assess their own risk. Some relatives could benefit from a face-to-face meeting with a genetics professional; Genetic Health can help find a genetic professional in their area.

By informing relatives about the importance of risk assessment and allaying their fears, you can often improve family communication and develop support for your journey. The realization that there is a genetic risk in a family does not have to be scary; it can be a source of empowerment. When family members know that they are risk for a disease, they can take action to improve their own health. By uniting behind a common goal of searching out the past and preparing for the future, you can often strengthen family ties and support.

Providing Information

A few weeks later Gina contacted Rachel and Susan and they had several long conversations. They decided that Rachel, who had had breast cancer, was the most prepared to learn more about her own risk. Rachel saw a genetic counselor in her own town, and had a BRCA test done.

When Rachel sent Gina a copy of her test result, Gina took it to her genetic counselor and was tested for the same mutation. Gina was enormously relieved that her test was negative, meaning that her BRCA gene did not contain any harmful errors. She is also planning a trip to visit Rachel and Susan.


Breaking the Ice

If you have difficulty getting complete information from relatives up front, it is sometimes helpful to ask for a few specific pieces of information.
Sometimes it is hard to approach relatives you don't know well or haven't spoken with in years. Initially, you will likely be asking for help compiling an accurate family history. If you have difficulty getting complete information up front it is sometimes helpful to ask for a few specific pieces of information such as whether they have copies of death certificates, or if they can send you a pathology report on a tumor that was removed. Once the door is opened, it often easier to go back and get more information later.

In addition, be sensitive to the relative's interest (or lack thereof) in learning about his or her own risk. Leave choices about participation. Some ways of phrasing this might include:

  • "Would you like me to share what I learn about the family history?"
  • "I will be learning about my own risk of developing cancer and what screening guidelines to follow. Would you like me to call to discuss what I learn, or would it be helpful to receive a copy of my information?"
  • "I may also learn information about the genetic risk in our family and I may have genetic testing. Would you like me to call to discuss what I learn, or would it be helpful to receive a copy of my information?"

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References

Green, J. et al. (1997). Family Communication and Genetic Counseling: The Case of Hereditary Breast and Ovarian Cancer. Journal of Genetic Counseling. 6(1):45-60.

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