Psychologist Laura Koehly says people tend to discuss genetic testing mainly with their first degree relatives and their spouses after learning a particular member has been found to carry a cancer-causing mutation. However, the discussion is less likely to occur among relatives who aren't within the immediate family even though they too may be at risk for the disease, according to her research.
Koehly, working with colleagues from the University of Texas M.D. Anderson Cancer Center and the University of Texas Health Science Center at Houston School of Public Health, examined the communication patterns among members of families who have a known genetic predisposition to develop hereditary colon cancer. She studied whom the members shared their genetic test information with and why they chose to share it with certain family members and not others.
"This is really about social relationships within a family and the types of relationships that act as barriers to the process of sharing information as well as the types of relationships that can facilitate this process," she explains.
Koehly found the way health information passes through a family could significantly impact the lives of some family members, for the worse.
"Among our respondents, there does not appear to be a tendency for aunts and uncles to discuss risk information with their nieces and nephews, for example, potentially leaving these individuals without information or support regarding cancer risk management – particularly if their parent died from hereditary colon cancer," she notes.
Additionally, parents who are not biologically at risk for the genetic mutation often view themselves out of the loop during discussions about the threat of disease. With this mindset, the parent is not as apt to discuss the disease and its prevention with the young adult child.
"The problem is that mothers, for example, who are not at a biological risk don't feel like the disease is their problem, but they need to understand that it is, in the sense that it is their children's problem, and that they need to become involved in the process," Koehly says.
Kinship alone is not sufficient to explain families' patterns of communication about genetic counseling and testing. Patterns of communication associated with discussions about genetic counseling and testing also tend to be characterized by support-seeking and advice-seeking relationships. Hereditary cancers occur at younger ages and have the potential to disrupt the lives of many people in a family beyond just the person diagnosed with cancer. Koehly hopes that her research will help tailor interventions in a way that will increase counseling, testing and surveillance efforts within a family.
"We have to figure out who the important people are in an individual's support system and then find a way to integrate them in the counseling process so that they can take a proactive role in that individual's health care," Koehly notes.
To that end, Koehly says mothers tend to be a central figure in the communications process, acting as a hub for information gathering and disseminating throughout the family.
"In terms of the social roles we looked at – the ones that were important in the process – mothers tended to be the ones who were supportive, close and whose advice was sought, so they have this influence in terms of the family culture and potential influence in the persuasion process."
The family culture can play a significant role in determining who participates in genetic counseling and testing and potentially in determining who adheres to recommended screening and surveillance guidelines, she notes. It may even play a more important role in determining when discussions about these topics take place than the actual mutation status of the individual, she adds.
Additional Contact: Laura M. Koehly, (979) 845-2097 or via email: lmk@psyc.tamu.edu