Know thy genes, know thyself?
As the science of genetics advances, the task of informing patients has grown both more complicated and more essential. Good communication must reflect the science of the genetic situation and the attitudes and beliefs of patients and their families, says Roxanne Parrott, professor of communication arts and sciences, and health policy, at Penn State.
In starting a new study, Parrott used a survey to elicit attitudes and beliefs from family members and patients with three genetic conditions: Down syndrome, Marfan syndrome and neurofibromatosis. The results, she says, confirm the idea that communication must reflect the audience: “There is not a one-size-fits-all notion of how to communicate about genetic conditions, but there are enough patterns that we don’t have to adapt to each individual or family member.”
Although some genetic mutations always cause disease, more raise the risk without spelling doom — and that’s often a hard concept to get across, she adds. “There is so much media attention to genetic determinism,” so those who would communicate with patients must realize that many people assume that having a gene means getting a disease, when in fact more disease genes raise the odds of getting that disease, but are also affected by environmental and behavioral factors.
A fearsome genetic test
Huntington’s disease, a hereditary neurological disorder, was one of the first diseases linked to a single gene. Huntington’s progressively attacks motor, mental and emotional abilities.
Talking genes blues
Communications researchers “have focused on the threat, and on trying to motivate people to take action,” says Parrott, “and this is correct, as long as we package the message in ways that can help them change their behavior and reduce the threat.”
HD is caused by a dominant mutation in the Huntington gene, so any child of a parent with HD has a 50 percent risk of inheriting the disease. Huntington’s is the archetype of genetic determinism: if you have the mutation, HD is inevitable.
Once the genetic test became available, a child of a parent with HD could be tested for the mutated gene. This is a difficult decision: Would you rather live in uncertainty, or get tested and possibly learn you will develop a fatal, incurable disease?
In a new study of how people communicate about genetic predispositions, Parrott looked at four personality types:
Uncertain relativists are not sure what role personal behaviors, religious faith and social networks play in genetics and health.
Personal control relativists tend to be more certain about how personal behavior affects genetics.
Genetic determinists believe that only genes determine their health.
Integrated relativists believe that behavior, faith and support can affect genetic expression.
Messages about the genetic contribution to heart disease, cancer and diabetes should reflect the needs of patients with disparate beliefs, says Parrott. She and co-author Kathryn Peters, a genetic counselor, found that each group was about equally common among family members and diagnosed patients. “When we think about communication, these four frameworks represent quite different things to listen for, ideas to probe for, and a different approach to communication.”
In an online survey of 541 patients and family members, Parrott and Peters found that some beliefs were misconceptions while others were accurate, and that despite the media emphasis on single mutations as causing disease, not everybody thought “that genes alone determine health.”
The 200-odd test items were designed to probe both information and attitude:
“I can really screw up my genes if I take drugs”
“I can really screw up my genes if I drink a lot of alcohol”
“The only reason genes get to some people is because they do have such high-stress lives”
Genes are relative
One interesting result came from the “integrated relativists,” who talked about how behavior, religious faith and social support “could come together to predict health,” Parrott says. That is a rather sophisticated attitude concerning genomic information, she adds.
Unfortunately, “The integrated folks were the most uncertain about their future, and how things would work out with their diagnoses,” says Parrott. “That’s probably a good indication of having almost too much information, conflicting information. Their integrated perspective puts them in a situation where they … believe that a lot of things contribute to their health, and they don’t know what to do about it.”
Learning what’s inside your genes can have a psychological impact, Parrott adds. “How do you know who to tell? How could this affect your personal relationships? When do you start having these conversations? Does your identity become a package of genes?”
— David J. Tenenbaum
Terry Devitt, editor; S.V. Medaris, designer/illustrator; Molly Simis, project assistant; David J. Tenenbaum, feature writer; Amy Toburen, content development executive
- NIH on Down syndrome ↩
- NIH on Marfan syndrom ↩
- NIH on neurofibromatosis ↩
- NIH on Huntington’s disease ↩
- NIH on genetic counseling ↩
- How are mutations and disorders name? ↩
- Uncertainty Management and Communication Preferences Related to Genetic Relativism Among Families Affected by Down Syndrome, Marfan Syndrome, and Neurofibromatosis, Roxanne Parrott et al, Health Communication, 1–9, 2011 ↩