They say knowledge is power.
But, what do you do with that knowledge?
Julia Houfek, Ph.D., professor of community-based health in the College of Nursing, is interested in how people understand and think about their health care conditions, what they have to do to stay well or get better.
So with the emergence of an easy and relatively inexpensive genetic test for a gene that has been linked with nicotine dependence, cigarette smoking and lung cancer — the nicotinic acetylcholine receptor gene known as CHRNA3 — Dr. Houfek couldn’t help but wonder: How are people going to understand and use this information?
“This has real clinical value in the long run,” she said, “because more and more people are going to be in a situation where some type of genetic information is being used to make decisions about their health care.”
So Dr. Houfek, a specialist in psychiatric mental health nursing, embarked on an effort to find the answer. The study was not a smoking cessation project — the primary purpose was to determine the impact of providing smokers with an understandable educational session about genetic contributions to smoking and personal genetic information related to smoking.
With a genetic test for a specific area of the CHRNA3 gene now being offered commercially through websites such as “23 and Me” or “Decode Me,” Dr. Houfek arranged with the Munroe-Meyer Institute for Genetics and Rehabilitation lab to do this test on her research participants — an experimental group of 12 with another control group of 12.
Participants were tested for the specific CHRNA3 area, which can be found in three forms:
- CC allele, not related to an increased risk for nicotine dependence;
- CT allele, which puts people at a slightly higher risk; and
- TT allele, which has been linked to early adoption of smoking and higher incidences of nicotine dependence.
They then met with Gwendolyn Reiser, MMI genetic counselor, for genetic counseling.
“Interestingly, almost everyone in both the control group and the experimental group believed testing would show they had the TT allele that made them genetically predisposed to smoking,” Dr. Houfek said.
“We wanted to see how people would respond, first, to having the test offered. But our big research questions were ‘How did they understand the information’ … and then ‘How did they use the information in terms of cigarette smoking, especially quitting?’”
Dr. Houfek also hoped that in the long run, the results of the study would be used to develop patient-education materials and help health care professionals learn how to discuss genetic test results with their patients.
The study results showed that people are not afraid to learn more about their genes. Of the 12 participants in the experimental group, 10 came back for their results. And after the study was concluded, the 12 members of the control group were offered their results as well; nine of them came back for the information.
The people in the study — Dr. Houfek called them the “early adopter group” — were interested in the genetics of smoking.
“They were interested in getting their results, and they were invested enough in the study that most completed the follow-up data collection,” she said.
Dr. Houfek was pleased with the results.
“People understood the information, and we got excellent feedback about what they understood and what they didn’t understand.
“We looked for any psychological distress related to receiving personal genetic information, especially results that put a person at higher risk.”
But no matter what form of allele presented, subjects put a positive spin on knowing the results.
“They were glad they had the information, and they expressed their intent to use the information to stop smoking,” Dr. Houfek said.
The people who were not at higher risk for nicotine dependence genetically reported that they would use the information to go forward with a smoking cessation program. And even the people who got the higher risk allele said they would make use of the knowledge by looking for a more structured or professionally run smoking cessation program.
Another finding: Nearly everyone who returned the post-study questionnaire reported that they had talked with their health care provider about smoking cessation; some had smoking cessation medications.
“The people in the project made an effort to use the information to further their smoking cessation, which is a process,” Dr. Houfek said.
Now, Dr. Houfek is considering her next steps.
“Some of the published literature says that giving smokers genetic risk information doesn’t necessarily help them quit, so this shows the complexity of using genetic risk information to change health behavior,” she said.
“For smoking cessation, we need to explore if incorporating personal genetic risk information into active counseling by health care providers is helpful to increase quitting behaviors and also long-term cessation.”
Dr. Houfek noted that many genes are involved in nicotine addiction and smoking related diseases.
“As more genetic tests become available, we will explore how people understand and use information about the multiple genes involved in determining health risks,” she said. “It is likely that the risk will be presented in some type of score — but it will be important that people understand the genetic information behind the score.”
She’s excited to help people learn to understand and use these increasingly available avenues of information.
“That is why this work is so important,” she said. “We are learning how to present information and answer questions, and in so doing we will help people learn how to use this information to improve their own health.”