“An educated consumer is our best customer”—so said businessman and philanthropist Sy Syms. While Syms’ business was retail clothing, his slogan is broadly applicable. In fact, according to a recent survey by medical researchers, the clothiers’ wisdom can even guide physicians who hope to introduce their patients to the benefits of pharmacogenetics—the study of how a patient’s genes can affect drug reaction and dosage. Patients, the researchers found, are more willing to accept pharmacogenetic testing if they are well informed about it.
Although pharmacogenetics (PGx) promises to optimize patient response to therapy, patients may be caught off guard if asked about “DNA testing to guide therapy.” Patients may even be inclined to skepticism. If so, they may be less willing to consent to tests or comply with treatment recommendations. Moreover, if they are making decisions not for themselves, but for their children, they could be even more reluctant to accept an unfamiliar course of action.
To explore these possibilities, researchers at Western University conducted a survey among parents and other adults—236 medical students representing those having greater educational exposure to PGx, 1,226 lay parents, and 105 lay people without children. A second survey was completed by 229 parents.
The study concluded that the acceptability of PGx testing, either for oneself or one’s child, seemed to depend on baseline PGx knowledge, but not on parenthood. The main concern for all respondents was the need for informed consent.
The results of the study were presented April 28 in Pediatrics, in an article entitled “Public Perceptions of Pharmacogenetics.” According to the study’s leader, Michael J. Rieder, M.D., Ph.D., professor of pediatrics and of physiology and pharmacology at Western University, the study confirmed what his team suspected: “Whether or not you’re a parent, your degree of acceptability of genetic testing was determined by your knowledge of it. That is to say—if you understand what the test is for, and the concept of gene-based drug dosing, you’re far more open to it, than if you don’t understand it.”
The study’s other findings included the following:
More acceptance for PGx when the disease was severe.
Strong desire/demand for separate consent for PGx testing.
More education about PGx needed in medical schools.
Acceptability of genetic testing didn’t differ whether for the parent or the child.
Dr. Rieder added PGx should take a lesson from pediatric oncology. According to Dr. Rieder, health care workers in that division do a good job in the way they frame the discussions around care, treatment, and consent: “When they have to make a diagnosis, they spend a lot of time explaining what tests they’re going to do, the risks, and what therapies are available. And they’re successful. Their patients comply with treatment, they get involved in studies, and they’re informed. And they want to know what’s going on.”