With so much focus on risk factors for disease, we are living in an era of surveillance medicine, in which the emphasis on risk blurs the lines between health and illness, argue researchers at Yale and Syracuse universities in a study published in the December issue of the Journal of Health and Social Behavior.
Co-authors Rene Almeling, assistant professor of sociology at Yale, and Shana Kushner Gadarian, assistant professor of political science at Syracuse University, conducted a nationwide survey of American adults to determine if healthy people react to hypothetical genetic risk information by wanting to take action.
Participants were asked to imagine that they faced a genetic risk for a disease. They were randomly assigned a level of risk (between 20% and 80%) and a disease: heart disease, colon cancer, or Alzheimer’s disease. These are all common conditions that affect roughly equal numbers of women and men and are caused by a mix of genetic and environmental factors, but differ in age of onset and treatability.
The survey allowed the researchers to recreate the uncertainty and concern posed by potential illness, and then systematically assess who wanted to take which kinds of actions in response to different levels and kinds of risks.
The main finding of the study was that as the level of risk increases from 20% to 80%, people are more likely to want to take action of all kinds, including seeking information about the disease, managing risk by taking medications or undergoing surgery, consulting family members, organizing finances, and participating in community and political events.
The results of the survey showed the importance of risk information even to healthy people, suggesting that the experience of living between health and disease is not just limited to those who are already patients. “Social scientists have argued that we are now treating risk as if it were a disease, and these results provide strong evidence for that claim,” says Almeling.
Participants were asked if they have a family member or close friend with the disease to which they had been assigned to assess whether experience with the disease increased their interest in taking action. The researchers were startled to find that seeing a disease up close did not make much difference; across the board, people responded to the hypothetical risk information by wanting to take action.
The survey questions were hypothetical, but the issues that the study raises are real, note the researchers, adding that people use risk information to make significant medical decisions, such as whether to increase the frequency of cancer screenings or undergo prophylactic surgery.
“It is extremely important for social scientists and clinicians to understand how people respond to these risk numbers and how they are being used to make important life decisions,” says Almeling. She added, “Studies like this can aid health care providers in offering genetic information with sufficient context to insure that people make the best decisions for themselves.”
Given that people throughout the population — from the healthy to the sick and those with and without a family history of disease — had largely identical reactions suggests that normality has indeed become precarious and that we are all patients-in-waiting, say the researchers.