Evaluating Genetic Literacy in Minority Populations, Opportunities for Education

By: David Shifrin, PhD Science Writer, Filament Life Science Communications

One of the challenges in medical care and genetic counseling is the gap between statistical analysis of issues on a population-wide scale, and the interaction with and dissemination of information to individual patients. The problem is that while trends within large groups can be observed (e.g., “62% of respondents said…”), this information will always inherently be painting with broad strokes. If a significant majority of 62% feels one way it may be enough to make some key decisions, but it still means that 38% of the population are left out.

There is, however, another layer to all of this. Of course, we don’t just have two categories of “everyone” and “individuals.” In reality, we can subdivide populations into an almost infinite number of bins, whether based on ethnicity, socio-economic status, geographic location, etc. Each of these subpopulations will have their own (still generalized) set of requirements for getting the most out of their medical care. This is especially true when the division is made along ethnic and religious lines. Genetic counselors must be ready to interact with individuals within those subpopulations based on the myriad distinguishing characteristics, beliefs, and knowledge within that group. Additionally, working with populations to learn how they understand and perceive medical information is extremely important to ensure that results from any particular study can be effectively communicated back to the participants.

A lot of research goes into these issues, and a team from the Hutch Cancer Center and the University of Washington recently published a brief report about their work with rural Mexican-Americans.

The researchers worked with a program at the Fred Hutchinson Cancer Center designed to study and eliminate health disparities in rural Latino populations, particularly as it relates to breast cancer. The program is called PUEDO, for “Partnership for Understanding and Eliminating Disparate Outcomes.” At issue was how people in these communities understood information related to their genetic background, family history and disease risk, as well as how they would act on the information provided by investigators. Thus, a secondary study was designed to look at these questions. According to the paper (published in the Journal of Community Genetics), “Literature on Latinos’ awareness and understanding of family health history and its relationship to disease risk is limited, with almost no research on recent immigrants who live outside of urban centers.”

In order to help PUEDO refine its delivery of genetic information to this population, the researchers set up a pilot study and interviewed ten individuals. Participants were asked questions about how they talk about deceased relatives with others, and whether the health of those relatives is part of any of the conversations. The team also looked into understanding and perception of basic genetics as it relates to family history and personal disease risk.

Interviewees were very much aware of family history, and they agreed that knowing family history is a valuable component of maintaining one’s own health. However, these ideas were not well connected with the concept of genetics. Participants tended to view lifestyle as the key to disease risk, while genetics took a back seat.

A potential benefit of this finding is that, because lifestyle was considered the major factor in determining disease risk, interviewees felt strongly that personal responsibility and living well are critical for health. Unfortunately, though, the participants also said that members of their community did not do a very good job of making good lifestyle choices. When asked if they would find genetic information about disease risk valuable, the participants said yes, especially because that information could help guide lifestyle choices. These results raise the question, were interviewees themselves more likely to take responsibility for their own health because they simply didn’t know they could use “bad genes” as an excuse? Or, did this represent a situation where the interviewees’ knowledge wasn’t translated into action? Educating people on the relevance of genetics for their health is important, but there is also a fine line to avoiding genetic determinism where individuals won’t take action because they think the outcome is already set. Regardless, though, these responses indicate a gap between perception and practice, and represent an opening for intervention to put genetics in context and assist individuals in making healthy choices.

As noted above, participants were also quite eager to learn more about their genetics, which is encouraging for genetic counselors working with similar rural minority populations. The authors state that results from the interviews “suggest that desire for health information may be a potent gateway to providing education about family health history and genetics that will be necessary to effectively communicate study findings back to participants, their families, and the broader Latino community […]”

Even on such a small scale, this study provided the PUEDO team with intriguing information about their target population. More broadly, the type of information provided by these ten participants gives genetics professionals valuable ideas on how to approach the dissemination of medical information and research results. Or, at a minimum, the types of questions to ask in order to figure out what kind of information a population needs and desires, and how to present it effectively.