Lay Beliefs Regarding Genetics
It is well known to genetic counselors that many people in the general population have a limited understanding of genetics. Yet, as genetics has become a favored topic in the media, many people commonly use genetics terminology in their daily lives, referring to diseases as “genetic” or “hereditary” among other uses (Lanie et al., 2004). However, many adults lack the science education to appreciate the sophisticated applications of genetics that may influence their health care (Lanie et al., 2004). For example, Lanie and colleagues (2004) asked patients to define the meaning of “genetic.” More than a third of their respondents had difficulty answering the question and over half of the participants gave multiple, conflicting answers. When participants in this study were asked to describe where genes were located, some participants were able to discuss DNA and chromosomes, but they often used these terms incorrectly or overly simplistically.
Lanie’s study suggests that we cannot assume that patients have the ability to grasp genetics concepts simply because they are familiar with some genetic terminology. It is essential to gauge your patient’s general understanding and beliefs regarding medical and genetics concepts. This will allow you as the provider to correct any misconceptions that they may have, as well as allow you to build on their knowledge by using shared concepts and language (Lanie et al., 2004). While most genetic counselors are well aware of the technical misunderstandings surrounding genetics in the general population, it is also important to consider the various cultural beliefs surrounding health care in general and genetics specifically held by individuals in the community.
The genetic counselor will need to transmit information that is not only simplified, but that fits within the patients’ prior understanding of how illness is caused, how illnesses are passed through families, and genetic risk (Shaw and Hurst, 2008). Individuals from some cultures may believe more strongly in environmental causes or spiritual causes for illness than medical or genetic explanations. For many individuals, medical and spiritual explanations are not incompatible (Shaw and Hurst, 2008). Shawn may want to explain that the research study is searching for the genetic risk factors that cause pancreatic cancer. However, some patients may feel that developing cancer is the will of God. Thus, Shawn will want to assess his patient’s prior beliefs regarding the cause of their illness and then incorporate these beliefs into his explanation. Shawn can acknowledge a patient’s view of why cancer happens (due to the will of God), and add that the study is looking for how this cancer occurs in the body (due to small genetic changes).
However, even in cultures or families that accept Western views of how illness is caused, there can be many ‘lay’ or ‘everyday’ explanations regarding inheritance and genetic risk (Shaw and Hurst, 2008). It is well known to cancer genetic counselors that families have many ways of explaining the inheritance of cancer through their families. These patterns of inheritance can include incorrectly believing that the cancer can only come from the mother’s side or that it ‘skips generations.’ The phenomenon of ‘pre-selection,’ where families decide who will be affected by cancer in the next generation based on who they look like or other arbitrary factors, is another example of an incorrect lay explanation regarding genetic risk.
These ‘lay’ or ‘everyday’ explanations may also be influenced by culture. In families that are largely patrilineal, such as those in South and South East Asia, individuals may perceive that the father’s genetic information takes precedence, instead of the Mendelian concept of equal contribution from each parent (Shaw and Hurst, 2008).
This concept is often true in regions where consanguineous marriage is common, which can complicate the genetic explanation of why consanguinity increases the risk for recessive conditions. In a qualitative study regarding genetics beliefs of British Pakistanis, participants explained that the influence of the father was largely genetic and the influence of the mother was derived from her health during the prenatal period (Shaw and Hurst, 2008). While participants in Shaw and Hurst’s (2008) study willingly discussed their everyday understandings of illness causality, inheritance and risk during their interviews, this information was rarely discussed during the genetics appointment itself. Patients rarely spoke up to point out that the geneticist’s explanation did not match their own. Thus, the genetic counselor should actively assess how culture influences ‘everyday’ explanations of genetics in order to best explain Mendelian genetics to families. When the patient’s own explanation of inheritance is not assessed, misconceptions cannot be corrected. Using cultural assessment tools such as Kleinman’s questions can help counselors explore client perspectives on health and illness. See the cultural assessment tools in the “Clinical Tools” section of this website.
