A long history of noncompliance in medicine supports the vital role played by health beliefs on health behavior. Current levels of adherence to drug regimens, for example, are low. An analysis of compliance rates reported in studies of heart disease as one illustration showed that only 31-66% of patients stayed in care, between 31-58% took prescribed medications as directed, 40-50% followed prescriptions for activity, and between 13-76% followed prescribed diets. An analysis by Mar and Rodriguez-Artalejo asked “which is more important for the efficacy of hypertension treatment: hypertension stage, type of drug or therapeutic compliance?” The study concluded that strategies which lead to improved compliance would have the greatest returns in effectiveness and efficiency. In recent research associated with understanding lay attitudes about race-based prescribing, participants revealed strong belief that drugs which are preferentially assigned to minority groups are less safe and less effective. If lay people are suspicious of the safety or efficacy of a drug because of perceptions that treatment recommendations are based on population indicators rather than the individual, they may be more likely to terminate treatment early on the basis of side effects or short term lack of perceived effect, all other things being equal (e.g., insurance). Such lack of compliance translates directly into lack of medical efficacy.
Genetic diseases or disorders could lead family members to blame their immediate or extended kin for their current genetic health status. In theory, no single family member “owns” genetic information, because every member could potentially share certain genetic traits, links or diseases. As a result, disclosure of this information can be difficult to negotiate. Yet, the timeliness of disclosed health information may affect how individuals manage the information because a limited “window of time” may exist for the maximum benefits of disclosure to be realized. Immediate or delayed disclosure can have a variety of consequences for the “teller” and the “receiver.” For example, couples planning their families would likely prefer to be informed of any genetic risks prior to the onset of pregnancy. Discovery of a genetic disorder after conception could lead to familial tensions as a result of genetic inheritance not being disclosed at a time that assists in informed decision-making regarding the pregnancy. Thus, when one member of a family is diagnosed with a gene that has been identified as a contributor to disease, the entire family is affected. In the past, single gene disorders dominated the landscape associated with genes and health. The HGP, however, makes possible theidentification of genetic contributors to most diseases. Family communication patterns associated with single gene disorders may lay a framework for response to genetic disorders more generally. Moreover, the higher rate of sickle cell disease among black Americans as compared to white Americans, coupled with the fact that black Americans are sometimes less likely to receive proper treatment and/or medical attention for diseases than white Americans, leaves black Americans families in a “double-bind.”
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Levels of trust in physicians are already precariously low, as indicated by a recent study by Corbie-Smith, Thomas and St. George. Among other markers, their study showed that 45.5% of black American and 34.8% of white American patients thought that their physicians exposed them to unnecessary risks. Race-based genetic medicine (RBGM) may further erode trust in physicians due to the high level of belief that racially designated medicines for minority groups are unsafe and ineffective. Not only will this erosion of trust impede adherence rates, but, additionally, if people with illness do not trust their physicians, they may also attend alternative practitioners, self-medicate or use prescribed medicines tentatively and suspiciously, impeding results. Physicians are not going to be able to “hide” the fact that particular treatments are racially designated, and efforts to gain more specificity in medical history-taking about ancestry will heighten these sensitivities, especially in the presence of direct to consumer advertising associated with RBGM. These issues are magnified again when we think about efforts to incorporate “race” into public health messages about genetics.
GENETICALLY BASED RACISM
The net social cost of RBGM, were the science found to be sound, may still be too costly if it increases racism in the United States. While official messages with mitigating statements may be generated that forestall negative impacts from those specific messages, it is unlikely that all messages generated about RBGM by the press and other sources will carry such mitiga-tors. Consequently, the net effect may be seriously harmful. These negative impacts may in turn adversely relate to clinical effects in areas of medicine unrelated to RBGM. As the IOM report, Unequal Treatment, documents, one of the underlying causes of health disparities is racial discrimination, or racism, with reciprocal causal relations occurring such that those who experience such discrimination sometimes avoid care even when it is available. Consequently, in order to produce a net health gain, the level of clinical benefit from race-based medicine will need to be greater than the clinical deficits created as well as greater than the general social harms created. The burden of proof for net benefit should be on those who propose to implement RBGM. If some racial or ethnic groups have a greater predisposition to have a condition/disease traditionally linked to genetics, it may contribute to patterned concealment. On the other hand, in this era of genomic healthcare where single gene disorders are being rapidly displaced by awareness that multiple genes contribute to many common diseases, including cancer and heart disease, family history related to these conditions may lead the family as a unit to conceal this information from others (i.e., friends, employers, etc.) for fear of discrimination or stigmatization. Or, families may begin to traverse a course associated with recognition that everyone has genes linked to illness and disease and that knowledge of one’s family history may be the best defense against harms associated with these biological characteristics that predispose one to ill health.
The public debate about the relationship between race and genetic information still exists, providing a foundation for black Americans to perceive a climate for racial discrimination based on genes. Also, fueling feelings of mistrust is the current reality that health disparities exist between blacks and whites, with recent studies showing that blacks are sometimes less likely to receive proper treatment and/or medical attention for disease or illness and have greater health risks (e.g., cancer death rates, breast cancer and cardiovascular disease) than whites. Current health disparities, personal experiences and a history that includes Tuskegee are likely to contribute to a greater perceived risk of genetic discrimination based on race.
In sum, lay perceptions of the societal, cultural and personal norms related to race and genetic risk might form reliable patterns that physicians, health promoters and policymakers should understand to guide communication and message design. To identify lay perceptions associated with genetic discrimination, evolve a tool to assess these perceptions and consider possible differences associated with racialized social group perceptions of genetic discrimination, the following questions were posed:
RQ1: What lay models represent perceptions of genetic discrimination?
RQ2: Do blacks as compared to whites differ in views about genetic discrimination?