Development and Validation of Tools to Assess Genetic Discrimination DISCUSSION

As the technological spin-offs from the HGP become more prevalent, there are a variety of concerns about the way in which this technology will be incorporated into social life, particularly concerns about genetic discrimination. While the work associated with the HGP affirms that social rather than genetic explanations account for disparities in disease linked to race and ethnicity, public messages may lose this in the translation, leaving genetic explanations linked to race uppermost in the public’s understanding. The ramifications are far-reaching, as the results of this research revealed that the lay public conceptualizes genetic discrimination as having potential influence in five domains, including individual reproductive rights, social reproductive rights, employer rights, insurance company rights and criminal control rights. Moreover, these perceptions are coupled with racial discrimination in the form of genetically based racism.

There has been little discussion about the reproductive realm associated with genetic discrimination. This is the situation despite the reality that genetic counseling research and practice exhibits a long tradition of awareness associated with women making decisions about having children based in whether they regard themselves to be at “high” versus “low” risk of having a child with genetic anomaly. As genomic healthcare unfolds, an era of counseling for single gene disorders will be displaced by counseling about the multiple genetic contributors associated with disease susceptibility. Moreover, counseling will move from the realm of genetic counselors into primary care practice settings, with physicians and nurses sought out as advisors in this regard. Clearly, the lay public has concerns that knowledge about disease susceptibility associated with genes will spillover into individual and social reproductive health decision-making. Black Americans have historic precedence to set their expectations in this regard, with the criminalization of drug use during pregnancy associated with the identification and detention of more minority women than white women. It follows that a movement toward racializing the prescription of medicine in RBGM may contribute to further erosion of physician-patient relationships and even avoidance of care when care is available.
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Perhaps the most attention associated with genetic discrimination in headlines and policy has addressed protecting the rights of citizens in employment situations and with regard to access to health insurance. Only a few years ago, just 11 states addressed genetic findings and the workplace, with North Carolina and Florida protecting black Americans from bias in hiring and insurance practices due to sickle cell test results, Iowa forbidding employers from requiring a genetic test as a condition of employment, and 13 states addressing protection of health insurance. While some progress has been made in this arena, one of the best strategies to escalate protection under the law with regard to HGR is public awareness and understanding.

Finally, expressions associated with a criminal control dimension of genetic discrimination emerged in lay perceptions. This may occur in part as a function of the increasing media entertainment options associated with crime scene investigations and the use of DNA in these scenarios. The concerns about use of this information may also be associated with beliefs that such information may be misused. Blacks and whites differed in their attitudes about discrimination and the social reproduction and criminal control dimensions as well as racial discrimination associated with genetically based racism, findings likely related to the historical and social context of race relations in the United States.
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Limitations

As observed in the discussion of the methods and results of this research, a social desirability bias may have contributed to the findings. Participants may have refused to participate in this study due to its focus on assessing levels of racism and perceptions about whether individual characteristics relate to race and genes. Alternatively, individuals who participated may have responded in ways designed to reflect more socially appropriate attitudes. The sensitive nature of efforts associated with gaining insights about public perceptions relating to genes and race guide us to exercise some caution, there­fore, in drawing conclusions about the results. The results may be considered all the more important, however, if framed as representative of individuals who may be less polarized in views relating to genetic discrimination and/or genetically based racism than results might have been had individuals with strong racist attitudes or unconcerned about social desirability had participated more frequently. Additionally, we lacked sufficient numbers of Hispanic/Latino or Asian participants to consider possi­ble differences associated with these racialized social groups. Thus, care should be exercised with regard to generalizing the findings.

Future Applications

The percentage of participants in this research found to believe that race is intrinsically linked to physical, cognitive and social traits suggests that messages which link race, genes and health may be used to legitimize racism. This contributes to the complexities of targeting science-based messages about genetics to the lay public. Racial discrimination is a salient issue already extended to the realm of genetics in the minds of the lay public. Thus, the goal now is responsible communication and message construction that aims to avoid messages that cue or exacerbate racist beliefs. Viagra Super Active

The tools developed in this research could help message designers avoid the distribution of public communication messages that result in unintended effects, such as intensifying or creating genetically based racist beliefs. For example, the GDI and the GBRI might be used as a screening tool in the formative research phase of a public communication campaign. Message designers might use the instruments as a posttest following exposure to a potential message about HGR. If results reveal that an HGR message triggers higher levels of genetic discrimination and genetic racism as compared to some baseline measure or control group, message designers should then refine the message until its content is found to be less inflammatory. Similar utility may be demonstrated with regard to science curricula associated with genetic health in high-school and college science textbooks. Authors may be cautioned to consider the effects of their renditions of the material on the formation of mindsets inappropriately linking cognitive and other abilities to racial categories.

Physicians who see patients in primary care as well as pharmacists who counsel patients about drug use might also consider the ways that they talk about medications and therapies to insure that the language used reflects attention to the individual in all of his or her characteristics associated with prescribing rather than an arbitrary racial marker. Likely, the age; health status; lifestyle; weight; and behaviors, such as smoking and alcohol consumption, all factor into a physician’s prescription, but if a shorthand phrase such as, “Black Americans were found to benefit more from use of this medication for their heart disease,” is spoken at the time of making a treatment recommendation, the physician risks not only noncompliance with taking the medication but also a further erosion of trust between caregiver and client. viagra jelly online

In sum, messages describing genetic disease may contribute to attitudes that are genetically discrimi natory, and messages linking race, genes and health may function to legitimize racism. These potential effects add to the challenge of targeting science-based messages about genetics and health to the lay public. Therefore, any message, however well intended by public health promoters, pharmacoge-nomic companies and others charged with deriving the public discourse, as well as the interaction between professionals in the healthcare system and their clients, should be considered for its effects on these interlinked attitude sets. In many settings and situations, the tools developed here will permit assessment of such effects early in the planning process and allow the reframing of messages to deflect discriminatory mindsets, thus promoting science-based message design in health communication about genetics.

Category: Diseases / Tags: genetic discrimination, health communication, instrument development, racism, racism and genetics

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