Minority participation in genetics research is limited.
1,2 Efforts to increase minority participation in genetics research have included targeting high-risk populations through cancer registries, cultural tailoring of study materials, addressing issues of trust in the target population, and incorporating flexible intervention and evaluation methods.
3 However, these methods have shown at best to have only modest improvements in minority participation.
4,5 While active recruitment methods (e.g., tumor registries) have been shown to be more effective in increasing minority recruitment than passive accrual approaches (e.g., self-referral)
6, 7 it is still unclear why minority participation in genetics research remains low.
It has been widely suggested that African Americans may be apprehensive about participating in genetics research due to a legacy of research abuse in the United States (e.g., Tuskegee syphilis study) and fears that this research will be used as a means to label groups as inferior and foster discrimination.
1,8–13 Indeed, research has indicated that African Americans who have negative perceptions of genetics research also report less interest in genetics research and testing.
14,15 However, these suggestions have not always been substantiated by empirical evidence.
There is evidence suggesting that minority groups may be concerned about participating in research linking genes, race/ethnicity, and health outcomes.
8,16,17 For example, African Americans have indicated low levels of belief in messages surrounding medications deemed to be effective specifically for African Americans.
18 African Americans also have reported skepticism about race-based medication information,
19 fears of a racist conspiracy
18 and high levels of suspicion regarding the safety and effectiveness of race-based medications.
17,19,20 New discoveries linking genetic variation to racial differences in health outcomes often termed “disparities”
21,22 may elicit similar levels of disbelief and skepticism as well as emotional responses such as worry or anger that may in turn exacerbate minority groups’ negative responses to and decrease their willingness to participate in clinical genetics research.
16,18,19Indeed, genetic factors are increasingly being examined in an effort to explain racial/ethnic health disparities in common health conditions such a lung cancer.
23–27 In the United States there are sizeable disparities in lung cancer incidence and mortality with African Americans disproportionately affected.
28,29 While cigarette smoking is the leading preventable cause of lung cancer,
30 racial/ethnic disparities in lung cancer incidence can not be explained by differences in smoking behavior alone.
31,32 When comparing the smoking patterns of African Americans with whites we find that historically African Americans begin smoking at older ages and smoke fewer cigarettes per day than whites.
29 Yet African Americans are more likely to be diagnosed with and die from lung cancer than whites.
28For this report we focus on explanations for disparities in lung cancer incidence where conjectures about different causal factors are well described and relatively straight-forward to convey to lay audiences.
26,27,33 Ongoing epidemiologic research suggests that common polymorphisms in a number of genes may increase genetic susceptibility to the harms of environmental exposures such as cigarette smoking and increase risk for diseases like lung cancer.
34,35 For example, results of research conducted by Mechanic and colleagues
26 suggest that common genetic variations in
TP53 may account for increased risk for lung cancer and worsened lung cancer prognosis among African Americans. Also it has been reported that African Americans may be more likely than whites to carry a less-efficient DNA damage-induced
G2-M checkpoint which may be associated with an increased risk of lung cancer among African Americans.
27Other common explanations for disparities in lung cancer incidence include racial differences in menthol cigarette use, exposure to toxins and race-related stress. The majority of African Americans smoke menthol cigarettes (70–80%) as compared with white smokers (20–30%).
36 It has been suggested that menthol numbs the lungs allowing for more smoke to be inhaled with each puff.
37 Hence, African Americans may smoke fewer cigarettes but take in a greater amount of harmful chemicals.
38 Further, a greater proportion of African Americans live in poverty than whites, (25% vs 9%, respectively),
39 and may be more likely to live and work near environmental toxins and pollutants than whites.
40–42 Race-based discrimination has been linked to increased levels of stress and health conditions such as hypertension among African Americans.
43–45 Accordingly, it could be that increased rates of lung cancer among African Americans may also result from increased smoking behavior in response to prolonged exposure to race-related stress.
46The conundrum for clinical genetics research is that adequate minority participation in this research is essential to fully understand the multifactorial influences on lung cancer disparities. Genetic research occurs in a socio-political context
23,47,48 that may influence how minority groups’ interpret this information and influence their willingness to participate in related research. Moreover, individuals exposed to such information may have preexisting health beliefs and attitudes that lead them to discredit the messages particularly when they do not align with their personal worldviews.
Clinical genetics research generally recruits family members of those affected by cancer.
49–51 A loved one’s diagnosis with lung cancer may influence how an individual responds to explanations for lung cancer disparities. Smoking status may influence these responses such that smokers may perceive explanations for lung cancer disparities differently than nonsmokers. Thus, it is important to consider these factors in evaluating African American’s responses to genetic explanations for lung cancer disparities. In this report we describe an observational study designed to assess reactions to different explanations (i.e., genetics, toxin exposure, menthol cigarettes, race-related stress) for disparities in lung cancer incidence among family members of African American patients with lung cancer. We also examined whether reactions to these explanations were associated with willingness to participate in clinical genetics research.