"Having Pain is Normal": How Talk about Chronic Pelvic and Genital Pain Reflects Messages from Menarche.

Chronic pelvic and genital pain conditions (CPGPCs) often go undiagnosed and untreated in women for years after symptom onset. This is due, in part, to communication challenges experienced by patients such as difficulties describing pain and the stigmatized nature of CPGPCs. However, studies have yet to explore how early messages about menstruation, a context similar in its stigmatized and painful nature, may contribute to undertreatment and diagnostic delays for adult women experiencing CPGPCs by normalizing pelvic and genital pain when they are young girls. Guided by critical feminist theorizing (CFT) and sensitized by an existing typology of negative messages communicated by mothers to daughters about menstruation, this study analyzes interviews with 17 women with CPGPCs to explore how features of negative messages about menstruation (i.e., information restriction and omission) appear and recur in women's descriptions of their later CPGP experiences. Findings suggest that early life talk about menstruation forms a communicative precedent for young girls which later constrains how they talk about CPGP in adulthood. Findings also problematize early-life communication about menstruation, which normalizes women's pain, and suggest connections to outcomes (e.g., diagnostic delays) for women with CPGPCs. Theoretical and practical implications are offered. Limitations and future directions are described.

A religious framework as a lens for understanding the intersection of genetics, health, and disease.

The primary goal of this study was to determine the extent to which religious frameworks inform lay public understandings of genes and disease. Contrary to existing research, there were minimal differences between racial groups. We did, however, observe two patterns in that data that are worthy of discussion. First, because participants were from the south, the finding that participants from both racial groups ascribe to a religious belief system to make sense of their lived experiences is not surprising. Rather, it appears to be reflective of the religious culture that is an integral part of the south and our identity as a nation. A second noteworthy finding is that while a significant number of participants believe that a relationship exists between health status, genes, and religious behaviors, they also recognize that positive health behaviors must also be adopted as a means for staving off disease. In some cases, however, there was a belief that health issues could dissolve or disappear as a result of certain religious behaviors such as prayer.

Development and validation of tools to assess genetic discrimination and genetically based racism.

It is possible that communication from mass media, public health or consumer advertising sources about human genetics and health may reify stereotypes of racialized social groups, perhaps cueing or exacerbating discriminatory and racist attitudes. This research used a multifaceted approach to assess lay perceptions of genetic discrimination and genetically based racism (N = 644). Two tools for use in strategic planning efforts associated with communicating about human genetics and health, the genetic discrimination instrument (GDI) and the genetically based racism instrument (GBRI), were derived. The GDI emerged as having five dimensions associated with lay perceptions of genetic discrimination. The GBRI was found to be unidimensional. Scale validation activities supported the tools' concurrent and discriminant validity characteristics. Significant differences between blacks and whites on the criminal control rights, social reproductive rights and employer rights factors as well as the GBRI were found. We recommend application of these screening tools prior to national dissemination of messages associated with genes and disease susceptibility, including school and university-based curricula.

The role of "genetics" in popular understandings of race in the United States.

The increase in public representation of the science-based concept "genetics" in the mass media might be expected to have a major impact on public understanding of the concept of "race." A model of lay understandings of the role of genetics in the contemporary United States is offered based on focus group research, random digit dial surveys, and community based surveys. That model indicates that lay people identify are primarily by physical features, but these identifications are categorized into a variety of groupings that may be regional, national, or linguistic. Although they believe that physical appearance is caused largely by genetics, and therefore that race has a genetic basis, they do not uniformly conclude, however, that all perceived racial characteristics are genetically based. Instead, they vary in the extent to which they attribute differences to cultural, personal, and genetic factors.

The Tuskegee Study of Untreated Syphilis and public perceptions of biomedical research: a focus group study.

African Americans are less likely than European Americans to participate in biomedical research. Researchers often attribute nonparticipation to the "Tuskegee effect." Using critical qualitative analysis of focus group data, we examined the public's use of the Tuskegee Study of Untreated Syphilis (TSUS) to discuss biomedical research. Our participants articulated three primary themes in relation to TSUS: 1) that TSUS made them suspicious about biomedical research; 2) that other values had to weigh against concerns about TSUS; and 3) that African Americans could take steps to resolve their concerns about TSUS. African Americans were more likely to discuss TSUS than were European Americans. African Americans did not use TSUS to express simple fear. African Americans suggested issues other than TSUS that influence the decision to participate in research. African Americans indicated specific reforms that would increase participation in research. We discuss how a better understanding of African Americans' use of TSUS can enhance research participation and allay concerns about "another Tuskegee."

Talking about human genetics within religious frameworks.

Information generated by the Human Genome Project is intended to result in better understanding of genetic variation and disease, affording opportunities to intervene in human health both prior to and after birth. The lay public's construction of meaning associated with these aims, however, has been given little systematic consideration. As God and religion are often invoked as structures to give meaning to technical and scientific discoveries, this project sought to examine public discussions associated with religious frameworks used to talk about human genetics. The results of 17 focus group discussions revealed a range of lay epistemologies that suggest how religious faith may impact individual perceptions, with some consistent differences in discourse for African Americans as compared to European Americans observed. The ethical and practical applications of this information are extended to suggestions for health promotion, care, and counseling.

Evaluating direct-to-consumer marketing of race-based pharmacogenomics: a focus group study of public understandings of applied genomic medication.

Some medical providers have advocated applied genomics, including the use of genetically linked racial phenotypes in medical practice, raising fear that race-based medication will become justified. As with other emerging medical genetic technologies, pharmaceutical companies may advertise these treatments. Researchers fear that consumers will uncritically accept pharmaceutical messages and demand the product. In this exploratory study, we examined public reactions to advertisements for applied genomic medications. A focus group methodology was employed. Participants tended to resist the message and generated warrants for doing so, indicating critical reception of the messages. Message accepters also provided warrants. Warrants for resistance and acceptance differ between self-identified racial groups. Consumers, health care providers, and pharmaceutical corporations will benefit from a better understanding of direct-to-consumer advertisements as medical communication. Our study concludes that both advocates and opponents of direct-to-consumer advertisements should recognize that potential consumers of pharmacogenomics act as critical consumers of health advertising discourse.

Attitudinal barriers to delivery of race-targeted pharmacogenomics among informed lay persons.

OBJECTIVES: To ascertain attitudes of prospective patients relevant to the delivery of race-based pharmacogenomics. METHODS: Written anonymous survey and qualitative responses in two sets of reactance format focus groups over-sampled for minority groups in urban, suburban, and rural communities conducted from February through April, 2002 [N = 104] and August through November, 2002 [N = 120]. RESULTS: Participants do not associate "races" exclusively with continental clusters. They have incomplete knowledge of their recent ancestors (39.6% do not know all their biological grandparents). They would be highly suspicious of race-labeled drugs; with 47.5% saying they would be very suspicious of their safety and 40.6% indicating they would be very suspicious of their efficacy. A substantial minority of African-American participants (13.2%) would prefer to take the drugs designated for European Americans. Effect of discussion of race-based medicine on racial attitudes is ambiguous. CONCLUSIONS: Patient knowledge of ancestry and suspicion of race-designated drugs constitute substantial barriers that need to be incorporated in judging the likely effectiveness of race-based pharmacogenomics.

Informed lay preferences for delivery of racially varied pharmacogenomics.

OBJECTIVES: To understand public perceptions and opinions of three options for prescribing medicine: individualized genetic testing, race-based prescription, and traditional prescription. METHODS: Focus groups in urban, suburban, and rural communities over-sampled for minority groups conducted from February through April, 2001 in Georgia. RESULTS: Group members (N = 102) identified individualized genetic testing as providing the best quality of care (60% of talk turns; 75% in postdiscussion anonymous survey), but stipulated the need for protection from the invasion of privacy, discrimination, and prohibitive cost. Most individuals chose genetic testing because it provided individualized attention, and African-Americans indicated they would choose genetic testing even if the costs were high. Overall, individuals were suspicious of race-based prescription. Analyses for degree of suspicion revealed a main effect for race and an interaction effect for race and gender. CONCLUSIONS: If issues of cost, discrimination, and privacy are addressed, lay individuals prefer genetic testing as the basis for prescription of medicines that exhibit racially patterned response variation.

What does "a gene for heart disease" mean? A focus group study of public understandings of genetic risk factors.

There is growing concern in the medical community about potential genetic determinism in the patient population. Limited information about the public understanding of genetic factors in disease formation is available. To access public perceptions of potentially deterministic phrasing of genetic risk factors, we sought to establish interpretations of the phrase, "a gene for heart disease." Focus groups in urban, suburban, and rural communities were conducted from July through October, 2001 in Georgia. A total of 108 participants were recruited. Participants were recruited to balance sex and racial representation. We used three outcome measures for participants understandings of the phrase: (1) participants' statements of the meaning of the phrase; (2) the level of determinism assigned to genetic factors by participants; and (3) participant reports of the health consequences of having "a gene for heart disease." Participants did not report a single interpretation of the phrase. There were dominant participant interpretations under each outcome measure: (1) "a gene for heart disease" was interpreted as meaning genetic and environmental factors both played roles in disease formation; (2) genetic predisposition was perceived as heightened, not absolute, risk; (3) the perceived health impact was a greater risk of becoming sick. Minority interpretations were found under each measure. Overall, naming "a gene for heart disease" does not appear to have a deterministic impact on a plurality of participants' perceptions of risks associated with genetic factors. Genetic fatalism in patient populations may be confined to a sizable minority. Important considerations for provider intervention and patient education are indicated.