This qualitative study explored black and white general internists’ attitudes about the relevance of race in clinical care; views of the relationships among race, genetics, and disease; and expectations about the future of genetics and health.
We conducted 10 racially concordant focus groups of primary care physicians in five metropolitan areas in the United States. Ninety board certified or eligible general internists (50 self-identified white and 40 self-identified black) participated in the study. Analysis included a two-stage independent review and adjudication process.
Both black and white physicians concluded that the race of the patient is medically relevant, but did not agree upon why race is important in clinical decisions. They were reticent to make connections among race, genetics, and disease and asserted that genetics has a limited role in explaining racial differences in health. However, they were enthusiastic about the future of genomic medicine, believing that the main benefit will be the potential to improve the efficacy of commonly used drugs.
Understanding the similarities and differences between black and white physicians’ attitudes and beliefs about race, health and genetics is important for the translation of genomics to clinical care.
clinical decision making; race; genetic variation; health disparities; physicians’ attitudes
This article presents the findings of a qualitative study of multiracial individuals’ understanding of identity, race and human genetic variation. The debate regarding the correlation between race, genetics and disease has expanded, but limited empirical data has been collected regarding the lay public’s perspective. Participants in this study explore their identity and its relationships to their health care interactions. Participants also share their views on race-based therapeutics, health disparities and the connections between race, ancestry and genetics. Their voices highlight the limitations of racial categories in describing differences within our increasingly diverse communities. The genomic era will be a pivotal period in challenging current understandings and uses of racial categories in health.
Understanding physician perspectives on the intersection of race and genomics in clinical decision making is critical as personalized medicine and genomics become more integrated in health care services. There is a paucity of literature in the United States of America (USA) and globally regarding how health care providers understand and use information about race, ethnicity and genetic variation in their clinical decision making. This paper describes the development of three scales related to addressing this gap in the literature: the Bonham and Sellers Genetic Variation Knowledge Assessment Index--GKAI, Health Professionals Beliefs about Race—HPBR, and Racial Attributes in Clinical Evaluation—RACE scales.
A cross-sectional, web survey of a national random sample of general internists in the USA (N = 787) was conducted. Confirmatory factor analysis was used to assess the construct validity of the scales. Scale items were developed through focus groups, cognitive interviews, expert advisory panels, and exploratory factor analysis of pilot data.
GKAI was measured as a count of correct answers (Mean = 3.28 SD = 1.17). HPBR yielded two domains: beliefs about race as a biological phenomenon (HPBR-BD, alpha = .69, 4 items) and beliefs about the clinical value of race and genetic variation for understanding risk for disease (HPBR-CD alpha = .61, 3 items). RACE yielded one factor (alpha = .86, 7 items).
GKAI is a timely knowledge scale that can be used to assess health professional knowledge of race and human genetic variation. HPBR is a promising new tool for assessing health professionals’ beliefs about the role of race and its relationship with human genetic variation in clinical practice. RACE offers a valid and reliable tool for assessing explicit use of racial attributes in clinical decision making.
Scale development; Medical decision making; Personalized medicine; RACE (Racial Attributes in Clinical Evaluation); GKAI (Genetic Variation Knowledge Assessment Index); Explicit use of race
Genomic discoveries will increasingly advance the science of medicine. Limited genomic literacy may adversely impact the public’s understanding and use of the power of genetics and genomics in health care and public health. In November 2011, a meeting was held by the National Human Genome Research Institute to examine the challenge of achieving genomic literacy for the general public, from K-12 to adult education. The role of the media in disseminating scientific messages and in perpetuating, or reducing, misconceptions was also discussed. Workshop participants agreed that genomic literacy will only be achieved through active engagement between genomics experts and the varied constituencies that comprise the public. This report summarizes the background, content, and outcomes from this meeting, including recommendations for a research agenda to inform decisions about how to advance genomic literacy in our society.
genomics; public health genomics; genomic literacy; National Human Genome Research Institute
Genomics has the potential to improve personalized healthcare. Nurses are vital to the utilization of genomics in practice. This study assessed nursing attitudes, receptivity, confidence, competency, knowledge and practice in genomics to inform education efforts.
Materials & methods
Cross-sectional study of registered nurses who completed an online Genetic/Genomic Nursing Practice Survey posted on a national nursing organization website.
A total of 619 registered nurses participated. The largest proportion of education level were nurses with a baccalaureate degree (39%). Most (67.5%) considered genomics very important to nursing practice. However, 57% reported their genomic knowledge base to be poor or fair. The mean total knowledge score correct response rate was 75%. Yet 60% incorrectly answered that diabetes and heart disease are caused by a single gene variant. Most (64%) had never heard of the Essential Nursing Competencies and Curricula Guidelines in Genomics. Higher academic education or post licensure genetic education increased family history collection in practice.
Most nurses are inadequately prepared to translate genomic information into personalized healthcare. Targeted genomic education is needed to assure optimal workforce preparation for genomics practice integration.
genetics; genomics; nurses; nursing; nursing practice; survey
Little is known about what strategies are cost-effective in increasing participation among physicians in surveys that are conducted exclusively via the web. To assess the effects of incentives and prenotification on response rates and costs, general internists (N = 3,550) were randomly selected from the American Medical Association (AMA) Masterfile and assigned to experimental groups that varied in the amount of a promised incentive (none, entry into a $200 lottery, $50, or $100) and prenotification (none, prenotification letter only, or prenotification letter containing a $2 preincentive). Results indicated that the response rates were highest in the groups promised $100 and $50, respectively. While the postal prenotification letter increased response rates, the inclusion of a small token $2 preincentive had no effect on participation. Further, unlike mail surveys of physicians, the $2 preincentive was not cost-effective. Among physicians, larger promised incentives of $50 or $100 are more effective than a nominal preincentive in increasing participation in a web-only survey. Consistent with prior research, there was little evidence of nonresponse bias among the experimental groups.
physicians; response rates; web surveys; incentives; costs
Sickle Cell Trait (HbAS), the heterozygous state for the sickle hemoglobin beta globin gene is carried by as many as 100 million individuals including up to 25% of the population in some regions of the world (World Health Organization, Provisional agenda item 4.8, EB117/34 (22 December 2005) or World Health Organization, Provisional agenda item 11.4 (24 April 2006)). Persons with HbAS have some resistance to falciparum malaria infection in early childhood (Piel FB, Patil AP, Howes RE, et al., Nat Commun 2010;1104:1–7 and Aidoo M, Terlouw DJ, Kolczak M, et al., Lancet 2002;359:1311–1312) and as a result individuals with HbAS living in malarial endemic regions of Africa have a survival advantage over individuals with HbAA. Reports from the US emphasize possible health risks for individuals with HbAS including increased incidence of renal failure and malignancy, thromboembolic disorders, splenic infarction as a high altitude complication, and exercise-related sudden death. The National Heart, Lung, and Blood Institute, National Institutes of Health convened a workshop in Bethesda, Maryland on June 3–4, 2010, Framing the Research Agenda for Sickle Cell Trait, to review the clinical manifestations of HbAS, discuss the exercise-related sudden death reports in HbAS, and examine the public health, societal, and ethical implications of policies regarding HbAS. The goal of the workshop was to identify potential research questions to address knowledge gaps.
Greater attention towards genetics as a contributor to group health differences may lead to inappropriate use of race/ethnicity and gender as genetic heuristics and exacerbate health disparities. As part of a web-based survey, 1,035 family physicians (FPs) rated the contribution of genetics and environment to racial/ethnic and gender differences in health outcomes, and the importance of race/ethnicity and gender in their clinical decision-making. FPs attributed racial/ethnic and gender differences in health outcomes equally to environment and genetics. These beliefs were not associated with rated importance of race/ethnicity or gender in clinical decision-making. FPs appreciate the complexity of genetic and environmental influences on health differences by race/ethnicity and gender.
Genetics; Race; Ethnicity; Gender; Clinical practice; Health disparities
The role of patient race in medical decision-making is heavily debated. While some evidence suggests that patient race can be used by physicians to predict disease risk and determine drug therapy, other studies document bias and stereotyping by physicians based on patient race. It is critical, then, to explore physicians' attitudes regarding the medical relevance of patient race.
We conducted a qualitative study in the United States using ten focus groups of physicians stratified by self-identified race (black or white) and led by race-concordant moderators. Physicians were presented with a medical vignette about a patient (whose race was unknown) with Type 2 diabetes and untreated hypertension, who was also a current smoker. Participants were first asked to discuss what medical information they would need to treat the patient. Then physicians were asked to explicitly discuss the importance of race to the hypothetical patient's treatment. To identify common themes, codes, key words and physician demographics were compiled into a comprehensive table that allowed for examination of similarities and differences by physician race. Common themes were identified using the software package NVivo (QSR International, v7).
Forty self-identified black and 50 self-identified white physicians participated in the study. All physicians - regardless of their own race - believed that medical history, family history, and weight were important for making treatment decisions for the patient. However, black and white physicians reported differences in their views about the relevance of race. Several black physicians indicated that patient race is a central factor for choosing treatment options such as aggressive therapies, patient medication and understanding disease risk. Moreover, many black physicians considered patient race important to understand the patient's views, such as alternative medicine preferences and cultural beliefs about illness. However, few white physicians explicitly indicated that the patient's race was important over-and-above medical history. Instead, white physicians reported that the patient should be treated aggressively regardless of race.
This investigation adds to our understanding about how physicians in the United States consider race when treating patients, and sheds light on issues physicians face when deciding the importance of race in medical decision-making.
There is little to no information on whether race should be considered in the exam room by those who care for and treat patients. How primary care physicians understand the relationship between genes, race and drugs has the potential to influence both individual care and racial and ethnic health disparities.
To describe physicians’ use of race-based therapies, with specific attention to the case of BiDil (isosorbide dinitrate/hydralazine), the first drug approved by the FDA for a race-specific indication, and angiotensin-converting enzyme (ace) inhibitors in their black and white patients.
Qualitative study involving 10 focus groups with 90 general internists.
Black and white general internists recruited from community and academic internal medicine practices participated in the focus groups.Of the participants 64% were less than 45 years of age, and 73% were male.
The focus groups were transcribed verbatim, and the data were analyzed using template analysis.
There was a range of opinions relating to the practice of race-based therapies. Physicians who were supportive of race-based therapies cited several potential benefits including motivating patients to comply with medical therapy and promoting changes in health behaviors by creating the perception that the medication and therapies were tailored specifically for them. Physicians acknowledged that in clinical practice some medications vary in their effectiveness across different racial groups, with some physicians citing the example of ace inhibitors. However, physicians voiced concern that black patients who could benefit from ace inhibitors may not be receiving them. They were also wary that the category of race reflected meaningful differences on a genetic level. In the case of BiDil, physicians were vocal in their concern that commercial interests were the primary impetus behind its creation.
Primary care physicians’ opinions regarding race-based therapy reveal a nuanced understanding of race-based therapies and a wariness of their use by physicians.
race-based therapies; race; BiDil; ACE-inhibitors; personalized medicine; genetics
To review ethical, ethnic/ancestral, and societal issues of genetic and genomic information and technologies in the context of racial and ethnic health disparities.
Research and journal articles, government reports, web sites.
As knowledge of human genetic variation and its link to diseases continues to grow, some see race and ethnicity well poised to serve as genetic surrogates in predicting disease etiology and treatment response. However, stereotyping and bias, in clinical interactions can be barriers to effective treatment for racial and ethnic minority patients.
Implications for nursing practice
The nursing profession has a key role in assuring that genomic healthcare does not enhance racial and ethnic health inequities. This will require utilization of new genomic knowledge and caring for each patient as an individual in a culturally and clinically appropriate manner.
human genetics; clinical decision-making; race; health disparities; nursing
The study of human genetic variation has been advanced by research such as genome-wide association studies, which aim to identify variants associated with common, complex diseases and traits. Significant strides have already been made in gleaning information on susceptibility, treatment, and prevention of a number of disorders. However, as genetic researchers continue to uncover underlying differences between individuals, there is growing concern that observed population-level differences will be inappropriately generalized as inherent to particular racial or ethnic groups and potentially perpetuate negative stereotypes.
We caution that imprecision of language when conveying research conclusions, compounded by the potential distortion of findings by the media, can lead to the stigmatization of racial and ethnic groups.
It is essential that the scientific community and with those reporting and disseminating research findings continue to foster a socially responsible dialogue about genetic variation and human difference.
Engaging communities of color in the genetics public policy conversation is important for the translation of genetics research into strategies aimed at improving the health of all. Implementing model public participation and consultation processes can be informed by the Communities of Color Genetics Policy Project, which engaged individuals from African American and Latino communities of diverse socioeconomic levels in the process of “rational democratic deliberation” on ethical and policy issues stretching from genome research to privacy and discrimination concerns to public education. The results of the study included the development of a participatory framework based on a combination of the theory of democratic deliberation and the community-based public health model which we describe as “community-based dialogue.”
Increasing availability and public awareness of BRCA1/2 genetic testing will increase women’s self-referrals to genetic services. The objective of this study was to examine whether patient characteristics influence family physicians’ (FPs’) referral decisions when a patient requests BRCA1/2 genetic testing. FPs (n = 284) completed a web-based survey in 2006 to assess their attitudes and practices related to using genetics in their clinical practice. Using a 2×2×2 factorial design we tested the effects of a hypothetical patient’s race, level of worry and insurance status on FPs’ decisions to refer her for BRCA1/2 testing. The patient was not appropriate for referral based on USPSTF guidelines. No patient characteristics were associated with FPs’ referral decisions. Although referral was not indicated, only 8% did not refer to genetic services, 92% referred for genetic services, and 50% referred to genetic counseling. FPs regarded it unlikely that the patient carried a mutation. However, 65% of FPs believed if they refused to refer for genetic services it would harm their relationship with the patient. Despite scarce and costly genetic services FPs were likely to inappropriately refer a low-risk patient who requested BRCA1/2 testing. The implications of this inappropriate referral on women’s screening behavior, genetic services, and health care costs are unknown. Clinicians and patients could benefit from education about appropriate use of genetic services so that both are more comfortable with a decision against referral.
BRCA1/2 genetic services; physician referral; family physicians; evidence-based medicine; practice guidelines
To use qualitative methods to explore audiotape evidence of unanticipated confusion between benign prostatic hyperplasia (BPH) and prostate cancer in using a videotape BPH treatment decision aid (DA).
Qualitative analysis of semi-structured interviews and surveys originally collected to study men's interpretation of a DA.
Setting and Participants
Community sample of college and noncollege educated African American and white men (age≥50; n=188).
Transcript analysis identified themes in men's comments about BPH and cancer. Surveys measured BPH general and prostate cancer-specific knowledge, literacy (Short Test of Functional Health Literacy in Adults), BPH symptoms, and demographics.
In transcript analysis, 18/188 men spontaneously talked about BPH and cancer as being related to each other, despite explicit statements to the contrary in the video. Survey data suggest that up to 126/188 men (67%) persisted in misconceptions even after viewing the DA video. Three themes were identified in the transcripts: (1) BPH and cancer are equated, (2) BPH surgery is for the purpose of removing cancer, and (3) BPH leads to cancer.
Overall knowledge increases with DA use may mask incorrect theories of disease process. Further research should identify decision support designs and clinical counseling strategies to address persistence of beliefs contrary to new information presented in evidence-based DAs.
decision aids; benign prostatic hyperplasia; prostate cancer; shared decision making