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1.  Mixed Race: Understanding Difference in the Genome Era 
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.
PMCID: PMC2600806  PMID: 19079741
3.  National nursing workforce survey of nursing attitudes, knowledge and practice in genomics 
Personalized medicine  2013;10(7):10.2217/pme.13.64.
Aim
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.
Results
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.
Conclusion
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.
doi:10.2217/pme.13.64
PMCID: PMC3866033  PMID: 24363765
genetics; genomics; nurses; nursing; nursing practice; survey
4.  Effects of Incentives and Prenotification on Response Rates and Costs in a National Web Survey of Physicians 
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.
doi:10.1177/0163278711406113
PMCID: PMC3562654  PMID: 21613242
physicians; response rates; web surveys; incentives; costs
5.  Framing the research agenda for sickle cell trait: building on the current understanding of clinical events and their potential implications 
American journal of hematology  2012;87(3):340-346.
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.
doi:10.1002/ajh.22271
PMCID: PMC3513289  PMID: 22307997
6.  Family Physicians’ Beliefs about Genetic Contributions to Racial/Ethnic and Gender Differences in Health and Clinical Decision-Making 
Community Genetics  2008;11(6):352-358.
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.
doi:10.1159/000133307
PMCID: PMC3399248  PMID: 18690003
Genetics; Race; Ethnicity; Gender; Clinical practice; Health disparities
7.  Is race medically relevant? A qualitative study of physicians' attitudes about the role of race in treatment decision-making 
Background
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.
Methods
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).
Results
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.
Conclusions
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.
doi:10.1186/1472-6963-11-183
PMCID: PMC3167748  PMID: 21819597
8.  Primary Care Physicians’ Attitudes Regarding Race-Based Therapies 
Background
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.
Objective
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.
Design
Qualitative study involving 10 focus groups with 90 general internists.
Participants
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.
Approach
The focus groups were transcribed verbatim, and the data were analyzed using template analysis.
Results
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.
Conclusions
Primary care physicians’ opinions regarding race-based therapy reveal a nuanced understanding of race-based therapies and a wariness of their use by physicians.
doi:10.1007/s11606-009-1190-7
PMCID: PMC2855011  PMID: 20174973
race-based therapies; race; BiDil; ACE-inhibitors; personalized medicine; genetics
9.  Physicians’ attitudes towards race, genetics and clinical medicine 
Purpose
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1097/GIM.0b013e318195aaf4
PMCID: PMC3065019  PMID: 19265721
clinical decision making; race; genetic variation; health disparities; physicians’ attitudes
10.  Social and Ethical Implications of Genomics, Race, Ethnicity and Health Inequities 
Seminars in oncology nursing  2008;24(4):254-261.
Objectives
To review ethical, ethnic/ancestral, and societal issues of genetic and genomic information and technologies in the context of racial and ethnic health disparities.
Data sources
Research and journal articles, government reports, web sites.
Conclusion
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.
doi:10.1016/j.soncn.2008.08.005
PMCID: PMC2892396  PMID: 19000599
human genetics; clinical decision-making; race; health disparities; nursing
11.  Human difference in the genomic era: Facilitating a socially responsible dialogue 
BMC Medical Genomics  2010;3:20.
Background
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.
Discussion
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.
Summary
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.
doi:10.1186/1755-8794-3-20
PMCID: PMC2888748  PMID: 20504336
12.  Community-Based Dialogue: Engaging Communities of Color in the United States’ Genetics Policy Conversation 
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.”
doi:10.1215/03616878-2009-009
PMCID: PMC2800818  PMID: 19451407
13.  Too Many Referrals of Low-risk Women for BRCA1/2 Genetic Services by Family Physicians 
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.
doi:10.1158/1055-9965.EPI-07-2879
PMCID: PMC2772063  PMID: 18990739
BRCA1/2 genetic services; physician referral; family physicians; evidence-based medicine; practice guidelines
15.  Men's Theories About Benign Prostatic Hyperplasia and Prostate Cancer Following a Benign Prostatic Hyperplasia Decision Aid 
Objective
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).
Design
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).
Measures
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.
Results
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.
Conclusions
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.
doi:10.1111/j.1525-1497.2005.0280.x
PMCID: PMC1484629  PMID: 16423124
decision aids; benign prostatic hyperplasia; prostate cancer; shared decision making

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