Direct-to-Consumer Racial Admixture Tests and Beliefs About Essential Racial Differences.
Ontology highlight
ABSTRACT:
SUBMITTER: Phelan JC
PROVIDER: S-EPMC4392852 | biostudies-literature | 2014 Sep
REPOSITORIES: biostudies-literature
Publications
Direct-to-Consumer Racial Admixture Tests and Beliefs About Essential Racial Differences.
Phelan Jo C JC Link Bruce G BG Zelner Sarah S Yang Lawrence H LH
Social psychology quarterly 20140901 3
Although at first relatively disinterested in race, modern genomic research has increasingly turned attention to racial variations. We examine a prominent example of this focus-direct-to-consumer racial admixture tests-and ask how information about the methods and results of these tests in news media may affect beliefs in racial differences. The reification hypothesis proposes that by emphasizing a genetic basis for race, thereby reifying race as a biological reality, the tests increase beliefs ...[more]
Similar Datasets
Project description:BackgroundClinical laboratory tests are now being prescribed and made directly available to consumers through retail outlets in the USA. Concerns with these test have been raised regarding the uncertainty of testing methods used in these venues and a lack of open, scientific validation of the technical accuracy and clinical equivalency of results obtained through these services.MethodsWe conducted a cohort study of 60 healthy adults to compare the uncertainty and accuracy in 22 common clinical lab tests between one company offering blood tests obtained from finger prick (Theranos) and 2 major clinical testing services that require standard venipuncture draws (Quest and LabCorp). Samples were collected in Phoenix, Arizona, at an ambulatory clinic and at retail outlets with point-of-care services.ResultsTheranos flagged tests outside their normal range 1.6× more often than other testing services (P < 0.0001). Of the 22 lab measurements evaluated, 15 (68%) showed significant interservice variability (P < 0.002). We found nonequivalent lipid panel test results between Theranos and other clinical services. Variability in testing services, sample collection times, and subjects markedly influenced lab results.ConclusionWhile laboratory practice standards exist to control this variability, the disparities between testing services we observed could potentially alter clinical interpretation and health care utilization. Greater transparency and evaluation of testing technologies would increase their utility in personalized health management.FundingThis work was supported by the Icahn Institute for Genomics and Multiscale Biology, a gift from the Harris Family Charitable Foundation (to J.T. Dudley), and grants from the NIH (R01 DK098242 and U54 CA189201, to J.T. Dudley, and R01 AG046170 and U01 AI111598, to E.E. Schadt).
| S-EPMC4855945 | biostudies-literature
Project description:Direct-to-consumer genetic tests (DTC-GT) have become a bridge between marketing and traditional healthcare services. After earning FDA endorsement for such facilities, several fast-developing companies started to compete in the related area. Pharmacogenomic (PGx) tests have been introduced as potentially one of the main medical services of such companies. Most of the individuals will be interested in finding out about the phenotypic consequences of their genetic variants and molecular risk factors against diverse medicines they take or will take later. Direct-to-consumer pharmacogenomic tests (DTC-PT) is still in its young age, however it is expected to expand rapidly through the industry in the future. The result of PGx tests could be considered as the main road toward the implementation of personalized and precision medicine in the clinic. This narrative critical review study provides a descriptive overview on DTC-GT, then focuses on DTC-PT, and also introduces and suggests the potential approaches for improving the clinical related outcomes of such tests on healthcare systems.
| S-EPMC7999840 | biostudies-literature
Project description:Significant racial/ethnic disparities in unintended pregnancy persist in the United States, with the highest rates observed among low-income black and Hispanic women. Differences in contraceptive preferences, beliefs, and self-efficacy may be instrumental in understanding contraceptive behaviors that underlie higher rates of unintended pregnancy among racial/ethnic minorities.Our objective was to understand how contraceptive preferences, beliefs, and self-efficacy vary by race and ethnicity among women veterans.We analyzed data from the Examining Contraceptive Use and Unmet Need Study, a national telephone survey of women veterans aged 18-44 years who had received primary care at the Veterans Administration in the prior 12 months. Participants rated the importance of various contraceptive characteristics and described their level of agreement with contraceptive beliefs using Likert scales. Contraceptive self-efficacy was assessed by asking participants to rate their certainty that they could use contraception consistently and as indicated over time using a Likert scale. Multivariable logistic regression was used to examine associations between race/ethnicity and contraceptive attitudes, controlling for age, marital status, education, income, religion, parity, deployment history, and history of medical and mental health conditions.Among the 2302 women veterans who completed a survey, 52% were non-Hispanic white, 29% were non-Hispanic black, and 12% were Hispanic. In adjusted analyses, compared with whites, blacks had lower odds of considering contraceptive effectiveness extremely important (adjusted odds ratio; 0.55, 95% confidence interval, 0.40-0.74) and higher odds of considering the categories of does not contain any hormones and prevents sexually transmitted infections extremely important (adjusted odds ratio, 1.94, 95% confidence interval, 1.56-2.41, and adjusted odds ratio; 1.99, 95% confidence interval, 1.57-2.51, respectively). Hispanics also had higher odds than whites of considering the category of does not contain any hormones and prevents sexually transmitted infections extremely important (adjusted odds ratio, 1.72, 95% confidence interval, 1.29-2.28, and adjusted odds ratio, 1.63; 95% confidence interval, 1.21-2.19, respectively). Compared with whites, blacks and Hispanics had higher odds of expressing fatalistic beliefs about pregnancy (adjusted odds ratio, 1.79, 95% confidence interval, 1.35-2.39, and adjusted odds ratio, 1.48, 95% confidence interval, 1.01-2.17, respectively); higher odds of viewing contraception as primarily a woman's responsibility (adjusted odds ratio, 1.92, 95% confidence interval, 1.45-2.55, and adjusted odds ratio, 1.77; 95% confidence interval, 1.23-2.54, respectively); and lower odds of being very sure that they could use a contraceptive method as indicated over the course of a year (adjusted odds ratio, 0.73, 95% confidence interval, 0.54-0.98, and adjusted odds ratio, 0.66, 95% confidence interval, 0.46-0.96, respectively).Women veterans' contraceptive preferences, beliefs, and self-efficacy varied by race/ethnicity, which may help explain observed racial/ethnic disparities in contraceptive use and unintended pregnancy. These differences underscore the need to elicit women's individual values and preferences when providing patient-centered contraceptive counseling.
| S-EPMC5502093 | biostudies-literature
Project description:Individuals who undergo multiplex direct-to-consumer (DTC) genomic testing receive genetic risk results for multiple conditions. To date, research has not investigated the influence of individual differences in disease perceptions among consumers on testing outcomes. A total of 2037 participants received DTC genomic testing and completed baseline and follow-up surveys assessing disease perceptions and health behaviors. Participants were asked to indicate their most feared disease of those tested. Perceived seriousness and controllability of the disease via lifestyle or medical intervention were assessed. Participants most frequently reported heart attack (19.1%) and Alzheimer's disease (18.6%) as their most feared disease. Perceived seriousness and control over the feared disease both influenced response to DTC genomic testing. Greater perceived seriousness and diminished perceived control were associated with higher, but not clinically significant levels of anxiety and distress. In some cases these associations were modified by genetic risk. No significant associations were observed for diet, exercise and screening behaviors. Individual differences in disease perceptions influence psychological outcomes following DTC genomic testing. Higher perceived seriousness may make a consumer more psychologically sensitive to test results and greater perceived control may protect against adverse psychological outcomes. Findings may inform development of educational and counseling services.
| S-EPMC4758676 | biostudies-literature
Project description:BACKGROUND:The U.S. Food and Drug Administration has begun a public process to redefine how companies are allowed to use the term "healthy" on food packages. Although the definition is formulated based on the latest consensus in nutrition and epidemiological research, it is also important to understand how consumers define and understand the term if it is to be behaviorally relevant. This research is an exploratory study designed to provide a descriptive account of consumers' perceptions of and beliefs about the meaning of "healthy" food. METHODS:A nationwide U.S. sample of 1,290 food consumers was surveyed in December 2018. Respondents answered 15 questions designed to gauge perceptions of healthy food and to elicit preference for policies surrounding healthy food definitions. Responses are weighted to demographically match the population. Categorical variables have a sampling error of ±2.7%. Exploratory factor analysis is used to determine latent dimensions of health perceptions related to food type. RESULTS:Consumers were about evenly split on whether a food can be deemed healthy based solely on the foods' nutritional content (52.1% believing as such) or whether there were other factors that affect whether a food is healthy (47.9% believing as such). Consumers were also about evenly split on whether an individual food can be considered healthy (believed by 47.9%) or whether this healthiness is instead a characteristic of one's overall diet (believed by 52.1%). Ratings of individual food products revealed that "healthy" perceptions are comprised of at least three underlying latent dimensions related to animal origin, preservation, and freshness/processing. Focusing on individual macronutrients, perceived healthiness was generally decreasing in a food's fat, sodium, and carbohydrate content and increasing in protein content. About 40% of consumers thought a healthy label implied they should increase consumption of the type of food bearing the label and about 15% thought the label meant they could eat all they wanted. CONCLUSIONS:Results suggest consumer's perceptions of "healthy," which is primarily based on fat content, partially aligns with the FDA definition but also suggest consumers perceive the word as a broader and more nuanced concept that defies easy, uniform definition. Results highlight areas where nutrition education may be needed and suggest disclosures may need to accompany health claims so that consumers know what, precisely, is being communicated.
| S-EPMC6793866 | biostudies-literature
Project description:BACKGROUND: Recent years have seen increased concern about direct-to-consumer (DTC) genetic testing (i.e., the sale and use of genetic tests without involving a health care provider). Numerous professional organizations have developed policies in this area. However, little systematic evidence exists to inform public policy about these tests. METHODS: We conducted a systematic search to identify genetic tests that are sold DTC without involving a health care provider. We evaluated the practices of companies offering DTC genetic tests for risk of thrombosis using criteria from multiple sources and a minimal set of key practices. RESULTS: We identified 84 instances of currently available health-related DTC genetic tests sold on 27 Web sites; the most common were for pharmacogenomics (12), risk of thrombosis (10), and nutrigenomics (10). For the DTC genetic tests for risk of thrombosis, we found low adherence to recommendations. Online information was frequently incomplete and had low agreement with professional recommendations. CONCLUSION: Our findings document the rapid growth in the availability of health-related DTC genetic tests and highlight the need to improve the delivery of DTC genetic tests. A major implication of this study is the need for the scientific and medical community to develop consistent recommendations to increase their impact.
| S-EPMC2790792 | biostudies-literature
Project description:While direct to consumer health-related genetic testing (DTCGT) has potential to provide accessible genetic information and empower individuals to make informed healthcare decisions, it attracts concern associated with regulatory gaps, clinical utility and potential for harm. Understanding public reactions to DTCGT is vital to facilitate considered regulatory, health care and consumer protection strategies. Yet little is known, particularly outside the dominant US market, about how the general public view and might engage with DTCGT outside traditional health care systems. This paper addresses this knowledge gap with the first empirical study to investigate general public views across four countries, each at different stages of market development. US (n?=?1000), UK (n?=?1014), Japanese (n?=?1018) and Australian (n?=?1000) respondents completed an online experimental survey assessing comprehension, risk perceptions, and potential psychological and behavioural outcomes by type of test (disease pre-disposition and drug sensitivity), severity, lifestyle factors, and family history. Results showed generally low awareness and intention to purchase across countries, highest in the US and lowest in Japan. Results also showed clear preference for within-country purchases (less in Japan), with reports returned via doctors far more important in Japan. All respondents were more likely to act on test results, where there was higher genetic or lifestyle risk of developing a disease. Statistical comparisons of demographic and health-related variables across countries point to the need for further analyses designed to explain much needed cross-cultural, cross-health care system and developed versus developing market differences.
| S-EPMC7029038 | biostudies-literature
Project description:PURPOSE:There is increasing demand from the public for direct-to-consumer (DTC) genetic tests, and the US Food and Drug Administration limits the type of health-related claims DTC tests can market. Some DTC companies provide raw genotyping data to customers if requested, and these raw data may include variants occurring in genes recommended by the American College of Medical Genetics and Genomics to be reported as incidental/secondary findings. The purpose of this study was to review the outcome of requests for clinical confirmation of DTC results that were received by our laboratory and to analyze variant classification concordance. METHODS:We identified 49 patient samples received for further testing that had previously identified genetic variants reported in DTC raw data. For each case identified, information pertaining to the outcome of clinical confirmation testing as well as classification of the DTC variant was collected and analyzed. RESULTS:Our analyses indicated that 40% of variants in a variety of genes reported in DTC raw data were false positives. In addition, some variants designated with the "increased risk" classification in DTC raw data or by a third-party interpretation service were classified as benign at Ambry Genetics as well as several other clinical laboratories, and are noted to be common variants in publicly available population frequency databases. CONCLUSION:Our results demonstrate the importance of confirming DTC raw data variants in a clinical laboratory that is well versed in both complex variant detection and classification.
| S-EPMC6301953 | biostudies-literature
Project description:At present, specialized companies offering genetic testing services without the involvement of clinicians are growing; this development is a direct consequence of the significant decrease in genotyping and sequencing costs. Online companies offer predictions about the risk of developing complex diseases during one's life course, and they offer suggestions for personal lifestyle. Several companies have been created that provide nutrigenetics services; these companies suggest dietary indications-a central issue in the prevention and etiopathogenesis of specific diseases-based on one's personal genetic background. Dietary patterns are defined on the basis of a limited set of genetic markers. In this article, we analyze the online nutrigenetics services offered by 45 companies worldwide, to obtain an overall picture of the costs, the types of nutritional traits considered and the level of scientific precision of the services proposed. Our analysis clearly highlights the need for specific guidelines, in order to ensure a set of minimum quality standards for the nutrigenetics services offered to the customer.
| S-EPMC7071525 | biostudies-literature
Project description:Racial disparities in preterm birth and infant death have been well documented. Less is known about racial disparities in neonatal morbidities among infants who are born at <37 weeks of gestation.The purpose of this study was to determine whether the risk for morbidity and death among infants who are born preterm differs by maternal race.A retrospective cohort design included medical records from preterm deliveries of 19,325 black, Hispanic, and white women in the Consortium on Safe Labor. Sequentially adjusted Poisson models with generalized estimating equations estimated racial differences in the risk for neonatal morbidities and death, controlling for maternal demographics, health behaviors, and medical history. Sex differences between and within race were examined.Black preterm infants had an elevated risk for perinatal death, but there was no difference in risk for neonatal death across racial groups. Relative to white infants, black infants were significantly more likely to experience sepsis (9.1% vs 13.6%), peri- or intraventricular hemorrhage (2.6% vs 3.3%), intracranial hemorrhage (0.6% vs 1.8%), and retinopathy of prematurity (1.0% vs 2.6%). Hispanic and white preterm neonates had similar risk profiles. In general, female infants had lower risk relative to male infants, with white female infants having the lowest prevalence of a composite indicator of perinatal death or any morbidity across all races (30.9%). Differences in maternal demographics, health behaviors, and medical history did little to influence these associations, which were robust to sensitivity analyses of pregnancy complications as potential underlying mechanisms.Preterm infants were at similar risk for neonatal death, regardless of race; however, there were notable racial disparities and sex differences in rare, but serious, adverse neonatal morbidities.
| S-EPMC5572800 | biostudies-other