Knowledge,attitudes, and beliefs related to hypertension and hyperlipidemia self-management among African-American men living in the southeastern United States

ObjectivePerceptions of illness affect cardiovascular disease (CVD) self-management. This study explores knowledge, attitudes, and beliefs regarding hypertension and hyperlipidemia management among 34 African-American men with hypertension and/or hyperlipidemia, age 40–65, living in the Southeastern United States.MethodsIn-person focus groups were conducted using semi-structured interview questions informed by the Health Belief Model (HBM).ResultsParticipants had a high level of knowledge about hypertension self-management, but less about cholesterol self-management. Perceived severity of both conditions was acknowledged, though participants perceived hypertension as more severe. Barriers to self-management included medication side effects and unhealthy dietary patterns. Facilitators included social support, positive healthcare experiences, and the value placed on family. Cultural implications highlighted the importance of food in daily life and social settings. Participants expressed how notions of masculinity affected self-management—noting the impact of feelings of vulnerability and perceived lack of control stemming from diagnosis and treatment expectations.ConclusionsThe findings highlight gaps in knowledge of hyperlipidemia versus hypertension, and the impact of cultural context and perceptions on engagement in self-management behaviors.Practice implicationsPublic health practitioners and healthcare providers serving African-American men should address cultural factors and notions of masculinity which can hinder effective disease management among this population.     

The on-line promotion and sale of nutrigenomic services

PurposeNutrigenomic researchers hope to improve health through personalized nutrition, but many consider the sale of nutrigenomic services to be premature. Few studies have evaluated the promotion and sales practices of organizations hosting nutrigenomic websites.MethodsSystematic search and analysis of websites promoting nutrigenomic services in October 2006.ResultsOf the 64 organizations hosting websites, 29 organizations offered (24 of 29) or promoted (5 of 29) at-home testing and 26 organizations sold services on-line (17 of 26) or provided a direct link to on-line sales (9 of 26). A lack of transparency made it difficult to identify unique tests; however, three organizations were linked to 56% of all test mentions. Most organizations were healthcare/wellness service providers (50%) or laboratories/biotech companies (27%). Few organizations provided on-line information about laboratory certifications (20%), nutrigenomic test or research limitations (13%), test validity or utility (11%), or genetic counseling (9%). Affiliation opportunities were offered by 15 organizations.ConclusionsOrganizations did not provide adequate information about nutrigenomic services and at-home genetic testing. Affiliation opportunities and distribution agreements suggest the promotion and sale of nutrigenomic services will continue, increasing the importance of consumer and provider education. In absence of federal regulation, organizations promoting nutrigenomic services should equate websites to product labels and include information to facilitate informed decision-making.     

Cardiovascular Disease in African American Women: A Health Care Disparities Issue

ObjectivesTo review the current status of cardiovascular disease (CVD) in African American women compared to Caucasian women in regards to 4 categories of CVD: coronary artery disease (CAD), hypertension, stroke, and congestive heart failure (CHF), and to call attention to the need to place more emphasis on the need to increase awareness of CVD as the greatest killer of African American females in the United States.MethodsA review of the recent literature on the subject of CVD in women over the past several years was conducted with a focus on CVD in African American women. Statistical data on incidence, prevalence, morbidity and mortality of CAD, hypertension, stroke, and CHF in black and white women were compared.ResultsStatistical data gathered over the past several years indicate that African American women have greater mortality than Caucasian women from CAD, hypertension, stroke, and CHF. The mortality rate from CAD is 69% higher in black women than in white women. Mortality for black females from hypertension is 352% higher than for white females. Age-adjusted stroke death rates are 54% higher in African American than in Caucasian women, and the age-adjusted mortality rate per 100 000 is 113.4 vs 97.5 for black and white women, respectively. Incidence, prevalence, and morbidity figures for CAD, hypertension, stroke, and CHF are all higher for African American females than for Caucasian females.ConclusionsAfrican American women are at exceptional risk for CVD, and more recognition of this fact as well as greater awareness of the problem should be promulgated and distributed by means of public education programs. Physicians who treat black patients also need to be encouraged to be more aggressive in their efforts to detect patients at risk and to initiate therapy early on in the course of CVD in this sub-population.     

Educational preferences in individuals with cardiometabolic disease differs with age,ethnicity and educational status

ObjectivesTo evaluate how sociodemographic factors influence educational modality preferences in people with cardiometabolic disease.MethodsThis was a cross-sectional study performed in people with diabetes and cardiovascular disease, who completed a questionnaire to denote their previous experience and ranked preferences for different educational modalities.ResultsThe questionnaire was completed by 3751 people, of whom 59% were men, median (interquartile range) age was 68 (59?76) years, and 78% were White European. In total, 73% had diabetes, 35% had heart disease, and 10% had history of stroke; the majority (83.4%) had one of these conditions. Overall preference was for one-to-one education (77% ranked first choice), and telephone education ranked the lowest. People tended to prefer modalities they had previously experienced.ConclusionsWe highlight the importance of considering factors that could influence selection of educational modalities including age, ethnicity, gender and educational level. We anticipate this approach will aid in the design, delivery and tailoring of educational programmes that are accessible to the diverse cohort of people living with chronic diseases, including diabetes and cardiovascular disease.Practice ImplicationsGiven the influence of multiple demographic factors and previous experiences on expressed preferences, providers should support individuals to make informed decisions about educational interventions to maximise engagement.     

Communication Between Middle SES Black Women and Healthcare Providers About HIV Testing

Purpose

This article explores the impact of patient and healthcare provider communication (PPC) on the HIV testing behaviors of middle socioeconomic status (SES) Black women in North Carolina. We explore how PPC about STIs and HIV (or the lack thereof) affects the provision of STI/HIV testing by either confirming the need for middle SES Black women to test routinely or potentially deterring women from feeling they need to be tested.

Postmortem heart weight: relation to body size and effects of cardiovascular disease and cancer

BackgroundGender, body weight, and cardiovascular disease (CVD) are all variables known to influence human heart weight. The impact of cancer is less studied, and the influence of age is not unequivocal. We aimed to describe the relationship between body size and heart weight in a large autopsy cohort and to compare heart weight in patients with cancer, CVD, and other diseases.Methods and ResultsRegistered information, including cause of death, evidence of cancer and/or CVD, heart weight, body weight, and height, was extracted from the autopsy reports of 1410 persons (805 men, mean age 66.5 years and 605 women, mean age 70.6 years). The study population was divided in four groups according to cause of death; cancer (n=349), CVD (n=470), mixed group who died from cancer and CVD and/or lung disease (n=263), and a reference group with patients who did not die from any of these conditions (n=328). In this last group, heart weight correlated only slightly better with body surface area than body weight, and nomograms based on body weight are presented. Compared to the reference group (mean heart weight: 426 g and 351 g in men and women, respectively), heart weight was significantly lower (men: P<.05, women: P<.001) in cancer patients (men: 392 g, women: 309 g) and higher (P<.001) in patients who died from CVD (men: 550 g, women: 430 g). Similar results were obtained in linear regression models adjusted for body weight and age. Among CVD, heart valve disease had the greatest impact on heart weight, followed by old myocardial infarction, coronary atherosclerosis, and hypertension. Absolute heart weight decreased with age, but we demonstrated an increase relative to body weight.ConclusionThe weight of the human heart is influenced by various disease processes, in addition to body weight, gender, and age. While the most prevalent types of CVD are associated with increased heart weight, patients who die from cancer have lower average heart weight than other patient groups. The latter finding, however, is diminished when adjusting for body weight.SummaryThe present study demonstrates that the weight of the human heart is influenced by various disease processes like cancer and CVD, in addition to body weight, gender and, possibly, age.     

Engaging patients in population-based chronic disease management: A qualitative study of barriers and intervention opportunities

ObjectiveCardiovascular disease (CVD) continues to be a leading cause of morbidity in the U.S. Managing CVD risk factors, such as diabetes or hypertension, can be challenging for many individuals. We investigated the barriers experienced by patients who persistently struggled to reach their CVD risk factor control goals.MethodsThis qualitative study examined patient, clinician, and researcher observations of individuals’ experiences in a chronic disease management program. All participants (n = 332) were enrolled in a clinical trial testing a skills-based group intervention seeking to improve healthcare engagement. Data were analyzed through a general inductive approach and resulting themes were structured along the Capability-Opportunity-Motivation-Behavior framework.ResultsAnalyses identified care engagement barriers related to participants’ communication skills and activation, care team relationship processes, and emotional factors. Although most participants reported benefitting from skills training, persistent barriers included distrust of their providers, shame about health challenges, and dissatisfaction with care team interactions that were described as impersonal or unresponsive.Conclusions and practice implicationsEfforts to support engagement in CVD risk factor management programs should address whether patients and their care team have the necessary skills, opportunities and confidence to proactively communicate health needs and engage in non-judgmental interactions for goal-setting, rapport-building, and shared decision-making.     

Do we neglect women with sleep apnea?

Obstructive sleep apnea (OSA) affects approximately 5% of women and 15% of men in the middle-aged adults, and associated with adverse health outcomes. The prevalence and severity of OSA in women increase across the menopause, as the cardiovascular death and events do. Unfortunately, women with OSA might be under-diagnosed due to circumstances related to the family lifestyle and socio-cultural factors in addition to the different OSA clinical expression. Evaluation of cardiovascular global risk assessment in women with OSA is very important to prevent the high potential cardiovascular morbidity and mortality, since they are poorly informed about cardiovascular disease (CVD). So, we should be aware of the clues suspecting OSA and cardiovascular risk in women admitting to sleep clinics.     

Recommendations from the EGAPP Working Group: Genomic profiling to assess cardiovascular risk to improve cardiovascular health

Summary of RecommendationsThe Evaluation of Genomic Applications in Practice and Prevention Working Group (EWG) found insufficient evidence to recommend testing for the 9p21 genetic variant or 57 other variants in 28 genes (listed in Table 1) to assess risk for cardiovascular disease (CVD) in the general population, specifically heart disease and stroke. The EWG found that the magnitude of net health benefit from use of any of these tests alone or in combination is negligible. The EWG discourages clinical use unless further evidence supports improved clinical outcomes. Based on the available evidence, the overall certainty of net health benefit is deemed “Low.”RationaleIt has been suggested that an improvement in CVD risk classification (adjusting intermediate risk of CVD into high- or low-risk categories) might lead to management changes (e.g., earlier initiation or higher rates of medical interventions, or targeted recommendations for behavioral change) that improve CVD outcomes. In the absence of direct evidence to support this possibility, this review sought indirect evidence aimed at documenting the extent to which genomic profiling alters CVD risk estimation, alone and in combination with traditional risk factors, and the extent to which risk reclassification improves health outcomes.Analytic validityAssay-related evidence on available genomic profiling tests was deemed inadequate. However, based on existing technologies that have been or may be used and on data from two of the companies performing such testing, the analytic sensitivity and specificity of tests for individual gene variants might be at least satisfactory.Clinical validityTwenty-nine gene candidates were evaluated, with 58 different gene variant/disease associations. Evidence on clinical validity was rated inadequate for 34 of these associations (59%) and adequate for 23 (40%). Inadequate grades were based on limited evidence, poor replication, existence of possible biases, or combinations of these factors. For heart disease (25 combined associations) and stroke (13 combined associations), profiling provided areas under the receiver operator characteristics curve of 66% and 57%, respectively. Only the association of 9p21 variants with heart disease had convincing evidence of a per-allele odds ratio of between 1.2 and 1.3; this was the highest effect size for any variant/disease combination with at least adequate evidence. Although the 9p21 association seems to be independent of traditional risk factors, there is adequate evidence that the improvement in risk prediction is, at best, small.Clinical utilityClinical utility was not formally evaluated in any of the studies reported to date, including for 9p21. As a result, no evidence was available on the balance of benefits and harms. Also, there was no direct evidence available to assess the health benefits and harms of adding these markers to traditional risk factors (e.g., Framingham Risk Score). However, the estimated additional benefit from adding genomic markers to traditional risk factors was found to be negligible.Contextual IssuesPrevention of CVD is a public health priority. Improvements in outcomes associated with genomic profiling could have important impacts. Traditional risk factors such as those used in the Framingham Risk Scores have an advantage in clinical screening and risk assessment strategies because they measure the actual targets for therapy (e.g., lipid levels and blood pressure). To add value, genomic testing should lead to better outcomes than those achievable by assessment and treatment of traditional risk factors alone. Some issues important for clinical utility remain unknown, such as the biological mechanism underlying the most convincing marker's (9p21) association with CVD; the level of risk that changes intervention; whether long-term disease outcomes will improve; how individuals ordering direct to consumer tests will understand/respond to test results and interact with the health care system; and whether direct to consumer testing will motivate behavior change or amplify potential harms.     

Using qualitative and quantitative strategies to evaluate knowledge and perceptions about sickle cell disease and sickle cell trait

OBJECTIVES: To evaluate knowledge, perceptions and the effectiveness of different sources of information about sickle cell trait (SCT) and sickle cell disease (SCD); to determine individual knowledge of SCT status. METHODS: 28 individuals participated in three focus groups (healthcare providers, people affected by SCD or SCT, and community members). Surveyors interviewed 282 respondents within their neighborhoods. RESULTS: Common themes across the focus groups included the limited general awareness of SCD and SCT, the emphasis on the benign nature of SCT rather than on future implications, and the need for public health education campaigns about SCD and SCT involving media strategies. The majority of community survey respondents (n = 243, 86.2%) had correct general knowledge about the genetic basis and severity of SCD, but only 16% (n = 45) knew their own trait status. When respondents had received information about SCD from friends and acquaintances, they were three times more likely to know their SCT status, compared with respondents who had not received information from a personal source (p < 0.01). CONCLUSIONS: Despite a screening history in the 1970s fraught with controversy, sickle cell disease management and detection can be a model for the empowerment of communities in making informed decisions about theirs and their families' futures, given the burgeoning of genetic information.     

An integrative review of stakeholder views on Advance Care Directives (ACD): Barriers and facilitators to initiation,documentation, storage,and implementation

ObjectiveTo examine the views and experiences of patients and their health care providers on developing advance care planning (ACP) and advance care directives (ACD); and determine barriers and facilitators to ACD development, storage, and use, including implications for people with communication disability.MethodAn integrative review of 93 studies, analysed according to their content themes.ResultsContent themes encapsulated the initiation, documentation, and implementation stages of ACP/ACD. Lack of guidance for initiating and supporting ACP/ACD impedes discussions, and both patients and healthcare providers avoid discussions owing to fear of dying and reluctance to think about end-of-life.ConclusionsThere are several barriers and facilitators to the initiation of ACP discussions, documentation and implementation of ACD, and little research exploring the views of legal professionals on the development, storage, or use of ACP documents. Further research is needed to explore the timing and responsibility of both legal and health professionals in initiating and supporting ACP discussions.Practice ImplicationsIt is important for healthcare providers to raise ACP discussions regularly so that patients have time to make informed advance care decisions. Storage of the document in an electronic health record might facilitate better access to and implementation of patients’ end-of-life care decisions.     

Cardiovascular risk and metabolic profile of Polish citizens from Lower Silesia. First signs of metabolic crisis?

IntroductionPopulation biobanks are essential for the development of public health screening and improvement of personalized medicine. Since 2012, Biobank of Łukasiewicz Research Network – PORT Polish Center for Technology Development (PORT Biobank) has collected more than 120 000 biological samples from nearly 5000 inhabitants of Lower Silesia, together with a variety of demographic, anthropometric, life style and health information.Material and methodsThe analyzed group consisted of 2274 participants (1398 women, 876 men). Both women and men were further subdivided into five age decades (20+, 30+, 40+, 50+, 60+). For this study, the level of lipids (total cholesterol, high-density lipoprotein (HDL), low-density lipoprotein (LDL), triglycerides) was estimated and correlated with the level of high-sensitivity C-reactive protein (hs-CRP) and biometric parameters.ResultsWe have demonstrated for the first time that biochemical changes that may lead to cardiovascular diseases (CVD) occurred already in the group of people aged 30+. Our observation is based on measurements of lipids, glucose, inflammatory (hs-CRP) and biometric markers such as body mass index (BMI) and waist-to-hip ratio (WHR).ConclusionsPositive correlations with age for these variables suggest the ongoing progress of metabolic changes, which in the end may lead to a fatal outcome such as myocardial infarction or stroke. It suggests that CVD screening programs should be dedicated to a wider group, especially younger citizens, in order to prevent fatal outcomes related to CVD.     

Use of the Internet as a Health Information Resource Among French Young Adults: Results From a Nationally Representative Survey

Background

The Internet is one of the main resources of health information especially for young adults, but website content is not always trustworthy or validated. Little is known about this specific population and the importance of online health searches for use and impact. It is fundamental to assess behaviors and attitudes of young people looking for online health-related information and their level of trust in such information.

Objective

The objective is to describe the characteristics of Internet users aged 15-30 years who use the Web as a health information resource and their trust in it, and to define the context and the effect of such use on French young adults’ behavior in relation to their medical consultations.

Methods

We used the French Health Barometer 2010, a nationally representative survey of 27,653 individuals that investigates population health behaviors and concerns. Multivariate logistic regressions were performed using a subsample of 1052 young adults aged 15-30 years to estimate associations between demographics, socioeconomic, and health status and (1) the use of the Internet to search for health information, and (2) its impact on health behaviors and the physician-patient relationship.

Results

In 2010, 48.5% (474/977) of Web users aged 15-30 years used the Internet for health purposes. Those who did not use the Internet for health purposes reported being informed enough by other sources (75.0%, 377/503), stated they preferred seeing a doctor (74.1%, 373/503) or did not trust the information on the Internet (67.2%, 338/503). However, approximately 80% (371/474) of young online health seekers considered the information found online reliable. Women (P<.001) and people with higher sociocultural positions (OR 0.5, 95% CI 0.3-0.9 and OR 0.4, 95% CI 0.2-0.7 for employees and manual workers, respectively, vs individuals with executive or manager positions) were more likely to use the Internet for health purposes. For a subsample of women only, online health seeking was more likely among those having a child (OR 1.8, 95% CI 1.1-2.7) and experiencing psychological distress (OR 2.0, 95% CI 1.0-4.0). Finally, for online health seekers aged 15-30 years, one-third (33.3%, 157/474) reported they changed their health behaviors (eg, frequency of medical consultations, way of taking care of one’s own health) because of their online searches. Different factors were associated with different outcomes of change, but psychological distress, poor quality of life, and low income were the most common.

Conclusions

The Internet is a useful tool to spread health information and prevention campaigns, especially to target young adults. Young adults trust online information and consider the Internet as a valid source of health advice. Health agencies should ensure the improvement of online health information quality and the creation of health-related websites and programs dedicated to young adults.     

News coverage and online advertising effects on patient-led search for aspirin,heart health,and stroke information and educational tool use

ObjectiveUsing indicators of campaign effort and relevant news stories, we sought to predict two patterns of patient behavior regarding information about aspirin and heart health: patient use of a campaign web tool to determine whether they should talk with a physician about using aspirin and patient searches for information about aspirin and the heart.MethodsWe used ARIMA modeling to predict two time series as a function of independent variables.ResultsWe found significant prediction of time series in both models, but campaign expenditure only predicted use of a campaign web tool whereas weekly news stories predicted online searches regarding aspirin and the heart originating from Minnesota.ConclusionPatient information engagement is a function of information salience at least in part. Campaign advertising expenditure can prompt audience use of campaign tools but news coverage also operates as an important force on patient search behavior.Practice ImplicationsHealth promotion professionals charged with reaching patients with heart health and stroke prevention messages should monitor news coverage as a potential complementary or rival force while at the same time promoting campaign-related information online.     

Patients’ perspectives about doctor-patient communication regarding transvaginal mesh implant surgery

ObjectivesMany women experience pelvic floor disorders which may require medical intervention such as transvaginal mesh implant surgeries (TVM; the abdominal or vaginal insertion of woven netting to support pelvic tissue). We examined women’s perceptions of communication with their health professionals concerning TVM.DesignWe analysed 153 women’s written submissions to an Australian Government Inquiry regarding their experiences of transvaginal mesh surgery to explore their perceptions of TVM-related doctor-patient communication. Data were analysed using deductive and inductive reflexive thematic analysis.ResultsWomen expressed several challenges in their communication with their health professionals. Three themes regarding communication were generated: Insufficient information was abundant; Normalisation and minimisation of the procedure and risks; and, Desired communication interactions.ConclusionsAccording to women’s accounts, doctor-patient communication was poor. Health professionals must be knowledgeable about medical procedures and their potential complications and provide their patients with adequate, accurate information to make informed choices about their health. Health professionals should also document informed consent.Practice implicationsHealth professionals should be well-informed about TVM, including best-practice treatments for pelvic floor disorders, indications for TVM, the risks, outcomes and potential complications from various forms of TVM, and ways to adequately communicate sufficient information to women.     

Oncology healthcare professionals’ knowledge,attitudes, and practices regarding young carers

ObjectiveIncreasing numbers of youths are facing a relative’s cancer. In this context, some are required to provide significant support and are called young carers (YCs). However, little is known about how these youth are viewed and supported by health professionals. The aim of this study was to investigate the knowledge, attitudes, and practices of oncology healthcare professionals regarding YCs.MethodsThirty-one oncology professionals working in France (adult and pediatric departments and homecare services) participated in semi-structured interviews.ResultsThe results indicated that almost all professionals had already met a YC and could identify several situations in their professional context. Their knowledge of YCs appeared to influence their attitudes and practices. They perceived this situation in a rather superficial way when their discourse and ideas were explored in-depth. They mentioned some ideas for improving support for YCs, but also many barriers.ConclusionThe results highlight a moderate level of awareness. Thus, it is necessary to enhance providers’ awareness and knowledge of YCs.Practice implicationsAwareness campaigns and training programs need to be developed for oncology healthcare professionals to help them better identify, understand, and support YCs and their families. This type of action would positively impact patient care.     

Making Quality Health Websites a National Public Health Priority: Toward Quality Standards

BackgroundMost US adults have limited health literacy skills. They struggle to understand complex health information and services and to make informed health decisions. The Internet has quickly become one of the most popular places for people to search for information about their health, thereby making access to quality information on the Web a priority. However, there are no standardized criteria for evaluating Web-based health information. Every 10 years, the US Department of Health and Human Services'' Office of Disease Prevention and Health Promotion (ODPHP) develops a set of measurable objectives for improving the health of the nation over the coming decade, known as Healthy People. There are two objectives in Healthy People 2020 related to website quality. The first is objective Health Communication and Health Information Technology (HC/HIT) 8.1: increase the proportion of health-related websites that meet 3 or more evaluation criteria for disclosing information that can be used to assess information reliability. The second is objective HC/HIT-8.2: increase the proportion of health-related websites that follow established usability principles.ObjectiveThe ODPHP conducted a nationwide assessment of the quality of Web-based health information using the Healthy People 2020 objectives. The ODPHP aimed to establish (1) a standardized approach to defining and measuring the quality of health websites; (2) benchmarks for measurement; (3) baseline data points to capture the current status of website quality; and (4) targets to drive improvement.MethodsThe ODPHP developed the National Quality Health Website Survey instrument to assess the quality of health-related websites. The ODPHP used this survey to review 100 top-ranked health-related websites in order to set baseline data points for these two objectives. The ODPHP then set targets to drive improvement by 2020.ResultsThis study reviewed 100 health-related websites. For objective HC/HIT-8.1, a total of 58 out of 100 (58.0%) websites met 3 or more out of 6 reliability criteria. For objective HC/HIT-8.2, a total of 42 out of 100 (42.0%) websites followed 10 or more out of 19 established usability principles. On the basis of these baseline data points, ODPHP set targets for the year 2020 that meet the minimal statistical significance—increasing objective HC/HIT-8.1 data point to 70.5% and objective HC/HIT-8.2 data point to 55.7%.ConclusionsThis research is a critical first step in evaluating the quality of Web-based health information. The criteria proposed by ODPHP provide methods to assess website quality for professionals designing, developing, and managing health-related websites. The criteria, baseline data, and targets are valuable tools for driving quality improvement.     

Preferences for results delivery from exome sequencing/genome sequencing

PurposeThe aim of this study was to explore the implications of sequencing information and stated preferences for return of results among research participants.MethodsSix focus groups were held with 39 ClinSeq participants. The groups included participants who had received results, those who had not, those affected with cardiovascular disease, and healthy adults. Audio recordings of the sessions were transcribed and coded and analyzed for themes.ResultsAll participants expressed interest in receiving results that are medically actionable, nonactionable, carrier, and less so variants that cannot be interpreted. Most participants preferred to receive results in person, although several endorsed use of Internet-based resources that they could return to. Participants identified benefits for health management along with satisfying curiosity, making scientific contributions, and partnering in research. Value was seen in gaining control over health risks. Concerns were distress and/or fear that may result. Some participants were opposed to or ambivalent about learning certain types of results, particularly those having to do with diseases that were incurable or that might have implications for the health of their children.ConclusionThere was relative enthusiasm about the value of learning sequencing information, yet it was tempered by concern about negative feeling responses and aversion to learning about incurable conditions.Genet Med16 6, 442–447.