Attitudes toward genetic research review: results from a national survey of professionals involved in human subjects protection.
Ontology highlight
ABSTRACT:
SUBMITTER: Lemke AA
PROVIDER: S-EPMC2902178 | biostudies-literature | 2010 Mar
REPOSITORIES: biostudies-literature
Publications
Attitudes toward genetic research review: results from a national survey of professionals involved in human subjects protection.
Lemke Amy A AA Trinidad Susan B SB Edwards Karen L KL Starks Helene H Wiesner Georgia L GL
Journal of empirical research on human research ethics : JERHRE 20100301 1
The recent expansion of human genetics research has raised complex ethical and regulatory issues. However, few published reports describe the views of professionals involved in human subjects protection (HSP) regarding the risks and benefits of genetic research. This anonymous, web-based study elicited the opinions of 208 HSP professionals about review of genetic research. The majority of respondents felt that different guidance is needed for various aspects of genetic protocol review compared w ...[more]
Similar Datasets
Project description:BackgroundDuring the COVID-19 pandemic, but also in the context of previous epidemic diseases, mobile apps for smartphones were developed with different goals and functions, such as digital contact tracing, test management, symptom monitoring, quarantine compliance, and epidemiological and public health research.ObjectiveThe aim of this study was to explore the potential for the acceptance of research-orientated apps (ROAs) in the German population. To this end, we identified distinctive attitudes toward pandemic apps and data sharing for research purposes among smartphone users in general and with a focus on differences in attitudes between app users and nonusers in particular.MethodsWe conducted a cross-sectional, national, telephone-based survey of 1003 adults in Germany, of which 924 were useable for statistical analysis. The 17-item survey assessed current usage of pandemic apps, motivations for using or not using pandemic apps, trust in app distributors and attitudes toward data handling (data storage and transmission), willingness to share coded data with researchers using a pandemic app, social attitudes toward app use, and demographic and personal characteristics.ResultsA vast majority stated that they used a smartphone (778/924, 84.2%), but less than half of the smartphone users stated that they used a pandemic app (326/778, 41.9%). The study focused on the subsample of smartphone users. Interestingly, when asked about preferred organizations for data storage and app distribution, trust in governmental (federal or state government, regional health office), public-appointed (statutory health insurance), or government-funded organizations (research institutes) was much higher than in private organizations (private research institutions, clinics, health insurances, information technology [IT] companies). Having a university degree significantly (P<.001) increased the likelihood of using a pandemic app, while having a migration background significantly (P<.001) decreased it. The overwhelming majority (653/778, 83.9%) of smartphone users were willing to provide their app data for state-funded research. Regarding attitudes toward app usage, striking differences between users and nonusers were found. Almost all app users (317/327, 96.9%) stated they would be willing to share data, whereas only 74.3% (336/452) of nonusers supported data sharing via an app. Two-thirds (216/326, 66.3%) of app users fully or rather agreed with the statement that using a pandemic app is a social duty, whereas almost the same proportion of nonusers entirely or rather disagreed with that statement (273/451, 60.5%).ConclusionsThese findings indicate a high potential for the adoption of ROAs among smartphone users in Germany as long as organizational providers engaged in development, operation, and distribution are state-funded or governmental institutions and transparency about data-using research institutions is provided.
| S-EPMC8822425 | biostudies-literature
Project description:Genome-wide sequencing in a research setting has the potential to reveal health-related information of personal or clinical utility for the study participant. There is increasing pressure to return research findings to participants that may not be related to the project aims, particularly when these could be used to prevent disease. Such secondary, unsolicited or 'incidental findings' (IFs) may be discovered unintentionally when interpreting sequence data, or as the result of a deliberate opportunistic screen. This cross-sectional, web-based survey investigated attitudes of 6944 individuals from 75 countries towards returning IFs from genome research. Participants included four relevant stakeholder groups: 4961 members of the public, 533 genetic health professionals, 843 non-genetic health professionals and 607 genomic researchers who were invited via traditional media, social media and professional e-mail list-serve. Treatability and perceived utility of incidental results were deemed important with 98% of stakeholders personally interested in learning about preventable life-threatening conditions. Although there was a generic interest in receiving genomic information, stakeholders did not expect researchers to opportunistically screen for IFs in a research setting. On many items, genetic health professionals had significantly more conservative views compared with other stakeholders. This finding demonstrates a disconnect between the views of those handling the findings of research and those participating in research. Exploring, evaluating and ultimately addressing this disconnect should form a priority for researchers and clinicians alike. This social sciences study offers the largest dataset, published to date, of attitudes towards issues surrounding the return of IFs from sequencing research.
| S-EPMC4795240 | biostudies-literature
Project description:PurposeDespite patients' widespread use and acceptance of complementary and integrative medicine (IM), few data are available regarding health-care professionals' current implementation of it in clinical routine. A national survey was conducted to assess gynecologists' attitudes to and implementation of complementary and integrative treatment approaches.MethodsThe Working Group on Integrative Medicine of the German Society of Gynecological Oncology conducted an online survey in collaboration with the German Society of Gynecology and Obstetrics (DGGG) in July 2019. A 29-item survey was sent to all DGGG members by email.ResultsQuestionnaires from 180 gynecologists were analyzed, of whom 61 were working office-based in private practice and 95 were employed in hospitals. Seventy percent stated that IM concepts are implemented in their routine clinical work. Most physicians reported using IM methods in gynecological oncology. The main indications for IM therapies were fatigue (n = 98), nausea and vomiting (n = 89), climacteric symptoms (n = 87), and sleep disturbances (n = 86). The most commonly recommended methods were exercise therapy (n = 86), mistletoe therapy (n = 78), and phytotherapy (n = 74). Gynecologists offering IM were more often female (P = 0.001), more often had qualifications in anthroposophic medicine (P = 0.005) or naturopathy (P = 0.019), and were more often based in large cities (P = 0.016).ConclusionsThere is strong interest in IM among gynecologists. The availability of evidence-based training in IM is increasing. Integrative therapy approaches are being implemented in clinical routine more and more, and integrative counseling services are present all over Germany. Efforts should focus on extending evidence-based knowledge of IM in both gynecology and gynecological oncology.
| S-EPMC7985114 | biostudies-literature
Project description:ObjectivesIn the current study, we aim to assess potential neurologist-related barriers to epilepsy surgery among Canadian neurologists.MethodsA 29-item, pilot-tested questionnaire was mailed to all neurologists registered to practice in Canada. Survey items included the following: (1) type of medical practice, (2) perceptions of surgical risks and benefits, (3) knowledge of existing practice guidelines, and (4) barriers to surgery for patients with epilepsy. Neurologists who did not complete the questionnaire after the initial mailing were contacted a second time by e-mail, fax, or telephone. After this reminder, the survey was mailed a second time to any remaining nonresponders.ResultsIn total, 425 of 796 neurologists returned the questionnaire (response rate 53.5%). Respondents included 327 neurologists who followed patients with epilepsy in their practice. More than half (56.6%) of neurologists required patients to be drug-resistant and to have at least one seizure per year before considering surgery, and nearly half (48.6%) failed to correctly define drug-resistant epilepsy. More than 75% of neurologists identified inadequate health care resources as the greatest barrier to surgery for patients with epilepsy.ConclusionsA substantial proportion of Canadian neurologists are unaware of recommended standards of practice for epilepsy surgery. Access also appears to be a significant barrier to epilepsy surgery and surgical evaluation. As a result, we are concerned that patients with epilepsy are receiving inadequate care. A greater emphasis must be placed on knowledge dissemination and ensuring that the infrastructure and personnel are in place to allow patients to have timely access to this evidence-based treatment.
| S-EPMC4336084 | biostudies-literature
Project description:IntroductionMany research programs are challenged to accommodate low-resource research participants' (LRRP) ancillary care needs when returning genomic research results. We define LRRP as those who are low income, uninsured, underinsured, or facing barriers to act upon the results returned. This study evaluates current policies and practices surrounding return of results (RoR) to LRRP, as well as the attitudes of investigators toward providing ancillary care to LRRP.MethodsA semi-structured interview study was conducted with representatives of 35 genomic research programs nationwide. Eligible programs were returning, or planning to return, medically actionable genomic results to participants.ResultsThree content categories emerged from this study, including: (1) RoR structures, (2) barriers to RoR to LRRP, and (3) solutions to meet community and LRRP needs. Three major structures of RoR emerged: (1) RoR Embedded in Clinical Care, (2) RoR Independent of Clinical Care, and (3) Reliance on Clinical Partnerships to Facilitate RoR. Inadequacy of program resources to address the needs of LRRP was commonly considered a significant obstacle. The attitudes and views of informants regarding responsibility to provide ancillary care for LRRP receiving genomic results were highly varied. Some informants believed that genomic sequencing and testing was not a priority for LRRP because of other pressing issues in their lives, such as housing and food insecurity. Research programs differ regarding whether clinical and social support for LRRP is considered within the purview of the research team. Some programs instituted accommodations for LRRP, including social work referral and insurance enrollment assistance.ConclusionSupport to access downstream treatment is not readily available for LRRP in many genomic research programs. Development of best practices and policies for managing RoR to LRRP is needed.
| S-EPMC8592386 | biostudies-literature
Project description:Study designInternational survey.ObjectiveA positive safety culture has been linked to better surgical outcomes, less hospital costs and less patient harm and severity-adjusted mortality, making safety attitudes relevant for society and both patient and health care provider. The aim of the current study is to assess attitudes toward safety culture among spinal care professionals.MethodsAn online survey was distributed to members of AOSpine International in 2016. The survey consisted out of 3 parts: (1) demographics, (2) the Safety Attitude Questionnaire (SAQ), and (3) expectations of responsibility for improving the safety culture. The SAQ measured job satisfaction, teamwork, and safety climate, perceptions of management, stress recognition, and working conditions. Multivariate logistic regression was performed to identify factors associated with safety attitudes.ResultsA total of 356 respondents replied. The SAQ showed that respondents in Africa have a significant lower score (odds ratio [OR] 0.19, P < .05) on working conditions, compared with spine professionals in Asia. Respondents in North America had the highest odds of having a higher score (OR 4.04, P < .05) compared with respondents in Asia. Gender, continent, occupation, tenure, and the number of employees in the clinic were not associated with the dimensions of safety culture (P > .05). The majority expected the surgeon to be mainly responsible for improving the safety culture in the operating room and at management level.ConclusionsThere was a lot of variety among different respondents worldwide albeit respondents in Africa scored significantly lower on working conditions, compared with spine professionals in Asia and North America, suggesting that wealthier countries have better working conditions which may lead toward better safety attitudes. Closer collaboration between hospital management and clinicians seems to be a target for improvement in safety culture. Furthermore, to show clinical relevance in this field, studies correlating safety attitudes with outcomes after spine surgery are warranted.
| S-EPMC6693059 | biostudies-literature
Project description:AimTo explore and compare Danish health-care professionals' attitudes and knowledge towards pain management of children.MethodsThe cross-sectional study was carried out using the Pediatric Pain Knowledge and Attitudes Questionnaire. The questionnaire was distributed to all health care professionals caring for children in three hospital settings, including nurses and physicians in departments of pediatric, emergency, and anesthesia and medical laboratory technologists.ResultsThe study was conducted in 2020 and 765 health care professionals participated. Within the six main categories included in the questionnaire, there were significant differences between nurses and physicians in three subcategories: view on the care of children in pain, using drugs to relieve pain, and the four mandatories. Comparing nurses with medical laboratory technicians, there were significant differences in the subcategory "view on the care of children in pain." Comparing types of clinical departments, there were significant differences in the subcategories' view on the care of children in pain, using drugs to relieve pain, and the four mandatories. Overall, we found that the participating health professionals did not have a uniform understanding of pain management and therefore might treat children differently.ConclusionThe present study highlights the need to align health care professionals' knowledge regarding pain assessment and management of children, as well as the need to develop and test interventions that support the use of knowledge in practice.
| S-EPMC10514779 | biostudies-literature
Project description:Introduction:As part of the precision medicine initiative, the National Institutes of Health/National Institute of Diabetes and Digestive Kidney Diseases has proposed collecting human kidney tissue to discover novel therapeutic targets from patients with kidney diseases. Patient attitudes on participating in kidney biopsy-based research are largely unknown. Methods:We evaluated attitudes toward donating kidney tissue to research among participants who had experienced a clinically indicated kidney biopsy, through a survey conducted 9 months (interquartile range, 5-13 months) after their biopsy. Results:Of the 177 participants contacted, 117 (66%) participated in the survey. A total of 85 participants (73%) reported that they would allow additional needle passes during a clinically indicated biopsy to donate kidney tissue for research. As reasons for participating in such a study, the participants reported the desire to help others and to contribute to science, and the lack of additional burden while participating in such a study. In a multivariable logistic model, older and African American participants had lower odds of allowing an additional pass for research (odds ratio: age ?65 years [vs. ?40], 0.15 [95% confidence interval, 0.03-0.73]; African Americans (vs. all others), 0.15 [95% confidence interval, 0.05-0.44]). However, participants' self-reported biopsy complications such as pain, anxiety, and hematuria did not affect their willingness to allow additional passes. A total of 23 participants (20%) stated that they would agree to undergo a biopsy for research even if it was not clinically indicated. Conclusion:Among patients who had experienced a kidney biopsy, a majority were amenable to additional needle passes to donate kidney tissue for research during a future, clinically indicated biopsy, whereas a minority would undergo a biopsy for research purpose only.
| S-EPMC5932306 | biostudies-literature
Project description:Policy Points The private sector has large potential influence over social determinants of health, but we have limited information about how businesses perceive or engage in actions to promote health and well-being. We conducted a national survey of more than 1,000 businesses of varying sizes and industries to benchmark private sector engagement in employee, environmental, consumer, and community health, which we collectively refer to as a corporate culture of health. Overall, the private sector is taking steps to foster health and well-being but still has substantial opportunity for growth. The private sector has a large potential role in advancing health and well-being, but attention to corporate practices around health tends to focus on a narrow range of issues and on large businesses. Systematically describing private sector engagement in health and well-being is a necessary step toward understanding the current state of the field and developing an agenda for businesses going forward. We conducted a national survey of 1,017 private sector organizations to assess current levels of engagement in what we term a culture of health (CoH). We measured corporate CoH along four dimensions, which assess the extent to which businesses promote employee, environmental, consumer, and community health and well-being. We also explored potential explanations for the number of health-related actions taken in each dimension. On average, businesses took 38% of health-related actions included in our survey. For each dimension, we found variation among businesses in the number of actions taken (on average, there were almost fourfold differences between the bottom and top quartiles of businesses in terms of actions taken). Mentioning health and well-being in the corporate mission, having a strategic plan for CoH, and perceiving a positive return on CoH investments were all associated with businesses' actions taken. Fewer than half of businesses, however, perceived a positive return on their CoH investments. Overall, the private sector is taking steps to foster health and well-being. However, there remains substantial variation among businesses and opportunity for growth, even among those currently taking the most action. Strengthening the business case for a corporate CoH may increase private sector investments in health and well-being. Actions taken by individual businesses, business groups, industries, and regulators have the potential to improve corporate engagement and impact.
| S-EPMC6904256 | biostudies-literature
Project description:Professional recommendations for the return of results from exome and whole-genome sequencing (ES/WGS) have been controversial. The lack of clear guidance about whether and, if so, how to return ES/WGS incidental results limits the extent to which individuals and families might benefit from ES/WGS. The perspectives of genetics professionals, particularly those at the forefront of using ES/WGS in clinics, are largely unknown. Data on stakeholder perspectives could help clarify how to weigh expert positions and recommendations. We conducted an online survey of 9,857 genetics professionals to learn their attitudes on the return of incidental results from ES/WGS and the recent American College of Medical Genetic and Genomics Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing. Of the 847 respondents, 760 completed the survey. The overwhelming majority of respondents thought that incidental ES/WGS results should be offered to adult patients (85%), healthy adults (75%), and the parents of a child with a medical condition (74%). The majority thought that incidental results about adult-onset conditions (62%) and carrier status (62%) should be offered to the parents of a child with a medical condition. About half thought that offered results should not be limited to those deemed clinically actionable. The vast majority (81%) thought that individual preferences should guide return. Genetics professionals' perspectives on the return of ES/WGS results differed substantially from current recommendations, underscoring the need to establish clear purpose for recommendations on the return of incidental ES/WGS results as professional societies grapple with developing and updating recommendations.
| S-EPMC4085580 | biostudies-literature