scholarly journals Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia

2019 ◽  
Vol 138 (11-12) ◽  
pp. 1237-1246 ◽  
Author(s):  
Richard Milne ◽  
◽  
Katherine I. Morley ◽  
Heidi Howard ◽  
Emilia Niemiec ◽  
...  
Keyword(s):  
Data Sharing ◽  
General Public ◽  
Personal Experience ◽  
Online Survey ◽  
Latent Class ◽  
Public Attitudes ◽  
Genomic Medicine ◽  
Genomic Data ◽  
Cross Sectional ◽  
The Usa

Abstract Trust may be important in shaping public attitudes to genetics and intentions to participate in genomics research and big data initiatives. As such, we examined trust in data sharing among the general public. A cross-sectional online survey collected responses from representative publics in the USA, Canada, UK and Australia (n = 8967). Participants were most likely to trust their medical doctor and less likely to trust other entities named. Company researchers were least likely to be trusted. Low, Variable and High Trust classes were defined using latent class analysis. Members of the High Trust class were more likely to be under 50 years, male, with children, hold religious beliefs, have personal experience of genetics and be from the USA. They were most likely to be willing to donate their genomic and health data for clinical and research uses. The Low Trust class were less reassured than other respondents by laws preventing exploitation of donated information. Variation in trust, its relation to areas of concern about the use of genomic data and potential of legislation are considered. These findings have relevance for efforts to expand genomic medicine and data sharing beyond those with personal experience of genetics or research participants.

scholarly journals Identifying Aspects of Public Attitudes Toward Whole Genome Sequencing to Inform the Integration of Genomics into Care

2021 ◽  
pp. 1-12
Author(s):  
Holly Etchegary ◽  
Daryl Pullman ◽  
Charlene Simmonds ◽  
Zoha Rabie ◽  
Proton Rahman
Keyword(s):  
Whole Genome Sequencing ◽  
Genome Sequencing ◽  
Online Survey ◽  
Public Attitudes ◽  
Genetic Counselor ◽  
Genomic Medicine ◽  
Genomic Data ◽  
Whole Genome ◽  
The Public ◽  
Genomic Test

<b><i>Introduction:</i></b> The growth of global sequencing initiatives and commercial genomic test offerings suggests the public will increasingly be confronted with decisions about sequencing. Understanding public attitudes can assist efforts to integrate sequencing into care and inform the development of public education and outreach strategies. <b><i>Methods:</i></b> A 48-item online survey was advertised on Facebook in Eastern Canada and hosted on SurveyMonkey in late 2018. The survey measured public interest in whole genome sequencing and attitudes toward various aspects of sequencing using vignettes, scaled, and open-ended items. <b><i>Results:</i></b> While interest in sequencing was high, critical attitudes were observed. In particular, items measuring features of patient control and choice regarding genomic data were strongly endorsed by respondents. Majority wanted to specify upfront how their data could be used, retain the ability to withdraw their sample at a later date, sign a written consent form, and speak to a genetic counselor prior to sequencing. Concerns about privacy and unauthorized access to data were frequently observed. Education level was the sociodemographic variable most often related to attitude statements such that those with higher levels of education generally displayed more critical attitudes. <b><i>Conclusions:</i></b> Attitudes identified here could be used to inform the development of implementation strategies for genomic medicine. Findings suggest health systems must address patient concerns about privacy, consent practices, and the strong desire to control what happens to their genomic data through public outreach and education. Specific oversight procedures and policies that are clearly communicated to the public will be required.

scholarly journals A Cross-National Study of Dementia Stigma Among the General Public in Israel and Australia

2021 ◽  
pp. 1-8
Author(s):  
Perla Werner ◽  
Sarang Kim
Keyword(s):  
General Public ◽  
Cultural Context ◽  
Online Survey ◽  
Cross Sectional Study ◽  
National Study ◽  
Cross Sectional ◽  
Subjective Knowledge ◽  
Cultural Aspects ◽  
The Impact ◽  
Cross National

Background: Despite the increasing amount of research on dementia stigma, there is a dearth of cross-national studies conducted on this subject. This is surprising since the experience of stigma is closely associated to socio-cultural aspects. Objective: The present study intended to expand knowledge about the impact of culture on dementia stigma by comparing the level and correlates of stigmatic beliefs about dementia among the general public in Israel and Australia. Methods: A cross-sectional study using an online survey was conducted with two age-matched samples: 447 adults in Israel and 290 adults in Australia. Results: Overall, dementia stigma was moderate in both countries. However, the level of dementia stigma was significantly higher in Australia than in Israel. Lower levels of subjective knowledge and higher levels of ageism were associated with increased levels of stigmatic beliefs in both countries. Gender was a significant correlate of dementia stigma, with male participants reporting higher levels of public stigma than women, although this gender difference was mainly driven by the Australian sample. Conclusion: Our findings indicate that providing knowledge and decreasing ageist attitudes should be key considerations in dementia awareness and stigma reduction campaigns despite the cultural context. In addition, developing gender-specific messages should be considered as a way of improving the effects of such campaigns.

scholarly journals Characteristics associated with changes in food security status among college students during the COVID-19 pandemic

2020 ◽  
Author(s):  
Jessica Soldavini ◽  
Hazael Andrew ◽  
Maureen Berner
Keyword(s):  
College Students ◽  
Food Security ◽  
Food Insecurity ◽  
Online Survey ◽  
Individual Characteristics ◽  
Cross Sectional ◽  
Food Security Status ◽  
The Usa ◽  
Security Module ◽  
Adult Food

Abstract The prevalence of food insecurity in the USA has increased since the start of the COVID-19 pandemic; however, past studies have not examined how the food security status of college students has been impacted. The purpose of this study was to examine changes in the prevalence of food insecurity; determine the proportion of students experiencing a change in food security status; and identify characteristics associated with changes in food security status from before to during the COVID-19 pandemic among a sample of college students. We administered a cross-sectional online survey to students from a large public university in the Southeastern USA. The 10-item U.S. Adult Food Security Module was used to assess food security status during the spring 2020 semester both before and during the COVID-19 pandemic, and students self-reported a variety of individual characteristics. The overall prevalence of food insecurity increased by approximately one-third during the spring 2020 semester from before to during the COVID-19 pandemic. When examining the types of changes in food security status experienced by students, 12% improved, 68% stayed the same, and 20% worsened. A variety of characteristics were associated with an improvement or worsening of food security status category from before to during the pandemic. Similar to what is seen in other reports, we found that the overall proportion of college students in our sample experiencing food insecurity increased during the COVID-19 pandemic; however, some students showed improvements in food security status. Approaches for addressing food insecurity during and beyond the pandemic are needed.

scholarly journals Is the public supportive and willing to pay for a national assistive reproductive therapies programme? Results from a multicountry survey

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044986
Author(s):  
Chris Skedgel ◽  
Eleanor Ralphs ◽  
Elaine Finn ◽  
Jennifer A Whitty ◽  
Marie Markert ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Online Survey ◽  
Medical Condition ◽  
Public Attitudes ◽  
Fertility Treatment ◽  
Secondary Outcome ◽  
Secondary Outcome Measure ◽  
Additional Contribution ◽  
The Public ◽  
The Usa

ObjectivesTo understand attitudes towards infertility and willingness to pay (WTP) towards a publicly funded national assistive reproductive therapies (ART) programme.DesignAttitudes survey with dichotomous and open-ended WTP questions.SettingOnline survey administered in the USA, UK, Spain, Norway, Sweden, Finland, Denmark and China.Participants7945 respondents, analysed by country. Nordic respondents were pooled into a regionally representative sample.Primary and secondary outcome measuresPrimary outcome measures were proportion of sample agreeing with different infertility-related and ART-related value statements and supporting a monthly contribution to fund a national ART programme, expressed in local currency. Secondary outcome measure was maximum WTP.ResultsAcross the nationally representative samples, 75.5% of all respondents agreed with infertility as a medical condition and 82.3% and 83.7% with ART eligibility for anyone who has difficulty having a baby or a medical problem preventing them from having a baby, respectively. 56.4% of respondents supported a defined monthly contribution and 73.9% supported at least some additional contribution to fund a national ART programme. Overall, converting to euros, median maximum WTP was €3.00 and mean was €15.47 (95% CI 14.23 to 16.72) per month. Maximum WTP was highest in China and the USA and lowest in the European samples.ConclusionsThis large, multicountry survey extends our understanding of public attitudes towards infertility and fertility treatment beyond Europe. It finds evidence that a majority of the public in all sampled countries/regions views infertility as a treatable medical condition and supports the idea that all infertile individuals should have access to treatments that improve the chance of conception. There was also strong agreement with the idea that the desire for children is a basic human need. WTP questions showed that a majority of respondents supported a monthly contribution to fund a national ART programme, although there is some evidence of an acquiescence bias that may overstate support among specific samples.

scholarly journals Information Overload, Wellbeing and COVID-19: A Survey in China

2021 ◽  
Vol 11 (5) ◽  
pp. 62
Author(s):  
Jialin Fan ◽  
Andrew P Smith
Keyword(s):  
General Public ◽  
Online Survey ◽  
Information Overload ◽  
Age Distribution ◽  
General Information ◽  
Anxiety And Depression ◽  
Specific Information ◽  
Cross Sectional ◽  
Wide Range ◽  
Negative Coping

(1) Psychology must play an important role in the prevention and management of the COVID-19 pandemic. The aim of the present study was to examine associations between the perceptions of information overload and wellbeing in China during the initial phase of COVID-19. (2) Methods: The present research involved a cross-sectional online survey, which controlled for established predictors of wellbeing and the perception of general (not COVID-19-specific) information overload. The setting of the research was China, February 2020. A total of 1349 participants completed an online survey, and the results from 1240 members of the general public who stated that they were uninfected are reported here (55.6% female; 49.4% single; age distribution: 17–25 years: 26%; 26–30 years: 24.3%; 31–40 years: 23.9%; 41–50 years: 16.2%; 51 years+: 9.6%; the most frequent occupations were: 21.5% students; 19.5% teachers; 25.9% office workers; 10.8% managers, plus a few in a wide range of jobs). The outcomes were positive wellbeing (positive affect and life satisfaction) and negative wellbeing (stress, negative affect, anxiety and depression). (3) Results: Regressions were carried out, controlling for established predictors of wellbeing (psychological capital, general information overload, positive and negative coping). Spending time getting information about COVID-19 was associated with more positive wellbeing. In contrast, perceptions of COVID-19 information overload and feeling panic due to COVID-19 were associated with more negative wellbeing. (4) Conclusions: These results have implications for the communication of information about COVID-19 to the general public and form the basis for further research on the topic.

scholarly journals Psychosocial and health behavioural impacts of COVID-19 pandemic on adults in the USA: protocol for a longitudinal cohort study

BMJ Open ◽  
2020 ◽  
Vol 10 (12) ◽  
pp. e044642
Author(s):  
Hoda Badr ◽  
Abiodun Oluyomi ◽  
Maral Adel Fahmideh ◽  
Syed Ahsan Raza ◽  
Xiaotao Zhang ◽  
...  
Keyword(s):  
Cohort Study ◽  
Online Survey ◽  
Assessment Tools ◽  
Alternative Methods ◽  
Longitudinal Cohort Study ◽  
Unhealthy Lifestyle ◽  
Cross Sectional ◽  
Longitudinal Cohort ◽  
Modifiable Factors ◽  
The Usa

IntroductionAlthough social distancing may help contain the spread of COVID-19, the social isolation and loneliness it causes can heighten stress, contribute to unhealthy lifestyle behaviours and have deleterious effects on social relationships. This ongoing longitudinal cohort study aims to (1) characterise the psychological, social and health behavioural impacts of the COVID-19 pandemic over a 12-month period in the USA; (2) determine whether these impacts differ for certain subgroups based on sociodemographics and other individual-level factors; and (3) explore whether there are modifiable factors (eg, coping, social support) that moderate the effects of the pandemic over time.Methods and analysisAdults (aged ≥18 years) who were fluent in either English or Spanish were recruited via social media and invited to complete an online survey during the 8-week period from 13 April to 8 June 2020 (baseline). Follow-up surveys will be conducted 6 and 12 months after baseline. Data transformations, non-parametric tests or other alternative methods will be used when appropriate. Descriptive statistics and cross-sectional analyses will be performed. Longitudinal associations will be analysed using multilevel modelling with time-variant and time-invariant predictors of change in trajectory over the study period.Ethics and disseminationResearch ethics approval was received from the Baylor College of Medicine Institutional Review Board (H-47505). Overall, this study will provide timely information that can be used to inform public health messaging strategies and guide development of assessment tools and interventions to support vulnerable individuals dealing with the long-term impacts of the COVID-19 pandemic.

scholarly journals The Public Attitudes, Concerns and Behaviors towards Children Vaccination

2021 ◽  
pp. 39-43
Author(s):  
Nehad J. Ahmed ◽  
Abdulrahman S. Alrawili ◽  
Faisal Z. Alkhawaja
Keyword(s):  
Online Survey ◽  
Public Attitudes ◽  
Active Role ◽  
Arabic Language ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
The Public ◽  
And Behavior ◽  
Attitudes And Behavior ◽  
Public Concerns

Aim: The aim of this study was to identify the public concerns, attitudes and behavior towards vaccination. Methodology: This was a cross-sectional study that included an online survey about the public concerns, attitudes and behavior towards vaccination in Saudi Arabia. The survey was translated to Arabic language and converted to an online form using google forms and after that it was sent to be filled by the parents. Results: About 92% of the respondents said that children should be vaccinated in order to protect them and about 86% of them believed that vaccinations are safe for children in general. Regarding the concerns about vaccination, about 69% of the respondents were concerned about the distress to children of the injection itself and 59% of them were concerned about the increasing number of vaccines recommended for children. Furthermore, about 62% of the respondents were concerned that vaccines are not tested enough for safety. Conclusion: The majority of respondents in this study reported positive attitude but more than half of them expressed some degree of concern regarding children vaccination. Healthcare professionals should play an active role in clarifying these concerns about vaccination with the public. Moreover, they should communicate with parents regarding the vaccinations and provide them with a trusted information about the vaccine.

scholarly journals Low parental awareness about energy (calorie) recommendations for children’s restaurant meals: findings from a national survey in the USA

2017 ◽  
Vol 20 (11) ◽  
pp. 1921-1927 ◽  
Author(s):  
Vanessa M Lynskey ◽  
Stephanie Anzman-Frasca ◽  
Linda Harelick ◽  
Ariella Korn ◽  
Shanti Sharma ◽  
...  
Keyword(s):  
Parent Education ◽  
Online Survey ◽  
Sociodemographic Characteristics ◽  
Sampling Weights ◽  
Cross Sectional ◽  
Parental Awareness ◽  
Labelling Information ◽  
The Usa ◽  
Logistic Regressions ◽  
Restaurant Meals

AbstractObjectiveTo assess parental awareness of per-meal energy (calorie) recommendations for children’s restaurant meals and to explore whether calorie awareness was associated with parental sociodemographic characteristics and frequency of eating restaurant food.DesignCross-sectional online survey administered in July 2014. Parents estimated calories (i.e. kilocalories; 1 kcal=4·184 kJ) recommended for a child’s lunch/dinner restaurant meal (range: 0–2000 kcal). Responses were categorized as ‘underestimate’ (<400 kcal), ‘accurate’ (400–600 kcal) and ‘overestimate’ (>600 kcal). Confidence in response was measured on a 4-point scale from ‘very unsure’ to ‘very sure’. Logistic regressions estimated the odds of an ‘accurate’ response and confident response (‘somewhat’ or ‘very sure’) by parental sociodemographic characteristics and frequency of eating from restaurants. Sampling weights based on demographics were incorporated in all analyses.SettingUSA.SubjectsParents (n 1207) of 5–12-year-old children.ResultsOn average, parents estimated 631 (se 19·4) kcal as the appropriate amount for a 5–12-year-old child’s meal. Thirty-five per cent answered in the accurate range, while 33·3 and 31·8 % underestimated and overestimated, respectively. Frequent dining at restaurants, lower income and urban geography were associated with lower odds of answering accurately. Parents’ confidence in their estimates was low across the sample (26·0 % confident) and only 10·1 % were both accurate and confident.ConclusionsParent education about calorie recommendations for children could improve understanding and use of menu labelling information in restaurants. Targeted strategies are recommended to ensure that such efforts address, rather than exacerbate, health disparities.

scholarly journals Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

2019 ◽  
Vol 28 (4) ◽  
pp. 424-434 ◽  
Author(s):  
Anna Middleton ◽  
◽  
Richard Milne ◽  
Heidi Howard ◽  
Emilia Niemiec ◽  
...  
Keyword(s):  
Personal Experience ◽  
Medical Information ◽  
Personal Data ◽  
Genomic Data ◽  
Future Research ◽  
Clinical Value ◽  
The Public ◽  
The Usa ◽  
The Uk ◽  
Scientific Value

AbstractPublic acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation of DNA and health data. Fifty-two percent of this public held ‘exceptionalist’ views about genetics (i.e., believed DNA is different or ‘special’ compared to other types of medical information). This group was more likely to be familiar with or have had personal experience with genomics and to perceive DNA information as having personal as well as clinical and scientific value. Those with personal experience with genetics and genetic exceptionalist views were nearly six times more likely to be willing to donate their anonymous DNA and medical information for research than other respondents. Perceived harms from re-identification did not appear to dissuade publics from being willing to participate in research. The interplay between exceptionalist views about genetics and the personal, scientific and clinical value attributed to data would be a valuable focus for future research.

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