Summary Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one’s DNA and health data for research is relatively low, and trust in the process of data’s being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our “Your DNA, Your Say” study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.
ObjectivesWe assess the potential benefits of increased physical activity for the global economy for 23 countries and the rest of the world from 2020 to 2050. The main factors taken into account in the economic assessment are excess mortality and lower productivity.MethodsThis study links three methodologies. First, we estimate the association between physical inactivity and workplace productivity using multivariable regression models with proprietary data on 120 143 individuals in the UK and six Asian countries (Australia, Malaysia, Hong Kong, Thailand, Singapore and Sri Lanka). Second, we analyse the association between physical activity and mortality risk through a meta-regression analysis with data from 74 prior studies with global coverage. Finally, the estimated effects are combined in a computable general equilibrium macroeconomic model to project the economic benefits of physical activity over time.ResultsDoing at least 150 min of moderate-intensity physical activity per week, as per lower limit of the range recommended by the 2020 WHO guidelines, would lead to an increase in global gross domestic product (GDP) of 0.15%–0.24% per year by 2050, worth up to US$314–446 billion per year and US$6.0–8.6 trillion cumulatively over the 30-year projection horizon (in 2019 prices). The results vary by country due to differences in baseline levels of physical activity and GDP per capita.ConclusionsIncreasing physical activity in the population would lead to reduction in working-age mortality and morbidity and an increase in productivity, particularly through lower presenteeism, leading to substantial economic gains for the global economy.
Background Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. Methods We analyse the ‘Your DNA, Your Say’ online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle- and high-income countries, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures. Results Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data—endorsed by 5% in India but almost 60% in Japan. A clustering analysis suggests alignment between some countries in the assessment of specific measures, such as the UK and Canada, Spain and Mexico and Portugal and Brazil. China and Russia are less closely aligned with other countries in terms of the value of the measures presented. Conclusions Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally.
second set was obtained using the EQ-5D3L instrument and aimed at assessing patients' QoL. Results: Our results have revealed that the mean total economic burden of PC was 40,609 EGP/patient/annum. The majority of which was categorized under direct medical costs (33,878 EGP) for treatment or follow-up purposes. Indirect costs averaged 4,872 EGP. Direct non-medical costs were no more than 4.5% of the total cost encountered by patients. Regarding patients' QoL, our results have demonstrated that PC patients suffered most from severe pain (39%), and severe disease-related anxiety (31%). The overall QoL as perceived by patients was described as "unsatisfactory" by 25.5%, "moderate" by 45.5%, and only 29% had an overall "good" QoL. Conclusions: Despite of the fact that 91% of our patients were covered by different insurance plans, direct medical costs represented the major economic burden affecting those patients. Hence, expanding coverage to minimize such a financial burden is recommended. Moreover, our results suggest that more aggressive pain management programs, in addition to psychological support might warrant a better QoL for Egyptian patients diagnosed with PC.
This report examines the potential economic benefits of physical activity. Specifically, it looks at the potential gains in economic output and healthcare expenditure savings under different physical activity improvement scenarios at the population level. This study contributes to the existing literature in three ways. First, we synthesise and evaluate, in a systematic manner, the existing empirical evidence on the association between physical activity and mortality risk, using a meta-analytical approach to adjust for study heterogeneity and potential publication bias in the literature. Second, using large-scale, international workplace survey data, we quantify the associations between physical activity and workplace performance, with a specific focus on levels of sickness absence and levels of presenteeism. Finally, we examine the macroeconomic effects of reduced premature mortality and reductions in sickness absence and presenteeism associated with making the population of a country more physically active. The report will be of interest to policymakers in the fields of public health and at the same time to a much broader spectrum of readers, including private sector agents, in particular in the health and life insurance domains. The Vitality Group, part of Discovery Ltd, commissioned RAND Europe to carry out this research project. RAND Europe had full editorial control and independence of the analyses performed and presented in this report. This work informs the public good and should not be taken as a commercial endorsement. RAND Europe is an independent, not-for-profit policy research organisation that aims to improve policy-and decision making in the public interest through research and analysis. This report has been peer-reviewed in accordance with RAND's quality assurance standards. For more information about RAND Europe or this document, please contact Marco Hafner
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