Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?

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.

Mapping and dynamic monitoring of military training-induced vegetation cover loss using Sentinel-2 images and method comparison.

Sustainable management of the US Army installations is critical for military training and readiness of forces. However, monitoring military training-induced vegetation cover disturbances using remote sensing data is challenging due to the lack of methodology for optimizing the selection of spectral variables or predictors and spatial modeling methods. This study aimed to propose and demonstrate a methodological solution for this purpose. The study was conducted in the Fort Riley installation in which three training areas were selected to map and monitor the training-induced vegetation cover loss. Sentinel-2 images and field observations of percentage vegetation cover (PVC) were combined at a spatial resolution of 10 m by 10 m to map PVC and its dynamics by comparison of two predictor selection methods and five spatial modeling algorithms based on a total of 304 spectral variables from the images before and after the training. Results showed that overall, the correlation-based predictor selection method reduced the relative root mean square error (RRMSE) of PVC predictions by 4.44% than the random forest (RF)-based predictor selection. Machine learning methods including RF, neural network, and support vector machine overall reduced the RRMSE of PVC predictions by 42.83% compared with multiple linear regression and k-nearest neighbors. Combining correlation-based predictor selection and RF modeling, coupled with leave one out cross validation, provided the greatest potential of increasing the accuracy of monitoring the vegetation cover loss. The findings provided useful implications to develop a near real-time system of monitoring military training-induced vegetation cover loss.

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries.

PURPOSE: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. METHODS: We analyzed 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, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. RESULTS: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. CONCLUSION: There is substantial international variation in the extent to which the RoR may motivate people's intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants' preferences for return of genomic results globally should be considered.

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

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.

Regulating the advertising of genetic tests in Europe: a balancing act.

Direct-to-consumer (DTC) genetic tests (GT) have provoked criticism over their potential adverse impact on public health. The European Parliament called for a ban on DTC advertising of GT during the debate for the adoption of a European Regulation on in vitro diagnostic medical devices. This proposal, however, was not ultimately retained in the final text. Instead, the regulation includes an article prohibiting misleading claims for this kind of advertising. These two different approaches raise questions about the optimal degree of regulation. Herein, we provide an overview of the ways GT have been advertised and related ethical issues. Subsequently, the laws regulating the advertising of GT at the European Union and national level are examined. Finally, recent regulatory developments are discussed.

Content Analysis of Informed Consent for Whole Genome Sequencing Offered by Direct-to-Consumer Genetic Testing Companies.

Whole exome sequencing (WES) and whole genome sequencing (WGS) have become increasingly available in the research and clinical settings and are now also being offered by direct-to-consumer (DTC) genetic testing (GT) companies. This offer can be perceived as amplifying the already identified concerns regarding adequacy of informed consent (IC) for both WES/WGS and the DTC GT context. We performed a qualitative content analysis of Websites of four companies offering WES/WGS DTC regarding the following elements of IC: pre-test counseling, benefits and risks, and incidental findings (IFs). The analysis revealed concerns, including the potential lack of pre-test counseling in three of the companies studied, missing relevant information in the risks and benefits sections, and potentially misleading information for consumers. Regarding IFs, only one company, which provides opportunistic screening, provides basic information about their management. In conclusion, some of the information (and related practices) present on the companies' Web pages salient to the consent process are not adequate in reference to recommendations for IC for WGS or WES in the clinical context. Requisite resources should be allocated to ensure that commercial companies are offering high-throughput sequencing under responsible conditions, including an adequate consent process.

Spatial and temporal assessment of cumulative disturbance impacts due to military training, burning, haying, and their interactions on land condition of Fort Riley.

The effects of military training activities on the land condition of Army installations vary spatially and temporally. Training activities observably degrade land condition while also increasing biodiversity and stabilizing ecosystems. Moreover, other anthropogenic activities regularly occur on military lands such as prescribed burns and agricultural haying-adding to the dynamics of land condition. Thus, spatially and temporally assessing the impacts of military training, prescribed burning, agricultural haying, and their interactions is critical to the management of military lands. In this study, the spatial distributions and patterns of military training-induced disturbance frequency were derived using plot observation and point observation-based method, at Fort Riley, Kansas from 1989 to 2001. Moreover, spatial and variance analysis of cumulative impacts due to military training, burning, haying, and their interactions on the land condition of Fort Riley were conducted. The results showed that: (1) low disturbance intensity dominated the majority of the study area with exception of concentrated training within centralized areas; (2) high and low values of disturbance frequency were spatially clustered and had spatial patterns that differed significantly from a random distribution; and (3) interactions between prescribed burning and agricultural haying were not significant in terms of either soil erosion or disturbance intensity although their means and variances differed significantly between the burned and non-burned areas and between the hayed and non-hayed areas.