As new media proliferate and the public's trust and engagement in science are influenced by industry involvement in academic research, an interdisciplinary workshop provides some recommendations to enhance science communication.

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BackgroundTo assess the Knowledge, Attitudes and Practice (KAP) amongst the general community regarding type 2 diabetes mellitus (DM) in rural Bangladesh.MethodsData was collected using cluster random sampling from 3104 adults residing in a rural district in Bangladesh. Participants underwent a KAP questionnaire survey regarding assessing diabetes, socio-demographic and medical history. Descriptive, Chi-square and regression analyses were performed.ResultsParticipants were aged between 30 and 89 years (M  = 51, SD  = 11.8) and 65.5% were female. The prevalence of diabetes was found to be 8.3%. The majority (93%) reported to have heard of diabetes, yet only 4% knew what a glucose tolerance test was. Only 50% reported that they knew physical inactivity was a risk factor. Age, gender, level of education and socio-economic status (SES) were significantly associated with KAP. A lower proportion (41%) of older participants (aged ≥65 years) reported that they knew that dietary modifications assist in diabetes control compared to those aged less than 35 years (69%), p<0.001. Males (β  = 0.393, 95% CI = 0.142–0.643), and any level of education compared to no schooling (β  = 0.726, 95% CI = 0.596, 0.857) reported significantly more knowledge, after multivariate adjustments for covariates. Participants aged under 35 years, (odds ratio (OR)  = 1.73, 95% CI  = 1.22–2.43) had significantly higher positive attitudes towards treatments of diabetes compared to those aged ≥65 years. Of the 99 people with known diabetes, more than 50% (n = 52) never had their blood sugar levels checked since diagnosis.ConclusionsKnowledge of diabetes and its risk factors is very limited in rural Bangladesh, even in persons diagnosed with type 2 DM. The development of public health programmes to increase knowledge of diabetes and its complications is required to assist people living in rural Bangladesh to control and management of diabetes.

This research examined why the public may be less supportive of stem cell research when conducted in a private compared to public research context. A representative sample (n = 403) of Australians who were exposed to information relating to privately funded scientists were significantly less likely to approve of stem cell research than those who were presented with a scenario of scientists working within a publicly funded University (n = 401) and a control condition (n = 404). Mediation analyses revealed that the decrease in approval was primarily associated with the tendency of privately funded scientists to be trusted less than their publicly funded counterparts. Public trust in University scientists was also found to be higher than that of private scientists because publicly funded scientists were perceived to be motivated more by benevolence, and more likely to produce benefits that will be accessible to the public. While private scientists were perceived to be more self interested than public scientists, perceived self interest did not explain the decrease in trust. There were also no significant differences across research contexts for the perceived competence of scientists or the likelihood that stem cell research would result in cures for diseases. The implications of these results are discussed in relation to the possible decrease in public trust that may occur alongside the increasing privatization of academic enquiry, and particularly controversial scientific research.

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.Electronic supplementary materialThe online version of this article (10.1007/s00439-019-02062-0) contains supplementary material, which is available to authorized users.

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.

Objectives: The necessity for biobanks to share their resources with third parties poses potential risks to public trust and the intention to participate in genetic research. We explore the effects of data sharing and the type of third-party access (public vs. private) on public trust and, in turn, the intention to participate in biobank research. Methods: An experimental design was used to assess a national sample of 1,701 Australians via a computer-assisted telephone interview. Results: The results revealed that trust and the intention to participate significantly decreased in relation to private compared to public biobanks, and when access to third-party researchers was allowed compared to when it was not. Somewhat surprisingly, no differences were found in relation to the third party being international compared to Australian, but trust and the intention to participate were significantly eroded when private third parties were allowed access. Those with a university education were particularly distrustful of private biobanks and biobanks that allowed access, while those who were more aware of genetic databases appeared more confident with biobanks sharing with private-sector third parties. Conclusion: The pattern of results suggests that public awareness of the need for biobanks to share their resources widely needs to be increased to maintain public trust and support.

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