| 1. |
- Fernow, Josepine
(författare)
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Achieving impact : some arguments for designing a communications strategy
- 2019
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Ingår i: RRI implementation in bioscience organisations. - : Uppsala University. - 9789150628104 - 9789150628111 ; , s. 177-180
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Practicing RRI implies that we make an effort to communicate beyond our peers, opening up research organisations and extending our reach to public policy makers and researchers in other fields. To achieve impact, researchers need to find new ways of interacting with actors outside their own fields. Ideally also doing it well, without wasting time, while maintaining public trust, and without contributing to misconceptions about what science can deliver. This contribution to the STARBIOS2 guideline on RRI implementation in bioscience organisations contextualises the need for communications and dissemination strategy for research projects and provides guidance on how to build a strategy for communication and dissemination.
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| 2. |
- Fernow, Josepine, et al.
(författare)
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Setting future ethical standards for ICT, Big Data, AI and robotics : The contribution of three European projects
- 2019
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Ingår i: ORBIT Journal. - : Elsevier BV. - 2515-8562. ; 2019:1
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Policymakers struggle to assess the ethical, legal and human rights impacts of IT systems in research, industry, and at home. At the same time, research needs to be useful for industry, academia, and society to have impact on policy. Right now, three European projects: PANELFIT, SHERPA and SIENNA, are working together with stakeholders to improve ethical, human rights and legal frameworks for information and communication technologies (ICT), big data analytics, artificial intelligence (AI) and robotics. Stakeholder involvement is key, and the outputs will support the European Union’s vision of Responsible Research and Innovation (RRI), as a means to foster the design of inclusive research and innovation. Here, we provide a short introduction to the projects and outline plans for collaboration with the aim to maximise our joint policy impact.
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| 3. |
- George, Ogoh, et al.
(författare)
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Developing Capabilities for Responsible Research and Innovation (RRI)
- 2023
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Ingår i: Journal of Responsible Technology. - 2666-6596. ; , s. 100065-100065
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Tidskriftsartikel (refereegranskat)abstract
- This paper examines the notion of capability development through the lens of Responsible Research and Innovation (RRI). It describes how RRI capabilities can be promoted and developed through capacity-building activities by drawing on a reflection of the experiences of some members of the Ethics and Society team of the EU-funded Human Brain Project (HBP) who have contributed to the development of an extensive RRI capacity building programme for HBP researchers, EBRAINS research infrastructure developers and users, as well as interested external audiences. It also highlights some of the outcomes of the RRI capacity-building exercise and the challenge of assessing the impact of such activities.
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| 4. |
- Godskesen, Tove, et al.
(författare)
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Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway
- 2018
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 27:6
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Tidskriftsartikel (refereegranskat)abstract
- Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information avail‐able to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the docu‐ments were misleading in part. Furthermore, the descriptions provided almost no in‐formation about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple meas‐ures like readability testing can be useful as an indicator of text quality.
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| 5. |
- Middleton, Anna, et al.
(författare)
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Global Public Perceptions of Genomic Data Sharing : What Shapes the Willingness to Donate DNA and Health Data?
- 2020
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Ingår i: American Journal of Human Genetics. - : Elsevier BV. - 0002-9297 .- 1537-6605. ; 107:4, s. 743-752
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 6. |
- Milne, Richard, et al.
(författare)
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Demonstrating trustworthiness when collecting and sharing genomic data : public views across 22 countries
- 2021
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Ingår i: Genome Medicine. - : Springer Science and Business Media LLC. - 1756-994X. ; 13:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundPublic 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.MethodsWe 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.ResultsProviding 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.ConclusionsOur 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.
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| 7. |
- Milne, Richard, et al.
(författare)
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Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
- 2022
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Ingår i: Genetics in Medicine. - : Elsevier BV. - 1098-3600 .- 1530-0366. ; 24:5, s. 1120-1129
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 8. |
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RRI implementation in bioscience organisations : Guidelines from the STARBIOS2 project
- 2019
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Samlingsverk (redaktörskap) (refereegranskat)abstract
- The Guidelines are a tool to promote, within biosciences research organisations, a structural change (i.e., a durable transformation of a research organisation) that facilitates the practice of Responsible Research and Innovation (RRI). They are one of the outputs of the STARBIOS2 project.The Guidelines arise from the practical experience of implementing Action Plans carried by the research organisations involved in the STARBIOS2 project, from the mutual learning activity among the STARBIOS2 partners, also supported by a study and update of RRI issues.The Guidelines aim to help readers to formalize and trigger structural change aimed at introducing RRI-related practices that are appropriate to their own organisations. The Guidelines are not a series of prescriptions, but an itinerary of reflection and self-interpretation that is addressed to different actors within the Biosciences, such as: researchers, research organisations managers and technical staff members, professionals within research-funding organisations, students and others. Although these Guidelines are not designed for their specific needs, they could be useful to science policymakers as well. In very general terms, the Guidelines’ readers are people who intend to promote RRI or to emphasize responsibility within the research activities in which they are engaged, or who are trying to collect resources for designing and implementing activities with this end.To support this itinerary of reflection and self-interpretation, the document provides:A description of a general RRI Model for research organisations within the biosciences, that is a set of ideas, premises and “principles of action” that define the practice of RRI in Bioscience research organisationsSome practical guidance for designing interventions to promote RRI in research organisations in the Biosciences, putting into practice the RRI ModelA set of useful practices in implementing the structural change process.Information on particular STARBIOS2 cases and experiences, as well as materials, tools and sources, are also provided in the Appendix and in the Annex.
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