| 1. |
- Bina, Pavel, et al.
(author)
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Awareness, views and experiences of Citizen Science among Swedish researchers — two surveys
- 2021
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In: JCOM - Journal of Science Communication. - : Sissa Medialab Srl. - 1824-2049. ; 20:06
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Journal article (peer-reviewed)abstract
- In 2021 Sweden’s first national portal for citizen science will be launched to help researchers practice sustainable and responsible citizen science with different societal stakeholders. This paper present findings from two surveys on attitudes and experiences of citizen science among researchers at Swedish universities. Both surveys provided input to the development of the national portal, for which researchers are a key stakeholder group. The first survey (n=636) was exclusively focused on citizen science and involved researchers and other personnel at Swedish University of Agricultural Science (SLU). 63% of respondents at SLU had heard about citizen science (CS) prior to the survey; however a majority of these (61%) had not been involved in any CS initiative themselves. Dominant reasons for researchers choosing a CS approach in projects were to enable collection of large amounts of data (68%), improving the knowledge base (59%), improving data quality (25%), promote participants’ understanding in research (21%) and promote collaboration between the university and society (20%). The other survey (n=3 699) was on the broader topic of communication and open science, including questions on CS, and was distributed to researchers from all Swedish universities. 61% of respondents had not been engaged in any research projects where volunteers were involved in the process. A minority of the researchers had participated in projects were volunteers had collected data (18%), been involved in internal or external communication (16%), contributed project ideas (14%) and/or formulated research questions (11%). Nearly four out of ten respondents (37%) had heard about CS prior to the survey. The researchers were more positive towards having parts of the research process open to citizen observation, rather than open to citizen influence/participation. Our results show that CS is a far from well-known concept among Swedish researchers. And while those who have heard about CS are generally positive towards it, researchers overall are hesitant to invite citizens to take part in the research process.
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| 2. |
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| 3. |
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| 4. |
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| 5. |
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| 6. |
- Hagen, Niclas, et al.
(author)
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Genetics and democracy-what is the issue?
- 2012
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In: Journal of Community Genetics. - : Springer Science and Business Media LLC. - 1868-6001 .- 1868-310X.
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Journal article (peer-reviewed)abstract
- Current developments in genetics and genomics entail a number of changes and challenges for society as new knowledge and technology become common in the clinical setting and in society at large. The relationship between genetics and ethics has been much discussed during the last decade, while the relationship between genetics and the political arena-with terms such as rights, distribution, expertise, participation and democracy-has been less considered. The purpose of this article is to demonstrate the connection between genetics and democracy. In order to do this, we delineate a notion of democracy that incorporates process as well as substance values. On the basis of this notion of democracy and on claims of democratisation in the science and technology literature, we argue for the importance of considering genetic issues in a democratic manner. Having established this connection between genetics and democracy, we discuss this relation in three different contexts where the relationship between genetics and democracy becomes truly salient: the role of expertise, science and public participation, and individual responsibility and distributive justice. As developments within genetics and genomics advance with great speed, the importance and use of genetic knowledge within society can be expected to grow. However, this expanding societal importance of genetics might ultimately involve, interact with, or even confront important aspects within democratic rule and democratic decision-making. Moreover, we argue that the societal importance of genetic development makes it crucial to consider not only decision-making processes, but also the policy outcomes of these processes. This argument supports our process and substance notion of democracy, which implies that public participation, as a process value, must be complemented with a focus on the effects of policy decisions on democratic values such as distributive justice.
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| 7. |
- Hagen, Niclas
(author)
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I gränslandet mellan genotyp och fenotyp : motsägelser i samband med prediktiv genetisk testning
- 2011
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In: Socialmedicinsk tidskrift. - 0037-833X. ; 88:3, s. 266-272
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Journal article (peer-reviewed)abstract
- Utvecklingen inom genetiken har möjliggjort att prediktiva genetiska tester kan utföras för ett antal mer eller mindre svåra sjukdomstillstånd. Det innebär att individer kan få reda på att de är bärare av ett sjukdomsanlag innan detta anlag ger upphov till konkreta och klara symptom. I spåren av dessa test uppstår ett gränsland mellan vad de genetiska testresultaten visar och uppkomsten av tydliga symptom. I artikeln analyseras detta motsägelsefulla och spänningsfyllda gränsland med avseende på frågan om friskt och sjukt utifrån de genetiska begreppen genotyp och fenotyp.
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| 8. |
- Hagen, Niclas
(author)
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Modern Genes : Body, Rationality and Ambivalence
- 2013
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Doctoral thesis (other academic/artistic)abstract
- The main objective of this ethnological thesis is to investigate the linkage between everyday life with a genetic disease and intrinsic patterns of modernity. The thesis is a compilation thesis that contains four individual articles each addressing the everyday experience of a genetic disease from different angles, with different research questions and theoretical presumptions. Each of the four articles has performed ethnographic investigations, mainly through semi-structured interviews, with individuals who in various ways are affected by Huntington’s disease, which is a genetic brain disease. The four individual articles show that the experiences of the affected individuals that were captured in the interviews were not the only representations of Huntington’s disease. Instead, these experiences were challenged by representations offered by genetic science, which provided representations of our body that depart from the way we ordinarily experience and perceive our bodies in daily life. They were also the legal representations used by the welfare system in order to evaluate the everyday situation of the participants when they applied for assistance from the welfare system. The presence of these two institutions, science and the welfare society, led to the notion of modernity, since these two institutions can be characterized as systems through their use of instrumental rationality for achieving their objectives. This divergence between the lifeworld of the affected individuals and the representations brought forward by the system gave rise to ambivalences that offered forms of cultural and social change. These forms of cultural and social change were seen in conjunction to so-called “Third spaces” which can be characterized as a site where the sharp distinction between lifeworld and system becomes less sharp and less dichotomous and where new forms of engagements can be established as a consequence of the sort of empowerment and negotiations take place. These “Third spaces” will then be important sites in which the implications of the scientific development within genetics and the biomedical sciences take shape in society. By investigating the link between everyday experiences with general cultural patterns of modernity, the thesis does then provide a deeper knowledge upon the interactions between genetic science, culture and society.
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| 9. |
- Hagen, Niclas
(author)
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Scaling up and rolling out through the Web The “platformization” of citizen science and scientific citizenship
- 2020
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In: Nordic Journal of Science and Technology Studies. - : Norwegian University of Science and Technology (NTNU) Library. - 1894-4647. ; 8:1, s. 4-15
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Journal article (peer-reviewed)abstract
- The purpose of this paper is to investigate online public participation and engagement in science through crowdsourcing platforms. In order to fulfil this purpose, this paper will use the crowdsourcing platform Zooniverse as a case study, as it constitutes the most prominent and established citizen science platform today. The point of departure for the analysis is that Zooniverse can be seen as a “platformization” of citizen science and scientific citizenship. The paper suggests that the mobilisation of individuals who participate and engage in science on the Zooniverse platform takes place through an epistemic culture that emphasises both authenticity and prospects of novel discoveries. Yet, in the process of turning “raw” data into useable data, Zooniverse has implemented a framework that structures the crowd, something that limits the sort of participation that is offered on the platform. This limitation means that the platform as a whole hardly be seen as fostering a more radical democratic inclusion, for example in the form of a co-production of scientific knowledge, that dissolves the institutional borders between scientists and non-professional volunteers.
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| 10. |
- Hagen, Niclas
(author)
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The lived experience of Huntington’s disease: A phenomenological perspective on genes, the body and the lived experience of a genetic disease
- 2018
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In: Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine. - : SAGE Publications. - 1363-4593 .- 1461-7196. ; 22:1, s. 72-86
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Journal article (peer-reviewed)abstract
- The purpose of this article is to explore the intersections between genes, the body and the lived experience of a genetic disease. This article is based on empirical material from a study on how individuals affected by Huntington’s disease experience their everyday life. This study identified two themes that represent and capture the experience of the affected individuals. The themes are (1) noticing symptoms in everyday life and (2) neither health nor disease. The analysis of the empirical material was performed by employing a theoretical framework based on phenomenology. The findings of this study showed that the lived experiences among individuals affected by Huntington’s disease were both fluid and dynamic in their nature. Furthermore, the analysis of the empirical material suggests that this fluid and dynamic character can be linked to a dimension that revolves around the intersections between genetics and the body. Following phenomenologist Drew Leder’s outline of the divergence between the invisible and the visible features of the body, the analysis of the empirical material suggests that the mutated gene that causes Huntington’s disease can be seen as a phenomenological nullpoint. It is important that the healthcare system acknowledges and addresses the lived experiences that are discussed in this article, particularly, as the use of genetics and genetic testing becomes more widespread usage within medicine.
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| 11. |
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| 12. |
- Hedlund, Maria, et al.
(author)
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Editorial: Genetics and Democracy
- 2012
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In: Journal of Community Genetics. - : Springer Science and Business Media LLC. - 1868-6001 .- 1868-310X. ; 3:2, s. 57-59
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Journal article (peer-reviewed)
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| 13. |
- Isenberg, Bo, et al.
(author)
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The Manifestation of Modernity in Genetic Science
- 2011
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In: Culture and Biology. Perspectives on the European Modern Age. - 382604553X ; , s. 43-56
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Book chapter (peer-reviewed)abstract
- In this chapter we discuss genetic science as a manifestation of modernity. Accordingly, we will, firstly, discuss the notion of modernity. Modernity will be understood and presented as epoch, as cultural and mental disposition. We will deploy a conceptual constellation which denotes specific and typical, constituting and regulating elements of modernity. Secondly, we will turn to the early developments of heredity and to genetics as science and as practice with regard to key elements of modernity as disposition, and with regard to their significance for images of what man would be, could be, should be. We conclude the chapter with some reflections on the relation between contemporary modern institutions and dispositions, and the swiftly emerging new insights and practices of genetics. Genetics represents an emergence through which modernity modernises itself.
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| 14. |
- Jönsson, Mari, et al.
(author)
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Inequality persists in a large citizen science programme despite increased participation through ICT innovations
- 2024
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In: Ambio: A Journal of Environment and Society. - 0044-7447 .- 1654-7209. ; 53:1, s. 126-137
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Journal article (peer-reviewed)abstract
- Biological recording is a prominent and widely practised form of citizen science, but few studies explore long-term demographic trends in participation and knowledge production. We studied long-term demographic trends of age and gender of participants reporting to a large online citizen science multi-taxon biodiversity platform (www.artportalen.se). Adoption by user communities and continually developing Information and Communications Technologies (ICTs) greatly increased the number of par- ticipants reporting data, but profound long-term imbalances in gender contribution across species groups persisted over time. Reporters identifying as male dominated in numbers, spent more days in the field reporting and reported more species on each field day. Moreover, an age imbalance towards older participants amplified over time. As the first long-term study of citizen participation by age and gender, our results show that it is important for citizen science project developers to account for cultural and social developments that might exclude participants, and to engage with under- represented and younger participants. This could facilitate the breadth of engagement and learning across a larger societal landscape, ensure project longevity and biodiversity data representation (e.g. mitigate gender bias influence on the number of reports of different species groups).
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| 15. |
- Kasperowski, Dick, 1959, et al.
(author)
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Certainty in locality: citizen science, observation and agency
- 2020
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In: Society for Social Studies of Science (4S), 2020, Prague, August 18 - 21, 2020 : Locating and Timing Matters: Significance and agency of STS in emerging worlds.
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Conference paper (peer-reviewed)abstract
- This presentation reports on the significance and agency of Swedish citizen in the of production of data in environmental advisory processes. The production and use of data by public authorities at the regional level is important part in decision and knowledge making in Sweden on climate, biological change and degradation. Observations and classifications are predominately done by citizens and reported to the Swedish Species Observation System (SSOS), hosted by The Swedish Agricultural University one of the largest platforms in the world for citizen science, serving public authorities in carrying out policies developed by The Swedish Environmental Protection Agency and by the Environmental Courts. Turning an observation into a scientific fact is usually described in STS as relying on chains of references, usually with a professional scientist at the beginning. Throughout the process of observing, measuring and sampling, locality and particularity is lost through shifting materialities and continuity. Gaining compatibility, standardization, text, calculation, circulation, and relative universality. Results in this study to what makes quality in an observation in the case of SSOS, is better described as a distribution of references, largely consisting of non-professional scientists working to attain certainty in locality. Thus, an observation must be attached to a specific locality to gain credibility and be circulated. This network is activated not by a scientific issue, but by a need to create references to the law governing the use of land. Creating certainty in locality, references are built through entities like trustworthy individuals, biotopes, red listing, maps, time, photos and coordinates.
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| 16. |
- Kasperowski, Dick, 1959, et al.
(author)
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Coming Apart at the Environmental Court: Associating and Disassociating Citizen Observations with Legal Obligations
- 2023
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In: Sea, Sky, Land, Endangered Ecologies, Solidarities. Society for the Social Study of Science, 4S 2023, Honolulu, November 8-11, 2023.
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Conference paper (other academic/artistic)abstract
- This study takes an interest in what characterizes citizen observations in cases that reach legal institutions concerning environmental regulation. Explicating judicial controversies over biodiversity citizen observations from two open report infrastructures important for public decision-making on environmental regulation, the presentation asks what makes citizen observations fail to produce obligations, and why within the legal reasoning of an environmental regulation system. The research reported relies on conceptual resources developed in legal anthropology and Actor Network Theory. Observations are found to change as they are associated and disassociated with certain temporal and spatial qualities of biodiversity, including species behaviour. Understanding the multitudes of how citizen observations in environmental regulation are made, is important as community and minority citizen science, in response to political possibilities, perceived as marked either by lack of responsiveness, unwillingness, or inability to tackle pressing environmental challenges seek other means of influence and representation. In this context, legal courts have become an alternative for advancing political decisions on pressing environmental concerns. Examples are drawn from cases presented before the Higher Environmental Court in Sweden.
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| 17. |
- Kasperowski, Dick, 1959, et al.
(author)
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Ethical boundary work in citizen science: Themes of insufficiency
- 2022
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In: Nordic Journal of Science and Technology Studies. - : Norwegian University of Science and Technology (NTNU) Library. - 1894-4647. ; 10:1, s. 13-24
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Journal article (peer-reviewed)abstract
- The concept of boundary work (Gieryn 1983, 1999) has been developed to capture the ways in which scientists collectively defend and demarcate their intellectual territories. This article applies the concept of boundary work to the ethical realm and investigates the ethical boundary work performed by researchers in the field of citizen science (CS) through a literature review and by analysing accounts of ethics presented in CS literature. Results show that ethical boundary work in the CS literature is, to a large extent, a matter of managing ambiguities and paradoxes without any clear boundaries drawn between the unethical and ethical. Scientists are negotiating ethical positions, which might, occasionally, enhance the ethical authority of ‘non-science’ and non-scientists, as well as maintain already established research ethics. The main ethical boundary work in CS displays variations towards perceived insufficiencies of conventional research ethics to accommodate “outsiders”, addressing issues of distribution, relevance, and expulsion as science include volunteer contributors in the scientific process.
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| 18. |
- Kasperowski, Dick, 1959, et al.
(author)
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Joining Reference and Representation —Citizen Science as Resistance Practice
- 2015
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In: Society for Social Studies of Science 2015 Annual Meeting November 11-14 Denver, Colorado.
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Conference paper (other academic/artistic)abstract
- During the past two decades there has been an increased interest in citizen science. Citizens contribute to science in observing, classifying and collecting data. Several largescale scientific projects have successfully enrolled citizens in the research process (see, galaxyzoo.org; ebird.org). But, citizens are also regarded as deliberative stakeholders in the space between science and society. By participating in the democratic process, this version of a citizen scientist is able to speak for the local community, which is affected by the scientific society. These two types of citizen science seem to be incommensurable. Observing, classifying and collecting scientific facts is usually regarded as a domain that needs to be isolated from any other in society. When science is influenced by politics it looses its objectivity. Similarly, deliberative politics is often thought of as the complete opposite of scientific reasoning. However, there is a third type of citizen science that manages to both become producers of scientific facts and of deliberative politics. Such citizen science projects can, in some cases, be seen as challenging science and producing modified forms of science. Two such examples are the Louisiana Bucket Brigade (labucketbrigade.org), and International Rivers (internationalrivers.org). The purpose of this open panel is to bring forward further examples, both current and historical. What are the consequences of using standardized scientific methods to pursue political goals? Does it imply the end of politics or the end of science? Or is it a form of engagement that contributes to informed politics and more (locally) relevant science? Using the notion of a “crossing” between a political mode of existence, which constantly seeks representation, and a scientific mode of existence that struggles to create reference to the world, this open panel elaborates on how this crossing is traversed, negotiated, denied and defended in citizen science as resistance.
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| 19. |
- Kasperowski, Dick, 1959, et al.
(author)
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Making particularity travel: Trust and citizen science data in Swedish environmental governance.
- 2022
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In: Social Studies of Science. - : SAGE Publications. - 0306-3127 .- 1460-3659. ; 52:3, s. 447-462
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Journal article (peer-reviewed)abstract
- This paper focuses on how particularities are performed and made to travel through the creation of trust. The Swedish Species Observation System (Artportalen) is one of the largest inscription and calculation centers for citizen data in the world, used extensively by public authorities in Sweden. Observations by members of the public become actionable through environmental governance laws in Sweden. These observations are made through networks of things and humans in which trust is created but unevenly distributed. Important for them to be trusted and to travel are such things as computer software to filter and map observations, red lists, GIS-tools to determine time and place, and validation committees. However, trust is more concentrated in a core set of actors, and there depends on interpersonal relations – though these relations are facilitated by other parts of the epistemic system.
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| 20. |
- Kasperowski, Dick, 1959, et al.
(author)
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Medborgarforskningen former: Perception, epistemisk representation och hybriditet
- 2019
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In: Vetenskapligt medborgarskap / Linda Soneryd, Göran Sundqvist (red.).. - Lund : Studentlitteratur. - 9789144117249 ; , s. 169-194
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Book chapter (peer-reviewed)abstract
- Dagens kunskapssamhälle präglas av en dubbelhet. Mer specialiserad kunskap skapar skillnader mellan experter och icke-experter. Den ökade specialiseringen har uppmärksammats som ett demokratiproblem, med risk för expertstyre och teknokrati. Samtidigt är allt fler medborgare högutbildade och dagens digitaliserade samhälle gör det lättare för fler att delta i både kunskapsproduktion och spridning av kunskap. Vetenskapligt medborgarskap bygger på pågående forskning och illustrerar med hjälp av empiriska fall vilken roll medborgare får i relation till expertkunskaper som ofta är vetenskapligt grundade. Medborgare kan förväntas vara passiva, de kan vara föremål för utbildningsinsatser, bjudas in som medaktörer i kunskapsproduktion, eller bidra med alternativa kunskaper och relevanta kritiska röster.
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| 21. |
- Kasperowski, Dick, 1959, et al.
(author)
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The wickedness of citizen science, law and planetary health: grappling with trust, democracy and representation
- 2022
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In: European Citizen Science Association Conference Science for Planetary Health Proceedings, October 5-8, 2022, Berlin.
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Conference paper (other academic/artistic)abstract
- The health of our planet is at risk and so are we. This is widely recognized as a highly urgent matter. National and international policy and go- vernance bodies expect that citizen science can help address this urgency, e.g. through large scale environmental observations to monitor the SDGs or creating positive societal effects such as enhancing trust in science. For ci- tizen science to have a significant role in attaining planetary health an im- portant aspect is often forgotten: the roles of citizen science within the legal context. Legal adaptation to the development of manifold citizen science(s) is too slow, hampering the roles of citizen science for planetary health. In- dividuals and communities now take action towards planetary health on matters such as biodiversity protection and climate change, expressing a discontent with political responses, perceived as lacking responsiveness, unwillingness, or inability to tackle environmental challenges. For such communities, the legal system becomes an alternative route for advancing decisions on environmental concerns. When citizen observations are taken to court this can produce legal but also societal effects as rulings may trigger legal and regulatory interventions. Democratically elected policy-makers may have to ‘succumb’ to the scrutiny of judges and this has clear implica- tions for democracy and for traditional allocation of institutional powers. We will tackle these and other “wicked” issues in our interactive panel, star- ting from the following questions: Taking citizens to court might affect citi- zens’ trust in public authorities and politicians. Even official science might not go unscathed. Is this an acceptable route towards societal changes if we wish to achieve a healthier planet? What are the implications for demo- cracy of bringing citizen science in courts? Can we accept this as an ’unde- mocratic’ move yet needed for conserving biodiversity and halting climate change? Citizen science projects display that the majority of participants are highly educated, upper-middle class, middle-aged or older, and white. Gender composition often shows a strong bias of participants identifying as male. What does this imply for using courtrooms in representing larger public interests? Does it risk reinforcing societal polarisation and biases not only in science but also in judicial decisions? What are the implications for democracy and appointed institutions when concerned people turn to pro- ducing environmental information themselves ‘bypassing’ set procedures (of reporting/participating), invoking overarching legal frameworks such as international conventions? Is this a way to improve the system by conte- sting and opening up institutional informational monopolies?
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| 23. |
- Petersen, Marsanna, et al.
(author)
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Clinical experiments for Huntington's disease : Recommendations to medical researchers regarding how to inform potential participants
- 2016
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Other publication (other academic/artistic)abstract
- Huntington's disease (HD) is a severe, genetic brain disorder that causes great suffering and leads to an early death. The medical research team in the project Treatments of the Future at Lund University aims to develop a new molecular gene therapeutic method that will give the possibility to cure the disease. The authors’, social- and cultural scientists, mission is to develop recommendations for how information should be designed to potential research subjects in an experimental gene therapy study regarding HD. More specifically, to find and recommend a model that makes it possible for individuals who are affected by HD to decide if they want to participate as research subjects in the clinical trials within Treatments of the Future.
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| 24. |
- Ponti, Marisa, et al.
(author)
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Designing Futures for Learning in the Crowd: New Challenges and Opportunities for CSCL : Workshop organized at the CSCL 2015, the 11th International Conference on Computer Supported Collaborative Learning
- 2015
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In: Lindwall, O., Häkkinen, P., Koschman, T. Tchounikine, P. & Ludvigsen, S. (Eds.) (2015). Exploring the Material Conditions of Learning: The Computer Supported Collaborative Learning (CSCL) Conference. - 1573-4552. ; Vol. 2, s. 885-888
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Conference paper (other academic/artistic)
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| 25. |
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