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- Bina, Pavel, et al.
(författare)
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Awareness, views and experiences of Citizen Science among Swedish researchers — two surveys
- 2021
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Ingår i: JCOM - Journal of Science Communication. - : Sissa Medialab Srl. - 1824-2049. ; 20:06
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Tidskriftsartikel (refereegranskat)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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- Hagen, Niclas, et al.
(författare)
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Genetics and democracy-what is the issue?
- 2012
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Ingår i: Journal of Community Genetics. - : Springer Science and Business Media LLC. - 1868-6001 .- 1868-310X.
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Tidskriftsartikel (refereegranskat)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
(författare)
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I gränslandet mellan genotyp och fenotyp : motsägelser i samband med prediktiv genetisk testning
- 2011
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Ingår i: Socialmedicinsk tidskrift. - 0037-833X. ; 88:3, s. 266-272
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Tidskriftsartikel (refereegranskat)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
(författare)
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Modern Genes : Body, Rationality and Ambivalence
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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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- Hagen, Niclas
(författare)
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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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Ingår i: 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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Tidskriftsartikel (refereegranskat)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
(författare)
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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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Ingår i: 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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Tidskriftsartikel (refereegranskat)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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