210117 SE M11: FOP Citizen Participation in Science and Medicine (engl.) (2014W)
FOP Citizen Participation in Science and Medicine
Prüfungsimmanente Lehrveranstaltung
Labels
Die selbstständige Anmeldung innerhalb der Anmeldephase zu Semesterbeginn ist für die Teilnahme an dieser Lehrveranstaltung verpflichtend!Eine nachträgliche Anmeldung ist NICHT möglich.Anwesenheitspflicht in der ersten LV-Einheit: Studierenden, die der ersten Einheit unentschuldigt fern bleiben, verlieren ihren Platz in der Lehrveranstaltung, und Studierende von der Warteliste können nachrücken.
An/Abmeldung
Hinweis: Ihr Anmeldezeitpunkt innerhalb der Frist hat keine Auswirkungen auf die Platzvergabe (kein "first come, first served").
- Anmeldung von Fr 12.09.2014 08:00 bis Mi 24.09.2014 22:00
- Anmeldung von Fr 26.09.2014 08:00 bis Mi 01.10.2014 22:00
- Abmeldung bis Sa 01.11.2014 00:00
Details
max. 35 Teilnehmer*innen
Sprache: Englisch
Lehrende
Termine
(30 Std direkter Kontakt im Hörsaal, 10 Std direkter Kontakt über e-mail und Skype - Feedback für Forschungspläne etc)
Konferenzraum des Instituts für Politikwissenschaft NIG 2 StockEinheit 1: Donnerstag, 16. Oktober 2014, 9.00-12.00 und 12.30-17.00
Einheit 2: Donnerstag, 6. November 2014: 9.00-12.00 und 12.30-17.00
Einheit 3: Donnerstag, 4. Dezember 2014: 9.00-12.00 und 12.30-17.00
Einheit 4: Donnerstag, 8. Januar 2015: 9.00-12.00 und 12.30-17.00
Information
Ziele, Inhalte und Methode der Lehrveranstaltung
Art der Leistungskontrolle und erlaubte Hilfsmittel
The mark will consist of four elements:
I. 25 % of the mark will consist of active participation in class. Participation in all four sessions is a requirement for passing this course. In exceptional cases (illness and other serious reasons, for which proof will be required) students can miss one session, for which they will have to make up by an additional written assignment. These will be discussed on an individual basis, depending on what session a student has missed, and what kind of assignment would be most beneficial for the progress of their research.
II. 25 % of the mark will be given for the three written assignments (one for Session 2, one for Session 3, one for Session 4). Please note that if students fail to submit one of the papers on time they will receive a total mark of 5 ('Nicht Genügend') for the entire component II.
III. 25% of the mark will be given for the final presentation (Session 4).
IV. 25% of the mark will be given for the written final essay. Depending on the format of students' projects the essay can be between 2,500 and 7,000 words long (excluding references).
I. 25 % of the mark will consist of active participation in class. Participation in all four sessions is a requirement for passing this course. In exceptional cases (illness and other serious reasons, for which proof will be required) students can miss one session, for which they will have to make up by an additional written assignment. These will be discussed on an individual basis, depending on what session a student has missed, and what kind of assignment would be most beneficial for the progress of their research.
II. 25 % of the mark will be given for the three written assignments (one for Session 2, one for Session 3, one for Session 4). Please note that if students fail to submit one of the papers on time they will receive a total mark of 5 ('Nicht Genügend') for the entire component II.
III. 25% of the mark will be given for the final presentation (Session 4).
IV. 25% of the mark will be given for the written final essay. Depending on the format of students' projects the essay can be between 2,500 and 7,000 words long (excluding references).
Mindestanforderungen und Beurteilungsmaßstab
For a long time, science was seen as something that took place in isolation from political influences. Only in the 2nd half of the 20th century have people started to challenge this assumption. Today, science is no longer seen as a neutral tool that produces objective knowledge. Instead, it is considered an activity that is closely connected to social, economical, political, and also religious factors. Neither is scientific knowledge is always 'correct' simply because it carries the label of science; history is full of examples of scientific knowledge that was later dismissed.
If science is not socially and politically neutral, then, it has been argued, it needs to be publicly accountable. Another reason for why science should be accountable to the public is, of course, that it is often funded by public money. But how should such public accountability be organised? Should 'lay' citizens be involved in deciding what science should and should not be allowed to do? Or should such decisions be taken by other professional experts, e.g. politicians, lawyers, ethicists?
Some citizens do not wait to be invited to participate in science, but they do so on their own initiative and on their own terms. Digital technologies have made it easier for people who want to contribute to science, either by running their own studies, or by helping professional scientists with data collection or data analysis, to organise themselves and draw in other participants.
In this course, we will explore the notion of citizen participation in science and medicine in particular. We will look at different types of public participation, ranging from 'citizen conferences' to 'citizen science' projects and science games. Both empirically and conceptually we will explore what these practices of practices of participation do make science more democratic and more innovative, and what they - perhaps counterintuitively - do to conserve and reiterate existing power structures and notions of expertise.
If science is not socially and politically neutral, then, it has been argued, it needs to be publicly accountable. Another reason for why science should be accountable to the public is, of course, that it is often funded by public money. But how should such public accountability be organised? Should 'lay' citizens be involved in deciding what science should and should not be allowed to do? Or should such decisions be taken by other professional experts, e.g. politicians, lawyers, ethicists?
Some citizens do not wait to be invited to participate in science, but they do so on their own initiative and on their own terms. Digital technologies have made it easier for people who want to contribute to science, either by running their own studies, or by helping professional scientists with data collection or data analysis, to organise themselves and draw in other participants.
In this course, we will explore the notion of citizen participation in science and medicine in particular. We will look at different types of public participation, ranging from 'citizen conferences' to 'citizen science' projects and science games. Both empirically and conceptually we will explore what these practices of practices of participation do make science more democratic and more innovative, and what they - perhaps counterintuitively - do to conserve and reiterate existing power structures and notions of expertise.
Prüfungsstoff
This course will start with a lecture-based overview of the history of public participation in science and medicine and an introduction into the current state of the art of the field. After that, students will be asked to choose a research topic for themselves and will be supported in the development of a feasible research question. We will also discuss in class how to carry out a good literature review (Session 1). Between Sessions 1 and 2 students will work on their literature review and on their research aims. These will be presented beginning of Session 2 (i.e. three weeks later), where students will receive extensive feedback both from the course leader and their peers. We will then discuss how to develop a good research methodology. A step-by-step study design will then be the task for students to prepare for Session 3 (four weeks later). Session 3 in turn will be devoted to the refinement of the research plan, so that students are ready to go into the field. Session 4, in early January, will provide students with an opportunity to present their research to the group in the form of a TED-like short talk (ted.com; detailed guidance will be given in class). Students then have until Friday, 30 January 2015 to finalise their research and submit their paper.
Literatur
Students will need to read materials that are required for their individual projects. The following bibliography lists key readings meant to help students to prepare for the course. They are highly recommended, yet not required readings.Bogner, A. (2012). The paradox of participation experiments. Science Technology and Human Values 37, 5, 506-527.
Goetz, T. (2013) How Kaggle is Changing How We Work. The Atlantic (12 April). Available at: http://m.theatlantic.com/technology/archive/2013/04/how-kaggle-is-changing-how-we-work/274908/.
Hafen, E., Kossmann, D., and Brand, A. (2014) Health data cooperatives - citizen empowerment. Methods of Information in Medicine 53(2).
Haig, S. (2007). When the patient is a googler. Time (November 8). Available at: http://www.time.com/time/health/article/0,8599,1681838,00.html
Lunshof, J.E., Church, G.M., and Prainsack, B. (2014). Raw personal data: Providing access. Science 343/6169: 373-374.
Mayer-Schönberger, V. & Cukier, K. (2013). Big Data. London: John Murray Publishers.
Morozov, E. (2011). The Net Delusion: How not to liberate the world. London: Penguin.
Kelty, C., Panofsky, A., Currie, M., Crooks, R., Erickson, S., Garcia, P., Wartenbe, M., and Wood, S. (2014). Seven dimensions of contemporary participation disentangled. Journal of the Association for Information Science and Technology [online first: DOI 10.1002/asi.23202].
McGonigal, J. (2011). Reality is broken: Why games make us better and how they can change the word. New York: Penguin.
Nielsen, M. (2011) Reinventing Discovery: The New Era of Networked Science. Princeton, NJ: Princeton University Press.
Prainsack, B. (2014a) Understanding Participation: The 'citizen science' of genetics. In: Prainsack, B., Werner-Felmayer, G., Schicktanz, S. (eds). Genetics as Social Practice. Farnham: Ashgate. 147-164.
Prainsack, B. (2014b) The Powers of Participatory Medicine. PLoS Biology 12/4: e1001837.
Thorpe, C. (2010). Participation as Post-Fordist Politics: Demos, New Labour, and Science Policy. Minerva 48: 389-411.
Torr-Brown, S. (2013). Crowdsourcing for Science and Medicine: Progress and Challenges. Journal of Oncopathology 1/2: 75-81.
Riesch, H., and Potter, C. (2014). Citizen science as seen by scientists: Methodological, epistemological and ethical dimensions. Public Understanding of Science 23/1: 107-120.
Vayena, E. & Tasioulas, J. (2013). The ethics of participant-led biomedical research. Nature Biotechnology 31: 786-787.
Wicks, P., Vaughan, T.E., Massagli, M.P., and Heywood, J. (2011). Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm, Nature Biotechnology, 29: 411-414.
Goetz, T. (2013) How Kaggle is Changing How We Work. The Atlantic (12 April). Available at: http://m.theatlantic.com/technology/archive/2013/04/how-kaggle-is-changing-how-we-work/274908/.
Hafen, E., Kossmann, D., and Brand, A. (2014) Health data cooperatives - citizen empowerment. Methods of Information in Medicine 53(2).
Haig, S. (2007). When the patient is a googler. Time (November 8). Available at: http://www.time.com/time/health/article/0,8599,1681838,00.html
Lunshof, J.E., Church, G.M., and Prainsack, B. (2014). Raw personal data: Providing access. Science 343/6169: 373-374.
Mayer-Schönberger, V. & Cukier, K. (2013). Big Data. London: John Murray Publishers.
Morozov, E. (2011). The Net Delusion: How not to liberate the world. London: Penguin.
Kelty, C., Panofsky, A., Currie, M., Crooks, R., Erickson, S., Garcia, P., Wartenbe, M., and Wood, S. (2014). Seven dimensions of contemporary participation disentangled. Journal of the Association for Information Science and Technology [online first: DOI 10.1002/asi.23202].
McGonigal, J. (2011). Reality is broken: Why games make us better and how they can change the word. New York: Penguin.
Nielsen, M. (2011) Reinventing Discovery: The New Era of Networked Science. Princeton, NJ: Princeton University Press.
Prainsack, B. (2014a) Understanding Participation: The 'citizen science' of genetics. In: Prainsack, B., Werner-Felmayer, G., Schicktanz, S. (eds). Genetics as Social Practice. Farnham: Ashgate. 147-164.
Prainsack, B. (2014b) The Powers of Participatory Medicine. PLoS Biology 12/4: e1001837.
Thorpe, C. (2010). Participation as Post-Fordist Politics: Demos, New Labour, and Science Policy. Minerva 48: 389-411.
Torr-Brown, S. (2013). Crowdsourcing for Science and Medicine: Progress and Challenges. Journal of Oncopathology 1/2: 75-81.
Riesch, H., and Potter, C. (2014). Citizen science as seen by scientists: Methodological, epistemological and ethical dimensions. Public Understanding of Science 23/1: 107-120.
Vayena, E. & Tasioulas, J. (2013). The ethics of participant-led biomedical research. Nature Biotechnology 31: 786-787.
Wicks, P., Vaughan, T.E., Massagli, M.P., and Heywood, J. (2011). Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm, Nature Biotechnology, 29: 411-414.
Zuordnung im Vorlesungsverzeichnis
Letzte Änderung: Mo 07.09.2020 15:38
09.00-10.30: Introductory lecture I
10.30-11.00: Break (and course administration)
11.00-12.00: Introductory lecture II
12.00-13.00 Lunch break
12.00-13.00: Group work. Task:
- identify a topic for your research
- translate the topic into a research question
13.30-14.30: Feedback on group work
14.30-15.00: Break (and course administration)
15.00-16.00: How to carry out a literature review
16.00-17.00: Explanation and task to prepare for the next session.Task for session 2: Write a 3 page 'Research aims'; outline, explaining
a) what your research question is
b) what the existing literature has to say about this
c) what you will add with your own researchStudents will be asked to e-mail their outlines to the course leader by 1 November 2014, and to give a short presentation in session 2. Students who do not submit their outlines in time will not be able to present in session 2.Session 2: Thursday 6 November 2014: 9.00-12.00 and 12.30-17.00
09.00-10.30: 'Research aims' presentations I (including feedback from course leader and group)
10.30-11.00: Break (and course administration)
11.00-12.00: 'Research aims' presentations II (including feedback from course leader and group)
12.00-13.00 Lunch break
12.00-13.00: Group work. Task:
- Based on the feedback received, help each other to improve your methodologies
- Plan your fieldwork / research
13.30-14.30: Feedback on group work I
14.30-15.00: Break (and course administration)
15.00-17.00: Feedback on group work IITask for session 3: Write a 1-2 page overview of what methodology you will use and why.
Students will be asked to e-mail their outlines to the course leader by 1 December 2014, and to give a short presentation in session 3. Students who do not submit their outline on time will not be able to present in session 3.Session 3: Thursday 4 December 2014: 9.00-12.00 and 12.30-17.00
09.00-10.30: 'Methodology' presentations I (including feedback from course leader and group)
10.30-11.00: Break (and course administration)
11.00-12.00: 'Methodology' presentations II (including feedback from course leader and group)
12.00-13.00 Lunch break
12.00-13.00: Group work. Tasks:
- Refinement of individual step-by-step research plans. What do you need to do to answer your research question?
13.30-14.30: Feedback on group work
14.30-15.00: Break (and course administration)
15.00-17.00: Methods workshop (we will focus on methods chosen by the students)By the end of session 3, students will have a finalised design for their study and are ready to go into the field (or start with their desk-based research). Between sessions 3 and 4 you will be expected to carry out your research. For session 4, you will need to prepare a TED-talk style presentation (http://www.ted.com; further explanations and details will be given in class).
You can always contact the course leader for feedback and help if you get stuck with your research!Session 4: Thursday 8. January 2015: 9.00-12.00 and 12.30-17.00
09.00-10.30: Research presentations I (and feedback)
10.30-11.00: Break (and course administration)
11.00-12.00: Research presentations II (and feedback)
12.00-13.00 Lunch break
12.00-13.00: Research presentation III (and feedback)
13.30-14.30: What have we learned? I Critical reflection on challenges faced in students' research
14.30-15.00: Break
15.00-16.00: What have we learned? II Critical reflection on challenges faced in students' research. In this session we will also elect one winner for (a) the best project and (b) the best presentation
16.00-17.00: Drinks time! We'll celebrate that we survived the seminar.