2024-03-28T13:07:03Z
https://zenodo.org/oai2d
oai:zenodo.org:3944466
2021-02-11T15:55:30Z
user-datastudies
openaire_data
user-eu
Tempini, Niccolò
2020-07-14
<p>This is a set of interview transcripts executed by Niccolò Tempini between May 2016 and July 2017, as part of the ERC project "The Epistemology of Data-Intensive Science", and in the context of a case study of COSMIC. Please read the "Notes on transcript editing" document for further information.</p>
<p>Papers that specifically make use of these interviews and have been published as of February 2021:</p>
<ul>
<li>
<p>Tempini, N., 2020. Data curation-research: practices of data standardization and exploration in a precision medicine database. New Genetics and Society. <a href="https://doi.org/10.1080/14636778.2020.1853513">https://doi.org/10.1080/14636778.2020.1853513</a></p>
</li>
<li>
<p>Tempini, N., Leonelli, S., 2021. Actionable Data for Precision Oncology: Framing Trustworthy Evidence for Exploratory Research and Clinical Diagnostics. Social Science & Medicine. <a href="https://doi.org/10.1016/j.socscimed.2021.113760">https://doi.org/10.1016/j.socscimed.2021.113760</a></p>
</li>
</ul>
<p>The transcripts document COSMIC researchers' experience of infrastructure development and data curation and re-use practices. Researchers have consented to have these transcripts made available as Open Data. Other interviewees did not give consent, so those transcripts are held securely by the research team in Exeter.<br>
You also find the information sheet provided to interviewees, which gives you the context for this project. Further information and related publications can be found at www.datastudies.eu.</p>
https://doi.org/10.5281/zenodo.3944466
oai:zenodo.org:3944466
Zenodo
https://doi.org/10.1080/14636778.2020.1853513
https://doi.org/10.1016/j.socscimed.2021.113760
https://zenodo.org/communities/datastudies
https://zenodo.org/communities/eu
https://doi.org/10.5281/zenodo.3944465
info:eu-repo/semantics/openAccess
Creative Commons Attribution 4.0 International
https://creativecommons.org/licenses/by/4.0/legalcode
[DATA_SCIENCE] Interviews: The Catalogue of Somatic Mutations in Cancer (COSMIC)
info:eu-repo/semantics/other
oai:zenodo.org:1422487
2020-01-24T19:24:26Z
user-datastudies
openaire_data
user-eu
Halfmann, Gregor
2018-09-20
<p>This is a collection of transcripts from interviews conducted by Gregor Halfmann as part of the ERC project "The Epistemology of Data-intensive Science". The interviews served as the empirical basis for Halfmann's PhD thesis "Seafarers, Silk, and Science: Oceanographic Data in the Making", submitted at the University of Exeter in July 2018. The interviews relate to the research practices, in particular the production and processing of research samples and scientific data, by marine ecologists and biological oceanographers working at the Marine Biological Association of the UK and for the Continuous Plankton Recorder Survey. Researchers have consented to have these transcripts made available as Open Data.</p>
https://doi.org/10.5281/zenodo.1422487
oai:zenodo.org:1422487
eng
Zenodo
https://zenodo.org/communities/datastudies
https://zenodo.org/communities/eu
https://doi.org/10.5281/zenodo.1422486
info:eu-repo/semantics/openAccess
Creative Commons Attribution 4.0 International
https://creativecommons.org/licenses/by/4.0/legalcode
scientific data
data production
sampling
philosophy
science and technology studies
oceanography
marine ecology
plankton
[DATA_SCIENCE] Interviews Oceanography, March 2015 - May 2017
info:eu-repo/semantics/other
oai:zenodo.org:7324079
2022-11-16T02:26:30Z
user-datastudies
Tempini, Niccolò
2022-11-15
<p><strong>Headline points</strong></p>
<p>· The spectrum of self-reporting is extremely diverse and impossible to govern through a one size fits all approach; projects can be scientific or not, can raise important privacy concerns, and can be open to organised manipulation and poor governance of risks and harms; best practices and guidelines must be adapted to the local setting and remain open for improvement</p>
<p>· People take part in data collection for the most heterogeneous of purposes. Closely controlling hopes, aims and beliefs of participants is beyond the reach of any sensible self-reporting exercise; this heterogeneity introduces various biases in the data, and adds unpredictability to the data collection project</p>
<p>· Governance of self-report data collection is a thorny issue; new data governance approaches have been put forth to deal with the heterogeneity of ends that big data collection projects now need to be able to support, that require some experimentation, but the best chance of long-term sustainable governance comes from collective governance frameworks</p>
<p>· Greatest scientific potential of self-reporting is through data linkage with other forms of heterogeneous data, however these forms of data linkage are also the source of the highest risks for privacy and individual harms; flexible and sustained ethical oversight is key</p>
<p>· Participation in self-reporting is not equally distributed across society; when there are benefits associated in participation, it can exacerbate existing inequalities</p>
https://doi.org/10.5281/zenodo.7324079
oai:zenodo.org:7324079
Zenodo
https://doi.org/10.5281/zenodo.7324049
https://zenodo.org/communities/datastudies
https://doi.org/10.5281/zenodo.7324078
info:eu-repo/semantics/openAccess
Creative Commons Attribution 4.0 International
https://creativecommons.org/licenses/by/4.0/legalcode
data studies
self-reporting
self-report
data ethics
pandemic ethics
rapid ethics review
The ethics of data self-reporting: a review of important issues and best practices – Part II: best practice innovations
info:eu-repo/semantics/report
oai:zenodo.org:1184631
2020-01-24T19:24:50Z
user-datastudies
openaire_data
Bezuidenhout, Louise
Rappert, Brian
Leonelli, Sabina
Kelly, Ann H.
2016-04-27
<p>The primary data collection element of this project related to observational based fieldwork at four universities in Kenya and South Africa undertaken by Louise Bezuidenhout (hereafter ‘LB’) as the award researcher. The award team selected fieldsites through a series of strategic decisions. First, it was decided that all fieldsites would be in Africa, as this continent is largely missing from discussions about Open Science. Second, two countries were selected – one in southern (South Africa) and one in eastern Africa (Kenya) – based on the existence of the robust national research programs in these countries compared to elsewhere on the continent. As country background, Kenya has 22 public universities, many of whom conduct research. It also has a robust history of international research collaboration – a prime example being the long-standing KEMRI-Wellcome Trust partnership. While the government encourages research, financial support for it remains limited and the focus of national universities is primarily on undergraduate teaching. South Africa has 25 public universities, all of whom conduct research. As a country, South Africa has a long history of academic research, one which continues to be actively supported by the government. </p>
<p>Third, in order to speak to conditions of research in Africa, we sought examples of vibrant, “homegrown” research. While some of the researchers at the sites visited collaborated with others in Europe and North America, by design none of the fieldsites were formally affiliated to large internationally funded research consortia or networks. Fourth, within these two countries four departments or research groups in academic institutions were selected for inclusion based on their common discipline (chemistry/biochemistry) and research interests (medicinal chemistry). These decisions were to ensure that the differences in data sharing practices and perceptions between disciplines noted in previous studies would be minimized. </p>
<p>Within Kenya, site 1 (KY1) and Site 2 (KY2) were both chemistry departments of well-established universities. Both departments had over 15 full time faculty members, however faculty to student ratios were high and the teaching loads considerable. KY1 had a large number of MSc and PhD candidates, the majority of whom were full-time and a number of whom had financial assistance. In contrast, KY2 had a very high number of MSc students, the majority of whom were self-funded and part-time (and thus conducted their laboratory work during holidays). In both departments space in laboratories was at a premium and students shared space and equipment. Neither department had any postdoctoral researchers. </p>
<p>Within South Africa, site 1 (SA1) was a research group within the large chemistry department of a well-established and comparatively well-resourced university with a tradition of research. Site 2 (SA2) was the chemistry/biochemistry department of a university that had previously been designated a university for marginalized population groups under the Apartheid system. Both sites were the recipients of numerous national and international grants. SA2 had one postdoctoral researcher at the time, while SA1 had none.</p>
<p>Empirical data was gathered using a combination of qualitative methods including embedded laboratory observations and semi-structured interviews. Each site visit took between three and six weeks, during which time LB participated in departmental activities, interviewed faculty and postgraduate students, and observed social and physical working environments in the departments and laboratories. Data collection was undertaken over a period of five months between November 2014 and March 2015, with 56 semi-structured interviews in total conducted with faculty and graduate students. Follow-on visits to each site were made in late 2015 by LB and Brian Rappert to solicit feedback on our analysis. </p>
Research funded by the Leverhulme Trust (UK)
https://doi.org/10.6084/m9.figshare.3203809.v1
oai:zenodo.org:1184631
Zenodo
https://zenodo.org/communities/datastudies
info:eu-repo/semantics/openAccess
Creative Commons Attribution 4.0 International
https://creativecommons.org/licenses/by/4.0/legalcode
Data sharing
African research
data resourcing
research environment
Beyond the Digital Divide: Sharing Research Data across Developing and Developed Countries
info:eu-repo/semantics/other
oai:zenodo.org:2394574
2020-07-14T11:02:35Z
user-datastudies
openaire_data
user-eu
Tempini, Niccolò
2018-12-18
<p>This is a set of interview transcripts executed by Niccolò Tempini between March and October 2016, as part of the ERC project "The Epistemology of Data-Intensive Science", and in the context of a case study of MEDMI. Please read the "Notes on transcript editing" document for further information.</p>
<p>Three papers or chapters that specifically make use of these interviews have been published as of 2020:</p>
<ul>
<li>Tempini, N., Leonelli, S., 2018. Concealment and discovery: The role of information security in biomedical data re-use. Soc Stud Sci 48, 663–690. <a href="https://doi.org/10.1177/0306312718804875">https://doi.org/10.1177/0306312718804875</a></li>
<li>Leonelli, S., Tempini, N., 2018. Where health and environment meet: the use of invariant parameters in big data analysis. Synthese 1–20. <a href="https://doi.org/10.1007/s11229-018-1844-2">https://doi.org/10.1007/s11229-018-1844-2</a></li>
<li>Tempini, N. 2020. The Reuse of Digital Computer Data: Transformation, Recombination and Generation of <em>Data Mixes</em> in Big Data Science. In: Leonelli S., Tempini N. (eds) Data Journeys in the Sciences. Springer, Cham. <a href="https://doi.org/10.1007/978-3-030-37177-7_13">https://doi.org/10.1007/978-3-030-37177-7_13</a></li>
</ul>
<p>The transcripts document MEDMI researchers' experience of infrastructure development and data curation and re-use practices. Researchers have consented to have these transcripts made available as Open Data. Other interviewees did not give consent, so those transcripts are held securely by the research team in Exeter.<br>
You also find the information sheet provided to interviewees, which gives you the context for this project. Further information and related publications can be found at www.datastudies.eu.</p>
https://doi.org/10.5281/zenodo.2394574
oai:zenodo.org:2394574
Zenodo
https://doi.org/10.1177/0306312718804875
https://doi.org/10.1007/s11229-018-1844-2
https://doi.org/10.1007/978-3-030-37177-7_13
https://zenodo.org/communities/datastudies
https://zenodo.org/communities/eu
https://doi.org/10.5281/zenodo.2394573
info:eu-repo/semantics/openAccess
Creative Commons Attribution 4.0 International
https://creativecommons.org/licenses/by/4.0/legalcode
[DATA_SCIENCE] Interviews: The Medical and Environmental Data Mash-up Infrastructure (MEDMI)
info:eu-repo/semantics/other
oai:zenodo.org:6627015
2022-06-10T13:50:38Z
user-datastudies
Tempini, Niccolò
2022-06-09
<p>We have been two years in the pandemic, and many interesting patterns have emerged that are worth discussing. I can only attempt to touch on a few of them, which are related to the practices and flows of health data. It was interesting to see, as the pandemic ensued, how lots of different kinds of data were mobilised. And lots of different social actors got involved in the use of data, for many different purposes. </p>
<p>Data were put in circulation in ways and speed that were unforeseen, from both public and private sector companies. But data circulate well in some directions, and less so in others. Overwhelmed perusing a constantly moving panoply of numbers, charts and assessments on the state of the pandemic, it is easy to miss out that some data are not flowing well at all, and that others should perhaps stay where they are. </p>
https://doi.org/10.5281/zenodo.6627015
oai:zenodo.org:6627015
Zenodo
https://zenodo.org/communities/datastudies
https://doi.org/10.5281/zenodo.6627014
info:eu-repo/semantics/openAccess
Creative Commons Attribution 4.0 International
https://creativecommons.org/licenses/by/4.0/legalcode
Tecnoscienza, 13(1), (2022-06-09)
Pandemic Data Circulation (Crossing Boundaries)
info:eu-repo/semantics/article
oai:zenodo.org:2485137
2020-01-24T19:25:02Z
user-datastudies
openaire_data
user-eu
Leonelli, Sabina
2018-12-21
<p>Here are two transcripts from a set of interviews executed by Sabina Leonelli in the fall of 2015 as part of the ERC project "The Epistemology of Data-Intensive Science", and in the context of a case study of phenotyping practices at the National Plant Phenomics Centre in Aberystwyth and collaborators. The transcripts document researchers' experience of data curation practices. Researchers have consented to have these transcripts made available as Open Data. Other interviewees did not give consent or ended up providing sensitive information in their interviews, so those transcripts cannot be made open and are held securely by the research team in Exeter. You also find the information sheet provided to interviewees, which gives you the context for this project. Further information can be found at <a href="http://www.datastudies.eu">www.datastudies.eu</a>. The transcripts have been redacted to exclude names of people who have not given consent to participate in the study, but have otherwise been left unedited and therefore contain several colloquial expressions. A paper by Sabina Leonelli which specifically makes use of these interviews will be published in 2019 in the European Journal for Philosophy of Science, under the title “What Distinguishes Data from Models?”. Freely accessible preprint here: <a href="http://philsci-archive.pitt.edu/id/eprint/15485">http://philsci-archive.pitt.edu/id/eprint/15485</a> . Several related publications can be found in Open Access formats on the project website: <a href="http://www.datastudies.eu">www.datastudies.eu</a>.</p>
https://doi.org/10.5281/zenodo.2485137
oai:zenodo.org:2485137
Zenodo
http://philsci-archive.pitt.edu/id/eprint/15485
https://zenodo.org/communities/datastudies
https://zenodo.org/communities/eu
https://doi.org/10.5281/zenodo.2485136
info:eu-repo/semantics/openAccess
Creative Commons Attribution 4.0 International
https://creativecommons.org/licenses/by/4.0/legalcode
[DATA_SCIENCE] Interviews Plant Phenomics, 2015
info:eu-repo/semantics/other
oai:zenodo.org:7324049
2022-11-16T02:26:36Z
user-datastudies
Tempini, Niccolò
2022-11-15
<p><strong>Headline points</strong></p>
<p>· The spectrum of self-reporting is extremely diverse and impossible to govern through a one size fits all approach; projects can be scientific or not, can raise important privacy concerns, and can be open to organised manipulation and poor governance of risks and harms; best practices and guidelines must be adapted to the local setting and remain open for improvement</p>
<p>· People take part in data collection for the most heterogeneous of purposes. Closely controlling hopes, aims and beliefs of participants is beyond the reach of any sensible self-reporting exercise; this heterogeneity introduces various biases in the data, and adds unpredictability to the data collection project</p>
<p>· Governance of self-report data collection is a thorny issue; new data governance approaches have been put forth to deal with the heterogeneity of ends that big data collection projects now need to be able to support, that require some experimentation, but the best chance of long-term sustainable governance comes from collective governance frameworks</p>
<p>· Greatest scientific potential of self-reporting is through data linkage with other forms of heterogeneous data, however these forms of data linkage are also the source of the highest risks for privacy and individual harms; flexible and sustained ethical oversight is key</p>
<p>· Participation in self-reporting is not equally distributed across society; when there are benefits associated in participation, it can exacerbate existing inequalities</p>
https://doi.org/10.5281/zenodo.7324049
oai:zenodo.org:7324049
Zenodo
https://doi.org/10.5281/zenodo.7324079
https://zenodo.org/communities/datastudies
https://doi.org/10.5281/zenodo.7324048
info:eu-repo/semantics/openAccess
Creative Commons Attribution 4.0 International
https://creativecommons.org/licenses/by/4.0/legalcode
data studies
self-reporting
self-report
data ethics
pandemic ethics
rapid ethics review
The ethics of data self-reporting: a review of important issues and best practices – Part I: ethical issues
info:eu-repo/semantics/report
oai:zenodo.org:2536448
2020-07-14T11:03:15Z
user-datastudies
openaire_data
user-eu
Tempini, Niccolò
2019-01-09
<p>This is a set of interview transcripts executed by Niccolò Tempini between September 2015 and October 2016, as part of the ERC project "The Epistemology of Data-Intensive Science", and in the context of a case study of SAIL. Please read the "Notes on transcript editing" document for further information.</p>
<p>Two papers that specifically make use of these interviews have been published as of 2018:</p>
<ul>
<li>Tempini, N., Leonelli, S., 2018. Concealment and discovery: The role of information security in biomedical data re-use. Soc Stud Sci 48, 663–690. <a href="https://doi.org/10.1177/0306312718804875">https://doi.org/10.1177/0306312718804875</a></li>
<li>Tempini, N., 2016. Science Through the “Golden Security Triangle”: Information Security and Data Journeys in Data-intensive Biomedicine, in: Proceedings of the 37th International Conference on Information Systems (ICIS 2016). <a href="https://aisel.aisnet.org/icis2016/ISHealthcare/Presentations/20/">https://aisel.aisnet.org/icis2016/ISHealthcare/Presentations/20/</a></li>
</ul>
<p>The transcripts document SAIL researchers' experience of infrastructure development and data curation and re-use practices. Researchers have consented to have these transcripts made available as Open Data. Other interviewees did not give consent, so those transcripts are held securely by the research team in Exeter.<br>
You also find the information sheet provided to interviewees, which gives you the context for this project. Further information and related publications can be found at www.datastudies.eu.</p>
https://doi.org/10.5281/zenodo.2536448
oai:zenodo.org:2536448
Zenodo
https://doi.org/10.1177/0306312718804875
https://aisel.aisnet.org/icis2016/ISHealthcare/Presentations/20/https://aisel.aisnet.org/icis2016/ISHealthcare/Presentations/20/
https://zenodo.org/communities/datastudies
https://zenodo.org/communities/eu
https://doi.org/10.5281/zenodo.2536447
info:eu-repo/semantics/openAccess
Creative Commons Attribution 4.0 International
https://creativecommons.org/licenses/by/4.0/legalcode
[DATA_SCIENCE] Interviews: The Secure Anonymised Information Linkage Databank (SAIL)
info:eu-repo/semantics/other
oai:zenodo.org:1184625
2020-01-24T19:25:17Z
user-datastudies
openaire_data
user-eu
Leonelli, Sabina
2017-10-10
<p>Here you find the transcripts of interviews collected by Sabina Leonelli as part of the ERC project "The Epistemology of Data-Intensive Science". You also find the information sheet provided to interviewees, which gives you the context for this project. Further information and related publications can be found at www.datastudies.eu. One paper that specifically makes use of these interviews was published by Sabina Leonelli in the journal Philosophy of Science in 2018, under the title "Data in Time: Time-Scales of Data Use in the Life Sciences." The transcripts document yeast researchers' attitudes to data curation and the use of databases in their field. Researchers have consented to have these transcripts made available as Open Data. Other interviewees did not give consent, so those transcripts are held securely by the research team in Exeter.</p>
https://doi.org/10.6084/m9.figshare.5484010.v1
oai:zenodo.org:1184625
Zenodo
https://zenodo.org/communities/datastudies
https://zenodo.org/communities/eu
info:eu-repo/semantics/openAccess
Creative Commons Attribution 4.0 International
https://creativecommons.org/licenses/by/4.0/legalcode
data infrastructures
philosophy
yeast
data use
biology
science and technology studies
[DATA_SCIENCE] Interviews PomBase Users, January-February 2016
info:eu-repo/semantics/other