An observational study in Power, sponsored by University of Aberdeen. Completed at 1 site in United Kingdom. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2024-12-24.
Sponsored by University of Aberdeen · Observational
Technology and data can bring opportunities for increased societal benefits for example regarding health, environmental sustainability and energy. There can be clashes between regimes which aim to bring these benefits about, and the outcomes which are dictated if one looks to only laws and regimes with a focus on technology and data, notably information and intellectual property (IP) laws. A recent example of a clash was seen between IP, human rights and health in relation to COVID-19.
This study is part of a project exploring the place and impact of clashes on the operation of regimes and possible new potential forms of governance, structure and regime creation which could be developed. The project will explore the establishment and operation of the Scottish Public Benefit and Privacy Panel for Health and Social Care. It will also explore approaches to data and technology in the UK oil and gas licensing framework; a developing new international regime in relation to marine biodiversity, benefit sharing and technology transfer; and approaches in Scotland and in England to private or public ownership and licensing of soil and environmental data, including those funded by research councils. It may also include the European data strategy and the development of the pan African free trade agreement and its approach to IP. Some of these regimes engage directly with laws relating to data and technology, notably private rights, information control and IP; some do not.
The study will interrogate, through qualitative research with key figures who and are involved, the drivers for structural approaches being taken; levels of engagement in creating and operating new regimes with regime and laws focussed on data and technology; and the possible impact of data and technology regimes on the new regimes' wider goals.
The project explores the different frameworks, and the possible consequences of limited engagement with data and technology, for delivery of the ultimate societal goals. Proposals are then developed for more holistic and pluralist engagement when new regimes, in their different forms, are created.
This project will make an important contribution to scholarship regarding legal policy making, governance, regulation, legal theory, pluralism, private and public intersections and "wicked problems". The findings of this project will be of value to scholars, policy makers and activists in developing a more open and informed approach to choices which could be made, means by which they could be delivered, and to reaching more effective solutions to address societal challenges through a lens - direct or indirect - of data and technology.
The project's principal objective is to develop new theoretical approaches and practical paths which could be applied, at national and international level, substantively and structurally, to creating and operating regimes which address key societal challenges using data and technology.
The project's proposals will enable decision makers - irrespective of subject matter or starting point - to take a wide view of relevance, to engage widely with stakeholders and experts and to see nothing as unchallengeable or as the responsibility of another regime. The project will also explore the extent to which a hierarchy or overarching common goals could be created, such as stewardship and respect for the commons (or indeed private property), within which governance of data, technology and also ultimate societal goals could and should be delivered.
Much of the project is based on theory and desk based reviews of scholarship and of publicly available sources. It will consider legislation, treaties, case law, policy and activist work and governance and regulatory frameworks. It will engage with ongoing developments in judicial innovation, interpretation of legislation and application of regulatory approaches, notably regarding precaution and certainty. It will draw on the intersection between law, philosophy and science and the extent to which different approaches could and should be taken to rawer information and that which has been the subject of processing and refinement.
Complementing this, the study will carry out semi-structured qualitative interviews with research participants.
Interviews will be carried out online via TEAMS, and the interviews will be recorded using an encrypted dictaphone and then transcribed by the researcher. Before the transcribing is carried it, each participant will be accorded a legend (eg participant 1) and the transcript will be prepared on this basis. The transcripts will be provided to the interviewees via TEAMS in private subchannels for confirmation of accuracy before the data analysis stage commences.
Research participants will be individuals involved in creating and operating the regimes which are used as case studies. Abbe Brown anticipates interviewing each research participant once, although she will indicate that if future issues arise she may ask to speak to them again if they would be willing to do so, for clarification purposes.
Then, the data analysis phase will involve key word analysis of the transcripts based on questions asked, issues explored in the book, and from points arising in interview, in a grounded theory approach.
University of Aberdeen is the lead sponsor of 175 studies on the registry; 23 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Group 1 - People involved in creation and operation of Scottish panel to grant access to data for re-use in health and social care research (Public Benefit and Privacy Panel for Health and Social Care of NHS Scotland).
Group 2 - People involved in creation and operation of approaches to data and technology in a UK framework based on the grant of an oil and gas licence.
Group 3 - People involved in developing new international regime in relation to marine biodiversity, benefit sharing and technology transfer.
Group 4 - People involved in creation and operation of different approaches in Scotland and in England to private or public ownership and licensing of soil and environmental data, including those funded by a research council.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Qualitative semi-structured interviews to explore approaches taken to regimes, including one case study group regarding the Public Benefit and Privacy Panel in Scotland. No use of drugs and no personal health related interventions. Same approaches taken to 3 other case study groups which do not involve health.
Other: New proposal for regime creation
Interviews and building of proposals in the light of the information obtained and desk based research
New approaches to regime creation
Interviews carried out, transcribed and shared with individual participants. Thereafter, by researcher, analysed, and considered although theoretical research. Proposals developed for more holistic and pluralist engagement and book written
Time frame: 2 years 6 months project as whole. Interview phase as a whole, 4 months, each interview 1 hour, possible follow up.
Plan to share: No
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This study is completed, as verified in Dec 2024. You cannot join it, but the record below documents what was studied.
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