DRAG*N
Data Ethics and Governance
Webinar Series
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This webinar series aims at bringing together international experts from two research strands: Data Ethics and Data Governance. Every fortnight, two speakers will deliver brief presentations followed by a Q/A session with the virtual audience. We will alternate sessions focusing on the ethical aspects of data access and use, and session on the governance of data. Everyone is welcome!
Sign up here to receive further info an updates11 May 2022 | 5pm (UCT +0) | Please register HERE
Sphere transgressions: risks and benefits of the digitisation of health The digitalization of health and medicine has engendered a proliferation of new collaborations between public health institutions and data corporations, such as Google, Apple, Microsoft and Amazon. Critical perspectives on this “Googlization of health” tend to frame the risks involved in this phenomenon in one of two ways: either as predominantly privacy and data protection risks, or as predominantly commodification of data risks. In this short talk, Prof. Tamar Sharon (Radboud University) will discuss the limitations of each of these framings and advance a novel conceptual framework for studying the Googlization of health beyond (just) privacy and (just) market transgressions. The framework draws on Michael Walzer’s theory of justice and Boltanski and Thévenot’s orders of worth to advance a “normative pragmatics of justice” that is better equipped to identify and address the challenges of the Googlization of health and possibly of the digitalization of society more generally. Prof. Angela Daly will then address socio-legal issues pertaining to healthcare data, drawing on political economy perspectives to consider the risks and benefits of healthcare data use, taking as an example her current collaborative research as part of the UKRI DARE GRAIMatter project on AI model export from Safe Havens and Trusted Research Environments (TREs). Tamar Sharon is Professor of Philosophy, Digitalization and Society, Chair of the Department of Ethics and Political Philosophy and Co-Director of the Interdisciplinary Hub for Digitalization and Society (iHub) at Radboud University, Nijmegen. Her research explores how the increasing digitalization of society destabilizes public values and norms, and how best to protect them. She studied History and Political Theory at Paris VII and Tel Aviv Universities and obtained her PhD on the ethics of human enhancement from Bar Ilan University. Her research has been funded by the ERC and the Dutch Research Council. Tamar is a member of the European Commission’s European Group on Ethics in Science and New Technologies. Angela Daly is an international leader in the regulation and governance of new (digital) technologies, and in the theory and practice of knowledge exchange. She is Professor of Law & Technology in the Leverhulme Research Centre for Forensic Science and Dundee Law School. She joined Dundee in 2021 from the University of Strathclyde where she was Reader and Co-Director of the Strathclyde Centre for Internet Law & Policy in Strathclyde Law School, and Associate Dean for Knowledge Exchange in the Strathclyde Faculty of Humanities and Social Sciences. 6 April 2022 | 5pm (UCT +0) | Recording available HERE
Managing responsible AI discovery, design and innovation How can we encourage responsible innovation in AI? The sheer diversity of applications offers great opportunity, but also increases the ethical and practical challenges of ensuring that innovation does not breach human and social expectations of fair or appropriate behaviour. In this seminar, David Leslie (Turing) suggests some practical steps that are needed to build resilience, readiness, and trustworthiness into responsible AI design and discovery ecosystems. Jim Smith (UWE) considers how the growth in Trusted Research Environments can be good news for AI researchers needing access to confidential data, but it can pose its own challenges David Leslie (Alan Turing Institute) is the Director of Ethics and Responsible Innovation Research at The Alan Turing Institute. Before joining the Turing, he taught at Princeton’s University Center for Human Values, where he also participated in the UCHV’s 2017-2018 research collaboration with Princeton’s Center for Information Technology Policy on “Technology Ethics, Political Philosophy and Human Values: Ethical Dilemmas in AI Governance.” Prior to teaching at Princeton, David held academic appointments at Yale’s programme in Ethics, Politics and Economics and at Harvard’s Committee on Degrees in Social Studies, where he received over a dozen teaching awards including the 2014 Stanley Hoffman Prize for Teaching Excellence. He was also a 2017-2018 Mellon-Sawyer Fellow in Technology and the Humanities at Boston University and a 2018-2019 Fellow at MIT’s Dalai Lama Center for Ethics and Transformative Values. Jim Smith (UWE Bristol) is Professor in Interactive Artificial Intelligence (AI) and Deputy Director of the Computer Science Research Centre at the University of the West of England, Bristol, UK, where he teaches and researches various aspects of AI. 30 March 2022 | 5pm (UCT +0) | Recording available HERE
You can't have AI both ways: balancing data privacy and access Benefiting from data-intensive medicine, particularly activities driven by AI technology, requires first and foremost having access to data. It has previously been argued by various uthors that the ‘consent or anonymize approach’ conventionally used by a number of countries undermines data-intensive medicine, and at worse, may end up causing patient harm. Yet this is still the dominant approach in most European countries. In this paper we take the debate a step further by reviewing the different ethical/legal grounds and their advantages and disadvantages in the context of medical AI. We provide a practical overview of the ethical trade-offs inherent to data-intensive research and argue that the values underlying the chosen strategy should be made explicit by countries adopting a certain approach. Using a number of examples/cases, we conclude that pouring money into medical AI whilst at the same time limiting data access through strict privacy requirements is unethical; as this constitutes a waste of public resources. If countries wish to invest in medical AI, they should first make an ethical assessment of the consequences and prioritize accordingly. Stuart McLennan (T.U. Munich) has a Master of Bioethics and Health Law (Distinction) from the University of Otago in New Zealand, and a PhD in Biomedical Ethics (Sum Cum Laude) from the University of Basel. He is an interdisciplinary bioethiscist; integrating ethical, legal, and policy analysis with empirical methodologies (quantitative/qualitative). He has recognized expertise regarding ethical, legal, and policy analysis of health care improvement and patient safety. Marieke Bak (Amsterdam University Medical Schools) is a postdoctoral researcher and lecturer who is focused on responsible innovation in health care. Interests range between: the ELSI of biomedical research; digital ethics; and (public) health policy. At present she works on the ethical and legal aspects of data science and AI in health care, embedded as ethicist in several interdisciplinary EU projects. Antony Chuter (PainUK) initially trained as a computer technician, working mostly fixing hardware issues in a technical college in his home town of Chichester. He then developed long term pain and has lived with long term pain for over 30 yrs. Antony has several years of experience now as a lay co-applicant on publicly funded healthcare research studies and programme grants - mostly around prescribing safety, but in recent years he has got more interested in health data and how it can improve things for patients. He is a past chair of the patient group at the Royal College of General Practitioners and the patient group at the British Pain Society. He is interested in how public involvement can improve research and help it to focus on the real issues for patients and carers. He also hopes that one day, the public will have enough trust in health care data being used in healthcare research, that people will see sharing their data in the same light of altruism as joining a donor register for giving blood. 16 March 2022 | 5pm (UCT +0) | Recording available HERE
Airborne DNA: Technical, Practical, and Ethical Potentialities and Challenges The idea that human genetic material released into the air (airborne DNA) can be detected and used for specific purposes such as criminal investigation presents a series of technological, practical, and ethical implications which require transdisciplinary attention. Is the current technology ready to collect these data accurately and safely? Are there any unintended consequences and limits of use? What are the ethical implications of doing it? In this webinar, we will discuss and try to answer these and other questions. Ben Williams will outline the concept and logic of this approach. Francesco Tava will then raise a few ethical considerations arising from it. Ben Williams has 13 years of experience in environmental sampling, analysis and apportionment of air pollution. His PhD focused on the development of a method for the source apportionment and mapping of fugitive PM from industrial facilities using geochemical fingerprinting and environmental forensic approaches. He worked as an environmental consultant for 5 years, developing and undertaking novel source apportionment investigations for industry and regulatory authorities. Ben has worked on research projects for national and international research councils, private organisations (as PI, Co-I and PDRA) and currently works on several research projects including the Horizon 2020 funded Citizen-led air pollution reduction in cities (ClairCity), NERC funded bioaerosol characterisation and dispersion modelling (ENDOTOXII and BIOMOLD), and Wellcome Trust funded impacts of the built environment on health and economy (UPSTREAM) and engagement with local communities on the same topic (I-NUDGE). Francesco Tava's main research interests are in political philosophy, phenomenology, and applied ethics. He is particularly interested in problems surrounding the meaning and function of political solidarity in the European context. He is currently working on several interdisciplinary research projects focusing on the construction of European solidarity (eurosolidarity.com); and ethical models of data access and governance (uwedragon.org). In 2020-21, he has been collaborating with colleagues from the Bristol Business School on the process evaluation of the Research & Development Programme of the Open Data Institute. In 2022, he is Co-I for the UKRI DARE UK project GRAIMatter (Guidelines and Resources for AI Model Access from TrusTEd Research environments). |
2 March 2022 | 5pm (UCT +0) | Recording available HERE
Using Research Data in Scenarios of Transitional Justice
The access to and use of research data in post-conflict settings poses a number of challenges for scholars. How can we use these data in a secure and trustworthy way? How can we avoid unconscious biases and misconceptions in analysing and mining meaningful information from them? What are the risks involved in misusing these data? In this webinar, we examine different approaches to this problem by looking at diverse scenarios and methodologies. Artjoms Ivlevs will explore the reasons behind the recent decision of the Latvian government to disclose information about KGB informants from the Soviet era and Henrique Tavares Furtado will discuss the findings of his forthcoming book (Politics of Impunity) on the struggles for accountability and the resurgence of militarism in Brazil.
Artjoms Ivlevs is Professor of Economics at the Department of Accounting, Economics and Finance, Bristol Business School, UWE. His research interests include economics of migration, labour, ethnicity, citizenship, forced displacement, education, corruption, health, happiness and tourism. Most of his research is focused on the countries of Central and Eastern Europe and the former Soviet Union. He is the coordinator of the UWE Global Migration Network, a cross-faculty group of researchers and practitioners at the University of the West of England, interested in migration-related issues.
Henrique Tavares Furtado completed his PhD in Politics from the University of Manchester in 2016, when he joined the Politics and IR programme at UWE. He is the Co-convenor of the BISA Poststructural Politics Working Group and a council member of the Latin American Bureau (LAB). His latest book, Politics of Impunity: Torture, The Armed Forces and the Failure of Transitional Justice in Brazil is forthcoming with Edinburgh University Press.
Using Research Data in Scenarios of Transitional Justice
The access to and use of research data in post-conflict settings poses a number of challenges for scholars. How can we use these data in a secure and trustworthy way? How can we avoid unconscious biases and misconceptions in analysing and mining meaningful information from them? What are the risks involved in misusing these data? In this webinar, we examine different approaches to this problem by looking at diverse scenarios and methodologies. Artjoms Ivlevs will explore the reasons behind the recent decision of the Latvian government to disclose information about KGB informants from the Soviet era and Henrique Tavares Furtado will discuss the findings of his forthcoming book (Politics of Impunity) on the struggles for accountability and the resurgence of militarism in Brazil.
Artjoms Ivlevs is Professor of Economics at the Department of Accounting, Economics and Finance, Bristol Business School, UWE. His research interests include economics of migration, labour, ethnicity, citizenship, forced displacement, education, corruption, health, happiness and tourism. Most of his research is focused on the countries of Central and Eastern Europe and the former Soviet Union. He is the coordinator of the UWE Global Migration Network, a cross-faculty group of researchers and practitioners at the University of the West of England, interested in migration-related issues.
Henrique Tavares Furtado completed his PhD in Politics from the University of Manchester in 2016, when he joined the Politics and IR programme at UWE. He is the Co-convenor of the BISA Poststructural Politics Working Group and a council member of the Latin American Bureau (LAB). His latest book, Politics of Impunity: Torture, The Armed Forces and the Failure of Transitional Justice in Brazil is forthcoming with Edinburgh University Press.
1 December 2021 | 5pm (UCT +0) | Recording available HERE
Virtual patient or health data management? Emerging methods to protect the confidentiality of health data
There are great gains to be made from reusing and sharing health data: in clinical care, in operational efficiency, and in public health research. However, the sensitivity of health data creates headaches for data governance and management. In this seminar we examine innovative solutions to digital representation and data sharing in health. Luk Arbuckle will explore how methods of automated data governance can provide additional control over data, while Matthias Braun discusses how ‘digital twins’ can address data management but may give rise to ethical concerns.
Luk Arbuckle is Chief Methodologist at Privacy Analytics (an IQVIA company), providing strategic leadership in how to responsibly use and share data, and innovation into privacy-enhancing technologies and methods. He draws from an extensive background in statistics, mathematics, and engineering, as well as industry and regulatory experience. He engages senior decision makers in solving real-world problems in business and privacy engineering.
Matthias Braun is an Assistant Professor and independent young research group leader at Friedrich-Alexander University of Erlangen-Nuremberg. Currently he is also a visiting scholar at Maastricht University. His research addresses questions of political ethics (the relationship between democracy, civil society and the rule of law) as well as with the ethical and governance challenges of new technologies (especially: Big Data, Artificial Intelligence and Genome Editing). Matthias has published numerous articles in high ranked scientific journals and has been invited for several national and international lectures. Further he his a principal investigator in the collaborative research center called „EmpkinS" funded by the German Research Foundation.
Virtual patient or health data management? Emerging methods to protect the confidentiality of health data
There are great gains to be made from reusing and sharing health data: in clinical care, in operational efficiency, and in public health research. However, the sensitivity of health data creates headaches for data governance and management. In this seminar we examine innovative solutions to digital representation and data sharing in health. Luk Arbuckle will explore how methods of automated data governance can provide additional control over data, while Matthias Braun discusses how ‘digital twins’ can address data management but may give rise to ethical concerns.
Luk Arbuckle is Chief Methodologist at Privacy Analytics (an IQVIA company), providing strategic leadership in how to responsibly use and share data, and innovation into privacy-enhancing technologies and methods. He draws from an extensive background in statistics, mathematics, and engineering, as well as industry and regulatory experience. He engages senior decision makers in solving real-world problems in business and privacy engineering.
Matthias Braun is an Assistant Professor and independent young research group leader at Friedrich-Alexander University of Erlangen-Nuremberg. Currently he is also a visiting scholar at Maastricht University. His research addresses questions of political ethics (the relationship between democracy, civil society and the rule of law) as well as with the ethical and governance challenges of new technologies (especially: Big Data, Artificial Intelligence and Genome Editing). Matthias has published numerous articles in high ranked scientific journals and has been invited for several national and international lectures. Further he his a principal investigator in the collaborative research center called „EmpkinS" funded by the German Research Foundation.
17 November 2021 | 5PM (UTC +0)
A giant with feet of clay? The concept of personal data as a (precarious) backbone for data governance
Andrea Martani (PhD candidate in biomedical ethics, University of Basel)
Data governance frameworks generally rest on the basic assumption that there is a significant difference between data of a personal and non-personal nature, whereby only the former are in need of specific protection. Such approach is perfectly – although not uniquely – embodied by recent legislative efforts by the European Union. The latter has recently passed an articulated and protective regulation on the processing of personal data (Regulation (EU) 2016/679), in which privacy plays a central role. Almost simultaneously, a much slimmer regulation concerning non-personal data was also issued (Regulation (EU) 2018/1807), where the basic principle is that such data should flow freely. More broadly, ethical discussions on the data uses also seem to largely agree that privacy considerations (and thus data governance) only come into play when personal data are at stake. But is it sustainable to keep the personal vs non-personal distinction as the backbone of how data governance is understood?
In this short input-talk, I will delve into this question from the perspective of legal analysis. In particular, I will illustrate the (un)clear legal definition of personal data, venture into an explanation of the reasons for such (un)clarity, and investigate some potential ways forward.
Mining social media data for research
Arusha McKenzie (UWE Bristol)
Elizabeth Green (UWE Bristol)
Social media can provide a wealth of insight into public perceptions, experiences and beliefs. Data which is freely in the public domain can be accessed by any individual or organisation and subsequently social media data has been mined to provide research insights. With the Facebook and Cambridge Analytica scandal in 2018, the public had raised awareness of the (mis)use of social media data. Best practice research guidelines surrounding the analysis of social media has aimed to provide criteria to identity and raise awareness of the data processing, however with projects processing large volumes of data it is difficult to apply such principles (Williams, Burnlap and Sloan, 2017). This discussion will outline 2 current projects which are mining social media data to best understand social media harm, and also public trust in NHS data sharing. Both projects will reflect the need for further guidelines and processes for mining large data sets.
A giant with feet of clay? The concept of personal data as a (precarious) backbone for data governance
Andrea Martani (PhD candidate in biomedical ethics, University of Basel)
Data governance frameworks generally rest on the basic assumption that there is a significant difference between data of a personal and non-personal nature, whereby only the former are in need of specific protection. Such approach is perfectly – although not uniquely – embodied by recent legislative efforts by the European Union. The latter has recently passed an articulated and protective regulation on the processing of personal data (Regulation (EU) 2016/679), in which privacy plays a central role. Almost simultaneously, a much slimmer regulation concerning non-personal data was also issued (Regulation (EU) 2018/1807), where the basic principle is that such data should flow freely. More broadly, ethical discussions on the data uses also seem to largely agree that privacy considerations (and thus data governance) only come into play when personal data are at stake. But is it sustainable to keep the personal vs non-personal distinction as the backbone of how data governance is understood?
In this short input-talk, I will delve into this question from the perspective of legal analysis. In particular, I will illustrate the (un)clear legal definition of personal data, venture into an explanation of the reasons for such (un)clarity, and investigate some potential ways forward.
Mining social media data for research
Arusha McKenzie (UWE Bristol)
Elizabeth Green (UWE Bristol)
Social media can provide a wealth of insight into public perceptions, experiences and beliefs. Data which is freely in the public domain can be accessed by any individual or organisation and subsequently social media data has been mined to provide research insights. With the Facebook and Cambridge Analytica scandal in 2018, the public had raised awareness of the (mis)use of social media data. Best practice research guidelines surrounding the analysis of social media has aimed to provide criteria to identity and raise awareness of the data processing, however with projects processing large volumes of data it is difficult to apply such principles (Williams, Burnlap and Sloan, 2017). This discussion will outline 2 current projects which are mining social media data to best understand social media harm, and also public trust in NHS data sharing. Both projects will reflect the need for further guidelines and processes for mining large data sets.
3 November 2021 | 5PM (UTC +0)
The ethical dimensions of data collection and use in the public sector
Ben Gilburt (MSc Candidate in Social Science of the Internet, Oxford Internet Institute | AI Ethics Lead at Sopra Steria)
Ben Jones (Head of Digital at Harrow Council).
This presentation explores the ethical dimensions of data collection and use in the context of public services in the UK. In 2020, Sopra Steria (a multinational consulting business) worked with Harrow Council to understand how the council could use residents’ data to personalise their experience when visiting the Council’s website, including the information that is presented to them and the services that are promoted.
The project explored a unique data ethics context, where highly sensitive and personal data is available to the Council, where personalisation has the potential to significantly decrease the demand on call centres and improve the provision of public services. However, the data collected and used must be aligned with the expectations and values of residents, protecting their safety and privacy.
In this presentation we will investigate the philosophical underpinnings of the project, the methodology implemented to investigate and understand residents’ values and expectations and examples of how the project impacted the council’s processes and policies.
The ethical dimensions of data collection and use in the public sector
Ben Gilburt (MSc Candidate in Social Science of the Internet, Oxford Internet Institute | AI Ethics Lead at Sopra Steria)
Ben Jones (Head of Digital at Harrow Council).
This presentation explores the ethical dimensions of data collection and use in the context of public services in the UK. In 2020, Sopra Steria (a multinational consulting business) worked with Harrow Council to understand how the council could use residents’ data to personalise their experience when visiting the Council’s website, including the information that is presented to them and the services that are promoted.
The project explored a unique data ethics context, where highly sensitive and personal data is available to the Council, where personalisation has the potential to significantly decrease the demand on call centres and improve the provision of public services. However, the data collected and used must be aligned with the expectations and values of residents, protecting their safety and privacy.
In this presentation we will investigate the philosophical underpinnings of the project, the methodology implemented to investigate and understand residents’ values and expectations and examples of how the project impacted the council’s processes and policies.
5 May 2021 | 5pm (UCT +0)
Data use and the environment: where does responsibility for impacts lie?
Federica Lucivero (University of Oxford): "The environmental sustainability of big data: delineating a responsibility gap"
Digital infrastructures, the backbone of the data revolution, have considerable environmental impacts ranging from the energy consumption of data centres, to the environmental costs of mineral extractions for digital infrastructure manufacturing, and the toxic emissions linked to their disposal. Although the issue is coming to surface in some academic, policy and practical contexts, in my fieldwork with stakeholders in this area it emerges that guidelines and common standards are still missing, and actors feel that they move in a “responsibility void”. In this seminar, I will explore the contours of this responsibility gap for digital sustainability and suggest some questions that should be addressed by those working in data ethics and governance.
Federica is a Senior Researcher in Ethics and Data at the Ethox Centre and the Wellcome Centre for Ethics and Humanities (Big Data Institute, University of Oxford). She has trained in philosophy and qualitative research methods and her expertise spans across different areas and disciplines: ethics and social studies of science and technology, bioethics, governance of innovation, philosophy of science and technology. Her research focuses on the ethical aspects of the increasing introduction of IT (online portals, wearable sensors, mobile apps) in care pathways, individual health practices, and biomedical research. More recently, she was awarded a BA/Leverhulme grant to explore ethical issues related to the environmental sustainability of Big Data initiatives, digital infrastructures and AI. She is the co-founder and current director of the Big Data Ethics Forum at the Big Data Institute, which provides an opportunity for scientists to discuss practical ethical problems arising in the development and conduct of their research and share models of good practice in an interdisciplinary setting. She is a member of the Lombardia Regional Forum for Research and Innovation.
Teresa Dillon (UWE Bristol): "The Materiality of Data and its impact on the Environment"
Our digital worlds require finite, natural resources, land, water and minerals to make and power the infrastructural loops that enable ‘always’ on data connectivity. Since their inception pervasive computing narratives failed to foreground such materiality, favouring instead notions of efficiency and ease, as indicators of a better quality of life. This narrative has been most concentrated in the ideal of the ‘Smart City’ where aggregated Internet of Things (IoT) and Big Data services are purposefully built, so as to provide seamless interactions. Within the last decade, such seamless narratives have been further co-opted into an ecosystem management discourse, through which notions of sustainability are now deployed as targets for the betterment of society. While this shift maps on to global and national efforts to reach various climate goals, the reality is the material footprint, the interface and even the user is increasing rendered invisible. Given this the borders through which one changes or regulates behaviour or somatically understands one’s impact on and in the world begins to shift. Highlighting such relations this talk will draw on examples from planned ‘Smart Cities’ to artistic practices, which reveal machine logics and their associated environmental issues. The talk will close with exploring how such examples are nested in a complex set of trade-offs that emphasise the need for increased corporate responsibility and governance.
Teresa is an artist and researcher. Her work is primarily situated within urban spaces and explores the performative, lived entanglements of techno-civic systems. This relates to how urban life is organised, permeated and shaped by technology and how technical infrastructures foster or not, kin relations with other species and landscapes. Her special interests lie in what is indiscernible, discarded and obsolete within a site or space with key topics focusing on surveillance, sound and repair cultures; smart cities, data and the environment; hosting, survival and commoning; healing, ritual and environmental loss. Since 2013, Teresa directs Urban Hosts – a programme of events that provoke and promote alternatives to city living. She is a Humboldt Fellow and currently holds the post of Professor of City Futures, at the School of Art and Design at the University of the West of England. In 2018 she established RepairActs – a practice-based programme that explores repair cultures, aesthetics and economies. Currently she is working with the Ada Lovelace Institute, JUST AI programme on topics relating to data, ethics and the environmental and with colleagues in India (Toxic Links) and Brazil (Gambiologia) was awarded a British Council COP26 Creative Commission for ‘Tales of Care and Repair’.
Links: polarproduce.org / repairacts.net / urbanhosts.org / @TeresaHacks
Data use and the environment: where does responsibility for impacts lie?
Federica Lucivero (University of Oxford): "The environmental sustainability of big data: delineating a responsibility gap"
Digital infrastructures, the backbone of the data revolution, have considerable environmental impacts ranging from the energy consumption of data centres, to the environmental costs of mineral extractions for digital infrastructure manufacturing, and the toxic emissions linked to their disposal. Although the issue is coming to surface in some academic, policy and practical contexts, in my fieldwork with stakeholders in this area it emerges that guidelines and common standards are still missing, and actors feel that they move in a “responsibility void”. In this seminar, I will explore the contours of this responsibility gap for digital sustainability and suggest some questions that should be addressed by those working in data ethics and governance.
Federica is a Senior Researcher in Ethics and Data at the Ethox Centre and the Wellcome Centre for Ethics and Humanities (Big Data Institute, University of Oxford). She has trained in philosophy and qualitative research methods and her expertise spans across different areas and disciplines: ethics and social studies of science and technology, bioethics, governance of innovation, philosophy of science and technology. Her research focuses on the ethical aspects of the increasing introduction of IT (online portals, wearable sensors, mobile apps) in care pathways, individual health practices, and biomedical research. More recently, she was awarded a BA/Leverhulme grant to explore ethical issues related to the environmental sustainability of Big Data initiatives, digital infrastructures and AI. She is the co-founder and current director of the Big Data Ethics Forum at the Big Data Institute, which provides an opportunity for scientists to discuss practical ethical problems arising in the development and conduct of their research and share models of good practice in an interdisciplinary setting. She is a member of the Lombardia Regional Forum for Research and Innovation.
Teresa Dillon (UWE Bristol): "The Materiality of Data and its impact on the Environment"
Our digital worlds require finite, natural resources, land, water and minerals to make and power the infrastructural loops that enable ‘always’ on data connectivity. Since their inception pervasive computing narratives failed to foreground such materiality, favouring instead notions of efficiency and ease, as indicators of a better quality of life. This narrative has been most concentrated in the ideal of the ‘Smart City’ where aggregated Internet of Things (IoT) and Big Data services are purposefully built, so as to provide seamless interactions. Within the last decade, such seamless narratives have been further co-opted into an ecosystem management discourse, through which notions of sustainability are now deployed as targets for the betterment of society. While this shift maps on to global and national efforts to reach various climate goals, the reality is the material footprint, the interface and even the user is increasing rendered invisible. Given this the borders through which one changes or regulates behaviour or somatically understands one’s impact on and in the world begins to shift. Highlighting such relations this talk will draw on examples from planned ‘Smart Cities’ to artistic practices, which reveal machine logics and their associated environmental issues. The talk will close with exploring how such examples are nested in a complex set of trade-offs that emphasise the need for increased corporate responsibility and governance.
Teresa is an artist and researcher. Her work is primarily situated within urban spaces and explores the performative, lived entanglements of techno-civic systems. This relates to how urban life is organised, permeated and shaped by technology and how technical infrastructures foster or not, kin relations with other species and landscapes. Her special interests lie in what is indiscernible, discarded and obsolete within a site or space with key topics focusing on surveillance, sound and repair cultures; smart cities, data and the environment; hosting, survival and commoning; healing, ritual and environmental loss. Since 2013, Teresa directs Urban Hosts – a programme of events that provoke and promote alternatives to city living. She is a Humboldt Fellow and currently holds the post of Professor of City Futures, at the School of Art and Design at the University of the West of England. In 2018 she established RepairActs – a practice-based programme that explores repair cultures, aesthetics and economies. Currently she is working with the Ada Lovelace Institute, JUST AI programme on topics relating to data, ethics and the environmental and with colleagues in India (Toxic Links) and Brazil (Gambiologia) was awarded a British Council COP26 Creative Commission for ‘Tales of Care and Repair’.
Links: polarproduce.org / repairacts.net / urbanhosts.org / @TeresaHacks
14 April 2021 | 5pm (UCT +0) | Recording available HERE
Sharing Data Between Institutions
Frédérique Horwood is Lead Counsel for Privacy and Data Governance at the World Anti-Doping Agency (WADA). WADA is an international and independent anti-doping agency. Its mission is to lead a collaborative worldwide movement for doping-free sport. In addition to maintaining and implementing WADA’s internal privacy program, Frédérique leads all legal and policy matters related to the International Standard for the Protection of Privacy and Personal Information, one of eight International Standards that regulate anti-doping globally along with the World Anti-Doping Code. Prior to joining WADA, Frédérique practiced in the privacy and data management group at a leading Canadian law firm.
Olivier Thereaux is Head of Research and Development at the Open Data Institute (ODI), Olivier leads the ODI’s R&D, product and service discovery work, and runs a multidisciplinary team of research, technology, and user experience practitioners.Olivier and his team add in-depth expertise to the ODI’s advisory activities on topics including data infrastructure, technology and society, standards, emerging data technology, and innovating with data. He also stewards the ODI’s work on data ethics. He has been plying his trade for over 20 years on 3 and a half continents, with a focus on the various facets of open technology: open standards, open source, open data and open innovation.
Sharing Data Between Institutions
Frédérique Horwood is Lead Counsel for Privacy and Data Governance at the World Anti-Doping Agency (WADA). WADA is an international and independent anti-doping agency. Its mission is to lead a collaborative worldwide movement for doping-free sport. In addition to maintaining and implementing WADA’s internal privacy program, Frédérique leads all legal and policy matters related to the International Standard for the Protection of Privacy and Personal Information, one of eight International Standards that regulate anti-doping globally along with the World Anti-Doping Code. Prior to joining WADA, Frédérique practiced in the privacy and data management group at a leading Canadian law firm.
Olivier Thereaux is Head of Research and Development at the Open Data Institute (ODI), Olivier leads the ODI’s R&D, product and service discovery work, and runs a multidisciplinary team of research, technology, and user experience practitioners.Olivier and his team add in-depth expertise to the ODI’s advisory activities on topics including data infrastructure, technology and society, standards, emerging data technology, and innovating with data. He also stewards the ODI’s work on data ethics. He has been plying his trade for over 20 years on 3 and a half continents, with a focus on the various facets of open technology: open standards, open source, open data and open innovation.
17 March 2021 | 5pm (UCT +0) | Recording available HERE
Engaging the Research Community in Patient Input
Health data research using confidential patient data generates high-quality evidence for health policy, but it can impinge on the right to privacy of the individuals. Ensuring patient data is used ethically and in a way that builds and retains the trust of the public is vital to making sure that this research can go ahead. In this seminar, we will explore good practices when using patient data in research, and the lessons that can be drawn for other fields working with confidential personal data. We will hear from Natalie Banner from Understanding Patient Data (UPD), and Amanda White from HDR UK the national institute for health data science.
Natalie Banner is the Lead for Understanding Patient Data (UPD), an initiative hosted by the Wellcome Trust to support better conversations about how patient data is used for care and research. UPD works with patients, charities and health professionals to champion responsible uses of data, feeding into policy development, creating accessible resources and horizon scanning for emerging issues which may affect public confidence in the use of health data. This includes exploring emerging data-driven technologies and how to create the right ethical and governance frameworks for these in healthcare and research.
Amanda White is the Communications and Engagement Executive Director for Health Data Research UK (HDR UK), she provides strategic guidance to the development of the Institute's strategy and plays a leading role to create and build the organisation's brand. Amanda leads the communications and engagement strategies for HDR UK. Amanda has a background in health communications and joined HDR UK from UCLPartners, an academic health science partnership, where she established the communications function. Here she launched the NHS Innovation Accelerator, which support the uptake of innovative solutions across health and social care, and led communications and engagement activity for the reconfiguration of specialist cancer and cardiac services in north central and east London.
In the discussion the following web pages were posted: Onora O'Neill talks (1 & 2); What do people think about third party data; Health Data Gateway.
Engaging the Research Community in Patient Input
Health data research using confidential patient data generates high-quality evidence for health policy, but it can impinge on the right to privacy of the individuals. Ensuring patient data is used ethically and in a way that builds and retains the trust of the public is vital to making sure that this research can go ahead. In this seminar, we will explore good practices when using patient data in research, and the lessons that can be drawn for other fields working with confidential personal data. We will hear from Natalie Banner from Understanding Patient Data (UPD), and Amanda White from HDR UK the national institute for health data science.
Natalie Banner is the Lead for Understanding Patient Data (UPD), an initiative hosted by the Wellcome Trust to support better conversations about how patient data is used for care and research. UPD works with patients, charities and health professionals to champion responsible uses of data, feeding into policy development, creating accessible resources and horizon scanning for emerging issues which may affect public confidence in the use of health data. This includes exploring emerging data-driven technologies and how to create the right ethical and governance frameworks for these in healthcare and research.
Amanda White is the Communications and Engagement Executive Director for Health Data Research UK (HDR UK), she provides strategic guidance to the development of the Institute's strategy and plays a leading role to create and build the organisation's brand. Amanda leads the communications and engagement strategies for HDR UK. Amanda has a background in health communications and joined HDR UK from UCLPartners, an academic health science partnership, where she established the communications function. Here she launched the NHS Innovation Accelerator, which support the uptake of innovative solutions across health and social care, and led communications and engagement activity for the reconfiguration of specialist cancer and cardiac services in north central and east London.
In the discussion the following web pages were posted: Onora O'Neill talks (1 & 2); What do people think about third party data; Health Data Gateway.
10 March 2021 | 5pm (UTC +0) | Recording available HERE
How does Society Use Statistics and Understand Data?
Gaby Umbach (EUI, GlobalStat): "The role of data in policy-making and the requirements for data literacy"
Gaby is part-time Professor and Director of GlobalStat. She is non-resident Visiting Fellow of the European Parliamentary Research Service, where she previously dealt with research methodologies and strategic academic outreach. She is also Adjunct Professor at the Universities of Cologne, Innsbruck and LUISS Guido Carli/CIFEt, Book Review Editor of the Journal of Common Market Studies, Editorial Board member of the International Journal Evakluation and Program Planning and Board member of the Institute for European Politics Berlin. At the EUI, she is also co-principal of the interdisciplinary research cluster 'Crisis of Expert Knowledge and Authority'. Since 2020, she chairs the working group on 'Statistical and Data Literacy in Policy-Making', of the International Statistical Literacy Project (ISLP), International Statistical Institute (ISI), International Association for Statistical Education (IASE). Her research focuses on global governance, indicator-based policy-making, measuring as governance technique, and evidence-informed policy-making.
Hannah Little (UWE Bristol): "Communicating data rights issues in a complicated world"
Hannah Little is a Senior Lecturer in Science Communication at UWE Bristol, a Data Fellow at the South West Creative Technology Network (SWCTN) and a Board Member and Supporter Council member with Open Rights Group (ORG), a renowned digital rights advocacy group in the UK. Hannah’s work on Science Communication projects looks at innovative ways to communicate about complex concepts in science and technology. She has worked with the Royal Institution, the Environment Agency, the British Science Festival, the BBC, and I’m a Scientist, Get Me Out Of Here.
Hannah’s research has recently shifted into the area of data rights advocacy which presents an interesting case study as an area that affects almost everyone in the world, but often requires an in-depth understanding of technology and policy that most people do not possess. She is currently employed on projects including the Horizon 2020 SciRoc project at UWE Bristol looking at public perceptions of data collected and used in the context of Smart Cities, and a project looking to use audience mapping and approaches from visitor studies to create ethical digital communication strategies with ORG and SWCTN.
How does Society Use Statistics and Understand Data?
Gaby Umbach (EUI, GlobalStat): "The role of data in policy-making and the requirements for data literacy"
Gaby is part-time Professor and Director of GlobalStat. She is non-resident Visiting Fellow of the European Parliamentary Research Service, where she previously dealt with research methodologies and strategic academic outreach. She is also Adjunct Professor at the Universities of Cologne, Innsbruck and LUISS Guido Carli/CIFEt, Book Review Editor of the Journal of Common Market Studies, Editorial Board member of the International Journal Evakluation and Program Planning and Board member of the Institute for European Politics Berlin. At the EUI, she is also co-principal of the interdisciplinary research cluster 'Crisis of Expert Knowledge and Authority'. Since 2020, she chairs the working group on 'Statistical and Data Literacy in Policy-Making', of the International Statistical Literacy Project (ISLP), International Statistical Institute (ISI), International Association for Statistical Education (IASE). Her research focuses on global governance, indicator-based policy-making, measuring as governance technique, and evidence-informed policy-making.
Hannah Little (UWE Bristol): "Communicating data rights issues in a complicated world"
Hannah Little is a Senior Lecturer in Science Communication at UWE Bristol, a Data Fellow at the South West Creative Technology Network (SWCTN) and a Board Member and Supporter Council member with Open Rights Group (ORG), a renowned digital rights advocacy group in the UK. Hannah’s work on Science Communication projects looks at innovative ways to communicate about complex concepts in science and technology. She has worked with the Royal Institution, the Environment Agency, the British Science Festival, the BBC, and I’m a Scientist, Get Me Out Of Here.
Hannah’s research has recently shifted into the area of data rights advocacy which presents an interesting case study as an area that affects almost everyone in the world, but often requires an in-depth understanding of technology and policy that most people do not possess. She is currently employed on projects including the Horizon 2020 SciRoc project at UWE Bristol looking at public perceptions of data collected and used in the context of Smart Cities, and a project looking to use audience mapping and approaches from visitor studies to create ethical digital communication strategies with ORG and SWCTN.
17 February 2021 | 5pm (UTC +0) | Recording available HERE
Developing Data Governance for Research in Low and Middle-Income Countries
Julie Mytton (UWE Bristol) will discuss the experience of data governance and management in Nepal, where a research centre has been set up as a partnership between high-income and low-income countries.
Elizabeth Green (UWE Bristol) will review a virtual 'summer school' commissioned by the NIHR to provide data governance training for researchers working in LMICs, and the lessons learned by both attendees and the tutors.
Developing Data Governance for Research in Low and Middle-Income Countries
Julie Mytton (UWE Bristol) will discuss the experience of data governance and management in Nepal, where a research centre has been set up as a partnership between high-income and low-income countries.
Elizabeth Green (UWE Bristol) will review a virtual 'summer school' commissioned by the NIHR to provide data governance training for researchers working in LMICs, and the lessons learned by both attendees and the tutors.
3 February 2021 | 5pm (UTC +0) | Recording available HERE
Building Trust in Research Based on Restricted Data
How do we build trust in research findings when the data is not available for all to see? This has become particularly important during the pandemic, when rapid policy responses have required reliable, high-quality, timely evidence, in quantities not seen before. There are good practices designed to build trust – can they be incentivised, or is there a need for regulation?
Sam Smith (Med Confidential): "The Policy Imperative for High-Quality, Traceable Analysis"
Felix Ritchie (DRAGoN/UWE): "What do We Mean by Validation, Reproducibility and Transparency?
Building Trust in Research Based on Restricted Data
How do we build trust in research findings when the data is not available for all to see? This has become particularly important during the pandemic, when rapid policy responses have required reliable, high-quality, timely evidence, in quantities not seen before. There are good practices designed to build trust – can they be incentivised, or is there a need for regulation?
Sam Smith (Med Confidential): "The Policy Imperative for High-Quality, Traceable Analysis"
Felix Ritchie (DRAGoN/UWE): "What do We Mean by Validation, Reproducibility and Transparency?
20 January 2021 | 5pm (UTC +0) | Recording available HERE
The Value of Digital and Data Development in Lower Middle Income Countries
Mike Rose (CABI): "Involving patients in research decision-making"
For many years donors such as DFID (now FCDO), the Bill and Melinda Gates Foundation, the World Bank and others have invested significant sums of money in trying to assist lower income countries in their digital and data development. Often, as we have seen elsewhere, the investments made do not necessarily achieve the expected value. CABI have been developing an understanding of these types of investments, why they do not deliver as expected and developing an approach to ensure going forward investments have a greater chance of achieving the value they set out to achieve. This short talk will consider the CABI theory of change that is underpinning the work it is leading across East Africa and other countries and how a change in perspective can significantly change the chances of a data transformation project being successful.
Mike worked for the UK Environment Agency and the Department for Environment, Food and Rural Affairs for nearly 20 years in roles focused on making government data available to all those who wanted to use it. This involved developing licensing and IPR management processes as well as negotiating complex data licensing agreements. Since leaving government Mike has worked for the Open Data Institute and as a freelance consultant focused on how we achieve change by enabling better use of data. Working for CABI Mike has worked on the co-creation of a data sharing policy in Ethiopia and how that policy can practically be implemented in the Soil and Agronomy sector.
Damian Whittard (UWE Bristol)
Using an action research methodology, a team of economist at the University of the West of England have worked with CABI to develop and test a framework to measure the value of improving data governance and access in Gates Foundation Programmes. This presentation will outline the challenges involved in measuring and valuing imprecise concepts; where access to data is limited; values potentially unquantifiable; and impacts go well beyond the lifecycle of the projects.
Using the five safes model, initially developed to support the use of controlled data, the team explore how such a formal framework could be used to support of the measurement and evaluation of the value of data governance for future donor funded projects. It then tests this framework to report some illustrative results of the value of data governance and access from CABI’s Supporting Soil Health Interventions project in Ethiopia.
The Value of Digital and Data Development in Lower Middle Income Countries
Mike Rose (CABI): "Involving patients in research decision-making"
For many years donors such as DFID (now FCDO), the Bill and Melinda Gates Foundation, the World Bank and others have invested significant sums of money in trying to assist lower income countries in their digital and data development. Often, as we have seen elsewhere, the investments made do not necessarily achieve the expected value. CABI have been developing an understanding of these types of investments, why they do not deliver as expected and developing an approach to ensure going forward investments have a greater chance of achieving the value they set out to achieve. This short talk will consider the CABI theory of change that is underpinning the work it is leading across East Africa and other countries and how a change in perspective can significantly change the chances of a data transformation project being successful.
Mike worked for the UK Environment Agency and the Department for Environment, Food and Rural Affairs for nearly 20 years in roles focused on making government data available to all those who wanted to use it. This involved developing licensing and IPR management processes as well as negotiating complex data licensing agreements. Since leaving government Mike has worked for the Open Data Institute and as a freelance consultant focused on how we achieve change by enabling better use of data. Working for CABI Mike has worked on the co-creation of a data sharing policy in Ethiopia and how that policy can practically be implemented in the Soil and Agronomy sector.
Damian Whittard (UWE Bristol)
Using an action research methodology, a team of economist at the University of the West of England have worked with CABI to develop and test a framework to measure the value of improving data governance and access in Gates Foundation Programmes. This presentation will outline the challenges involved in measuring and valuing imprecise concepts; where access to data is limited; values potentially unquantifiable; and impacts go well beyond the lifecycle of the projects.
Using the five safes model, initially developed to support the use of controlled data, the team explore how such a formal framework could be used to support of the measurement and evaluation of the value of data governance for future donor funded projects. It then tests this framework to report some illustrative results of the value of data governance and access from CABI’s Supporting Soil Health Interventions project in Ethiopia.
9 December 2020 | 6pm (UTC +0) | Recording available HERE
Health Research and Ethics
Simon Parker (Cancer Research UK): "Involving patients in research decision-making"
Simon Parker is a Secure Data Manager with a history of working in the non-profit sector. He is currently a member of the Cancer Intelligence at Cancer Research UK where he is responsible for setting the data governance policies within the team to ensure the "safe use" of research data.
Julie Woodley (UWE Bristol): "The Ethics relating to the utilisation of patient data”
Julie Woodley is a Senior lecturer in Radiography at UWE. She is also chair of the Faculty research ethics committee and chair of Central Bristol NHS research ethics committee.
Health Research and Ethics
Simon Parker (Cancer Research UK): "Involving patients in research decision-making"
Simon Parker is a Secure Data Manager with a history of working in the non-profit sector. He is currently a member of the Cancer Intelligence at Cancer Research UK where he is responsible for setting the data governance policies within the team to ensure the "safe use" of research data.
Julie Woodley (UWE Bristol): "The Ethics relating to the utilisation of patient data”
Julie Woodley is a Senior lecturer in Radiography at UWE. She is also chair of the Faculty research ethics committee and chair of Central Bristol NHS research ethics committee.
25 November 2020 | 6pm (UTC +0) | Recording available HERE
Has Covid changed access to data for policy and analysis?
In this seminar two experts in the use of data for research and policy analysis will discuss the impact of Covid-19 on the UK data-for-policy infrastructure. Richard Welpton will focus on the experiences in the health sector, while Louise Corti will consider the wider impacts on data access and sharing.
Richard Welpton (The Health Foundation)
Richard Welpton has recently served as Senior Data Manager at The Health Foundation. He has held previous roles at Cancer Research UK, UK Data Service and Office for National Statistics. Very soon he will begin working at the Economic and Social Research Council as Head of Data Services Infrastructure.
Louise Corti (University of Essex)
Louise Corti is an Associate Director at the UK Data Archive, at the University of Essex. She currently
directs the UK Data Service’s Data Publishing and Access operations aimed at supporting the sharing and use of data for research within the social sciences. She is an open science advocate, and promotes pragmatic and positive solutions to data sharing and reproducibility for research.
Has Covid changed access to data for policy and analysis?
In this seminar two experts in the use of data for research and policy analysis will discuss the impact of Covid-19 on the UK data-for-policy infrastructure. Richard Welpton will focus on the experiences in the health sector, while Louise Corti will consider the wider impacts on data access and sharing.
Richard Welpton (The Health Foundation)
Richard Welpton has recently served as Senior Data Manager at The Health Foundation. He has held previous roles at Cancer Research UK, UK Data Service and Office for National Statistics. Very soon he will begin working at the Economic and Social Research Council as Head of Data Services Infrastructure.
Louise Corti (University of Essex)
Louise Corti is an Associate Director at the UK Data Archive, at the University of Essex. She currently
directs the UK Data Service’s Data Publishing and Access operations aimed at supporting the sharing and use of data for research within the social sciences. She is an open science advocate, and promotes pragmatic and positive solutions to data sharing and reproducibility for research.
11 November 2020 | 5pm (UTC +0)
Stergios Aidinlis (University of Oxford; Trilateral Research): "Reconsidering the 'Public' / 'Private' Divide to Realise Societal Welfare in Data Access and Governance"
The relationship between the ‘public interest’ and ‘private interests’ under lawful grounds for data processing is often treated as a zero-sum game in data access and governance frameworks. This is all the more apparent in the post-C19 world, where individual decisions of public-sector data owners have been treated as authoritative assessments of what serves the ‘public good’, even if public health and other objectives heavily rely on public-private data sharing partnerships. Drawing on the UK and EU data protection legal frameworks, this paper interrogates this conventional, often rigidly observed, divide, arguing against it. A conceptualisation of the ‘public’ interest as not incompatible with private interests, as long as a contribution to societal well-being is made through data access, is offered in that regard. The paper elaborates on this conceptualisation and the necessary safeguards for data subject rights that should accompany its adoption in the public sector, while reflecting on the limitations that it is likely to face in practice.
Barbara Prainsack (University of Vienna): "Solidarity-based data governance: What does it change in practice?"
Scholars have argued for a while that, in addition to strengthening people’s individual control over their data, we need better collective control and oversight. But what forms and shapes could such collective control and oversight take in practice? In this talk I will discuss (a) why I do believe that such instruments of collective empowerment are indeed necessary, and what purposes they serve, (b) what the key design principles of institutions and practices of collective control and oversight are, and (b) give an overview of existing examples of solidarity-based, collective data governance (such as data trusts) as well as newly proposed institutions (such as Harm Mitigation Bodies).
Stergios Aidinlis (University of Oxford; Trilateral Research): "Reconsidering the 'Public' / 'Private' Divide to Realise Societal Welfare in Data Access and Governance"
The relationship between the ‘public interest’ and ‘private interests’ under lawful grounds for data processing is often treated as a zero-sum game in data access and governance frameworks. This is all the more apparent in the post-C19 world, where individual decisions of public-sector data owners have been treated as authoritative assessments of what serves the ‘public good’, even if public health and other objectives heavily rely on public-private data sharing partnerships. Drawing on the UK and EU data protection legal frameworks, this paper interrogates this conventional, often rigidly observed, divide, arguing against it. A conceptualisation of the ‘public’ interest as not incompatible with private interests, as long as a contribution to societal well-being is made through data access, is offered in that regard. The paper elaborates on this conceptualisation and the necessary safeguards for data subject rights that should accompany its adoption in the public sector, while reflecting on the limitations that it is likely to face in practice.
Barbara Prainsack (University of Vienna): "Solidarity-based data governance: What does it change in practice?"
Scholars have argued for a while that, in addition to strengthening people’s individual control over their data, we need better collective control and oversight. But what forms and shapes could such collective control and oversight take in practice? In this talk I will discuss (a) why I do believe that such instruments of collective empowerment are indeed necessary, and what purposes they serve, (b) what the key design principles of institutions and practices of collective control and oversight are, and (b) give an overview of existing examples of solidarity-based, collective data governance (such as data trusts) as well as newly proposed institutions (such as Harm Mitigation Bodies).
28 October 2020 | 5pm (UTC +0) | Recording available HERE
Fiona Brimblecombe (UWE Bristol): "The right to be forgotten in theory"
The GDPR enshrines the 'right to be forgotten' but what does this mean in practice? High profile cases such as Google Spain have focused people attention on the internet giants, but the regulation applies to all personal data. Is this reflected in decisions about collection, retention, back up policies? What additional risk does working from home present?
In this public seminar Fiona Brimblecombe (Wallscourt Fellow at UWE Bristol) will discuss the legal issues around the right to be forgotten while Martin Hickly will explore some of the practical issues that organisations need to consider.
Martin Hickly (Indipendent Private Consultant): "The right to be forgotten in practice"
Martin is a leading Data Protection, Privacy & Governance Specialist with over 25 years’ of experience, currently working on two important apps, one a pregnancy support app that if successful will become the single largest repository of personal Health Care Data in Europe. He discovered the material mistake in the draft texts of the GDPR and has unique data protection and governance experience and knowledge having worked both sides, Regulator and Company.
Fiona Brimblecombe (UWE Bristol): "The right to be forgotten in theory"
The GDPR enshrines the 'right to be forgotten' but what does this mean in practice? High profile cases such as Google Spain have focused people attention on the internet giants, but the regulation applies to all personal data. Is this reflected in decisions about collection, retention, back up policies? What additional risk does working from home present?
In this public seminar Fiona Brimblecombe (Wallscourt Fellow at UWE Bristol) will discuss the legal issues around the right to be forgotten while Martin Hickly will explore some of the practical issues that organisations need to consider.
Martin Hickly (Indipendent Private Consultant): "The right to be forgotten in practice"
Martin is a leading Data Protection, Privacy & Governance Specialist with over 25 years’ of experience, currently working on two important apps, one a pregnancy support app that if successful will become the single largest repository of personal Health Care Data in Europe. He discovered the material mistake in the draft texts of the GDPR and has unique data protection and governance experience and knowledge having worked both sides, Regulator and Company.
14 October 2020 | 6pm (UTC +0) | Recording available HERE
Felix Ritchie (UWE Bristol): Presentation of "DRAGoN" Research Centre
Darian Meacham (BISS Institute, Maastricht University): "Down with Privacy, Long Live Privacy”
Privacy remains a central concern in deployment of data-sharing technologies. These concerns have been addressed in various ways, from glib “nothing to fear if nothing to hide” attitudes, to serious undertakings toward the development of privacy preserving technologies in federated learning environments (for example). Privacy is often understood in terms of a trade-off that citizens make in exchange for convenience or other forms of utility. In this presentation, I will look at the meaning of privacy in relation to informational asymmetry and governance. I argue that by examining this key concern through the lens of these related concepts, we can get a better grasp of what’s at stake in caring for privacy.
Felix Ritchie (UWE Bristol): Presentation of "DRAGoN" Research Centre
Darian Meacham (BISS Institute, Maastricht University): "Down with Privacy, Long Live Privacy”
Privacy remains a central concern in deployment of data-sharing technologies. These concerns have been addressed in various ways, from glib “nothing to fear if nothing to hide” attitudes, to serious undertakings toward the development of privacy preserving technologies in federated learning environments (for example). Privacy is often understood in terms of a trade-off that citizens make in exchange for convenience or other forms of utility. In this presentation, I will look at the meaning of privacy in relation to informational asymmetry and governance. I argue that by examining this key concern through the lens of these related concepts, we can get a better grasp of what’s at stake in caring for privacy.
