Forthcoming events are listed below. Webcasts are available for our Philosophy & Technology Seminar Series, which brings prominent and influential speakers to the Oxford Internet Institute in order to advance critical understanding of the conceptual nature and practical consequences of technologies, and to provide new ideas about their fruitful and sustainable developments.
Call for Papers for Philosophy & Technology’s special issue on Ethical Risk Assessment in Biomedical Big Data
Brent Mittelstadt, Oxford Internet Institute, University of Oxford
In biomedical research, the analysis of large datasets (Big Data) has become a major driver of innovation and success. ‘Biomedical Big Data’ (BBD) describes the complex and new set of technologically-driven phenomena focusing on analysis of aggregated datasets to improve medical knowledge, public health, clinical care and commercial health and well-being devices and services. Machine learning and algorithmic categorisation can increasingly make sense of the seemingly endless data emerging from sensors, wearable devices, clinical observations, clinical trials, social and online platforms which provide insight into the behaviours and physiology of individuals. BBD is expected to provide new ways of understanding health and well-being at the level of the individual and society, for example by predicting behaviours, monitoring diseases and outbreaks, and providing risk stratification for individual patients. Epidemiology, infectious disease research, and genomics and genetics are already deeply affected. However, the collection, storage and analysis of BBD potentially raises serious ethical problems which may threaten the huge opportunities it offers. To avoid foreseeable problems and react quickly to emergent issues, the planning and deployment of BBD must include proactive ethical risk assessment. To contribute to this critical step, this special issue of Philosophy and Technology aims to map new, under-researched but important issues, concepts and cases that should be considered in proactive ethical assessment of emerging BBD platforms and services.
We request the submission of research articles addressing topics including:
- Theories and concepts critical to the ethical assessment of biomedical Big Data in particular
- Required modifications to informed consent in response to the scale and complexity of BBD
- Alternatives to informed consent for BBD governance
- Group-level protections, harms and benefits
- Ethical principles for governance of BBD platforms
- Applicability of traditional medical research ethics principles to BBD
- Privacy, de-identification and research subject rights to data access
- Ownership of intellectual property generated from BBD
- Uses of BBD for empowerment or improvement of patient experiences
- Implications of data-intensive clinical experiences for the doctor-patient relationship
- Implications of the crossover between personal health devices and BBD research, e.g. Apple HealthKit
- Impact of the European General Data Protection Regulation on both biomedical research and personal health/wellness services
- Policy recommendations and requirements for poorly regulated BBD practices
- Empirical studies/cases of existing Big Data practices that demonstrate critical ethical issues, concepts and solutions
- October 17, 2016: Deadline for paper submissions
- December 16, 2016: Deadline reviews papers
- January 31, 2017: Deadline revised papers
- 2017: Publication of the special issue
To submit a paper for this special issue, authors should go to the journal’s Editorial Manager http://www.editorialmanager.com/phte/
The journal’s submission guidelines and instructions for authors can be found here.
Articles should be written in English and not exceed 10,000 words.
The author (or a corresponding author for each submission in case of co- authored papers) must register into EM.
The author must then select the special article type: “Special Issue on Ethical Risk Assessment in Biomedical Big Data” from the selection provided in the submission process.
All submissions are subject to double-blind peer review. Submissions will be assessed according to the following procedure:
New Submission => Journal Editorial Office => Guest Editor(s) => Reviewers => Reviewers’ Recommendations => Guest Editor(s)’ Recommendation => Editor-in-Chief’s Final Decision => Author Notification of the Decision.
For any further information please contact:
Brent Mittelstadt firstname.lastname@example.org
Ethical Risk Assessment in Biomedical Big Data
Please register via the event website.
In biomedical research, the analysis of large datasets (Big Data) has become a major driver of innovation and success. ‘Biomedical Big Data’ (BBD) describes the complex and new set of technologically-driven phenomena focusing on analysis of aggregated datasets to improve medical knowledge, public health, clinical care and commercial health and well-being devices and services. Machine learning and algorithmic categorisation can increasingly make sense of the seemingly endless data emerging from sensors, wearable devices, clinical observations, clinical trials, social and online platforms which provide insight into the behaviours and physiology of individuals. BBD is expected to provide new ways of understanding health and well-being at the level of the individual and society, for example by predicting behaviours, monitoring diseases and outbreaks, and providing risk stratification for individual patients. However, the collection, storage and analysis of BBD potentially raises serious ethical problems which may threaten the huge opportunities it offers.
The Oxford Internet Institute, in association with the Brocher Foundation, will be hosting an two-day symposium, bringing together expertise from academia, medicine, industry and the non-profit sector to assess the ethical risks posed by a number of emerging Big Data applications. Risk assessment is an important step in understanding the potential impact (effects and consequences) of any emerging technology. Applications across a variety of research, clinical and commercial domains will be analysed, including biobanking, public health surveillance, outbreak monitoring, digital epidemiology, behaviour tracking and profiling, and other types of biomedical research.
The symposium will focus on in-depth assessment of real-world cases presented by experts across the aforementioned disciplines, with an aim to constructing a map of ethical risks pertinent to emerging biomedical Big Data applications.
Sara Belfrage – Karolinska Institute
Soren Brunak – University of Copenhagen
Glenn Cohen – Harvard Law School
Mike Denis – University of Oxford
Ronan Lyons – University of Swansea
Brent Mittelstadt – University of Oxford
Mark Phillips – McGill University
Barbara Prainsack – King’s College London
Bernd Carsten Stahl – De Montfort University
Effy Vayena – University of Zurich
Kristin Voigt – University of Oxford
Eva Winkler – University of Heidelberg
Speakers and attendees will be invited to submit articles and case studies to a special issue of Philosophy & Technology on ethical risk assessment in Biomedical Big Data.
Dr. Brent Mittelstadt and Prof. Luciano Floridi, University of Oxford
The symposium will be hosted by the Brocher Foundation at their conference centre on the shores of Lake Geneva in Hermance, Switzerland.
A registration fee of 150 CHF is applicable, and can be paid via the registration website.
14-15 March 2016
Sara Belfrage – Karolinska Institute – What do people find important in the privacy protection of their digital healthcare data?
This talk will report on a project that investigates what people – patients and members of the public at large – value when it comes to protecting the privacy of their digital healthcare data. In a series of focus group interviews with Swedish psychiatry and cardiology/multimorbidity patients as well as members of the public we have asked questions about the value and meaning of privacy, the value of privacy in relation to the use of their data for different purposes and in different ways, and how they would like the privacy protection of their data to be setup. Based on these interviews and findings in the literature, a questionnaire (a so called Discrete Choice Experiment) is constructed. In my talk I will present and discuss the findings of the group interviews in light of the previous literature overview, and show how the results have been operationalised in the questionnaire now being reviewed by an ethics committee.I will outline the reasons behind the strong disagreements on this matter and give an overview of what patient health data that exist, where they are, and how they can be accessed. I will also describe the purposes for which these data are used and review the potential threats to privacy. Finally, I will discuss what such threats to privacy may entail for individuals and society at large.
Soren Brunak – University of Copenhagen – Creating disease trajectories from big biomedical data covering millions of patients
Based on the availability in Denmark of longitudinal data covering long periods of time we aim for suggesting new phenotype definitions based on temporal analysis of clinical data in a more life-course oriented fashion. We use an unbiased, national registry with 7 million alive and deceased patients to construct disease trajectories which describe the relative risk of diseases following one another over time. We show how one can “condense” millions of trajectories into a smaller set which reflect the most frequent and most populated ones. Trajectory maps may subsequently be combined with other data types, including genomic or proteomic screens.
I. Glenn Cohen – Harvard Law School – Big Data, Predictive Analytics in Health Care, and Research Ethics
This talk will discuss attempts to harness big data for creating predictive analytics models for us in health care allocation, decision-making, and delivery. I will discuss legal (U.S.) and ethical issues in the harnessing of data to build models, validation of models, and deployment of the models.
Mike Denis – University of Oxford – Using digital health to put patients in control of their health experience
The health care system is now embarked on radical service transformation in order to deliver better outcomes and greater efficiency. The role of the active and empowered patient will be critical to meeting this challenge. In the future there will be a digital component to every aspect of a patients interaction with their health care environment. Patients will not only receive correspondence electronically, engage in virtual consultations but will become co-designers of their care plans.These patients will be using digital devices to operate in all areas of their lives.
Ronan Lyons – University of Swansea – Protecting privacy through design
The health of the people is the highest law”. Research using large scale linked biomedical and social data is an essential requirement in developing and guiding interventions, services and policies to support health. Consideration of the potential benefits and harms of research and the rights and responsibilities of citizens and the research community is an important component of ethical risk assessment in the era of Big Data. Integrating multi-sourced data poses risks to privacy protection. However, careful consideration of these issues has led to privacy protecting research designs and infrastructures that enable such research to be undertaken in an ethical manner. This presentation will outline these developments.
Brent Mittelstadt – University of Oxford – The Duty of Group Privacy in Biomedical Big Data
This talk will consider the case to reconceive of privacy in theoretical and legal domains as a concept applicable and enforceable to (ad hoc) groups, whose formation is inevitable in emerging Big Data anlytics. Group privacy is considered as a ‘third weight’ to balance individual privacy rights and social, commercial and epistemic benefits of biomedical data processing.
Mark Phillips – McGill University – Data privacy law in the post-deidentification world
Data privacy law has struggled to remain relevant in the rapidly evolving digital research landscape of cloud computing and Big Data. The legal requirements for consent to research and the acceptability of “de-identifying” genomic data, for example, remain unclear twenty years after the drafting of the EU Directive 95 and the US HIPAA. With new data privacy laws within sight, it is critical that these laws appropriately address the techniques for processing data and protecting privacy that are emerging now that traditional de-identification techniques have proven to be insufficient.
Barbara Prainsack – King’s College London – Does solidarity have a role in ethical risk assessment?
Alena Buyx and I have argued and illustrated recently that a solidarity-based approach can lead to significant improvements of database governance models (Prainsack & Buyx 2013; Prainsack & Buyx, in press). In a nutshell, a solidarity-based governance approach abandons the idea that individual control at every step of the process is the overarching goal. Instead, when specific criteria are met, it replaces such focus on individual control with consent to a research mission and governance scheme. It has specific implications for practice, ranging from changes to the consent process to the creation of a ‘harm mitigation fund’. The latter realises the commitment that, if we assume that solidaristic contributions of information to databases regularly entail that people accept certain risks, we need to ensure that if harm occurs, people are not left alone to mitigate or rectify that harm. In my presentation I will use a communal ubiquitous data capture initiative as a case study to show how a solidarity-based approach influences risk assessment in a concrete setting. I will argue that one of the main effects of a solidarity-based approach is that it overcomes the unproductive dichotomy between personal and common benefit. Instead of a focus on technical aspects such as informed consent or a conceptual focus on individual autonomy, a solidarity-based approach shifts our attention to shared societal benefit and shared societal responsibility, and approaches privacy and data protection as both collective and personal goods. At the same time it brings political concerns to the foreground of risk assessment, such as the structural power asymmetries that data collection and data use are embedded in.
Bernd Carsten Stahl – De Montfort University – Ethical Risks in Human Brain Simulation: The Practice of Ethics Management in the Human Brain Project
It has long been established that information and communication technologies can raise ethical issues. Big data can exacerbate these concerns. When big data is applied to biomedical research, then many of the traditional bioethical issues enter the mix. Despite much theoretical attention, there is relatively little guidance on how to practically identify and address these issues. In this paper I will discuss how the challenges are met by the Human Brain Project (HBP). The project has a sub-project dedicated to responsible research and innovation which contains an ethics management unit. This unit has developed a number of processes to interact with researchers to ensure all pertinent issues are highlighted. Our experience from the HBP suggests that the complexity of the issues and their local and contextual expression negates the possibility of an a priori and top-down way of dealing with them. Instead, an open, inclusive and discursive approach will be presented that is more likely to ensure buy-in from the researchers and allow the incorporation of external views in an ongoing process of reflection, engagement, anticipation and action.
Effy Vayena – University of Zurich – Risk-benefit assessment in big biomedical data: Reassessing concepts and mechanisms
Big Data comes with a big promise for society; this holds particularly true for biomedicine. However, a broad social consensus about what is desirable and permissible and where the limits of data-driven research should be set has yet to emerge. In this paper I argue that part of the problem rests in the difficulty to assess the risks and benefits from big biomedical data uses. In particular I examine in what ways they differ from other kinds of risk and benefits in biomedical research; why the assessment in itself may be different and whether standard ethics review committees are best placed to conduct that kind of assessment.
Eva Winkler – University of Heidelberg – Minimal or Greater than Minimal Risk? How Research Participants and Physicians Assess Data-Sharing in Genomics – empirical data and normative implications
First I will give an overview of the promises and normative issues raised by genomic data sharing. Against this background I will present the empirical data from a focus group study on cancer patients’ and physicians’ attitudes and evaluations of the risks that come with data sharing – especially the risk of re-identification and potential abuse of unauthorized third parties. In a third part I will explore the normative implications of these results for adequate governance, but also the question how to conceive minimal and greater than minimal risk of data sharing.
Kristin Voigt – University of Oxford – Big data, social inequalities in health and primary care
The influence of social factors on individuals’ health outcomes and the substantial health inequalities that result from these effects have become a pressing concern for policy-makers across the world. It has been argued that ‘big data’ create opportunities to reduce these inequalities more effectively. This talk examines some of the conceptual and normative challenges raised by using big data to address health inequalities by focusing on a particular proposal for using big data to address health inequalities: that information about patients’ communities, neighbourhoods and social context (as derived from their address) should be integrated into their health records and made available to health care professionals alongside individuals’ medical history when they access primary care.
Workshop: Understanding the Responsibilities of Online Service Providers in Information Societies
Oxford Internet Institute, Friday 2 October 2015, 09:00 – 18:00
This is a one day workshop to discuss online service providers in information societies.
In contemporary information societies Online Service Providers (OSPs) – such as for example AOL, Apple, Dropbox, Facebook, Google, LinkedIn, Microsoft, Twitter, and Yahoo! – are major actors, which significantly influence the informational environment and users’ interactions within it. Such a role is unprecedented and problematic for OSPs as well as for other stakeholders, like governments and citizens’ groups.
The need to understand the responsibilities that OPSs bear in contemporary information societies is thus fast escalating and addressing it requires a coordinated interdisciplinary theorising able to consider legal, social, and ethical standpoints. The workshop will be a major occasion to gather leading experts from different fields in order to share information and views. Contributions to the workshop will address issues concerning:
- The role of OSPs in contemporary information societies, whether and to what extent their role differs from the one of publishers, mass-media, and gate-keepers;
- The moral responsibilities of OSPs in contemporary societies;
- Ethical frameworks for the understanding of OSPs responsibilities, e.g. corporate social responsibilities or human rights;
- The gap in OSPs’ policies and possible strategies to overcome it;
- The gap in existing legal frameworks regulating OSPs.
Call and Edited Volume
500-word abstracts (MS Word or PDF format) should be submitted to Dr Mariarosaria Taddeo by August 1, 2015. All submitted abstracts will be reviewed by the workshop organizers, Professor Luciano Floridi and Dr Mariarosaria Taddeo, and authors will be notified of the outcome by August 17, 2015.
Authors of the accepted abstracts will be invited to participate in the workshop and to submit a full paper by November 2, 2015, for peer-review and publication in a dedicated edited volume.
Dr Mariarosaria Taddeo email@example.com
Conceptual Hackathon: ‘Tech-tonic Plates’
Oxford Internet Institute, Thursday May 14, 2015 17:00 to 18:00 – Open to all OII students and staff.
Code isn’t the only thing worth hacking. Our information technologies also depend on the philosophical and ethical architectures that shape their design, deployment, and analysis. What if we could ‘hack’ these conceptual layers in a similar way? What would it look like to innovate them quickly, collaboratively, and even semi-chaotically? What new ways of thinking about familiar issues might emerge?
We’d like to find out — and we’d like you to join us. The first ‘conceptual hackathon’ (hosted by the newly formed Ethics and Philosophy of Information Cluster) will take place on May 14th at 5:00 pm in the first floor meeting room at 1 St Giles. Broadly, we envision these ‘hackathons’ as places where you can informally surface your hunches, inklings, half-formed thoughts, mental blocks, etc. to likeminded peers for creative conversation that can help you move your research forward. If all goes well, we plan to make it a regular occurrence (2-3 per term).
For the first hackathon, the theme will be ‘Tech-tonic Plates’ — i.e. those influences that have most fundamentally and profoundly shaped the way you view technology. If you’d like to come, please bring (or just be prepared to talk about) a cultural artefact that represents one of your own ‘tech-tonic plates.’ (This could be anything — a book, article, painting, movie, album, personal anecdote etc. — as long as your perspective on technology wouldn’t be nearly the same without it.) The event is open to all staff and students of the Oxford Internet Institute (although spaces will be limited). We’re aiming for a very interactive session, so please come prepared to talk!
Workshop: Ethics of Biomedical Big Data
Oxford Internet Institute, Monday April 27, 2015
This workshop will bring together expertise from academia, medicine and industry to address emerging challenges in the field, and the requirements for a European framework for ethical usage of biomedical Big Data.
In biomedical research, the analysis of large datasets (Big Data) has become a major driver of innovation and success. Epidemiology, public health and infectious diseases research, biobanks, genomic and microbiome sequencing are already deeply affected by Biomedical Big Data, alongside emerging forms of commercial collection and self-curation of medical data (e.g. health ‘apps’, online health records, wearable computing). However, the collection, storage and analysis of this data potentially raises serious ethical problems, which may threaten the huge opportunities it offers. Recent movement from the NHS to further share patient data (care.data) and related data sharing throughout Europe make addressing these problems in the near term very pressing.
To address these and similar questions the Oxford Internet Institute will host a workshop on April 27, 2015 as part of the ‘Ethics of Biomedical Big Data‘ project. The workshop will bring together expertise from academia, medicine and industry to address emerging challenges in the field, and the requirements for a European framework for ethical usage of biomedical Big Data. The workshop aims to address questions such as:
- What are the unique ethical challenges of biomedical Big Data?
- What does the ethical landscape look like beyond issues of informed consent and privacy?
- How should collection, sharing and re-uses of biomedical Big Data be regulated?
- Which existing and prospective Big Data practices are particularly problematic or require further analysis/regulation?
- How can we develop an ethically sound framework for using Big Data in biomedical researchas well as commercial applications at a European level?
- What lessons can be learnt from previous or different experiences in applied ethics that could help in dealing with the new challenges posed by Big Data in biomedical research?
Although a closed workshop, video recordings of several talks are available via the Institute’s website. Proceedings will be published in an edited volume entitled ‘The Ethics of Biomedical Big Data’ in Springer’s Law, Governance and Technology book series. Selected papers from the workshop will be included alongside submissions from an open call for chapters, closing on April 15, 2015.
Biomedical Big Data: Challenges and Opportunities – Luciano Floridi, University of Oxford
Problems of Context and Abstraction in Big Data – Brent Mittelstadt, University of Oxford
Re-conceiving Biological Samples as Information Carriers – Paul de Hert, Vrije Universiteit Brussel & Dara Hallinan, Fraunhofer Institute for Systems and Innovation Research ISI
Big Data Analytics, Correlation and Inference in Health Care and Beyond: Challenges to Existing Privacy and Public Policy Paradigms – Joseph Alhadeff, Oracle
Big Data – Big Governance – Jane Kaye, University of Oxford
A Solidarity-based Perspective on Data-rich Medicine – Barbara Prainsack, King’s College London
Big Data, Broad Consent: Ethical Challenges in Rare Disease Genomics – Simon Woods, Newcastle University
Innovation, Big Data and Placebo Effect: The Case of Antidepressant Trial – Andrea Cipriani, University of Oxford
The Challenges of Intensified Data Sourcing in a Research Radical Country: The Case of Denmark – Klaus Hoeyer, University of Copenhagen