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