Slides from the Pistoia Alliance Debates webinar on 21st May, on the ethics of big data research in pharma R&D.

1. 21 May, 2015
Ethics Considerations for Big Data
Initiatives in Biopharma R&D
a Pistoia Alliance Debates webinar
chaired by David Fritsche

2. This webinar is being recorded

3. ©PistoiaAlliance
Panellists
Ethics Considerations for Big Data Initiatives in Biopharma R&D 321 May, 2015
Jennifer E. Miller, Assistant Professor, NYU Langone Medical School, Fellow, E.J. Safra
Center for Ethics, Harvard University
Dr. Miller is a Fellow in the Edmond J. Safra Center for Ethics at Harvard University and the
George C. Lamb, Jr. Regulatory Fellow with the Kenan Institute for Ethics at Duke University.
She is also an Assistant Professor in the Division of Medical Ethics at NYU Langone Medical
Center. Previously, she was a fellow and taught in Fordham University’s Graduate School of
Business. She also served as a visiting lecturer in Columbia University’s Bioethics and Cross
Cultural Education Program (BIOCEP). She completed her PhD studies in Bioethics at Regina
Apostolorum and holds a BS in physics from Fordham University. Her interdisciplinary
scholarship has been complimented by strong public service, including serving as a steering
committee member for the US Taskforce on Pediatric Emergency Mass Critical Care under the
US Centers for Disease Control & Prevention (CDC, 2009-2011), as a special consultant to the
United Nations ECOSOC, on the AMA’s National Disaster Life Support Education Consortium,
and as the founder of the nonprofit Bioethics International.
Dr. Brent Mittelstadt, Research Fellow, Oxford Internet Institute, University of Oxford
Brent is currently working on the ethics of biomedical Big Data with Prof. Luciano Floridi. His
research background focuses on ethical theory, applied ethics and interdisciplinary empirical
research in computer ethics and medical ethics, including a thesis on the ethical implications of
personal health monitoring devices, in particular how they may undermine 'internal goods' of
medicine understood as a virtuous moral practice. His immediate research interests lie in the
social and ethical implications of emerging forms of medical ICT and biomedical data mining,
including governance and social discourses concerning their development, deployment and
regulation, and the limitations of ethical foresight due to uncertainty.
Dr Pete Mills, Assistant Director, Nuffield Council on Bioethics
Peter is currently working on the ethics of emerging biotechnologies and privacy in the era of big
data. From 2007 to 2010 Peter was Head of Human Genetics and Bioethics at the UK
Department of Health. As well as heading the secretariat for the Human Genetics Commission,
the UK Government's independent advisory body on the implications of developments in human
genetics, Peter has also represented the UK government at the UNESCO Intergovernmental
Bioethics Committee (IGBC) and the Council of Europe Steering Group on Bioethics (DH-BIO,
formerly CDBI). Before moving to the Department of Health, Peter led a number of high-profile
policy initiatives at the Human Fertilisation and Embryology Authority, concentrating on ethical,
legal, and psychosocial aspects of developments in assisted conception and human embryo
research. Peter read Philosophy, Politics and Economics at Trinity College, Oxford, and went on
to receive a Ph.D. in Philosophy from the University of Warwick.

4. ©PistoiaAlliance
Context
Ethics Considerations for Big Data Initiatives in Biopharma R&D 421 May, 2015
• Implications for informed consent, and how to
ensure data usage is compliant with it
• Growing risks of re-identification of de-identified
patient data
• Challenges of cloud based platforms for
ensuring privacy across country jurisdictions
• Permanence, transience, and the right to be
forgotten in an increasingly interconnected world

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The Nuffield Council on Bioethics’ question
Ethics Considerations for Big Data Initiatives in Biopharma R&D 521 May, 2015
“How may we determine
a publicly statable set
of morally reasonable
expectations about the
use of data in a data
initiative?”
www.nuffieldbioethics.org/project/biological-health-data/

6. ©PistoiaAlliance

7. ©PistoiaAlliance
Slides from Jennifer Miller
5/21/2015 Problems of Context and Abstraction in Big Data Page 7

8. Panellist debate

9. Audience Q&A
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10. Printing therapeutic nanobots:
Nanoscale 3D-printing in
pharmaceutical R&D
Join us for the next Pistoia Alliance Debates webinar,
Thursday 18th June @ 4-5pm UK
https://attendee.gotowebinar.com/register/8450220015769773057

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