PM conference programme_2016.04.05_concise_Clean(Latest)

Dr Chih-Hsing Ho, Assistant Professor, Academia Sinica, Taiwan
From Bench to Bedside: Secondary Use of Health Data for Precision Medicine
Many biomedical projects have been relying on large consortia of repositories, such as networks of biobanks, to
increase the overall size of bio-samples and data for statistical significance. Nevertheless, the increasing need for
transmission and linkage of health data for secondary usage has brought new challenges to translational research.
The current models and privacy frameworks for the secondary use of health data focus predominately on
techniques and rules of anonymization or de-identification. These data-centric perspectives fail to adequately
address issues such as data control, access and sharing, all of which are imperative to data subjects in terms of
deciding how they would like their health information to be used for future research. This talk will investigate these
challenges, especially with regards to the secondary use of health data in precision medicine. It aims at proposing a
transparent and community-based data sharing model to improve the pitfalls of data-centric models for the
secondary use of health data in translational research.
Dr Stuart Hogarth, Senior Research Fellow, Department of Social Science, Health and Medicine,
King's College London
Lost on Planet Biomarker? Standards, Pathways, Carrots and Sticks for Diagnostic
Development in the Post-genomic Era
In this talk I will situate current debates about the development and regulation of molecular diagnostics in the
broader historical context of longstanding efforts to provide greater conceptual clarity and scientific rigour to
diagnostic research. I will offer some suggestions as to why repeated complaints of poor scientific standard and
calls for reform have had limited impact, review examples of recent initiatives championed by a variety of
institutional actors, and conclude by proposing that current developments may finally offer some hope of significant
and sustained change.
Dr Timo Minssen, Associate Professor of IP & Innovation Law, University of Copenhagen, Centre for
Information & Innovation Law
Lost in Translation? Opportunities & Risks of Increased Research & Clinical Trials Data
Transparency
Recent US and European initiatives reflect a growing policy consensus favoring greater clinical trials and research
transparency. New legislation, publishers and industry-driven projects promote independent verification of drug
data, which provides a better framework for international collaboration. Greater transparency also increases public
trust in research results, drugs and industry and the possibility of facilitating large cross-border clinical trials. Yet,
the costs and concerns associated with opening up research and clinical trial data are also significant—for patients
(protection of personal data and patient privacy), for research (misuse of clinical trial data) and for technology
transfer and commercialization (obstacles to IP protection and increased exposure to litigation). This presentation
will discuss these issues from an interdisciplinary perspective in order to sketch out legal mechanism that could be
useful for unlocking and safe-guarding the full potential of greater transparency.
PRECISION MEDICINE: LEGAL AND ETHICAL CHALLENGES 10