International conference “Individual and social use of genetic and e-health databases. Duties of researchers, rights of participants”

“Individual and social use of genetic and e-health databases. Duties of researchers, rights of participants.”

Tartu, Estonia
Wednesday, 31st October 2012
Dorpat Conference Center


The conference is organised by the Centre for Ethics, University of Tartu and the Estonian Genome Center, University of Tartu with the support of the Estonian Genome Center’s 7th FP REGPOT grant “OPENGENE” and Estonian Ministry of Education and Research grant “Value Development in Estonian Society 2009-2013”.

Large databases of medical records and biobanks of genetic (and other) information are by now a common feature of health care and research systems in many countries. Traditionally the clinical, research and public health approaches to the uses of such data have been distinct. But increasingly it is impossible to draw such boundaries between clinical, research and public health needs and purposes.

Tissue banks in hospitals collected for clinical purposes are made available for research, e-health databases for medical records are set up with the hope that they will be beneficial not only for individual diagnosis and treatment but also for social uses – research, quality control, and planning of healthcare provision. Genetic database projects are moving towards supporting the idea that feedback should be given to participants.

At the conference these different individual and social uses will be brought into focus and the increasingly dynamic boundary between clinical use, research and public health will be investigated.

Our conference aims to study the implications of these developments and reflect upon possible answers to the following questions:
• Is it possible, or indeed desirable, to hold on to the separate ethical frameworks for the distinct uses of databases and biobanks? Why/not?
• Is there a need for the reconciliation between the universalistic principles of medical ethics and the context-sensitive approaches to bioethics in relation to biobanks and other databases?
• What has happened to the traditional boundary between individual vs social purposes of databases?
• How are the inevitably conflicting values (e.g privacy, autonomy, solidarity) to be reconciled in these debates?
• What are the reasons for providing feedback? What interests are at stake? Is it reasonable to defend a moral right not to know? Who should decide whether feedback is given? What is valuable information and what is the best way of communicating it?

Programme
8.30 – 9.00 Registration
9.00 – 9.30 Welcome address – Margit Sutrop (Centre for Ethics, University of Tartu)

Individual and social uses of genetic and e-health databases
9.30 – 10.30 Alastair V. Campbell (National University of Singapore, Singapore) “The individual and social uses of genetic databases“
10.30 – 11.30 Madis Tiik (The Finnish Innovation Fund Sitra, Finland), “Preconditions for successful e-health implementation“
11.30 – 12.30 Paula Boddington (University of Oxford, UK), “Philosophical accounts of the value of data and data access“

The return of individual research results: a duty or a challenge?
13.30 – 14.30 Mats G. Hansson (Uppsala University, Sweden) “Individual interests in association with biobank research. Personalized medicine and incidental findings“
14.30 – 15.30 Kris Dierickx (KU Leuven, Belgium) “Biobanks and the return of individual research results: the case of children“
16.00 – 17.00 Sheelagh McGuinness (University of Birmingham, UK) “Feedback – mandatory or meritorious? Establishing the legal duties of researchers“

17.00 – 18.00 Margit Sutrop, Kadri Simm, Kristi Lõuk (University of Tartu, Estonia) “Shifting values and dynamic boundary between clinical, research and public health ethics?“

Slides
Sutrop, Simm, Louk.pdf
Sheelagh McGuinness.pdf
Paula Boddington.pdf
Mats Hansson.pdf
Madis Tiik.pdf
Kris Dierickx.pdf
Alastair V Campbell.pdf

Please register before October 27, 2012.
Registration form
Registration is mandatory. Participation is free of charge.
Additional information about the conference: eetikakeskus [at] ut.ee