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Genetic data in public research databases

​Genetic data in public research databases: Which governance mechanisms should apply?​

April 27-28, 2016, EURAC Bolzano Italy


Scientific Committee

Deborah Mascalzoni, Isabelle Budin Ljøsne, Heidi Beate Bentzen

Workshop objectives:

This workshop aims to:

  1. explore ethical and legal challenges that may arise when researchers are required to deposit genetic and genomic research data in public research databases
  2. investigate governance mechanisms that may support ethically and legally compliant data deposit

Data sharing is necessary to facilitate research on genetic and molecular mechanisms underlying disease. Increasingly, research funders encourage or require that researchers deposit their data (including genotype, phenotype and raw sequence data) in public research databases. The data can then potentially be used for an unlimited number of privately or public-funded research projects, nationally and internationally. Data sharing requests may in some cases be designed as a trade-off. For instance, the funder may agree with a biobank to sequence biological samples at no cost if the data produced are stored in a public research database. Such agreements can be appealing for institutions battling with funding shortages.

Current governance mechanisms and consent procedures primarily rely on the assumption that researchers are able to keep track of how their data is shared and used at any point in time. However, if the data is deposited in public research databases where the original body loses control over data uses, this may mean that the researchers may not be able to satisfy such obligations and that current governance mechanisms are no longer suitable to protect participants' rights.

Are there mechanisms that may support data sharing while promoting better transparency and accountability? How can the ELSI community contribute to develop such mechanisms? National authorities, funding bodies, research database representatives, and legal and ethical researchers will be invited to explore and address these issues during the workshop. ​

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Program at a glance

Day 1 – Conference​

09.00 – 10.50
Session 1 – Views on genetic data sharing through public research databases

10.50 – 11.10
Coffee break

11.10 – 15.10
Session 2 – Public genetic research databases: What is the legal landscape?

13.10 – 14.10
Lunch

14.10 - 15:10
Panel discussion on the legal issues

15.10 - 15.30
Coffee break

15.30 – 18.00
Session 3 – Public genetic research databases: Ethics and policy

16.50 – 17.05
Coffee break

17.05 - 18.00
Panel discussion on the ethical aspects and governance mechanisms

19.30
Social dinner​

Day 2 – Expert meeting: Developing strategies  

For CHIP ME members and speakers only

09.00-12.30
Round table discussion

12.30-13.30
Lunch

CHIP ME participants may want to have separate meetings in the afternoon after lunch. Rooms will be available for the working groups.

Click here to download the full p​rogram

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Registration

Click here to register

CHIP ME members: no registration fee (including social dinner and conference materials/breaks/lunch)

Non CHIP ME members: 40€ - (The registration fee includes the conference material, the participation on the conference as well as coffee breaks and lunch during the conference day.)

Participation at the social dinner: 40€ -

Accomodation

Click here ​to have a look at our partner hotels or visit the official website of Bolzano with more accommodations in and around Bolzano-

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Contacts

For questions concerning the scientific program please contact:

Deborah Mascalzoni - EURAC Center for Biomedicine: Deborah.mascalzoni@eurac.edu, Phone: +39 0471 055513

Uppsala University: Deborah.mascalzoni@crb.uu.se


For other questions please contact:

Verena Zublasing - EURAC Meeting management: Verena.zublasing@eurac.edu, Phone: +39 0471 055042

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Sponsors

CHIP ME, Uppsala university, EURAC Center for Biomedicine

 

 
COST is supported by the EU Framework 
Programme Horizon 2020

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