TMF-Veranstaltung

Sharing and Publishing of Human (Gen)Omics Data (Berlin)

Workshop Best Practice

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TMF Office

The workshop jointly organized by TMF and e:Med will take place on 08./09. June 2016 and highlight the current challenges and best practices of publishing and sharing sensitive patient-related Omics data.

 

Programme details:

Since the 1980s, both funding agencies and biomedical publishers have either recommended or demanded that nucleotide and proteinsequence data be deposited in public databases at, for example,NCBI, EBI or DDBJ.

Making research data publicly available has since been regarded as part of good scientific practice in that it allows for more transparency, reproducibility and sharing of these valuable resources.

In the aftermath of the Human Genome Project (2004), new methodologies such as GWAS and the various Omics technologies, including Next Generation DNA Sequencing, have arisen in biomedical research that generate huge amounts of sensitive data (genotype-phenotype relationship) in a very cost- and time-efficient manner.

At the same time, it has become generally accepted that extensive sharing of these data among researchers will further improve our understanding of the mechanisms of individual disease susceptibility, progression and prognosis.

The workshop jointly organized by TMF and e:Med will highlight the current challenges and best practices of publishing and sharing sensitive patient-related Omics data.

These topics are becoming increasingly relevant, not only to patients and researchers themselves, but also to regulatory bodies, funding agencies, biotech industry and biomedical publishers. 

The following issues will be covered:

  • Data sharing within and beyond scientific research consortia   
  • Publishing Sensitive (Gen)Omics Data and Respectful Sharing
  • State of the Art Open Issues in the e:Med Consortia

Anmeldung

Venue:

TMF Office
Charlottenstraße 42/Dorotheenstraße
10117 Berlin

  1. Directions
  2. Special offer by Deutsche Bahn for your arrival (information in German only)

Contact:

Dr. Karin Greulich-Bode
e:Med Managing Office
c/o Deutsches Krebsforschungszentrum - DKFZ
Phone: +49 6221 42-4767 | E-Mail 

Dr. Roman Siddiqui
TMF Office
Phone: +49 30 - 22 00 24 752 | E-Mail

Registration:

 Please note that attendance will be free of charge, nevertheless registration is mandatory:

  1. Registration form
2016-06-08T00:00:00 - 2016-06-09T00:00:00

The topic

There will be room for discussion around problems and challenges in Data Security and Ethics in systems medicine.

The conference

The workshop is intended as an information platform as well as for intense exchange on the issues mentioned above.

The hosts

The workshop will be hosted by TMF in cooperation with e:Med. 

Programme

Wednesday

1 pm

Welcome address & introduction

Michael Krawczak
University Medical Center Schleswig-Holstein, Campus Kiel
Roman Siddiqui 
TMF, Berlin

1:15 pm

Data Sharing within and beyond scientific reseach consortia

Chairs: 

Christoph Schickhardt 
NCT Heidelberg
Ulrich Sax
University of Göttingen

Internal sharing, authorship and reward policies

Challenges of research governance at the international level
Mahsa Shabani 
KU Leuven, Belgium

External sharing of research data

Data sharing before and after project completion
Heidi Schuster 
Max Planck Society, Munich,
Thomas Pickardt 
Competence Network for Congenital Heart Defects, Berlin

Patient right of withdrawal

How to comply with the right of withdrawal in research practice
Gunthard Stübs 
University of Greifswald, National Cohort,
Jürgen Eils & Chris Lawerenz 
DKFZ, Heidelberg

Discussion of Session Results

3:45 pm

Coffee Break

4:15 pm

Publishing sensitive (gen)omics data and respectful sharing

Chairs: 

Michael Krawczak 
University Medical Center Schleswig-Holstein, Campus Kiel 
Roman Siddiqui 
TMF, Berlin

The role of author guidelines and global trends in balancing medical research and privacy protection

Gregory Paul Copenhaver 
PLoS Genetics, USA

Publishing sensitive data: Hands-on experience

How to put guidelines and policies into practice
Thomas Pickardt 
Competence Network for Congenital Heart Defects, Berlin, 
Jürgen Eils & Chris Lawerenz 
DKFZ, Heideberg

The databases’ point of view

Dylan Spalding 
EMBL-EBI, Hinxton, UK; European Genome-phenome Archive, EGA

Discussion of Session Results

7 pm

Informal get-together with wine & cheese

Thursday

9 am

Welcome address & introduction

Christoph Schickhardt 
NCT Heidelberg
Ulrich Sax
University of Göttingen

9:15 am

State of the Art and Open Issues in the e:Med Consortia

Chairs: 

Christoph Schickhardt
NCT Heidelberg
Ulrich Sax
University of Göttingen

The upcoming EU General data protection regulation

Boris Reibach
University of Oldenburg

The EU-US privacy shield and the transfer of pseudonymized clinical research data to the USA

Uwe W. Fiedler 
PAREXEL International, Berlin

11:15 - 11:30 am

Coffee Break

The TMF generic data protection models: Standard Data Privacy Model (SDM)

Irene Schlünder 
TMF, Berlin

12:30 - 1:30 pm

Lunch Break

Inappropriate consent documents of old bio material donations:

Issues around legacy samples and data (‘legacy consent’)
Kai Cornelius 
University of Heidelberg / EURAT
Michael Hummel
Charité Berlin

2:30 pm

Wrap-up & future directions

Christoph Schickhardt 
NCT Heidelberg
Ulrich Sax 
University of Göttingen

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