Where there is a will there is a way! Erkki Leego – Managing Partner (1/9) Challenge of Secure...
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Challenge of Secure Biodata Handling − Estonian Genome Project / BITT 2007 / 19.04.07 Where there is a will there is a way! Erkki Leego – Managing Partner (1/9) Challenge of Secure Biodata Handling − Estonian Genome Project Erkki Leego CIO Estonian Genome Project, University of Tartu
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Transcript of Where there is a will there is a way! Erkki Leego – Managing Partner (1/9) Challenge of Secure...
Challenge of Secure Biodata Handling − Estonian Genome Project / BITT 2007 / 19.04.07
Where there is a will there is a way!
Erkki Leego – Managing Partner
(1/9)
Challenge of Secure Biodata Handling − Estonian Genome Project
Erkki LeegoCIOEstonian Genome Project, University of Tartu
Challenge of Secure Biodata Handling − Estonian Genome Project / BITT 2007 / 19.04.07
Where there is a will there is a way!
Erkki Leego – Managing Partner
(2/9)
Background of presenter
• Last 10 years– MSc Informatics– Office of the President of Estonia, Information
councillor– Estonian Parliament, Head of IS and Technology
department– Tartu University Hospital, IT director
• Currently– Hansson, Leego & Partner, Managing Partner
• IT services and data security coordination and consultation
– Estonian Genome Project, University of Tartu, CIO
Challenge of Secure Biodata Handling − Estonian Genome Project / BITT 2007 / 19.04.07
Where there is a will there is a way!
Erkki Leego – Managing Partner
(3/9)
Estonian Genome Project
• Idea– Database of the phenotype and genotype data of the
Estonian population– Up to 100,000 samples in the database within the
next four years– Creation of the database is regulated by the Human
Genes Research Act
• Goals– To create a population based collection of health
care status descriptions and tissue samples– To carry out scientific research in order to find the
genes that cause and influence common diseases– To implement in public health the new knowledge of
genomics research
Challenge of Secure Biodata Handling − Estonian Genome Project / BITT 2007 / 19.04.07
Where there is a will there is a way!
Erkki Leego – Managing Partner
(4/9)
Data to protect
• Health and genealogy data
• Personal data and consents
• Bio samples and genetic information
Challenge of Secure Biodata Handling − Estonian Genome Project / BITT 2007 / 19.04.07
Where there is a will there is a way!
Erkki Leego – Managing Partner
(5/9)
Data and sample collection
Communication server
Data collector IS
Reports tools
Coding center I S
Genome database
Laboratory IS
Courier
Cryo Preservation - MAPI
Monitoring
Filled questionnairesPersonal data, health data, genealogy data.
Consent. Transportation code.
Con
sen
t (paper fo
rm).
Bio
logica
l sam
ple
s.
Coding center
Memory stick
Converter
Health data. Genealogy data.
Consent forms. Questionnaires.
Receptionist
New barcode
High security area
Challenge of Secure Biodata Handling − Estonian Genome Project / BITT 2007 / 19.04.07
Where there is a will there is a way!
Erkki Leego – Managing Partner
(6/9)
Challenges
• Ensure confidentiality– Separate personal data– Anonymous health, genealogy and genome data– Right to know and right to not know
• Ensure integrity– Keep record of encoding and decoding– Quality and security control– Possibility to withdraw consent at any time and to destruct
data
• Ensure availability– Data for research - anonymous genealogy, health and
genome data– Data access by Third Parties (authorities, insurance,
employers, ...)
Challenge of Secure Biodata Handling − Estonian Genome Project / BITT 2007 / 19.04.07
Where there is a will there is a way!
Erkki Leego – Managing Partner
(7/9)
Future challenges
• 100 000 gene donors (currently 10 400)
• Linkage to national and local health IS’s
• Flexible data usage for researchers
Challenge of Secure Biodata Handling − Estonian Genome Project / BITT 2007 / 19.04.07
Where there is a will there is a way!
Erkki Leego – Managing Partner
(8/9)
Conclusions
• Great opportunities for researchers
• High security demands for genome database
• Challenge – availability and flexibility versus confidentiality and security
Challenge of Secure Biodata Handling − Estonian Genome Project / BITT 2007 / 19.04.07
Where there is a will there is a way!
Erkki Leego – Managing Partner
(9/9)
Thank you!
Where there is a will there is a way!
Erkki Leego, [email protected], www.geenivaramu.ee
