Building global networks for human diseases: genes and populations

Hagen, H.; Carlstedt‐Duke, Jan

doi:10.1038/nm0704-665

Cited by 27 publications

(17 citation statements)

References 6 publications

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“…Use and protection of samples and data are considered crucial topics in biobanking and they represent one of the main issues in the challenge of harmonising biobanks and creating international networks [9,12,18,19,20]. Significant variability emerged with regards to privacy and data protection requirements among biobanks in Europe.…”

Section: Discussionmentioning

confidence: 99%

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A European Survey on Biobanks: Trends and Issues

Zika

Paci

Braun

et al. 2010

Public Health Genomics

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Biobanks have recently gained great significance for research and personalised medicine, being recognised as a crucial infrastructure. At the same time, the widely varied practices in biobanking may also pose a barrier to cross-border research and collaboration by limiting access to samples and data. Nevertheless, the extent of the actual activities and the impact of the level of networking and harmonisation have not been fully assessed. To address these issues and to obtain missing knowledge on the extent of biobanking in Europe, the Institute for Prospective Technological Studies (IPTS) of the European Commission’s Joint Research Centre, in collaboration with the European Science and Technology Observatory (ESTO), conducted a survey among European biobanks. In total, 126 biobanks from 23 countries responded to the survey. Most of them are small or medium-sized public collections set up either for population-based or disease-specific research purposes. The survey indicated a limited networking among the infrastructures. The large majority of them are stand-alone collections and only about half indicated to have a policy for cross-border sharing of samples. Yet, scientific collaborations based on the use of each biobank appear to be prominent. Significant variability was found in terms of consent requirements and related procedures as well as for privacy and data protection issues among the biobanks surveyed. To help promote networking of biobanks and thus maximise public health benefits, at least some degree of harmonisation should be achieved.

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Section: Discussionmentioning

confidence: 99%

“…and an improved networking of existing and new collections [1,11]. Nevertheless, the extent of the activity and the need for networking and/or harmonisation has not yet been fully explored [12]. …”

Section: Introductionmentioning

confidence: 99%

A European Survey on Biobanks: Trends and Issues

Zika

Paci

Braun

et al. 2010

Public Health Genomics

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“…On the other hand, for etiologic research questions, the researchers working with disease-oriented biobanks will need control subjects and biological material that have been collected at an earlier time point as part of the longitudinal population-oriented cohorts. In recognition of the synergy potential of biobanks, the establishment of international networks of bio(tissue)banks has been assigned a very high strategic priority not only to cover the emerging demands for such resources but also to increase efficacy in medical genomics and to reduce research costs [3,8,9] .…”

Section: Biobanks 'Old' and 'New'mentioning

confidence: 99%

“…Like deCODE, most major European biobanks, such as GenomEUtwin, Karolinska Biobank, Estonian Biobank, UK Biobank, EPIC, KORA, LURIC, the Danubian Bio-bank Consortium have a focus on blood and blood-derived DNA. Therefore, most experience and literature refer to or, at least, have a focus on blood or DNA biobanks [3] . In contrast, tissue banks are far less in the spotlight.…”

Section: Introductionmentioning

confidence: 99%

Biobank Governance: Trends and Perspectives

Gottweis¹,

Zatloukal

2007

Pathobiology

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Biobanks are a challenge and topic for governance. Today, biobanks are identified as a biomedical scientific/infrastructural development that warrants a political/legal/ethical reaction with the goal to integrate biobanks into the preexisting fabric of regulation, medicine, law and society. Biobank governance is always a response to sociocultural challenges and requires the building of trust, acceptance, and careful political negotiation. Biobanks are regulated in networks of governance in which the state is one actor next to others, and the ordering and structuring of the interaction between biobanks, society, and politics operates through a variety of actors, on different levels and along particular rationalities. Such networks of governance reflect, to some extent, a postregulatory state in which governance has become a complicated architecture and field of action involving a multitude of forces and rationalities. Biobank governance is still a relatively new field of political-legal intervention and it will be crucial for the future of biobanks to establish governance regimes that appropriately link research with society and politics.

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“…The Genome Austria Tissue Bank (GATiB) Biobanks containing human biological samples, such as tissues, blood or body fluids, in combination with donor-related clinical data, are essential resources for the understanding of the function and medical relevance of human genes as well as for exploring the biological networks in which specific genes are operating [1][2][3] . Particularly valuable information can be obtained from biobanks comprising normal and diseased human tissues of high quality [4] .…”

mentioning

confidence: 99%

The Genome Austria Tissue Bank (GATiB)

et al. 2007

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In the context of the Austrian Genome Program, a tissue bank is being established (Genome Austria Tissue Bank, GATiB) which is based on a collection of diseased and corresponding normal tissues representing a great variety of diseases at their natural frequency of occurrence from a non-selected Central European population of more than 700,000 patients. Major emphasis is put on annotation of archival tissue with comprehensive clinical data, including follow-up data. A specific IT infrastructure supports sample annotation, tracking of sample usage as well as sample and data storage. Innovative data protection tools were developed which prevent sample donor re-identification, particularly if detailed medical and genetic data are combined. For quality control of old archival tissues, new techniques were established to check RNA quality and antigen stability. Since 2003, GATiB has changed from a population-based tissue bank to a disease-focused biobank comprising major cancers such as colon, breast, liver, as well as metabolic liver diseases and organs affected by the metabolic syndrome. Prospectively collected tissues are associated with blood samples and detailed data on the sample donor’s disease, lifestyle and environmental exposure, following standard operating procedures. Major emphasis is also placed on ethical, legal and social issues (ELSI) related to biobanks. A specific research project and an international advisory board ensure the proper embedding of GATiB in society and facilitate international networking.

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Building global networks for human diseases: genes and populations

Cited by 27 publications

References 6 publications

A European Survey on Biobanks: Trends and Issues

A European Survey on Biobanks: Trends and Issues

Biobank Governance: Trends and Perspectives

The Genome Austria Tissue Bank (GATiB)

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