The Ethics Blog

A blog from the Centre for Research Ethics & Bioethics (CRB)

Tag: LifeGene

Open biobank landscapes

Last week I wrote about the transition from organizing science as a tree of knowledge that once in a while drops its fruits onto society, to organizing research as part of knowledge landscapes, where the perspective of harvesting, managing and using the fruits is there from the beginning. That the proud tree is gone might […]

UK Biobank invites researchers

After many years of data collection, UK Biobank is now open for research on human health and disease. Like the Swedish biobank investment LifeGene, the British investment is big and prospective. Blood and urine samples were collected from 500 000 participants aged 40-69. Participants also underwent medical examinations and answered questions about health, disease and lifestyle. […]

The Swedish government announced new rules for research registers

Will new Swedish rules for research registers enable LifeGene to continue? In December 2011, the Swedish Data Inspection Board (DI) decided that the large biobank investment LifeGene is against the law. In its motivation, DI focused on the purpose of the data collection and the information to participants about this purpose. According to DI, LifeGene’s purpose […]

The Swedish Data Inspection Board stops large biobank

Swedish biobank research suffered serious defeat last week. The Swedish Data Inspection Board decided that the ongoing collection of biological samples and health data to the large biobank LifeGene is against the law. Karolinska Institutet (that runs LifeGene) must now stop collecting further data and is not allowed use already collected data. The reason for […]

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