Published: 29-02-2012 00:00 | Updated: 26-11-2013 10:29

A welcome initiative on registry research

[NEWS 2012-02-28] Education minister Jan Björklund announced today a number of measures for improving conditions for registry-based research without compromising personal integrity. One such measure is a new constitutional rule allowing higher education institutions to draw up registries for population-based research on hereditary and environmental influences on health and disease. Karolinska Institutet welcomes this government initiative, which means that the LifeGene project can continue its valuable work.

"We're delighted that the government has realised just how important this issue is and that they've worked so quickly on clearing up the ambiguities surrounding registry research," says Professor Martin Ingvar, Dean of Research at Karolinska Institutet. "The fact that LifeGene, the Twin Registry and other such forward-looking studies can continue their work is vital to medical research and public health in the future."

There remain many unexplored fields in medical science. It is hoped that LifeGene will generate completely new knowledge on the most common diseases and health problems, such as asthma, allergies, infections, obesity, repetitive strain, chronic fatigue and pain and the major late-life diseases like cardiovascular disease and cancer.

All medical faculties in Sweden are involved in the project, with Karolinska Institutet as host. Their aim is to recruit several hundred thousand voluntary participants, who give their written consent to the storage of personal health and lifeways data and of blood and urine samples in a biobank for future research purposes. All data is encoded to protect the participants' identity, and the anonymous information will be made available to researchers at universities around the world.

To date around 20,000 people have signed up for the project. Some two dozen applications have come in from researchers wanting to use the LifeGene database, and 14 studies will soon be starting on areas such as asthma, the metabolic syndrome and diabetes, industrial exposure to chemicals and the effects of shift-work on stress, sleep and health.

"We were prepared to pull back on the project pending a juridical ruling on the data collection issue," says Professor Nancy Pedersen, scientific coordinator for LifeGene. "But now we hope that we'll soon be up and running again at full strength and working to our original plans."

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