Letter: concerning large-scale reserch databases like the project LifeGene

Swedish National Council on Medical Ethics
Date: 2012-03-26

Abstract

Letter to the Ministry of education and research concerning large-scale research databases, like the project LifeGene.

The Ministry of education and research is in the process of passing new legislation concerning large-scale research databases. The council has discussed these new form of databases, and has particularly considered  the design of the LifeGene project. The councils discussions are concluded  in this letter.

The council pointed out the following to be considered in the process of a new legislation

- The importance of that the review to facilitate research registers like Life Gene is coordinated with the governmental inquiry concerning registry-research and the new biobank law, not at least to avoid adverse effects on other registries with clearly stated objectives.
- Ethical aspects must be included and analyzed within the announced review, particularly issues concerning informed consent  and personal integrity.
- The importance of promoting a broad societal debate about the ethical issues raised by this type of extensive research records.

*The Swedish Life Gene project is  a prospective cohort based biobank, coordinated by the Karolinska Institutet (Stockholm, Sweden). The project aims to be one of the largest health studies performed in the world, aiming to enroll 500,000 Swedes in order to determine the relationship between disease and environmental, lifestyle and hereditary factors.

 

This opinion has not been translated into English.