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 council’s discussions were concluded in a letter.
The council pointed out the following to be considered in the process of a new legislation:
- The importance of coordinating the review to facilitate research registers like Life Gene 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 LifeGene 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.