Aarhus University is investigating contact possibilities for 140,000 citizens in a research project. Aarhus University has initiated an investigation into the possibilities of contacting up to 140,000 citizens who unknowingly participated in an extensive research project without giving their consent. Health Minister Sophie Løhde (V) sees the initiative as a positive step towards greater transparency and information sharing with the involved citizens.
The researchers behind the project, who have accessed heel samples from newborns without consent, have started a dialogue with the State Serum Institute (SSI) to identify and inform the affected individuals. In a response to the parliament, Sophie Løhde stated: “It is positive that the researchers have now entered into a dialogue with the institute in order to try to identify and subsequently inform the involved individuals.”
The aforementioned heel samples, offered to all newborns in Denmark and stored in the National Biobank of Denmark, have formed the basis for the genetic research project “iPsych”. The project, initiated over ten years ago by researchers at Aarhus University, aims to explore the causes of mental disorders such as autism and ADHD, as well as to investigate the effectiveness of different treatments.
“In the research project, the genetic data has been linked to other information, such as health, family history, economic and social conditions, education, and employment,” explains the Health Minister. “The data is pseudonymized, which means that researchers cannot directly identify the individuals without further information.”
According to Sophie Løhde, the State Serum Institute will likely be able to assist in finding the citizens involved in the project. Aarhus University has expressed willingness to investigate the possibilities of contacting these individuals so that they can be informed about their unwitting participation and have the opportunity to make an informed decision about their continued participation.
The demands for information and the possibility to withdraw from the project have been raised by several patient and caregiver organizations, who want to ensure citizens’ right to consent and protection of their personal data.