The research project iPSYCH, based at Aarhus University, focuses on psychiatric diseases and developmental disorders. At its establishment in 2012, the project was granted an exemption from the requirement of informed consent. Therefore, iPSYCH is the only psychiatric study that genuinely represents the entire Danish population, making its results beneficial to all groups in society.

However, this also means that neither the researchers nor the participants know who is involved in the study. This has sparked debate in recent weeks.

“iPSYCH has operated on a secure legal basis since its inception in 2012 and has acted in accordance with the scientific ethical permissions. But it makes an impression when patients and patient associations seek dialogue about the data processing conditions under which the research is conducted. Therefore, we are, of course, listening,” says Anne-Mette Hvas, dean of the Faculty of Health Sciences at Health.

Aarhus University has invited patient associations to meetings and dialogue. Simultaneously, Aarhus University, in collaboration with institutions such as the Statens Serum Institut, is examining the possibility and, if so, how best to contact the 140,000 Danes involved in the project. The task is enormously complex and involves, among others, experts in data protection and scientific ethical committees. Therefore, it will take time.

“Although iPSYCH researches populations and not individuals, we are looking at ways to accommodate those individuals who do not wish for their data to be included in future projects,” says Anne-Mette Hvas.

Since its inception in 2012, iPSYCH has widely informed about the research and the results the project has generated - through lectures, visits to patient associations, press releases, and at "Folkeuniversitetet". Dean Anne-Mette Hvas notes that the dialogue about iPSYCH has been characterized by interest and enthusiasm over the fact that iPSYCH, through more than 1000 scientific articles, has significantly contributed to destigmatizing mental illnesses and developmental disorders and creating a better understanding of the underlying mechanisms.

Aarhus University will now, in collaboration with the scientific ethical system, the Statens Serum Institut, and other stakeholders, investigate the possibility of contacting participants in the iPSYCH project. The parties need to clarify the challenges in relation to contacting the participants. The collaboration will take place in the autumn of 2024.

About iPSYCH:

• The iPSYCH research project identifies genetic and environmental causes of a range of common psychiatric diseases and developmental disorders, including schizophrenia and other psychoses, bipolar disorder, depression, autism, ADHD, and anorexia.
• The aim is to contribute knowledge that can lead to better understanding, prevention, and treatment. Research from iPSYCH helps dispel myths and destigmatize psychiatric diseases and developmental disorders by demonstrating that these conditions are as genetically and biologically grounded as physical illnesses.
• iPSYCH’s dataset is based on genetic data from 140,000 Danes born between 1981 and 2008. The genetic analyses were conducted using PKU cards – the heel prick blood sample offered to all newborns.
• iPSYCH processes participants' personal data in accordance with data protection regulations. Researchers only have access to pseudonymized data, meaning they do not have access to the identities of the individuals included in the study.

Contact Information:

Dean Anne-Mette Hvas
Aarhus University, Health
Phone: +45 87 15 20 07
Email: dean.health@au.dk