Regarding the story featured on 21 Søndag about iPSYCH

Aarhus BSS and Health disagree with several of the claims made during the programme.
Both faculties believe that iPSYCH operates on a completely legal and ethically sound basis. In 2024, all data is processed with legal authority in the Danish Data Protection Act.

iPSYCH is the world's largest population-based psychiatric genetic cohort study.

The study aims to identify genetic and environmental causes of some of the most common psychiatric and developmental disorders such as schizophrenia, bipolar affective disorder, depression, autism, ADHD and anorexia. The study also aims to identify factors that can affect the course and long-term prognosis of these disorders.

The project can help us become better at helping people who contact the mental health services.

Research from iPSYCH dispels myths and de-stigmatises psychiatric and developmental disorders in Denmark and abroad - particularly because research results have shown how similar we all are, regardless of whether we have a psychiatric diagnosis. Research has also shown that psychiatric and developmental disorders are just as genetically and biologically rooted as physical disorders.

Furthermore, research at iPSYCH has shown that the genetic predisposition for psychiatric disorders predominantly stems from thousands of genetic variants that together elevate our risk of developing a disorder.

This means it is not possible to identify groups at a very high risk of developing a psychiatric disorder, just as it is not possible to identify population groups that will never develop symptoms.
Research at iPSYCH focuses on populations, not individuals, and researchers can only access pseudonymised data. This means that researchers cannot access, and are not permitted to access, the personal data of people involved in the study.

We take very good care of data

The iPSYCH dataset is based on genetic data from 140,000 people born in Denmark between 1981 and 2008.
The dataset includes 90,000 people diagnosed with at least one of the following between 1994 and 2015: Schizophrenia and other psychoses, affective disorders, autism, ADHD, birth-related mental health disorders and anorexia nervosa. The 90,000 were found in the Danish Psychiatric Central Research Register and the National Patient Register. The dataset also includes a representative control group of 50,000 people from the same birth-year cohorts.

Genetic analyses of all 140,000 people in the study were carried out using the heel prick samples taken from them as newborns, also known as PKU tests.  

iPSYCH takes great care of the personal data of participants and processes the data in accordance with data protection regulations.

As a general rule, individuals must be informed when their personal data is processed. However, there are exceptions to this rule, and it on the basis of these exceptions that iPSYCH participants were not informed about the processing of their data.

Consent was not obtained because the health research ethics committees granted exemptions from informed consent requirements when iPSYCH was established. This makes iPSYCH the only study in the world that truly represents an entire population, which means that the results can benefit all groups in society.
Since its establishment in 2012, iPSYCH has contributed to more than 1,000 research publications. Research has mapped hereditary and environmental causes of autism, ADHD, depression, bipolar disorder and schizophrenia, and iPSYCH contributes knowledge that can lead to better preventative care and treatment.
iPSYCH has been conducting research with authorisation from the Danish health research ethics committee system since 2012. Today, researchers continue to analyse and process the derived data within the scope of the project's purpose and protocol.

iPSYCH's work on the project is currently expected to continue until 2030.

Press enquiries can be submitted to

Press Consultant Michael Schrøder
Aarhus University, Aarhus BSS
Telephone: +45 93 50 86 59
Email: schroeder@au.dk