Regarding the segment in 21 Søndag about iPSYCH

On 26 May, Danish Broadcasting Corporation (DR) aired a segment in the programme 21 Søndag that criticises the research consortium iPSYCH, which is based at Aarhus BSS.

Aarhus BSS and Health disagree with several of the claims made in the broadcast.

It is the clear opinion of the faculties that iPSYCH operates on a completely legal and ethically sound basis. All data processed in 2024 is in compliance with the Data Protection Act.

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

The purpose is to identify genetic and environmental causes of a number of the most common psychiatric disorders and developmental conditions: schizophrenia and other psychoses, bipolar affective disorder, depression, autism, ADHD, and anorexia. The aim is also to identify factors that can influence the course and long-term prognosis of these diseases and developmental disorders.

This means we can become better at helping people who seek psychiatric help.

Research from iPSYCH helps to dispel myths and destigmatise psychiatric diseases and developmental disorders both in Denmark and internationally – especially because the research results have shown how much we all resemble each other, regardless of psychiatric diagnosis or not. The research has also shown that psychiatric diseases and developmental disorders are at least as genetically and biologically rooted as physical illnesses.

Among other things, we know, due to the research in iPSYCH, that the genetic predisposition for psychiatric diseases largely comes from thousands of genetic variants that together can scale our risk for a given diagnosis. This means, for instance, that it is not possible to identify groups with a very high risk for a psychiatric diagnosis – just as it is not possible to point to groups of the population who will never develop symptoms.

iPSYCH's research does not focus on individuals, but on populations, and researchers only have access to pseudonymised data. This means that researchers neither can nor are allowed to access the identities of the individuals included in the study.

We take data security very seriously

iPSYCH's dataset is based on genetic data from 140,000 people born in Denmark between 1981 and 2008.

The dataset includes 90,000 people who, between 1994 and 2015, received at least one of the following diagnoses: schizophrenia and other psychoses, affective disorders, autism, ADHD, perinatal mental disorders, and anorexia nervosa. These individuals were identified in the Psychiatric Central Register and the National Patient Register. Additionally, a representative control group of 50,000 people from the same birth cohorts is included.

The genetic analyses of all 140,000 people in the study were conducted using the so-called PKU cards – the heel prick test offered to all newborns.

iPSYCH diligently safeguards participants' personal information and processes it in accordance with data protection regulations.

As a general rule, individuals must be informed when their personal data is being processed. However, there are exceptions to this rule, and it is based on these exceptions that participants in iPSYCH have not been notified.

Consent has not been obtained because the scientific ethical committees, when establishing iPSYCH, granted an exemption from the requirement for informed consent. Therefore, iPSYCH is the only study in the world that truly represents the entire population, which, among other things, ensures that the results can benefit all groups in society.

Since its establishment in 2012, iPSYCH has contributed to more than 1,000 research publications. The research has mapped hereditary and environmental causes of, among others, autism, ADHD, depression, bipolar disorder, and schizophrenia, and iPSYCH contributes knowledge that can lead to better prevention and treatment.

iPSYCH has been conducting research with permission from the Scientific Ethical Committee System since 2012. Today, researchers continue to analyse and process the derived data within the project's objectives and protocol.

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

Press inquiries can be directed to:

Press Consultant Michael Schrøder 
Aarhus University, Aarhus BSS 
Phone: +45 93 50 86 59