Aarhus University notifies 140,000 participants in the iPSYCH research project
Researchers at iPSYCH have conducted genetic analyses of heel-prick blood samples from a large group of Danes, who are now being informed of their participation in the project.
On Friday, June 20, 140,000 Danes will receive a letter in their digital mailbox (e-Boks).
In this letter, each individual will learn that they are participating in the iPSYCH research project at Aarhus University, which since 2012 has investigated the genetic and environmental causes of a range of psychiatric disorders and developmental conditions.
The research is based on the heel-prick blood sample offered to all newborns in Denmark and has contributed knowledge that may lead to better prevention and treatment of patients with psychiatric diagnoses.
Participants were not contacted when the research project began in 2012 because the scientific ethics committees, upon the establishment of iPSYCH, granted an exemption from the requirement for informed consent.
The desire for information carries the most weight
Researchers have now decided to send a letter to everyone who has contributed biological data. This is explained by Professor Anders Børglum of Aarhus University, one of the founders of iPSYCH.
"The decision to inform the participants in the project comes in response to requests from citizens and patient organizations. It also aligns with societal developments and the growing demand for transparency in health-genetics research projects. On this basis, we sought approval from the ethics committees to contact the group of Danes included in iPSYCH," he says.
"We have had good dialogues with many different stakeholders, and through these, we know there is broad support for informing individuals," says Anders Børglum.
Participants will also have the opportunity to opt out of having their data used in future research.
It has been a lengthy process to determine how best to inform 140,000 people and offer the option to withdraw.
"We have carefully considered the potential consequences of sending the information letter to participants," says Anders Børglum.
"In particular, we have considered whether the e-Boks letter could cause unnecessary worry or concern among recipients - especially among more vulnerable groups. But the desire for information carries the most weight, which is why we are now contacting the 140,000 participants," he says.
Since its establishment in 2012, iPSYCH has contributed to more than 1,000 research publications. Among other findings, researchers have documented a link between low vitamin D levels in newborns and the later development of conditions such as schizophrenia. They have also identified a wide range of genes that influence the development of psychiatric diagnoses - showing, for example, that genes play a decisive role in whether a person develops ADHD or autism.
Facts
- The iPSYCH research project has conducted genetic analyses of 140,000 Danes born between 1981 and 2008.
- The genetic analyses were performed using PKU cards - the heel-prick blood samples offered to all newborns.
- 90,000 of the participants have a psychiatric diagnosis and were included through the National Patient Register. 50,000 participants have not had a psychiatric diagnosis.
- iPSYCH research investigates the genetic and environmental causes of various psychiatric disorders and developmental conditions - and their health and social consequences.
- iPSYCH has a particular focus on autism, ADHD, anorexia, schizophrenia, bipolar disorder, and depression.
- The aim is to contribute knowledge that can lead to better understanding, prevention, and treatment. Research from iPSYCH also helps dispel myths and reduce stigma surrounding psychiatric disorders and developmental conditions - by demonstrating, among other things, that mental illnesses and developmental disorders are just as genetically and biologically rooted as physical illnesses.
- iPSYCH handles 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 individuals included in the study.
Read more at ipsych.dk
Contact
Professor Anders Børglum
Department of Biomedicine, Aarhus University
Phone: +45 60 20 27 20
Email: anders@biomed.au.dk
This text is based on mashine translation