Aarhus University research project faces scrutiny over handling of sensitive genetic data from 140,000 Danish individuals

A contentious research project at Aarhus University, iPsych, has come under fire for its handling of sensitive genetic data from 140,000 Danish individuals aged 16 to 43, who were unknowingly included in the study. Researchers had initially promised to establish an ethical advisory group to guide the project’s ethical framework; however, this plan was never implemented.

In 2019, five years into the project, the research leader, Professor Preben Bo Mortensen, requested a vast amount of health data from over 200,000 people from the Danish Health Data Authority, claiming that ethical considerations had been made. Despite the assurance that an ethical advisory group was in place, it was revealed that the group had been abandoned shortly after the project’s inception in 2012.

This omission has raised concerns among oversight bodies regarding transparency and accountability in research practices. Legal experts highlight a clear violation of the duty to provide truthful information, stating that the misleading claims could undermine public trust in academic institutions.

The data obtained from heel prick tests, which are conducted on newborns, include valuable information regarding various health conditions over the past 50 years. The research aims to investigate brain diseases and mental health issues, potentially utilizing individual identification numbers to merge this data with genetic information.

Despite criticism, the project will continue until at least 2030, as researchers work to finalize their analysis. Following a recent investigation, Aarhus University indicated it may take steps to inform participants and allow them to opt out of the study. Concerns persist about the ethical implications of using such sensitive data without explicit consent.