SSI resumes data sharing of virus sequences

With an executive order, which came into force on 4 May, Statens Serum Institut can once again share virus sequences from SSI's monitoring with the international research environment

Data sharing

Statens Serum Institut (SSI) has been given the green light to once again share virus sequences from its disease surveillance with the international research environment. SSI stopped the division in February, as the virus sequences, despite aggregation, were in some cases so unique that they could be personally identifiable. The information was pseudonymised.

Although whole genome sequencing of viruses cannot in itself be used to identify natural persons, there was a need to ensure that the legal basis for sharing was in order and adequately specified.

The outcome was an executive order that allows SSI to share virus sequences internationally, including through the data sharing system GISAID. Below is an excerpt from the executive order in Danish.

An excerpt from the executive order in Danish

"We are very pleased to be able to share this data again in a responsible way. Covid-19 is a worldwide disease that requires worldwide action. And so we must work closely together and share our knowledge and data globally,” says Henrik Ullum, CEO of Statens Serum Institut.

Why SSI stopped the data sharing

SSI has been in dialogue with the Danish Data Protection Agency (Datatilsynet) about the possibilities of anonymisation. In addition, SSI has acquired assistance from the primary attorneys to the Danish state (Kammeradvokaten) to clarify the legal basis for the sharing of SARS-CoV-2 sequence data.

“These particular virus variants can be personally attributable, simply because the cases are so unique, since only one or a few have had a specific variant. Therefore, after dialogue with the Datatilsynet and advice from Kammeradvokaten, we were forced to stop sharing this data with the other countries until the rules and legal basis had been clarified,” says Henrik Ullum. He continues:
"This was, of course, deeply regrettable because global sharing of knowledge is absolutely crucial to fighting this pandemic, but we had to make sure we are in compliance with the rules".

Precious health data in safe hands

The discovery of new virus sequences is crucial in the fight against covid-19, and the Danish data is world-class, among other things due to our digitization. Because of this there has also been a great desire abroad, for Denmark to resume the sequence data sharing.

This data sharing has now been secured and the majority of the withheld data has already been sent off.

“It is absolutely crucial that the scientific world around the globe are able to share knowledge about this unfortunate pandemic that has plagued the world for over a year now. So we are very satisfied that the new executive order secures the legal foundation, and that we can resume the sharing of relevant sequence data, ”says Henrik Ullum.

He emphasizes that Danes can be completely confident that SSI takes care of their health data.

"This case clearly demonstrates that we take really good care of the health data of our citizens, and we do it in close cooperation with the authorities in the field," he says.

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Here is the entire executive order in Danish