Report finds failures to warn donor families of genetic disease

Women and families who have had children using donor sperm cannot be sure they were informed promptly when a donor was later found to carry an inherited disease or dangerous genetic mutation, according to a review by the Danish Patient Safety Authority, reported by DR.

The review was launched after DR’s investigation into the case of an anonymous sperm donor known as “Kjeld”, and was sent to health policy spokespeople in Denmark’s parliament by the health minister on Wednesday evening.

Clinics unaware of their duty

Fertility clinics and gynaecologists are responsible for notifying women when a sperm bank issues an alert about a donor. Such alerts are sent when a donor is found to carry a serious inherited disease.

However, the review found widespread and general problems in ensuring that the warnings reach the women concerned. Several fertility clinics were not aware that they were required to contact women who had been treated there when a sperm bank issued a donor alert. As a result, they did not send notifications at the time, the authority said.

The findings raise concerns that some clinics and gynaecologists may have failed for years to notify all the women they treated, and that women may therefore still be unaware of a donor’s genetic risk.

Warnings may not reach families

Many private clinics do not have access to Denmark’s e-Boks digital mailbox system and send notifications by ordinary email instead. The review found that some women do not respond to those messages.

The authority asked clinics and gynaecologists to explain whether and when they had informed women after a donor was found to have a serious inherited disease. It found that a number of clinics had not notified women when the donor alert was issued, but only after the authority contacted them last year.

Clinics that had sent notifications were also regularly unsure whether the messages had reached the women concerned, the authority concluded.

The review covered donors who had been blocked over the past 10 years because of an increased risk of genetic disease.

Almost 40 percent missed immediate warning

In the case of “Kjeld”, DR previously reported that almost 40 percent of the 98 Danish and foreign women treated with his sperm in Denmark did not receive an immediate notification from their clinic.

A serious genetic defect was identified in some of the donor’s sperm in 2023, but many women were not informed until the case was reported in the media in 2025. Children who inherited the TP53 mutation face a high risk of developing cancer during childhood or adolescence.

The Danish Patient Safety Authority said the review had prompted fertility clinics to contact affected women who had not previously been notified. However, records and other data have been lost at some clinics and among a number of gynaecologists.

In some cases, the authority said, it was therefore impossible to establish which women had been treated with sperm from a particular donor.

The review does not state whether the authority believes all women treated with sperm from a donor can now assume they have been notified if an alert was issued because of a serious inherited disease.

Health Minister Ida Auken said on Wednesday that she was working on legislation to tighten rules across the fertility sector. She plans to convene health policy spokespeople within a month, with the aim of sending a bill out for consultation before Christmas.