Inspection finds four failures in warnings to donor mothers

An inspection has uncovered four failures in efforts to inform women that their donor-conceived children may face a risk of genetic disease, DR reports. The review found that vital warnings did not always reach the affected mothers.

The Patient Safety Authority carried out the nine-month inspection after DR investigations into a donor known as Kjeld. The donor, registered with European Sperm Bank, unknowingly passed on a serious genetic defect to some of the more than 200 children he has fathered across borders.

Clinics did not know they had to warn women

When a sperm donor is found to have a hidden, serious genetic defect, the sperm bank alerts fertility clinics. The donor is blocked, and the clinics are required to notify the women who were treated with his sperm.

However, the inspection found that several fertility clinics and gynaecologists did not know they had a duty to provide the potentially life-saving information. Some only began contacting the women after the Patient Safety Authority approached them in December last year, including in cases dating back many years.

Closed clinics failed to transfer responsibilities

Many years can pass between a donor providing sperm and a serious genetic defect being identified, for example after a donor-conceived child becomes ill. Fertility clinics must therefore keep information about women treated through sperm donation for 30 years.

When clinics close, they are required to transfer the information to another clinic. But the receiving clinic is often unaware that it has also taken over the duty to inform affected women when a donor is blocked, according to the report.

Clinics could not always reach women

Private fertility clinics typically do not have access to e-Boks, the digital mailbox used for official communication. They therefore often use telephone calls, email or letters to inform former patients about a serious genetic risk affecting their donor-conceived child.

But clinics have not always kept the women’s contact details up to date. They are also often unsure whether a message has reached the right person. The authority said some women did not respond to the notifications, while the rules do not require clinics to obtain confirmation that the message has been received.

Some data has been lost

Some clinics could not establish whether they had informed women about blocked donors. The information may be stored in old paper records, or data may have been lost when clinics changed their computer systems.

As a result, the report says, it is not always possible to determine which women were treated with sperm from a particular donor.

The failure to ensure that warnings about hereditary disease reached mothers and donor-conceived children led Health Minister Ida Auken to describe the matter as a serious case on the television programme TV Avisen on Wednesday evening.