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The Guardian - UK
The Guardian - UK
Science
Jamie Grierson

Donor children could contact biological parents before 18 under new proposals

Process of in vitro fertilization in a laboratory
Each year about 60,000 patients use fertility services in the UK. Photograph: Andriy Bezuglov/Alamy

Children born via sperm or egg donation would not need to wait until adulthood to find out more about their biological parents, under proposed changes to the law in the UK.

At present, donor-conceived children cannot obtain information about their biological parents until they are 18. But the Human Fertilisation and Embryology Authority (HFEA) said the law should be updated so this information can be made available after the birth of a child, should the donor choose.

Parents would need to decide at the point of treatment whether they would like to choose a donor who is identifiable before or after their future child turns 18.

Any decision to update the law is for the government and ultimately parliament to decide.

The HFEA chair, Julia Chain, said: “Much of the fertility law has stood the test of time remarkably well but modern fertility practice, emerging possibilities in research that could benefit patients and the changing expectations of donors and of families, are not reflected in the sector’s 30-year-old law.

“The HFE Act is the cornerstone of fertility regulation enforced by the HFEA to ensure clinics provide services to patients that are safe and of a high standard; we are uniquely positioned to see where the law works well and where it doesn’t.”

The proposal to alter age restrictions is one of several suggested changes to the law that governs fertility treatments in the UK.

The HFEA also wants more power to regulate “add on” treatments – the optional extras offered by some clinics that can cost patients thousands of pounds. Some fertility clinics point patients to sister companies that offer health, wellness and dietary advice.

The HFEA has proposed it should have more power to regulate these extra treatments. Last year the Competition and Markets Authority warned that fertility clinics were failing to provide information about the evidence for, or risks associated with, treatment add-ons.

It said the add-ons could cost up to £2,500 a cycle.

Chain continued: “With input from an expert advisory group, we have identified where the law needs to be modernised in the interests of patients and their families.

“This includes providing more up-to-date powers for inspecting and regulating fertility clinics in the interests of patients and greater choice around donor anonymity.”

She added: “There is great care being offered in both the NHS and private sector. But the enforcement powers we currently have – suspending or removing a licence – are too slow and blunt.

“We need a more agile and gradual approach like other regulators which help shape clinic behaviour and address serious noncompliance quickly.

“A good example of this is with treatment add-ons. As noted in the recent women’s health strategy, changes to the HFEA’s regulatory powers may be needed to ensure only treatments that have been proven to be effective are recommended by clinics.

“We also want patients to be at the heart of fertility law – the HFE Act. It should acknowledge the quality of patient care as a key outcome, making the law more patient centred and in line with modern day medicine.”

Experts have suggested that the 30-year-old law is outdated. The HFEA said the act is “silent on patient care” as it called for the ability to take “proportionate action where patient safety is at risk”.

The agency said it should be given the option to fine poorly performing clinics, saying its current range of sanctions were “limited”. It also called for the sharing of patient records between GPs and fertility clinics.

Each year about 60,000 patients use fertility services in the UK, and in England 60% of patients will pay for their own treatment.

Gwenda Burns, chief executive of the charity Fertility Network UK, said: “Fertility Network UK welcomes the Human Fertilisation and Embryology Authority’s consultation on fertility law.

“Healthcare and society have changed in the last three decades and modernising the law can bring benefits for patients and their families.”

The HFEA consultation opened on 28 February and will run for six weeks on the regulator’s website. It will submit its recommendations for law changes to the Department of Health and Social Care by the end of the year.

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