UK regulator proposes to modernise 33-year-old fertility law

The Human Fertilisation and Embryology Authority has set out recommendations to modernise the UK’s 33-year-old fertility law.

The proposals made by the UK-wide regulator of fertility treatment and embryo research aim to “future-proof” the law, so it better reflects the significant changes in the size and structure of the fertility sector, in attitudes to fertility treatment and in medical and scientific developments.

The 15 proposals cover four areas where the law should be modernised in the interests of patients, professionals and researchers: patient safety and promoting good practice, access to donor information, consent and scientific developments.

The reforms aim to give the HFEA a range of regulatory tools to protect patients, helping the regulator decrease unnecessary regulatory burden and providing a greater focus on serious non-compliances.

With new technologies in the fertility space bringing potential new ethical issues, the proposals also aim to simplify consent for patients and modernise access to donor information.

“The current law does not reflect the range and type of fertility treatment on offer today, nor modern regulatory standards. We think there should be changes that will ensure the law can continue to effectively protect patients, as well as support the scientific advances that can help them have a much-wanted child,” said Julia Chain, chair of the HFEA.

“The number of patients having fertility treatment has increased from just over 6000 in 1991 to nearly 52,000 in 2021. The fertility sector has also changed, leaving our current regulatory powers out of step with patient expectations and regulatory standards.

“Today, most patients fund their treatment themselves, which has changed their view of this area of healthcare to being consumers with active choices to be made. Many UK regulators have a wider and more effective range of powers to improve compliance and protect patients and consumers than those available to the HFEA.”

She added: “Our proposals would improve patient safety and protection and maintain the UK’s position as a country where scientific and clinical innovation can flourish.

“In all our work, the special status of the human embryo will remain a guiding principle as its potential makes it different from all other human tissue.”

The recommendations were developed by the HFEA after seeking the views of fertility patients, clinic staff and others interested in the area via a public consultation.

Chain said: “The full consultation report, which shows the range of views we received, was extremely helpful in developing the recommendations.

“Nowhere in this field has the pace of social and technological change been more rapid than in the growing popularity of direct-to-consumer DNA testing and social media, with a lasting impact on donor anonymity. We need to balance the law with what is taking place in reality.

“We recommend the law is changed so that parents can find out who a donor is from the birth of a child. Our proposal reflects the fact that the current system, where identifiable information about a donor is disclosed to the donor-conceived person at 18 and only upon request, can no longer effectively keep up.

“We know this a significant departure, and so a gradual approach to reach this position may be best, but it should be the aim to future proof the law,” she added.