Fertility regulator calls for changes to donor anonymity laws
The recommendations aim to better protect patients and ‘modernise’ the Human Fertilisation and Embryology Act.
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Your support makes all the difference.The parents of babies conceived from donors should be able to find out their biological origins from birth rather than waiting until they are 18, a regulator has said.
It is one of a number of recommendations made by the Human Fertilisation and Embryology Authority (HFEA) to “modernise” fertility laws.
The regulator said updating the Human Fertilisation and Embryology Act would “improve patient care and maintain our position as a country where scientific and clinical innovation can flourish”.
It is calling for the removal of donor anonymity from the birth of any child born from donation.
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
Clinics should also be required by law to inform donors of the potential for their identity to be discovered through means other than the HFEA register, such as social media or DNA testing websites.
Julia Chain, chairwoman of the HFEA, said: “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.”
She said the HFEA’s proposal on anonymity “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 futureproof the law,” she added.
Donor anonymity laws changed earlier this year and from October the first donor-conceived young adults born after a certain date could apply to the HFEA for information.
The current consent element of the Act should also be overhauled, according to the HFEA, with updates to include automatic record-sharing between clinics and the NHS central records.
The regulator said this would “support more joined-up and safer patient care at hospitals and within primary care” and patients would be able to opt out.
Elsewhere, the regulator recommended that all donors and recipients should have counselling before starting treatment.
It also wants to offer greater support to innovation in treatment and research in the fertility field, and said the Act should be “futureproofed” to accommodate future technologies and scientific developments.
Ms Chain said current laws do not “reflect the range and type of fertility treatment on offer today, nor modern regulatory standards”.
She added: “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.”
According to the HFEA, the number of people having fertility treatment has increased from a little over 6,000 in 1991 to almost 52,000 in 2021.
Ms Chain said the sector has also changed, leaving the regulator’s powers “out of step with patient expectations and regulatory standards”.
Our proposals would improve patient safety and protection, and maintain the UK’s position as a country where scientific and clinical innovation can flourish
The HFEA has recommended it should have the power to issue fines and is also calling for greater freedom on deciding the regularity of inspections at clinics.
“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,” Ms Chain added.
“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.
“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.”
A Department of Health and Social Care spokesperson said: “We asked the Human Fertilisation and Embryology Authority to undertake a stakeholder consultation about the priorities for reform as we recognise legislation needs to be modernised and are grateful they have undertaken this work.
“The report raises important issues about considering regulatory powers that better protect fertility patients and the quality of the service they receive.
“We will respond to its recommendations in due course.”
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