Modernising the regulation of fertility treatment and research involving human embryos

Consultation description

The UK is a world leader in the regulation of fertility treatment and research involving human embryos. The Human Fertilisation and Embryology Act (the Act) first became law in 1990. In the 30 years since, there have been significant changes in the fertility sector including those accessing treatment, clinic ownership structure, the size of the sector, and services offered. The majority of fertility patients now pay for their own treatment, which can raise difficult questions about what treatments to have. 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.

The proposals in this survey focus on the key changes that the HFEA believes should be made to the current law. The government has asked the HFEA to make recommendations for change, but any updates to the Act are decisions for government and parliament.

The case for change

Attitudes to fertility treatment have changed over the last 30 years, with increased understanding of infertility and assisted reproduction now more openly discussed in the media and popular culture. Many of today’s patients and parents are more comfortable with sharing their experiences, including on social media.

The science surrounding research on embryos and gametes as well as new assisted reproductive technologies continues to develop at pace, bringing potential new treatment options as well as new ethical issues. How new treatments are best introduced into clinics is the subject of widespread debate, as the recent controversies around IVF treatment add-ons demonstrate.

The 1990 Act was shaped by the understanding of the scientific possibilities and societal views at that time. Both have moved on. Our proposals are designed to ensure the law remains relevant going forward.

Background

Much of the original 1990 Act remains fit for purpose and provides a flexible framework for the regulation of a fast-developing area of medicine and research. But the Act has only been updated once, in 2008. The 2008 changes paved the way for regulations which provided new treatment options for parents seeking to avoid serious inherited mitochondrial disorders, removed potential barriers to licensed treatment for female same-sex couples and widened the scope of who could become a parent. However, with it came a complex consent regime to ensure legal parenthood. There have been other changes through regulations or secondary legislation, such as to enable providing complex data to researchers to explore infertility and the impact of IVF, or to change the storage period for gametes and embryos.

Your participation

This anonymous survey will help the HFEA collect views on some of the key issues that we are considering.

The survey is split into four areas where we think modernisation is most needed.

• Patient safety and promoting good practice
• Access to donation information
• Consent
• Scientific developments

In each area we provide a short summary of the current situation, then set out the issues with the Act, and describe our proposals for change. You will then be asked to agree or disagree with the proposal(s) and there will be free text boxes available for you to add more if you wish to or to comment on other issues.

Please note that you do not have to answer every question - you can give us your views on all four areas or just the ones you choose.

How we will use your survey responses

Completing this survey will not affect your treatment, your research, or your clinic. If you use the free text boxes provided in the survey, please do not include any information that could identify you if you are responding as an individual in a personal capacity (for example, as a patient or a donor). We will try to remove any identifying information that you give us. We may use any information, comments, or views you give in the survey in our report, or in other reports that we make. These documents are likely to be published online.

For this consultation, we may include responses received from organisations or individuals in our report. This may include the name of the organisation associated with the response and we will ask for an organisational email address to verify the response.

Please copy this direct link address if you would like to share this survey with others:
https://www.hfea.gov.uk/about-us/modernising-the-regulation-of-fertility-treatment-and-research-involving-human-embryos

If you navigate away from the survey, it should continue from where you left it, if you reopen the link in the same browser. Different browsers must be used if more than one respondent wants to reply from the same device.

The personal information you supply will be processed in accordance with the provisions of the General Data Protection Regulation and the Data Protection Act 2018.

Please click here to start the survey.

If you would prefer to complete the survey using a word document, and return to us by email at enquiriesteam@hfea.gov.uk, please click here.

If you use assistive technology (such as a screen reader) and need a version of this document in a more accessible format, please email enquiriesteam@hfea.gov.uk. Please tell us what format you need. It will help us if you say what assistive technology you use.