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Understanding of Fertility, Genomics and Embryo Research in the UK in 2022

To mark its 30th anniversary in 2022, the Progress Educational Trust (“PET”) commissioned important research, supported by Ferring Pharmaceuticals, to gauge public awareness about fertility, genomics and embryo research in the UK. Ipsos carried out a nationally representative online survey of 2,233 UK adults on PET’s behalf between 24 – 27 March 2022. The results matter because they provide a snapshot of current public understanding and opinion about issues impacting the fertility sector and rapid advances in the field of genomics to combat genetic diseases. These research findings are also significant because they come at a time when law reform is expected in these key areas in the UK.

UK Fertility and Genomic Law Reform

The UK government has announced that existing fertility law governing the delivery and oversight of fertility treatment in the UK in the form of the Human Fertilisation and Embryology Act 1990 (“HFE Act 1990”) is likely to be revised. The Human Fertilisation and Embryology Authority (“HFEA”) hopes to reach an outline agreement with the Department for Health and Social Care on changes before the end of 2022. In doing so, the HFEA has identified three key areas of the HFE Act 1990 which are in need of reform namely (1) patient protection, (2) scientific developments and (3) consent, data sharing and anonymity.

Next year (2023), as part of the continued rollout of the NHS Genomic Medicine Service, a pilot scheme will also be launched to recruit families to investigate (1) whether and how genomic technology would benefit families by increasing the early detection of diseases and (2) whether whole genome sequencing should be routinely offered for all newborn babies.

Law reform is also expected in relation to surrogacy in the UK. The Law Commissions of England and Wales and the Scottish Law Commission are expected to publish their final recommendations for law reform, together with draft legislation later this year (2022).

NHS Funding For Fertility Treatment

PET’s survey found that two-thirds of respondents (67%) supported funding on the NHS for fertility treatment to help people conceive a baby. This provides further important evidence that the current postcode lottery governing NHS funding for fertility treatment across England should be brought to an end.

The survey found that there was most support amongst respondents (49%) for funding for fertility treatment on the NHS for childless heterosexual couples. This was followed by 37% of respondents supporting NHS funding for fertility treatment for heterosexual couples where one was infertile and the other had a child from a previous relationship.

The survey also found that there was some support for NHS funding for fertility treatment for same-sex couples (28%), single people (19%), transgender people (19%) and women over 42 years old (19%). As such, these findings also demonstrate that more work is needed to build acceptance and achieve equality of access and recognition for non-traditional family forms and later-life parenthood in the UK.

Egg and Sperm Donation

PET’s survey showed a range of views in relation to egg and sperm donation in the UK. Some 21% of respondents said that they would donate their eggs or sperm if asked by a family member and 17% said they would do so if asked by a friend. Some 21.5% of respondents said they would donate to someone they did not know if they could remain anonymous and 14% of respondents said they would donate their eggs or sperm if they thought they could help someone they did not know and the donor-conceived individual has the legal right to know their identity once they turned 18 years old. However, 25% of respondents were not willing to donate their eggs or sperm under any circumstances and 15% of respondents answered don’t know.

PET’s survey findings indicate that more work is required to address issues surrounding egg and sperm donation in the UK to include, supply and demand and donor information rights.

Posthumous Conception

PET’s survey found that 60% of respondents agreed that the eggs or sperm of a deceased person should be able to be used by their surviving partner in fertility treatment where there is evidence that the deceased intended for their stored sperm or eggs to be used in this way. In addition, 53% of respondents supported posthumous conception involving a family member where there was evidence that the deceased person intended that their stored eggs or sperm should be used in this way. Furthermore, just under half of all respondents (48%) supported the use of stored eggs or sperm of a deceased person where they had given explicit consent for their gametes to be used in this way.

Given this level of current awareness and support for posthumous conception, these findings provide impetus for review of existing complex law in this area to make it easier to navigate in practice (click here to read more).

Surrogacy

PET’s survey findings show that more work is needed to increase awareness and understanding about surrogacy in the UK. Some 15% of respondents wrongly thought that surrogacy is not legal in any of the four UK nations (England, Scotland, Wales or Northern Ireland) and 36% of respondents said that they did not know whether surrogacy was legal. It is also interesting to note that 39% of respondents thought that surrogates should only be paid for their overall reasonable expenses for being a surrogate, whilst 25% of respondents thought that surrogates should be paid a salary for being a surrogate in addition to their overall reasonable expenses.

Notwithstanding these findings, surrogacy is legal in the UK and we have seen a fourfold increase in surrogacy arrangements in the UK since 2011 (with 117 parental orders granted in 2011 increasing to 424 in the Family Court in England and Wales in 2021). The work of the Law Commissions of England and Wales and the Scottish Law Commission is therefore to be welcomed to help bring about reform of outdated surrogacy law in the UK and improve understanding and legal clarity about the status and rights of intended parents, surrogates and surrogate born children.

Genetics and Genomics

When asked about the meaning of the term “human genome” some 45% of respondents of PET’s survey selected only correct definitions, whereas 43% selected (one or more) incorrect answers or ‘don’t know’. Notably, younger respondents in the age group 16 – 24 year olds were more likely to select only correct answers (at 62%) compared with 53% of respondents aged 45 – 54 and 51% of those aged 55 – 75. This shows that more work is needed to increase awareness and understanding about the human genome, particularly in older populations across the UK, as we seek to move towards the delivery of personalised and precision healthcare on the NHS underpinned by genomics to better combat genetic disease.

PET’s survey findings showed that 53% of respondents supported whole genome testing at birth, with 22% neither supporting or opposing this and only 10% opposing this. This provides clear impetus to progress the proposed NHS pilot scheme to investigate the benefits of sequencing the whole genome of newborn babies in the UK.

PET’s survey findings also indicated that there was notable interest in taking a genetic test for a number of reasons. Some 62% of respondents were interested in taking a genetic test to assess the risk of developing certain medical conditions. Some 57% of respondents showed interest in taking a genetic test to explore the parts of the world where their ancestors originated from. In addition, some 42% of respondents were interested in taking a genetic test to find out about ‘hidden talents’ they did not know they have (e.g. sporting potential). These findings indicate ongoing support for direct-to-consumer DNA tests, even though these test results can be unreliable particularly in seeking to assess disease risk or ‘hidden talents’. Direct-to-consumer test results also raise a variety of often unanticipated and complex legal and wider issues about legal identity, status, parentage, birth certificates as well as relationships with family and genetic relatives (click here to read more).

Human Embryos in Research and Treatment

PET’s survey findings show that much more work is needed to improve awareness and understanding of early human development in the UK. Only 11% of respondents correctly identified that the term ‘embryo’ applies to the stages of growth up to around 8 weeks after an egg is fertilised and 32% of respondents answered ‘don’t know’.

PET’s survey findings also showed that 41% of respondents supported the use of human embryos for scientific and medical research. However, more work is needed to improve understanding and support for the use of human embryos in research to develop more effective IVF technology and drive scientific advances in stem cells for regenerative medicine purposes.

PET’s survey findings further indicate that 53% of respondents supported the use of human genome editing in human embryos to be transplanted into a woman to establish a pregnancy to help eliminate a severe or life-threatening condition in the resulting child. In addition, only 14% of respondents opposed the use of human genome editing in this way. It is also interesting to note that a smaller (albeit significant) proportion of respondents supported human genome editing of embryos to eliminate a less severe condition (36%) or to ensure that a child has particular preferred characteristics for example certain eye colour, height or physical traits (20%).

Specialist Fertility and Family Law Advice

PET’s survey findings show that are many complex issues which require careful thought in terms of navigating the fertility sector and reforming fertility law in the UK.

Specialist fertility and family law advice steers a path through many complex legal and wider issues associated with fertility treatment, donor conception, surrogacy, co-parenting arrangements, adoption and complex personal situations. It can create a bespoke family building legal and practical action plan to help preserve and maximise individual fertility, understand options and make better informed decisions about conception, family creation, biological identity and legacy. It also helps effectively navigate many complex fertility and family law issues, including:

  • Legal issues and options where women face rapidly declining age-related fertility and loss of opportunity for conception (e.g. fertility preservation and maximisation, management of existing personal relationships and implications of using donor gametes).
  • Delays in medical diagnosis and associated impact on individual fertility.
  • Difficulties with storage and use of frozen eggs, sperm and embryos in fertility treatment in the UK (e.g. lack of consent).
  • Issues associated with import of frozen gametes and embryos into the UK for use in fertility treatment and surrogacy (e.g. due to anonymous and commercially obtained gametes and embryos which engage UK public policy restrictions).
  • Issues associated with the export of frozen gametes and embryos abroad for use in fertility treatment and surrogacy (e.g. lack of consent).
  • Legal parentage disputes with an ex-partner, donor, co-parent, step-parent, surrogate.
  • Legal parentage disputes with a UK fertility clinic (e.g. problems and omissions with HFEA consent forms).
  • Acquisition of legal parentage following a domestic or international surrogacy arrangement.
  • Acquisition of legal parentage following a known donor arrangement.
  • Acquisition of legal parentage following a co-parenting arrangement.
  • An application to bring or defend a Declaration of Parentage (e.g. following a direct-to-consumer DNA test or to re-register a birth certificate).
  • An application to bring or defend a step-parent adoption order.
  • An application for an order to recognise a foreign adoption under English common law.
  • Unexpected death of a loved-one and related issues associated with posthumous storage and use of eggs, sperm and embryos in fertility treatment (e.g. due to an accident, illness including Covid-19).
  • Care and upbringing of children following a dispute with an ex-partner, parent, donor or surrogate.

Need a fertility lawyer or a family lawyer? If you would like to discuss your situation or you require specialist fertility, surrogacy and family law advice and assistance please contact Louisa Ghevaert by email louisa@louisaghevaertassociates.co.uk  or by telephone +44 (0)20 7965 8399.

You can read PRT’s full survey findings here.

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