At the beginning of December, we kept up our tradition of attending the Progress Educational Trust\u2019s (PET) annual conference. The title and topic of this year\u2019s online event was \u2018Reproducing Regulation: Who Regulates Fertility and How?\u2019 With 16 talks across the full day, I have chosen just a handful here that I thought were particularly pertinent to the issues that we consider in our research.<\/p>\n\n\n\n
The first speaker of the day was Julia Chain, chair of the Human and Embryology Authority, who had made headlines in the run-up to the conference with her call for changes to the 1990 Human Fertility and Embryology Act. Her proposed changes would enable the HFEA to impose economic sanctions on fertility clinics that mis-sell unproven treatment add-ons. While she emphasised that her call was not a complete rejection of the current regulatory framework, she highlighted the need to update certain areas of the act to reflect the current state of society and the fertility sector. Currently, she noted, the HFEA has no powers to regulate the increasingly commercialised provision of services. Private fertility treatment is increasingly the norm in the UK, with 65% of IVF treatment being self-funded by patients themselves.<\/p>\n\n\n\n
Reflecting on the commercialised fertility sector, Raj Mathur from the British Fertility Society brought attention to questions of fairness and equity and the lack of NHS funding for fertility treatment. Many prospective patients, he reminded us, do not have any access to IVF and when they do, affordability is a huge cause of concern. Mathur spoke about the challenges for patients who have to navigate very complex regulations around the provision of funding, before they even reach the point of having to choose between different treatment offerings.<\/p>\n\n\n\n
A significant challenge to regulating the fertility sector is the fast pace of innovation. In her talk entitled \u2018What is an add-on, and who gets to decide?\u2019 Anja Bisgaard Pinborg, a specialist in reproductive medicine at Copenhagen University, detailed the difficulties of regulating add-ons safely without stifling the progress of medical research. She explained how the European Society of Human Reproduction and Embryology (ESHRE) is working on a new guideline for regulating add-ons. This guideline includes a very extensive range of tests, treatments and techniques, which reflects the vast and complex offerings of the fertility sector. While Bisgaard Pinborg recognised the obligation of clinics to offer the best treatment to their patients and the strong desires that patients may have to try certain (perhaps more experimental) treatments, she also highlighted that patients should never bear the cost of innovation. Patients, she argued, should not pay for add-ons that are still under development. How fertility patients and professionals navigate the complex world of IVF add-ons is something we have covered extensively in our research publications<\/a>, workshops<\/a> and in this blog post<\/a> on how to best support patients\u2019 informed decisions.<\/p>\n\n\n\n Further examples of how the law and regulation lag behind change were raised by Emily Jackson later in the day. Jackson set out how definitions of \u2018mother\u2019 in UK fertility law do not easily apply to the new social and family formations that are enabled though reproductive technologies. Currently, the legal definition of mother is defined in terms of who physically gives birth to a child. One of the examples presented by Jackson involved the case of a child that has two female parents at birth. In this case, the person who gives birth is the mother and the partner is the second legal parent. This is also the case when the partner\u2019s egg was used in the IVF treatment. Interestingly in this case, as Jackson pointed out, the second parent is actually the child\u2019s closer genetic relation. Fatherhood on the other hand, is expressed in both genetic and social terms, which allows for greater flexibility and choice in how fatherhood is defined. <\/p>\n\n\n\n Again, this year\u2019s PET conference succeeded in traversing a wide range of perspectives on the most pressing issues confronting the fertility sector right now.<\/p>\n","protected":false},"excerpt":{"rendered":" At the beginning of December, we kept up our tradition of attending the Progress Educational Trust\u2019s (PET) annual conference. The title and topic of this year\u2019s online event was \u2018Reproducing Regulation: Who Regulates Fertility and How?\u2019 With 16 talks across the full day, I have chosen just a handful here that I thought were particularly […]<\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"spay_email":"","footnotes":"","jetpack_publicize_message":"","jetpack_is_tweetstorm":false,"jetpack_publicize_feature_enabled":true},"categories":[8,21],"tags":[6,11,20],"class_list":["post-617","post","type-post","status-publish","format-standard","hentry","category-conferences","category-news","tag-conferences","tag-ivf","tag-reproductive-technology"],"jetpack_featured_media_url":"","jetpack_publicize_connections":[],"jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p9YI6o-9X","jetpack-related-posts":[{"id":247,"url":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/?p=247","url_meta":{"origin":617,"position":0},"title":"Our Year in Review","date":"1st March 2019","format":false,"excerpt":"2018 has been a busy year for the Remaking the Human Body team. We are happy to share that we have, so far, conducted observations at 5 sites and have interviewed more than 50 professionals and patients about their views on time-lapse, IVF technology, and add-ons in the UK. This\u2026","rel":"","context":"In "Conferences"","img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]},{"id":369,"url":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/?p=369","url_meta":{"origin":617,"position":1},"title":"PET’s annual conference: COVID-19 and the fertility sector","date":"16th December 2020","format":false,"excerpt":"I had the pleasure of attending this year\u2019s online Progress Educational Trust (PET) annual conference where the topics for consideration were fertility, genomics and COVID-19. Consultant Jane Stewart opened the first session by speaking about the experiences of fertility clinics and she used the surfing analogy of \u2018riding the wave\u2019\u2026","rel":"","context":"In "Conferences"","img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]},{"id":278,"url":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/?p=278","url_meta":{"origin":617,"position":2},"title":"PET\u2019s annual conference: Reality check! Questions of evidence","date":"17th December 2019","format":false,"excerpt":"The Progress Educational Trust\u2019s (PET) annual conference has become an established event in our December calendar and this year we continued the tradition. This year's conference was entitled \u2018Reality check: A realistic look at assisted reproduction\u2019 and dealt with a range of topics including evidence, regulation, informed choice for patients\u2026","rel":"","context":"In "Conferences"","img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]},{"id":157,"url":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/?p=157","url_meta":{"origin":617,"position":3},"title":"ESHRE 2018","date":"25th July 2018","format":false,"excerpt":"At the beginning of this month, I had the pleasure of attending one of the biggest conferences on reproduction, organized by the European Society for Human Reproduction and Embryology (ESHRE). The ESHRE 2018 annual meeting took place in Barcelona, so, needless to say, I was brimming with excitement not only\u2026","rel":"","context":"In "Conferences"","img":{"alt_text":"","src":"https:\/\/i0.wp.com\/remakingthehumanbody.sbm.qmul.ac.uk\/wp-content\/uploads\/2018\/07\/ESHRE.png?resize=350%2C200&ssl=1","width":350,"height":200},"classes":[]},{"id":235,"url":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/?p=235","url_meta":{"origin":617,"position":4},"title":"Better regulations or no regulations? Thoughts on PET\u2019s 2018 conference","date":"13th December 2018","format":false,"excerpt":"The annual conference of the Progress Educational Trust (PET), 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?' could not have been more timely. Held at the beginning of December, it shortly followed emerging reports from China that the first gene-edited babies will soon be born. While\u2026","rel":"","context":"In "Conferences"","img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]},{"id":225,"url":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/?p=225","url_meta":{"origin":617,"position":5},"title":"Patients and IVF add on treatments","date":"15th January 2019","format":false,"excerpt":"Since the start of the \u2018Remaking the Human Body\u2019 project there have been some significant developments in debates around the state of fertility treatment in the UK. Just over two years ago, BBC Panorama presented a documentary entitled Inside Britain\u2019s Fertility Business\u00a0(28 November 2016) that questioned the quality of scientific\u2026","rel":"","context":"In "Topical"","img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]}],"_links":{"self":[{"href":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/index.php?rest_route=\/wp\/v2\/posts\/617","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/index.php?rest_route=\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=617"}],"version-history":[{"count":6,"href":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/index.php?rest_route=\/wp\/v2\/posts\/617\/revisions"}],"predecessor-version":[{"id":628,"href":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/index.php?rest_route=\/wp\/v2\/posts\/617\/revisions\/628"}],"wp:attachment":[{"href":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=617"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=617"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/remakingthehumanbody.sbm.qmul.ac.uk\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=617"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}