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mproving choices for fertility patients during a pandemic
27 April 2020 - by Sarah Norcross
So many fertility patients are experiencing the heartbreak of IVF cycles being cancelled, or treatment being halted partway through a cycle, during the global coronavirus/COVID-19 pandemic. For some older patients who may not get another chance, the enforced cessation of treatment is particularly devastating.
Everyone working in the fertility sector recognises that time is of the essence for patients experiencing infertility. It is good to see the UK fertility community working together, through bodies such as the British Fertility Society and the Association of Reproductive and Clinical Scientists, to ensure that processes are in place for a safe and smooth reopening of fertility clinics as soon as this is deemed possible.
As clinics begin to operate once more in countries including Denmark, the Netherlands and Spain, the UK can learn from the experiences in these countries. The European Society of Human Reproduction and Embryology and the American Society for Reproductive Medicine are doing valuable work considering whether, when and how treatment might be resumed.
But resuming treatment is only part of the challenge. For people who fall afoul of age-related access criteria imposed by England's Clinical Commissioning Groups (CGCs), there has been no assurance that the clock has stopped ticking. Given the circumstances, the Progress Educational Trust (PET) – the charity that publishes BioNews – has been urging CCGs to effectively 'stop the clock' in relation to accessing NHS-funded fertility treatment, so that patients are not disadvantaged through no fault of their own.
PET understands that this is what will happen in Scotland, where fertility treatment is commissioned centrally. We hope CCGs will follow suit, and thereby help patients who already had to contend with an IVF postcode lottery before the current pandemic added to their difficulties.
We are delighted that our work has prompted the UK Government to stop the clock in one crucial respect – namely, by granting a two-year extension to the ten-year legal limit on storage of eggs, sperm and embryos, as reported elsewhere on BioNews this week. This extension is a pragmatic solution to the current situation, and will come as a huge relief to patients who have yet to use their frozen eggs, sperm or embryos to try for a baby.
However, there remains a broader problem to be resolved. The Government's announcement of an extension was influenced by – and underlines the importance of – PET's ongoing #ExtendTheLimit campaign, which calls for a substantial and permanent extension to the ten-year limit on the storage of eggs for non-medical (social) reasons.
This outdated and unscientific limit means that increasing numbers of women face a stark choice between seeing their frozen eggs destroyed, or becoming a mother before they are ready to do so. Please help PET change this situation by signing and sharing our #ExtendTheLimit petition at www.change.org/extendthelimit (if you can post a comment when you sign, then this is even better!).
PET also encourages everyone to respond online to the UK Government's current public consultation on this issue, before the consultation closes next week (on Tuesday 5 May).
The legal, social and medical issues surrounding egg, sperm and embryo freezing were explored at a PET event earlier this year, and PET has made this discussion more widely accessible in a series of online films. Another development reported on BioNews this week concerns special legal requirements for confidentiality and secrecy that apply to fertility treatment, and this too was explored at a recent PET event that is now available to watch online as a series of films.
Unfortunately holding face-to-face public events is not practical at the moment, which is why some of the PET events that were due to take place in coming weeks have had to be postponed or cancelled. But rest assured that we have plans to start holding some of our events online, and will have some exciting announcements to make about this in the near future.
In the meantime, we could not do any of the work discussed above without your support. We appreciate that times are tough and uncertain for many of you at the moment, but please donate what you can to our appeal.
If you are doing your shopping online, please try visiting Easyfundraising first. More than 4000 shops and websites will donate to us for free when you shop online with them using this service. Sign up to support us at www.easyfundraising.org.uk/causes/pet/
Meanwhile, if you are shopping on Amazon UK and you already have an account with them, the best way to support us is via Amazon Smile. In order to do this, go to https://smile.amazon.co.uk and log in using your usual Amazon account (if you are not logged in automatically). Alternatively, use this link to access the Amazon website before you start shopping, and donate a percentage of what you spend to us (at no extra cost to you).

We (HFEA) understand that some patients are concerned about the current situation with coronavirus (COVID-19) and the impact it has on their fertility treatment. This page provides information about coronavirus and fertility treatment, as well as links to support services.
We understand that patients are concerned about the current situation with coronavirus (COVID-19) and its impact of fertility treatment provision across the country.
Our role as the regulator
As the regulator, we are responsible for setting standards and monitoring the performance of fertility clinics and making sure they comply with the law. It is not our role to provide patients or clinics with medical advice, however as the COVID-19 outbreak has dramatically impacted on the health service across the country and the way fertility clinics can offer treatment, we’ve taken steps to keep patients and clinic staff safe.
What we've told clinics
In line with guidance from the British Fertility Society (BFS) and Association of Reproductive and Clinical Scientists (ARCS), we’ve issued General Directions which now require all clinics to have a COVID-19 strategy in place and to wind down their treatment services over the next three weeks.
General Directions are issued when we need to change clinic practice in line with new policy or guidance. General Directions are mandatory, meaning that all clinics must follow them. If a clinic fails to do so, it would be a breach of a statutory licence condition, which may have serious implications on their license, including suspending or revoking a clinic’s license.
Our Direction addressing the coronavirus (COVID-19) situation was implemented in line with the professional guidelines from the BFS and ARCS, as well as advice from the NHS that all non-urgent, elective surgery should stop by 15 April 2020 the latest.

Mar 20 2020

What fertility patients need to know about Covid-19 plans
British Fertility Society Chair, Dr Jane Stewart, explains how the fertility sector is responding to the current coronavirus pandemic. Dr Stewart has advice to patients and acknowledges that there will be significant disappointment as centres decide not to start new cycles of treatment


Coronavirus (COVID-19) infection and pregnancy
Version 4: Published Saturday 21 March 2020 - guidance for healthcare professionals on coronavirus (COVID-19) infection in pregnancy, published by the RCOG, Royal College of Midwives, Royal College of Paediatrics and Child Health, Public Health England and Health Protection Scotland.
The document above is for healthcare professionals. We have also prepared information for pregnant women and their families, drawn from this guidance:
Information for pregnant women and their families

Q&As relating to this guidance - updated 21 March 2020
Sign up here to receive the latest updates by email when the guidance is updated.
This guidance will be updated on a regular basis as new data becomes available.
If you would like to suggest additional areas for this guidance to cover, any clarifications required or to submit new evidence for consideration, please email COVID-19@rcog.org.uk.

24 February 2020 - by Professor Geeta Nargund
As the Medical Director of CREATE Fertility and long-term campaigner for gender equality and women's reproductive choices, I listened with earnest when Caroline Dinenage, former Health Minister, made the long overdue announcement last week that the Government will be reconsidering the current ten-year storage limit on eggs, sperm and embryos frozen for non-medical purposes. I am delighted the Government has acknowledged the hard work of the Progress Educational Trust (PET)'s #ExtendTheLimit campaign and has launched a public consultation.
Modern egg freezing is conducted with the use of vitrification (flash-freezing), which is a significant development that I have long felt to be the second wave of female equality, following the advent of the pill in the 1960s. Whilst egg freezing does not guarantee a baby in the future, it provides women with realistic options to manage the decline in female fertility after the age of 35, which has forced many to make tough decisions around when to start a family.
Egg freezing was originally used for women looking to preserve their fertility prior to cancer treatment, which would leave their fertility at risk. However, it is now also used by those who may need to delay having children for a range of other reasons, including not having met the right partner, pursuing a career, not being financially ready, or needing to focus on caring for a relative.
The term I prefer to use is 'AGE (Anticipated Gamete Exhaustion) banking' rather than 'social freezing', which I believe diminishes the process from a medical need to a mere wish. Egg freezing is a proactive and preventative action that women can take to preserve younger and healthier eggs until the time is right for them to become parents.
However, the full potential of this 'game-changing' medical innovation has been held back by the arbitrary ten-year storage limit for eggs frozen for 'non-medical' reasons. It was set before the introduction of vitrification, when the effects of long-term storage of frozen eggs and embryos were unknown. But with current knowledge about the safety and efficacy of vitrification, this limit is now outdated, and it is vital that it is extended if the full benefits of egg freezing are to be realised. The unintended consequence of the current limit is an unnecessary time pressure discouraging women from freezing in their late twenties to early thirties, when eggs are of highest quality.
Personally, I am not keen on an unrestricted extension, but suggest a further extension of ten years, with a possibility of further extension to be considered on a case by case basis. Extending the limit by ten years would provide women with flexibility when it comes to deciding when to freeze their eggs, enabling them to do so earlier, if they are able, when eggs are of highest quality. However, these extensions should be decided on an individual basis, taking age, fertility health and clinician's recommendations into account. This would avoid the unintended consequences of women having children in their sixties or seventies, when it may have a negative impact on both their health and the long-term welfare of the child.
Some, who are against egg freezing and the extension of this limit, have quoted the Human Fertilisation and Embryology Authority (HFEA) data that questions the success of frozen eggs. However, the HFEA does not include information on the method used to freeze eggs and therefore the national data may include eggs frozen using the old slow-cooling method, which is far less successful than the modern vitrification method. In addition, the data doesn't specify the age of the woman at egg freezing, which significantly impacts the chance of a successful pregnancy later.
Large data published in scientific journals since 2010 suggests that with the use of the modern vitrification technique, live birth rates using fresh or frozen-thawed eggs are comparable in women of similar age per oocyte and per cycle of treatment. Until reliable and large data are available in the UK, we need to look beyond our shores as we have a duty to provide women with clear, up-to-date and accurate data so that they can make fully informed decisions about the age at which they should freeze their eggs.
This Government consultation will have positive effects for women, men and couples in planning for their future families. Following the cabinet reshuffle last week, I hope that Matt Hancock will pursue this matter without delay.
Egg freezing has been transformed over recent years and is a truly life-changing medical development that empowers women with the ability to choose when the time is right for them to have children, without sacrificing a career or rushing a relationship. By discouraging women from freezing their eggs at a younger age when they are at their most healthy and fertile, the full emancipatory potential of egg freezing is limited by the ten-year storage limit. It is time for the law to change to realise this potential, and to catch up with today's technology and societal needs.

The government consultation on egg, sperm and embryo storage limits will be discussed at the Progress Educational Trust's free-to-attend event 'Freezing Eggs: What Are Your Choices? What Are Your Chances?' in London on the evening of Wednesday 29 April 2020.

by Dr Kirsty Horsey
The final session of the Progress Educational Trust (PET)'s annual conference 'Reality Check: A Realistic Look at Assisted Reproduction' asked: 'Should Fertility Patients Be Given What They Want, or What They Need?'
Sally Cheshire, Chair of the Human Fertilisation and Embryology Authority (HFEA), said that what fertility patients want most of all is a baby, or at least the chance to have a baby. She explained that many patients will do anything to achieve their aim, and that the regulator's job is to help them achieve this in the best way possible, as part of good care. She went on to explain that many patients won't (at least initially) get what they want, raising the point that 60 percent of patients self-fund their treatment, so the HFEA must help ensure that all patients get what they need.
As part of what patients need, Cheshire spoke about the information available to patients and the fact that honest, unbiased opinion about what might work needs to be published and transparent. She explained that it is difficult to regulate new and emerging treatments (not least the 'add-ons' discussed in earlier conference sessions), and that many of these treatments are not, in fact, currently regulated by the HFEA. However, the HFEA can offer information allowing patients to make informed choices about potential treatments, especially when it is sometimes hard for patients to find uncontradictory and unbiased information for themselves.
Overall, Cheshire's message was that the HFEA does not support patients spending money on (often unnecessary) 'add-on' treatments, citing an HFEA survey from last year, showing that three-quarters of patients had at least one add-on with their treatment. The HFEA rates 11 add-ons using a traffic light system. The green rating is reserved for procedures or techniques that have been shown to be effective and safe by at least one good-quality, randomised clinical trial. It was reported in the survey that none of the most common add-ons used were rated green.
Cheshire argued that clinicians selling add-ons without evidence do the fertility sector, and patients, a disservice. The HFEA will continue, as part of the inspections process, to look at information available on clinics' websites and at claims made by these clinics, as well as keeping an eye on some advice coming from the non-regulated sector.
In the next presentation, Dr Jane Stewart, chair of the British Fertility Society (BFS), asked what was difficult about taking medical advice. She said that the role of 'Dr Google' and events like the Fertility Show has both good and bad aspects. It is good that there is much up-to-date information available that can usefully stimulate debate, but this is mixed with out-of-date and commercially influenced information. How might patients tell the difference?
Dr Stewart went on to explain how the doctor-patient relationship has evolved over time, towards a spirit of mutual co-operation and patient-centred care, describing the doctor as a 'bridge between the world of medicine and the expectations and needs of patients'. She pondered whether reproductive medicine had redefined patients as consumers (she insisted on using the word 'patient') and asked what the harm is in giving all patients what they want. The harm, she said, can come from the fact that many patients are vulnerable, some are ill-informed, and most will do anything (including pay) to have the chance of having a child. Thus, the doctor has a duty to help the patient come to the right decisions for them, even if that means challenging their expectations and assumptions. 'It's OK to say no', she argued.
Professor Bobbie Farsides then told us about the power of words, explaining that 'wants' are something that we feel we would like to have, do or be. Simply, a preference. By contrast, 'needs' are things we require, because they are essential or important, not just desirable. She explained that it is easier to claim support for needs as they have more societal endorsement, whereas some wants are not seen as acceptable (though some individual assertions of needs are also deemed unacceptable). 'What starts as a dream becomes a project that's all-consuming', she said, adding 'for example the desire to become a mother turns into a need'.
Structural issues shape expectations in this domain, including the way society thinks and talks about parenthood and about what women are expected to do. Professor Farsides said that given these significant pressures, we (including the fertility sector) must ask whether there is a particular form of vulnerability in patients wanting what others want them to want. She argued that professionals must present a 'fair offer', for patients to consider and maybe accept, that is not against the patients' interests.
PET's head of communications Dr Catherine Hill then gave a personal response to the wants-versus-needs question, telling her story of infertility and the phone call, when she was 21, that changed the course of her life. What she wanted was a large family, though what she needed after that call was help and support, but she was offered none. She described this time as traumatic, leaving her needing to try to forge a new identity as a potential fertility patient.
On starting fertility treatment at 37 years of age, she was shocked to find that she was not eligible for IVF on the NHS, but pleased to be told she 'had the eggs of a 30-year old'. This turned out not to be true – the test she was given only measured quantity, not quality. A new clinic told her to use an egg donor, and, when she used her own eggs, the clinic suggested preimplantation genetic screening (PGS) (itself a contentious 'add-on'). This resulted in two embryos, and led to her having a daughter.
Dr Hill said she wished she had been better informed throughout this process. She argued that fertility patients' needs include emotional support, fair access to NHS-funded IVF, fertility education (which becomes more pressing as more and more procedures are offered), and better fertility preservation options. She added that funding of NHS fertility services, as well as monitoring of the funding situation, is incredibly important.
In the discussion chaired by Fiona Fox, chief executive of the Science Media Centre, there was generally much agreement with the speakers. Cheshire, responding to a point from the audience, said that fertility education was not a key responsibility of the HFEA but that they try to do it anyway. She added that the BFS has an ongoing education project, and suggested that perhaps the HFEA could be a conduit for information in new ways in future. Dr Hill added that it was hard to fathom why fertility education and the Fertility Fairness campaign lacks funding, when the fertility industry is worth so much.
Professor Farsides said that the old-fashioned view that the regulator was something to push against no longer holds true. She argued that clinics, and the fertility industry more widely, should work with the regulator to ensure that patients get both what they want and what they need.

However men are still very much involved
20 January 2020 - by Professor Marcia C. Inhorn
Women are electing to collect and freeze their eggs in the hope of preserving fertility for the future. A common assumption is that this is to allow time to become established in a career but, in fact, only around two percent of the women we interviewed did so for that reason.
For most women it was the lack of a partner they wish to parent with that drove them to freeze their eggs. But that doesn't mean that men are excluded from the process.
We found that male partners, ex-partners, friends, fathers, brothers and even judges played a role in about two thirds of cases.
In a binational study, published in Human Fertility and presented in Edinburgh last week at Fertility 2020, 150 women in the USA and Israel were asked about their experiences with egg freezing. Most of these women were already established in a career and were high-fliers in business, the health sciences and other chosen professions.
In our late 30s, which is the age at which many of these women chose fertility preservation, women's fertility begins to drop rapidly. So, this was very much a case of either freezing eggs now or accepting that having a baby in the future might be especially difficult.
About a third of the cohort were going through fertility preservation alone or with support from female relatives and friends, but for the rest, men were providing more than a dozen types of support, which were grouped into four categories: instrumental; financial; physical; psychological.
Support from men: Some male support happens during the decision-making process. Men helped to research fertility preservation and found useful information on egg freezing for their female partner, family member or friend.
There could be financial support from a father or father figure, something that was found to be very common in the Israeli group. 
Brothers sometimes provided emotional support to their sisters undergoing elective egg freezing, bringing a curated music playlist, or making jokes and providing distraction to make egg collection more comfortable. 
There was also male support that was important after egg collection, which includes a general anaesthetic. The majority of clinics require that a patient is accompanied home after the procedure.
In a handful of cases a male judge might mandate a man to pay for egg freezing as part of a divorce settlement.
Why are women remaining single? It is heartening to hear these stories of partnership and support outside of a romantic relationship. But it does also raise the question of why these women struggle to find a partner to parent with. In fact, even in cases where women were in a relationship (either new or long standing) only a small number went on to marry their partner with most, ultimately, splitting up.
Some women related their partnership problems to the prevalence of so-called 'Peter Pan syndrome' among men. Women find a lot of men their own age too immature or unready to parent. It may also be down to demographic changes.
In the USA there are now four women for every three men in higher education. And once this education is completed women tend not to want to 'marry down' and partner with a man who has a lower level of educational achievement.
When the cohort was asked about relationships, some also said that they felt that men their age or older were looking for younger female partners. They thought that by the time a man is mature enough and ready to be a father they do not want to form relationships with women who are of the same age and perhaps less fertile.
Will egg freezing become as ubiquitous as oral contraception? Carl Djerassi, the chemist, playwright and novelist whose work was instrumental in development of the first contraceptive pill, said that he thought one day everyone would be freezing their eggs. While technically we can now do this and the techniques for freezing and thawing are improving all the time, only about one in five cycles will enable a woman to have a baby.
Still, it does seem that for highly educated single women, elective egg freezing is becoming normalised. And although these women are struggling to find partners, we should not assume that men have no interest in being involved. 
At present there are a few companies that will fund egg freezing as an employment benefit but most of the women we spoke to were self-funding. That does exclude women who do not have the financial means, or a parent, friend or sibling who can give or loan money for elective egg freezing.
So, it seems unlikely that everyone will be undergoing elective egg freezing any time soon. But in the future, who knows. What we do know is that men are stepping up to support the women in their lives as they go through egg freezing, and that is something to be acknowledged positively.

12 August 2019 - by Sarah Gregory
A couple in Ohio is suing a fertility clinic and associated organisations after a genetic test given as a Christmas present revealed a sperm mix-up in their IVF treatment.
Using a DNA kit, Joseph Cartellone discovered that he was not biologically related to his daughter, who had been conceived following IVF treatment at the Christ Hospital and the Greater Cincinnati Institute for Reproductive Health in 1994. The family is now suing for unspecified damages.
'It's hard to explain the shock and agony when you find out that someone you love and care for - your own daughter - is not genetically related to you,' Joseph Cartellone said at a Washington DC news conference. 'There's a mix of anger, pain and confusion that comes along with having to accept this and having to break the news to our family.'
Joseph and Jennifer Cartellone started IVF treatment at the Christ Hospital in 1993. The following February, Jennifer had three embryos transferred to her uterus, which she and her husband believed were made from her eggs and his sperm. She subsequently became pregnant with their daughter Rebecca.
However, last Christmas, Rebecca bought the family DNA kits from Ancestry.com to explore their heritage and the results, later confirmed by a paternity test, showed that father and daughter were not biologically related. The Cartellones still do not know the identity of Rebecca's biological father, but a private investigation by the family has traced him back to a handful of men, including a doctor working at the hospital at the time.
Joseph Cartellone said that his wife now 'has to deal with the fact that this clinic… fertilised her eggs with a complete stranger's sperm and placed them in her body' and in an interview with Good Morning America said that his daughter is 'experiencing significant emotional stress and confusion concerning her own identity'.
A lawsuit has been brought against the Cincinnati Institute for Reproductive Health, the associated The Christ Hospital, and Ovation Fertility, and includes counts of breach of contract, battery and negligence. The Cartellones are also seeking damages for facilities to reveal who fathered Rebecca and how the alleged mishap occurred; they also want to know if Joseph Cartellone's sperm was used by another of the clinic's clients.
'These clinics need to be held accountable and they need to suffer real consequences for their actions,' said Joseph Cartellone. 'We're willing to do whatever it takes to make sure that this doesn't happen again to anyone else.'
The current case highlights the insufficient regulation of fertility clinics in the USA, whereby  'error reporting is essentially voluntary, and tragic cases of lost, destroyed or otherwise improperly handled embryos appear to be on the rise' according to a recent report by law firm Peiffer Wolf Carr and Kane. The firm, which is representing the Cartellones, said that 'nail salons are subject to far tighter state and federal controls than US fertility clinics'.

Re TT and YY: 7 October 2019 - by Liam Davis
In Re TT and YY [2019] EWHC 1823 (Fam), the UK High Court decided that a trans man (called TT in court documents), could not be named as a 'father' on his child's (YY) birth certificate because he gave birth to YY. Instead, he had to be named as the 'mother'.
The facts of Re TT and YY have been previously documented (see BioNews 1017). TT was assigned female at birth, later transitioned to male and is now called Freddy McConnell. He received a Gender Recognition Certificate (GRC) under the Gender Recognition Act 2004 (GRA), legally stating his gender (and sex) as male. Central to this case was whether this meant the Registrar General should register him as the child's father. The Registrar General refused, leading TT to request a judicial review of the decision.
The definition of 'mother'
In deciding that TT could not be registered as the 'father', the judgment defines 'mother' for the first time under English common law. Sir Andrew McFarlane (President of the Family Division of the High Court), framed 'mother' status purely in terms of reproductive experience (para. 279). He says that 'mother' status follows from the 'biological role in giving birth' and is separate from one's gender: TT is a 'male mother'. 'Male' in the sense that TT has received legal recognition of his male gender but a 'mother' due to giving birth. Therefore, it is accepted that those of the male gender can give birth.
The decision raises a potential inconsistency between this legal meaning of 'mother' and its everyday meaning, which seems to be gendered, and is thus an unacceptable term for most trans men. Since TT has been afforded legal recognition as a male, he sees 'father' as more appropriate, and some may question why the birth-giver should be termed a 'mother' other than because this is how the law has always operated.
The judge also considered the meaning of 'mother' in various statutory contexts. Important amongst these was section 33(1) of the Human Fertilisation and Embryology Act 2008, which says that the 'mother' is the 'woman' who gives birth.
Some feminists have actively sought to disassociate motherhood from childbirth, arguing that 'motherhood' is a state of doing rather than something achieved automatically through childbirth. The definition may also fail to engage with the lived reality of trans people, surrogates – who largely do not see themselves as mothers – and adoptive parents.
The option for trans men to be registered as a 'parent' was not discussed in the judgment, despite forming part of TT's arguments.
Aside from the common law, the case also considered the situation under the European Convention on Human Rights (ECHR). It was accepted that the UK's birth registration scheme did interfere with TT and YY's Article 8 ECHR right to a private and family life, but this was found to be proportionate and justified. This was because naming the birth-giver 'mother' was necessary for a 'coherent and certain' birth registration scheme (paras. 270 to 271), which also upholds the rights and interests of others.
Retention of the 'traditional' (sexual) family and mismatches between law and identity
The law may be seen to privilege a certain portrayal of 'family' life. On parental orders and adoption certificates (which transfer legal parenthood in cases of surrogacy and adoption, respectively), there is no field for 'mother' or 'father' – only 'parent'. Technically, then, a child can only have a mother and father (correctly identified) by being born to a cisgendered, heterosexual woman, and her male partner. There is no provision to have two 'mothers' or 'fathers', and certainly no way to have more than two legal parents (which can be achieved in jurisdictions such as British Columbia, Canada, and California).
There is also an inherent tension between sections 9 and 12 of the GRA: someone can 'acquire' a gender (and sex) under section 9 'for all purposes', but under section 12 this is not recognised in relation to parenthood. This mismatch inevitably brings into question the purpose of a GRC and legal gender recognition generally. A Government-led consultation on the GRA closed in October 2018, so some of these aspects may be considered.
It may also be argued that TT and YY's Article 14 ECHR rights (prohibition of discrimination) were not given sufficient weight, because birth registration issues will, potentially, impact trans people disproportionately. The balancing exercise between trans people and other affected parties was clearly in favour of ensuring 'coherency and certainty' as understood by the 'traditional' cis-heteronormative family.
This judgment may seem at odds with the growing acceptance of the rise in 'non-traditional' family structures.
One option open to the judge would have been to issue a declaration of incompatibility, especially as some EU countries (like Sweden) allow trans parents to register births in their 'acquired' gender. The European Court of Human Rights has also made several decisions reflecting the 'social reality' of family life which may mean that trans men and women should be registered according to their 'acquired' gender (and sex) in the interests of all involved.
In his judgment, Sir Andrew called on Government and Parliament to address the issue of a trans man giving birth 'square-on' (having also previously called for a review of existing fertility laws- see BioNews 987).

29 July 2019 - by Dr Nicoletta Charolidi
Women in England with advanced ovarian cancer will now have access to a drug that could help halt the progression of their disease much earlier in their course of treatment.
Olaparib is a targeted cancer drug that has been shown to delay signs of relapse and reduce the chance of death in women who have BRCA-mutated ovarian cancer (see BioNews 973). Previously, olaparib was only available to patients who had had surgery or been treated with three different chemotherapy drugs. The latest decision means patients will now be offered the drug after one round of chemotherapy.
Chief executive of The Institute of Cancer Research, Professor Paul Workman, said: 'It's fantastic news that olaparib will now be available on the NHS for women who have advanced ovarian cancer and inherited BRCA mutations much earlier in the course of treatment when they are most likely to benefit.'
Rose Gray, Cancer Research UK's policy manager also welcomed the decision, saying that it's 'fantastic news' and 'will offer new hope' to those affected by ovarian cancer. 
The recommendation came following an ongoing phase-three clinical trial, showing that olaparib can delay ovarian cancers and reduce the risk of disease progression and death by 70 percent, when compared to a placebo drug. Sixty percent of patients who took olaparib showed no progression of their cancer after three years, in comparison to 27 percent of patients who received the placebo treatment.
Dr Susana Banerjee, a consultant medical oncologist at the Royal Marsden in London and Institute of Cancer Research, who co-led the trial, described the drug as a ‘practice-changing treatment'. And added that ‘treatment with olaparib heralds a new era for women with ovarian cancer - this is the first time we have seen such dramatic improvements in progression-free survival. This means more women will have a longer time before relapse, time of chemotherapy and the possibility of increased survival.'
Olaparib is made by AstraZeneca and belongs to the class of PARP (poly-ADP ribose polymerase) inhibitor drugs, so called because they block the protein PARP from repairing damaged DNA in cancer cells causing them to die. The extension of olaparib treatment will be paid for through the Cancer Drugs Fund (CDF), and the potential of the drug to extend patients' lives will continue to be assessed.
'Because it's been recommended for the CDF, patients will be able to access the drug while more evidence is gathered on its longer-term benefits,' said Gray.
Wales and Northern Ireland will most likely adopt the same practice. Scotland is also considering approving the drug.
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One in six women conceive naturally after unsuccessful IVF
29 July 2019 - by Jakki Magowan
The chances of having a treatment-independent live birth following IVF or ICSI are favourable, say researchers at the University of Aberdeen.
New study results found that one in six (17 percent) of patients experiencing unsuccessful cycles of IVF went on to have a baby without help, within five years.
'IVF is not something that couples take on lightly,' said lead researcher Dr David McLernon. 'It can be a physically and emotionally demanding process even if treatment is successful. When it is unsuccessful, understandably couples can be left distraught ... This study gives couples a clearer idea of their chances of conceiving naturally, even after IVF has been unsuccessful.'
Conception rates were recorded by Dr McLernon and his team at an IVF unit in Aberdeen. The study included 2,133 women who had received treatments between 1998 and 2011 who were followed-up between one and 15 years later.
1,060 of these women achieved a live birth following successful IVF or ICSI and 15 percent went on to have another live birth, independent of treatment within five years. The remaining 1,073 whose treatment resulted in no pregnancy or pregnancy loss went on to have a live birth (17 percent).
According to their report, among unsuccessfully treated women, the chance of post-IVF live birth was reduced in those with tubal factor infertility. The researchers also acknowledge that data was unavailable on the women's use of contraception or active attempts to get pregnant which could influence treatment-independent live birth rates.
However, the study, funded by the Scottish Government Chief Scientist Office and published in Human Reproduction is the largest of its kind. A small number of other studies have investigated treatment-independent conception following IVF, but the majority were based on surveys with poor response rates and limited sample sizes.
'This study looked at data from more than 2,000 women which we think makes it one of the most robust studies of its type,' said McLernon. 'Hopefully with this information patients will be able to make an informed choice about their next moves after treatment.'

29 July 2019 - by Dr Nicoletta Charolidi
Women in England with advanced ovarian cancer will now have access to a drug that could help halt the progression of their disease much earlier in their course of treatment.
Olaparib is a targeted cancer drug that has been shown to delay signs of relapse and reduce the chance of death in women who have BRCA-mutated ovarian cancer (see BioNews 973). Previously, olaparib was only available to patients who had had surgery or been treated with three different chemotherapy drugs. The latest decision means patients will now be offered the drug after one round of chemotherapy.
Chief executive of The Institute of Cancer Research, Professor Paul Workman, said: 'It's fantastic news that olaparib will now be available on the NHS for women who have advanced ovarian cancer and inherited BRCA mutations much earlier in the course of treatment when they are most likely to benefit.'
Rose Gray, Cancer Research UK's policy manager also welcomed the decision, saying that it's 'fantastic news' and 'will offer new hope' to those affected by ovarian cancer. 
The recommendation came following an ongoing phase-three clinical trial, showing that olaparib can delay ovarian cancers and reduce the risk of disease progression and death by 70 percent, when compared to a placebo drug. Sixty percent of patients who took olaparib showed no progression of their cancer after three years, in comparison to 27 percent of patients who received the placebo treatment.
Dr Susana Banerjee, a consultant medical oncologist at the Royal Marsden in London and Institute of Cancer Research, who co-led the trial, described the drug as a ‘practice-changing treatment'. And added that ‘treatment with olaparib heralds a new era for women with ovarian cancer - this is the first time we have seen such dramatic improvements in progression-free survival. This means more women will have a longer time before relapse, time of chemotherapy and the possibility of increased survival.'
Olaparib is made by AstraZeneca and belongs to the class of PARP (poly-ADP ribose polymerase) inhibitor drugs, so called because they block the protein PARP from repairing damaged DNA in cancer cells causing them to die. The extension of olaparib treatment will be paid for through the Cancer Drugs Fund (CDF), and the potential of the drug to extend patients' lives will continue to be assessed.
'Because it's been recommended for the CDF, patients will be able to access the drug while more evidence is gathered on its longer-term benefits,' said Gray.
Wales and Northern Ireland will most likely adopt the same practice. Scotland is also considering approving the drug.
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One in six women conceive naturally after unsuccessful IVF
29 July 2019 - by Jakki Magowan
The chances of having a treatment-independent live birth following IVF or ICSI are favourable, say researchers at the University of Aberdeen.
New study results found that one in six (17 percent) of patients experiencing unsuccessful cycles of IVF went on to have a baby without help, within five years.
'IVF is not something that couples take on lightly,' said lead researcher Dr David McLernon. 'It can be a physically and emotionally demanding process even if treatment is successful. When it is unsuccessful, understandably couples can be left distraught ... This study gives couples a clearer idea of their chances of conceiving naturally, even after IVF has been unsuccessful.'
Conception rates were recorded by Dr McLernon and his team at an IVF unit in Aberdeen. The study included 2,133 women who had received treatments between 1998 and 2011 who were followed-up between one and 15 years later.
1,060 of these women achieved a live birth following successful IVF or ICSI and 15 percent went on to have another live birth, independent of treatment within five years. The remaining 1,073 whose treatment resulted in no pregnancy or pregnancy loss went on to have a live birth (17 percent).
According to their report, among unsuccessfully treated women, the chance of post-IVF live birth was reduced in those with tubal factor infertility. The researchers also acknowledge that data was unavailable on the women's use of contraception or active attempts to get pregnant which could influence treatment-independent live birth rates.
However, the study, funded by the Scottish Government Chief Scientist Office and published in Human Reproduction is the largest of its kind. A small number of other studies have investigated treatment-independent conception following IVF, but the majority were based on surveys with poor response rates and limited sample sizes.
'This study looked at data from more than 2,000 women which we think makes it one of the most robust studies of its type,' said McLernon. 'Hopefully with this information patients will be able to make an informed choice about their next moves after treatment.'

29 July 2019 - by Rachel Siden
A new report has called for genome sequencing to be trialled alongside the nine tests that currently comprise newborn screening in the UK.
Including genome sequencing would facilitate testing for a greater number of rare genetic conditions and diseases, bringing the UK in line with the level of genetic testing performed in other countries, according to Genetic Alliance UK's report.
'The pace of adoption of new blood spot screening programmes in the UK has become so slow that we have been left behind by the majority of high-income countries,' Dr Jayne Spink, Chief Executive of Genetic Alliance UK, told HuffPost. 'It is painful to think of the unnecessarily long diagnostic pathways that some families in the UK must endure, and worse to think of the missed opportunities – including treatment.'
In the UK, parents can consent to have a blood sample taken from their newborn which is then sent away and tested for nine conditions that are rare, but serious. Getting an early diagnosis of a rare disease before symptoms begin can help families pursue treatment early or plan for the family's future. In other countries, a broader number of rare diseases and other conditions are tested for in the screening. Many countries in Europe test for 20 or more conditions, and US parents can opt to test for more than 50.
Which tests are included in newborn screening is determined by the UK National Screening Committee, which makes recommendations every three years. The Genetic Alliance UK report recommends that genome sequencing be piloted alongside current screening. Adding genome sequencing could expand the range of conditions tested for, and has the potential to shorten the period of diagnosis while remaining cost-effective.
'We have to ensure that newborn screening keeps pace with diagnosis in later life and we must embrace the potential of both current technology and that of genetics.' Said Dr Spink.
The National Screening Committee will be making its next recommendations in the Autumn.