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Issue 924 (30 October 2017)


Welcome to BioNews by email, published by the Progress Educational Trust, providing you with news, comment and reviews on genetics, assisted conception, embryo/stem cell research and related areas.

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News Digest




Life after death - a woman's victory in having her deceased husband's children

30 October 2017

By Professor Eric Blyth

Appeared in BioNews 924

In 1995, following the unexpected death of her husband Stephen, Worksop widow Diane Blood embarked on a path that would eventually result in two legal battles with British authorities; battles in which she garnered extensive public support, from which she emerged the victor. Outcomes of her case included new legislation, the Human Fertilisation and Embryology (Deceased Fathers) Act 2003.

Numerous scholarly accounts have been written about the 'Blood case' and its implications. Briefly, the facts are that following admission to the Royal Hallamshire Hospital, Sheffield in February 1995 with what was subsequently diagnosed as meningitis, Stephen aged 30, never recovered. At the time of his admission, the Bloods were actively trying for a family. When it became apparent that Stephen would not recover, Diane requested that his sperm be taken and stored so that she could carry one or more of his children at a later stage.

At the time, regulations required that a man's written consent be obtained before taking and storing sperm, although the possibility of taking sperm from a comatose man had not been considered. In the absence of a clear direction from the regulator, the HFEA (Human Fertilisation and Embryology Authority), the head of obstetrics and gynaecology at Sheffield, Professor Ian Cooke, arranged for Stephen's sperm to be taken and stored. Subsequently the HFEA confirmed that this procedure had been illegal, and when Diane sought to use the sperm in order to conceive permission was refused. Thus began the first of her legal challenges to the law and the HFEA.

Eventually the Court of Appeal decided in her favour, by referring to EU rather than UK legislation. The effect was that while she could not undergo insemination in the UK, she was free to do so elsewhere in the EU if she could find a clinic willing to offer the procedure. A clinic in Brussels agreed to treat her and her first son, Liam, was born in 1998.

However, the law prevented Diane from registering Stephen as the father of Liam or her second son Joel, who was born in 2002. Diane determined to challenge this law, and the High Court ruled that it was incompatible with the European Convention on Human Rights and the Human Rights Act. Diane subsequently wrote of her experiences in the autobiographical Flesh and Blood: The Human Story Behind the Headlines (Mainstream Publishing: Edinburgh, 2004).

The Progress Educational Trust (PET) event 'Life after Death: A Woman's Victory in Having Her Deceased Husband's Children' - held in Sheffield on 24 October 2017, and produced in partnership with the University of Sheffield and with the support of the Wellcome Trust - enabled an audience of around 200 to hear first-hand the human side of this story, from some of the key participants.

Chaired by Allan Pacey, PET trustee and professor of andrology at the University of Sheffield, the evening adopted an 'in conversation' format with a panel including Diane and Liam, Professor Ian Cooke, and Michael Fordham QC, a member of Diane's legal team and godfather to Liam and Joel.

The discussion highlighted how events took the course they did - serendipity, a willingness not to always follow the rules, and UK membership of the EU all having key roles to play. The audience also learned something of Liam's experiences growing up in the spotlight, including being 'a topic' on a GCSE syllabus and dealing with the reactions of college friends who had carried out Google searches of each other.

Asked about growing up without a father, Liam said he had always felt his father's presence despite never meeting him: 'It was never a case of I knew him and lost him, in a way he has always been there. Even though I never met him, I feel like I know who he was.'

Ian Cooke, recounting the crucial decision to take Stephen's sperm, said that he was aware of the requirement regarding written consent and sperm storage. However, he also believed that a situation like the Bloods had not been anticipated. Given a very short window in which to make a decision, the fact that the chair of the HFEA was unable to take his phone call led him to decide to go ahead anyway.

'I thought I have one chance here, it seemed rational out of sheer humanity that I should do this,' he said.

The case could always be argued later, but if the sperm was not taken in the first place, there would never be a case to argue.

It was also fortuitous that working with Ian at the time was a PhD student studying auto-ejaculation, the procedure necessary to take sperm from a comatose man.

Given the absence of Stephen's written consent, when the case came to court what was also crucial was that prior to Stephen's illness, he and Diane had read a newspaper story about another couple to whom this had happened and discussed this as a 'what if?' instance for them. Diane was able to convince the court that the outcome of this conversation provided evidence that taking his sperm accorded with his known wishes.

Michael Fordham emphasised that the UK's membership of the EU was crucial to the eventual decision since, even though UK law prevented a UK clinic from using Stephen's sperm to inseminate Diane, the procedure could be undertaken in a EU country that did not have similar restrictions to those in the UK. In the event, the Brussels clinic's ethics committee voted by a majority of one to offer her treatment.

Following Diane's experience, it is commonly assumed that nothing like this could ever occur again, as the law was clear. Debate from the audience indicated that similar, more recent requests to take sperm from men without their written consent had been refused. However, Michael Fordham threw a final spanner into the works - and a challenge to fertility clinic medical directors - by reminding the audience that Diane's case had gone only so far as the Court of Appeal. Any future instance would doubtless be heard by the Supreme Court, which could well be sympathetic.

The Progress Educational Trust would like to thank the University of Sheffield for collaborating on this event, and the Wellcome Trust for supporting this event.



27 November 2017 - by Dr Rosie Gilchrist 
Men living in areas with higher air pollution are also more likely to have a higher proportion of abnormally shaped sperm...
13 November 2017 - by BioNews 
This film documents a Progress Educational Trust/University of Sheffield event which marked 20 years since widow Diane Blood won the legal right to conceive a child using the sperm of her deceased husband...

18 September 2017 - by Shaoni Bhattacharya 
An Australian court is considering whether a woman can use her dead partner's sperm to have a baby...
04 July 2016 - by Emma Nottingham 
The case of Samantha Jeffries - a widow who is trying to save the embryos she created with her husband before his death - holds lessons both for fertility clinics and for the HFEA...
15 February 2010 - by Caroline Gallup 
Stephen Blood died in 1995, following the sudden onset of bacterial meningitis. His widow, just twenty-eight years old, hit the headlines after fighting for the right to use his sperm to conceive their child. Flesh and Blood tells the human story behind the headlines...
03 December 2003 - by BioNews 
Diane Blood has re-registered the birth of her two sons, born following the use of sperm taken from her dead husband. In September 2003, she succeeded in her five-year campaign to have her late husband's name on her children's birth certificates. Until 1 December, Liam and Joel Blood's birth certificates...
22 September 2003 - by Juliet Tizzard 
This week the law in the UK has been changed to allow the name of men who have died before their child was conceived to appear on that child's birth certificate. It's not a radical change in the law or any great philosophical shift in the way that we regulate...


RNA editing tools could create new disease therapies

30 October 2017

By Dr Rachel Huddart

Appeared in BioNews 924

A new molecular tool to change individual letters in an RNA sequence may open up new possibilities for gene therapy.

Scientists at the Broad Institute in Cambridge, Massachusetts, developed a method similar to the CRISPR/Cas9 genome editing system for DNA.

'This new ability to edit RNA opens up more potential opportunities to... treat many diseases, in almost any kind of cell,' Professor Feng Zhang, who led the research, told the BBC.

DNA sequences encode instructions to make proteins, and are used as templates to make RNA molecules. RNA is transported through the cell to structures called ribosomes, where the proteins are made.

Most mutations in DNA which cause disease change these protein-making instructions. For example, they may produce a protein that does not function properly.

While most gene therapy strategies target DNA sequences, the team in this latest research replaced the DNA-binding Cas9 enzyme in the CRISPR-Cas9 system with Cas13 enzyme, which binds to RNA. They then fused the Cas13 to another enzyme called ADAR2, which converts the base or 'letter' A (adenine) to I (inosine, a molecule which is read as guanine) in RNA. Finally, they added a guide RNA molecule to target the system to the precise RNA sequence to be edited.

Professor Darren Griffin at the University of Kent said the new system provided 'a much needed research tool and a possible future route for targeted therapy'.

He noted that RNA editing may have benefits over DNA editing. 'By targeting the message (RNA) rather than the DNA itself, this means that effects on genes can be modified for a short amount of time, and at particular crucial stages,' he said. 'Importantly, the effects of the manipulation are transient and can thus be removed when no longer needed.'

The system, called RNA Editing for Programmable A to I Replacement, or REPAIR, was used in human cells to correct mutations which cause Fanconi anaemia and X-linked nephrogenic diabetes insipidus.

The research, published in Science, showed that REPAIR could correct the mutations up to 50 percent of the time, with a low number of off-target effects.

However, REPAIR is still a long way from the clinic. Dr Ben Davies of the University of Oxford, who was not involved in the research, said: 'The REPAIR system is … associated with off-target activity.  These effects are reduced …, but off-target RNA edits are still ultimately detectable.'

The researchers now plan to improve REPAIR's efficiency and produce a system which can deliver REPAIR to cells in an animal model.

The latest developments in genome editing will be discussed at the session 'What Next for Genome Editing? Politics and the Public', at the Progress Educational Trust's upcoming public conference 'Crossing Frontiers: Moving the Boundaries of Human Reproduction'.

The conference is taking place in London on Friday 8 December 2017. Full details - including sessions, speakers and how to book your place - can be found here.

Nature News | 25 October 2017
BBC News | 
MIT News | 25 October 2017
The Scientist | 25 October 2017
Science | 25 October 2017


11 December 2017 - by Isobel Steer 
Scientists in California have used a modified form of the CRISPR/Cas9 genome editing approach to epigenetically treat diabetes, kidney disease and muscular dystrophy in mice...
13 November 2017 - by Paul Waldron 
A boy with a rare skin disease has been successfully treated by replacing most of his skin with grafts of stem cells modified by gene therapy.

02 October 2017 - by Dr Rachel Brown 
A genome editing technique called 'base editing' has been used to correct the mutation causing the inherited blood disorder beta-thalassemia in human embryos...
21 August 2017 - by Dr Rachel Huddart 
A new survey suggests that Americans are becoming more accepting of the use of genome editing in humans, and there is strong support for more public involvement in discussions on the technology...
14 August 2017 - by Emma Lamb and Annabel Slater 
Scientists have repurposed CRISPR to target the repetitive RNA sequences responsible for several genetic diseases...
07 August 2017 - by Charlotte Spicer 
Scientists have published their study confirming they are the first to correct a disease-causing mutation in human embryos using genome editing...


New advance in DNA base editing tools

30 October 2017

By Julianna Photopoulos

Appeared in BioNews 924

Scientists have further developed the genome editing technique known as 'base editing' to turn adenine-thymine base pairs back to guanine-cytosine.

They hope the approach could one day be used to treat diseases associated with single genetic mutations.

'We are currently using base editing to try to study or validate potential future therapeutic treatments for blood diseases, genetic deafness, genetic blindness … and some neurological disorders as well,' said author Professor David Liu of Harvard University to The Guardian.

Unlike the more common CRISPR/ Cas9 technology, base editing does not cleave DNA to make edits, reducing the substantial number of errors at target sites such as random insertions or deletions. Yet until now, this technique - developed last year by the same team - only allowed the conversion of guanine-cytosine (G-C) into adenine-thymine (A-T).

'This class of mutation, changing a G-C to an A-T, accounts for about half of the 32,000 known pathogenic point mutations in humans,' Professor Liu told Wired.

The new approach uses an enzyme that changes adenine into a molecule called inosine. Another enzyme, Cas9, then places a 'nick' in the strand across from the inosine, which stimulates the cell's machinery to begin a repair.

'That nick prompts the cell to replace the T with a C, because the base opposite the T has been converted to inosine, which pairs with C,' said Professor Liu.

The process worked in both bacteria and human cells.

'It's a very elegant study,' Dr Andrew Bassett, head of research in cellular operations at the Wellcome Trust Sanger Institute, told The Scientist. 'Being able to extend [base editing] to other types is really quite important.'

Dr Helen O'Neill from University College London, who was not involved in the research, said: 'The ability to now directly alter all four base-pairs with such specificity adds more ammunition to the genome editing artillery and will be incredibly powerful in the research of diseases and future restoration of disease-causing mutations.'

But according to The Guardian, Professor Liu warns that more work will be needed to cure diseases. 'There are many additional steps beyond simply making the mutation that may be needed to treat [a] disease,' he said.

Professor Darren Griffin of the University of Kent, who was not involved in the research, commented that as the team corrected a genetic defect in a human cell line, 'questions are bound to be asked about gene editing in an IVF setting.' However, he added that in addition to the ethical arguments, 'there are many practical hurdles that mean that the greatest benefit of the technology might well be as a research tool.'

The study was published in Nature. Another study, published in Science, reveals additional exciting achievements in genome editing techniques: adenine turned into inosine in RNA (also in BioNews 924 this week).

The latest developments in genome editing will be discussed at the session 'What Next for Genome Editing? Politics and the Public', at the Progress Educational Trust's upcoming public conference 'Crossing Frontiers: Moving the Boundaries of Human Reproduction'.

The conference is taking place in London on Friday 8 December 2017. Full details - including sessions, speakers and how to book your place - can be found here.


11 December 2017 - by Isobel Steer 
Scientists in California have used a modified form of the CRISPR/Cas9 genome editing approach to epigenetically treat diabetes, kidney disease and muscular dystrophy in mice...
20 November 2017 - by Helen Robertson 
For the first time ever, researchers have been able to film, in real-time, the activity of the CRISPR technique on a strand of DNA...

02 October 2017 - by Dr Rachel Brown 
A genome editing technique called 'base editing' has been used to correct the mutation causing the inherited blood disorder beta-thalassemia in human embryos...
02 October 2017 - by Sandy Starr 
What do patients and laypeople think and know about genome editing and its implications? What are the best ways for experts and others to discuss genome editing in public, so as to improve public understanding and avoid confusion? The Progress Educational Trust has set out to answer these questions, with its 'Basic Understanding of Genome Editing' project....
14 August 2017 - by Emma Lamb and Annabel Slater 
Scientists have repurposed CRISPR to target the repetitive RNA sequences responsible for several genetic diseases...


Seventy-two new gene targets for breast cancer found

30 October 2017

By Annabel Slater

Appeared in BioNews 924

Two studies have discovered 72 new genetic variants associated with the risk of developing breast cancer.

One study focused on the 30 percent of resistant breast cancer which do not respond to conventional hormone treatment, and identified ten new variants.

'These findings add significantly to our understanding of the inherited basis of breast cancer,' said Dr Doug Easton of the University of Cambridge, one of the lead investigators. 'As well as identifying new genetic variants, we have also confirmed many that we had previously suspected. There are some clear patterns in the genetic variants that should help us understand why some women are predisposed to breast cancer, and which genes and mechanisms are involved.'

The research was carried out by the OncoArray consortium, which includes more than 550 researchers at 300 research facilities worldwide.

First-degree relatives of breast cancer patients show twice the risk of breast cancer, compared to women without a family history of the disease. However, while there are 180 known genetic variants which increase risk, most of the genetic basis is unknown.

The scientists performed two GWAS studies of over 275,000 breast cancer and control patients of European or East Asian ancestry, using a chip called the OncoArray, and combined their findings with data from past studies. The OncoArray chip identifies single nucleotide polymorphisms (SNPs) across the genome, but particularly in regions thought to be related to cancer.

In one study, published in Nature, the scientists identified 65 new variants which can explain four percent of the heritable risk of breast cancer.

In the second study, published in Nature Genetics, the scientists focused on hormone-resistant breast cancer. They identified ten new variants which were linked to 1.5 percent of heritable risk, including three variants also identified in the Nature study.

Although a few mutations, such as those found in the BRCA1 or BRCA2 genes, can greatly increase the risk of breast cancer, the variants identified in the studies are common and some are carried by over 50 percent of women. Each variant confers only a small amount of risk, but combine to increase overall risk. Most did not code for proteins, but were in regions involved in regulation of genetic expression.

The team say their findings could provide new avenues of research for the genetic basis of breast cancer, particularly for hormone therapy-resistant disease. In combination with other factors influencing risk, their data could also help identify women at a high risk of breast cancer, who may benefit from tailored treatment.

'These women may benefit from more intensive screening, starting at a younger age, or using more sensitive screening techniques, allowing early detection and prevention of the disease,' said team member Professor Jacques Simard of Laval University in Quebec, Canada.

Nature | 23 October 2017
Genetic Engineering & Biotechnology News | 24 October 2017
The Guardian | 23 October 2017
The Scientist | 23 October 2017
Nature Genetics | 23 October 2017


13 November 2017 - by Dr Loredana Guglielmi 
Researchers have introduced new criteria to screen for BRCA gene mutations that could prevent more than 10,000 cases of cancer and save more than 2000 lives in the next decade...
06 November 2017 - by Julianna Photopoulos 
Scientists have found 27 new tumour suppressor genes...

16 October 2017 - by Hannah Somers 
A new genetic test to accurately predict an individual's risk of developing breast cancer will soon be rolled out at two hospital clinics in Manchester...
09 October 2017 - by Dr Loredana Guglielmi 
A major breakthrough in understanding how mutations in the BRCA1 gene raise cancer risk has been made by researchers in the USA...
24 April 2017 - by Dr James Heather 
Researchers have discovered a new approach to slow the rate of breast cancer tumour growth in mice...
20 March 2017 - by Dr Molly Godfrey 
A genetic study of breast cancer patients suggests that existing drugs for treating rare breast and ovarian cancers may help more patients than previously thought...


Broad Institute responds to Berkeley CRISPR patent appeal

30 October 2017

By Jennifer Willows

Appeared in BioNews 924

The Broad Institute has filed arguments ahead of the upcoming CRISPR patent appeal hearing.

This marks the latest development in ongoing dispute over the US patent for CRISPR/Cas9 between the University of California at Berkeley (UC), and the University of Vienna and Professor Emmanuelle Charpentier, against the Broad Institute of MIT and Harvard in Cambridge, Massachusetts, regarding who has the right to a patent on the eukaryotic application of CRISPR/Cas9 technology.

In July, the University of California appealed the decision of the US Patent Trial and Appeal Board (PTAB) over the use of CRISPR in eukaryotic cells. The appeal will be heard in the US Court of Appeals for the Federal Circuit early in 2018.

The UC brief, issued on 25 July 2017, stated that the PTAB 'ignored key evidence' and 'made multiple errors' when assessing whether CRISPR/Cas9 genome editing in eukaryotes was an obvious extension of the UC invention.

The Broad brief refutes these claims, arguing that PTAB's decision was lawful and based on factual evidence, and that the decision should stand.

In 2012, researchers at UC - including Professor Jennifer Doudna and Professor Emmanuelle Charpentier – first filed a patent for their discovery of CRISPR/Cas9 and its ability to edit purified DNA in vitroSubsequently, researchers at the Broad Institute used CRISPR/Cas9 to edit the genome of eukaryotic cells, and were granted a patent based on this use.

UC claims that Professors Doudna and Charpentier's work provided obvious evidence that genome editing could be made to work in living mammalian cells. Thus they contend that the patent held by the Broad/MIT for this application is not novel.

Kevin Noonan, a partner at the law firm McDonnell Boehnen Hulbert & Berghoff in Chicago, Illinois, commented that the court can usually be expected to uphold the patent office's decisions. He said:  'For Berkeley to prevail, the Federal Circuit is going to have to say, "Yeah, the board got it wrong" …I think it’s unlikely that they’ll do that.'

Nature News | 26 October 2017
GenomeWeb | 26 October 2017
Life Sciences Intellectual Property Review | 26 October 2017
Broad Institute | 25 October 2017


21 August 2017 - by Annabel Slater 
I'm glad to see a scientist engaging so strongly in public debate about the use of technology, rather than speculating on the sidelines...
31 July 2017 - by Dr Rachel Brown 
The University of California has moved to appeal a decision of the US Patent Trial and Appeal Board over the use of CRISPR in eukaryotic cells...
02 May 2017 - by Brian Nolan 
The European Patent Office and the United States Patent and Trademark Office have been thrust into a dispute pitting the University of California, Berkeley and the University of Vienna against the Broad Institute of MIT and Harvard University. Scientists and inventors have been watching the decisions of the EPO and USPTO because these decisions may leave one of these entities with a patent portfolio worth billions of dollars...
20 February 2017 - by Ryan Ross 
The US Patent and Trademark Office has upheld the right of the Broad Institute of MIT and Harvard to the genome-editing tool CRISPR/Cas9...


NHS will fund gene therapy for bubble boy syndrome

30 October 2017

By Jennifer Willows

Appeared in BioNews 924

The UK's National Institute for Health and Care Excellence (NICE) has approved a gene therapy for children born with a rare disorder that leaves them without a functioning immune system.

The Strimvelis treatment for ADA-SCID (adenosine deaminase deficiency, severe combined immunodeficiency) involves removing stem cells from the patient's bone marrow, and altering them to contain a working copy of the faulty gene, before injecting them back into the patient.

'This means that children born with ADA-SCID will now have a better chance of being able to lead as near normal a life as possible, going to school, mixing with friends, free from the constant threat of getting a potentially life-threatening infection,' said Professor Carole Longson, director of the Centre for Health Technology assessment at NICE.

In ADA-SCID, a single gene mutation prevents the development of mature immune cells. Children with the condition are susceptible to multiple infections and without treatment are unlikely to reach school age. It is colloquially called 'bubble boy' syndrome because affected children sometimes have to live in sterile chambers to prevent contact with pathogens.

The standard treatment is a bone-marrow transplant, and this is still the recommended treatment where a good match is available. NICE now recommends that Strimvelis be made available on the NHS in cases where no suitable donor can be found.

Because the treated cells are the patient's own, rejection is not an issue.

The cost of the drug, developed by GlaxoSmithKline, is 594,000 euros (£530,000). However, NICE ruled that it is cost-effective, in part because one dose is expected to last the patient's lifetime.

Currently Strimvelis is only available in the Milan hospital where it was first developed, as the stem cells are too short-lived outside the body to be transported to other medical facilities. 


20 November 2017 - by Jennifer Willows 
A new clinical trial in California marks the first time that genome editing has been used inside the body, rather than on cells such as blood or skin which can be extracted, edited outside the body, and then replaced...
13 November 2017 - by Paul Waldron 
A boy with a rare skin disease has been successfully treated by replacing most of his skin with grafts of stem cells modified by gene therapy.

11 April 2016 - by Rebecca Carr 
A gene therapy for children with a rare but life-threatening genetic disorder that severely weakens the immune system has been recommended for approval by the European Medicines Agency...
13 October 2014 - by Dr James Heather 
Gene therapy to treat children with 'bubble boy syndrome' seems to be both safe and effective, a study published in the New England Journal of Medicine has found...
07 January 2008 - by Stuart Scott 
A boy enrolled on a pioneering gene therapy trial has developed leukaemia, his doctors based at London's Great Ormond Street Hospital have announced. The three-year-old was of one of 10 patients treated for X-SCID: a genetic disorder whereby a mutation in the IL2RG gene leaves carriers without...
27 April 2006 - by BioNews 
Replacement genes used to treat an inherited immune disorder could trigger cancer, new research carried out on rodents suggests. The study, published in the journal Nature, shows that treating mice with a normal copy of the gene defective in X-linked severe combined immune deficiency (X-SCID) results in cancer of the...


US fertility doctor accused of using own sperm changes plea

30 October 2017

By Sarah Pritchard

Appeared in BioNews 924

A retired US fertility doctor accused of using his own sperm to inseminate patients at his clinic will plead guilty to misleading investigators.

Dr Donald Cline was charged last year with two counts of obstruction of justice in 2016 (See BioNews 869, after being accused of inseminating women at his Indianapolis clinic in the 1970s. Although he initially pleaded not guilty, in a hearing scheduled for December 2017 it is understood that he will change that plea.

Amber Stafford, who believes Dr Cline is her biological father, said that 'even though he wasn't here, and he didn’t say "I'm guilty", it kind of gives you that feeling that he's owning up to what he did and admitting to what he did was wrong'.

The group of eight individuals, who initially brought a complaint against Dr Cline in 2014 and believe they are all biological siblings, are calling for a change in the law to prevent it happening again. At present, no laws in Indiana prevent a doctor from using his own genetic material.

'We want to stop this from happening again, because it was wrong on so many levels,' Stafford said. 'Even though there's no laws against it, it was wrong. We want more justice, but we'll get there and we're not going to stop fighting to get laws changed in Indiana.'

When the group met with the doctor in 2016, he allegedly admitted to donating his own sperm 'around 50 times' to help women get pregnant. However, after an official investigation was launched, Dr Cline told the US Attorney General's Office that he never used one single donor's sperm for more than three successful pregnancies, and that he never used his own sperm.

Paternity tests have so far indicated that at least two of Dr Cline's patients' children carry his DNA, however online genetic tests have indicated that many more could be in the same situation.

Matt White, who believes Dr Cline to be his biological father, said: 'This wasn't just a handful of kids or mothers that this happened to that resulted into a handful of children. We're now into several dozen, and it's going to continue to grow.'


05 June 2017 - by Dr Rachel Brown 
A court in the Netherlands has ruled that DNA tests can be performed on items belonging to a deceased fertility clinic director accused of using his own sperm for fertility treatments...
07 November 2016 - by Ryan Ross 
A Canadian fertility doctor is facing a class action lawsuit by the families of some of his former patients, who allege that he used his own sperm in donor-conception procedures without their knowledge or consent...
19 September 2016 - by Annabel Slater 
A retired fertility doctor in the US has been accused of using his own sperm to fertilise the eggs of patients at a fertility clinic...


Audit shows IVF postcode lottery in England has worsened

30 October 2017

By Shaoni Bhattacharya

Appeared in BioNews 924

Access to IVF in England has worsened considerably over the last five years, according to data obtained by Fertility Fairness.

Around one in ten CCGs (Clinical Commissioning Groups) in England meet national guidelines on IVF provision, found the campaign group. This is half the number of CCGs meeting the guidelines in 2013.

Fertility Fairness compiled data from all 208 CCGs to which it sent Freedom of Information requests. Of these, only 12 percent are following the recommendation by NICE (National Institute for Health and Care Excellence) to provide three full rounds of IVF to eligible women under 40, compared with 24 per cent of CCGs doing so in 2013, said the group.

'The key thing is there is a clear pattern of decommissioning of services,' said Sarah Norcross, co-chair of Fertility Fairness.

While the number of areas offering three cycles of NHS-funded IVF has fallen, the number of CCGs offering just one IVF cycle has risen to 61 percent from 49 percent in 2013. Seven CCGs, or 3.4 percent, have removed NHS-funded IVF altogether – more than three times the number in 2015.

And a further seven per cent of CCGs are currently consulting on removing or cutting NHS fertility treatment (see BioNews 913), says the audit.

NICE also recommends that eligible women aged 40-42 should be offered one cycle of IVF on the NHS. The audit found that only half of CCGs (51 percent) were doing this. 

'The NHS should provide access to fertility services, including IVF, for all patients that meet the criteria,' a UK Department of Health spokesperson told the BBC, adding that CCGs have been advised to meet the NICE guidelines.

NHS England said: 'Ultimately these are legally decisions for CCGs, who are under an obligation to balance the various competing demands on the NHS locally while living within the budget Parliament has allocated.'

Fertility Fairness also revealed a league table of the best and worst areas to live for access to NHS-funded IVF. The top areas included four areas in Greater Manchester. The worst areas, which do not offer any NHS-funded IVF, were Herts Valleys, Cambridgeshire and Peterborough, Croydon, South Norfolk, Basildon & Brentwood, Mid- Essex and North East Essex.

'We'd like to see someone take responsibility for turning this around,' said Norcross, who is also director of Progress Educational Trust, which publishes BioNews. 'And it needs to be done as a matter of urgency because women's biological clocks don't stop ticking while policy is sorted out.'

BBC | 30 October 2017
Fertility Fairness | 30 October 2017


06 November 2017 - by Sarah Norcross 
Sarah Norcross, Director of the Progress Educational Trust and Co-Chair of the campaigning organisation Fertility Fairness, speaks on TV and radio about worsening access to publicly funded IVF...

09 October 2017 - by Georgia Everett 
For the first time couples in Ireland will be eligible for financial aid for fertility treatments, after the Government signed off new proposals last week...
14 August 2017 - by Dr Kimberley Bryon-Dodd 
Funding cuts by the UK's National Health Service has meant that 13 areas in England have restricted or halted IVF treatment since the start of 2017, according to Fertility Network UK...
27 February 2017 - by Georgia Everett 
Women over the age of 34 will no longer be entitled to receive IVF funded by the NHS in some areas of Nottinghamshire...
12 December 2016 - by Dr Rachel Brown 
Only 16 percent of Clinical Commissioning Groups in England follow the national guidance on access to NHS fertility treatment, according to an audit by campaign group Fertility Fairness...
20 June 2016 - by Stephen Harbottle 
Since its launch in 1948, the NHS has become the world's largest publicly funded health service and a beacon of what is possible to the rest of the world. Unless, it seems, you are finding it hard to conceive...


Event Review: Manchester Science Festival - Reproduction 2.0

30 October 2017

By Laura O'Donovan

Appeared in BioNews 924

Almost forty years have passed since the 1978 birth of Louise Brown – the first IVF baby – launched a revolution in reproductive medicine resulting in over 250,000 births in the UK alone. This event, organised as part of the Manchester Science Festival programme, sought to inform and engage the public on recent developments in the field that have tested and continue to test ethical and legal boundaries, namely: research on human embryos, genome editing, and mitochondrial replacement therapy (MRT).

Roger Highfield, Director of External Affairs at the Science Museum Group, introduced the three speakers for the evening: Dr Marta Shahbazi, a member of the research team led by Professor Magdalena Zernicka-Goetz at the University of Cambridge, Dr Norah Fogarty, a member of the research team led by Dr Kathy Niakan of the Francis Crick Institute in London and Professor Sir Doug Turnbull, Director of the Wellcome Trust Centre for Mitochondrial Research in Newcastle-upon-Tyne.

Dr Shahbazi was the first to present a brief explanation of a new technique that allows embryos to develop in vitro beyond the implantation stage (day six of embryo development) (see BioNews 850). Dr Shahbazi reflected on what scientists had learned thus far, reporting that human embryos appear to have an intrinsic capability for self-organisation, at least until day 13. Scientists had previously been unable to analyse the key stages of development beyond this point, a period known as the 'black box' of development.

Dr Fogarty then presented the research of the team at the Francis Crick Institute which seeks to define the molecular mechanisms underlying human preimplantation development by using CRISPR/Cas9 to inactivate key genes (see BioNews 919). Dr Fogarty began by presenting the audience with a background to genome editing in layman's terms, explaining that researchers are currently studying the protein OCT4. Researchers observed the development of an edited embryo (where OCT4 had been inactivated) compared with an unedited control embryo in time-lapse videos presented to the audience. Their observations suggested that OCT4 is fundamental to the proper development of human blastocysts.

Finally, Professor Turnbull provided a cogent explanation of the purpose of MRT research, explaining what mitochondrial disease is and what its outcomes are, while presenting the audience with a graphic illustrating mitochondrial donation by pronuclear transfer. In March 2017, the Wellcome Trust Centre for Mitochondrial Research in Newcastle was granted the first UK licence to carry out mMRT (see BioNews 893). Professor Turnbull reported plans for a study to look at the developmental outcome of children born using MRT at 18 months, explaining that MRT is not an IVF technique, but rather 'a pathway of care'.

After each of the presentations on current research, Roger Highfield chaired a discussion with the panel on issues ranging from the legacy of Steptoe and Evans' scientific achievement to larger questions of when personhood begins and reflections on the next milestones for each of the developments discussed.

The panel unanimously agreed with Professor Turnbull that the legacy of Louise Brown's birth was not only hope for large numbers of infertile women, but that the inception of IVF in the UK also paved the way for regulation in the form of the Human Fertilisation and Embryology Act (HFEA) 1990 (as amended) following the 1984 Warnock Report.

On the question of life and personhood, Dr Shahbazi explained that day 14 of embryo development is the point at which the primitive streak begins to emerge – the first structure in the embryo when cells begin to specialise into neurons or muscle cells. It is also the point at which an embryo can no longer split to give rise to twins, and is currently recognised both nationally and internationally as the ethical (and legal) limit for the culture of human embryos (see BioNews 883).

In terms of the next milestone projections, Professor Turnbull emphasised that scientists and clinicians working in the area of MRT want to be able to provide reproductive choice for families within the limits that society permits. Dr Fogarty explained that genome editing is a powerful tool enabling us to study any gene in the human embryo, and further research is needed to understand human development. Similarly, Dr Shahbazi said that researchers hope to better analyse and understand embryo development and the causes of early pregnancy loss.

The floor was then opened to the audience for comments and questions. Topics ranged from scientists' use of animal models in experiments, to enhancement in genome editing and so-called designer babies, to what experiments the panel would carry out if regulatory restrictions could be ignored (although all agreed they were happy to work within the regulations, as there is still much research to be done within these parameters), the issues of cost in a public-funded healthcare system, and the possibility of artificial embryos moving forward.

Overall, the event provided a valuable opportunity for individuals to learn about and discuss topical issues of public importance. I found it highly interesting and felt it presented a digestible explanation of the science, as well as the legal and ethical issues involved in each of the developments explored, allowing the public to easily engage.

The Guardian | 04 November 2016


20 March 2017 - by Georgia Everett 
Doctors at Newcastle Fertility Centre have been granted the first UK licence to use mitochondrial replacement therapy as a fertility treatment to prevent the inheritance of mitochondrial disease...



Published by the Progress Educational Trust


Public Conference
8 December 2017

Speakers include

Professor Azim Surani

Professor Magdalena Zernicka-Goetz

Professor Robin Lovell-Badge

Sally Cheshire

Professor Guido Pennings

Katherine Littler

Professor Allan Pacey

Dr Sue Avery

Professor Richard Anderson

Dr Elizabeth Garner

Dr Andy Greenfield

Dr Anna Smajdor

Dr Henry Malter

Vivienne Parry

Dr Helen O'Neill

Dr César Palacios-González

Philippa Taylor

Fiona Fox

Sarah Norcross

Sandy Starr


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