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Issue 615 (11 July 2011)


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




A call for Ontario to regulate assisted human reproduction

11 July 2011

By Vince Londini

Page URL: Appeared in BioNews 615
In December, the Supreme Court of Canada (SCC) struck down most of the Assisted Human Reproduction Act (AHRA) of 2004. This ruling invalidated almost all Canadian federal regulations covering the many sticky areas of emerging assisted human reproduction (AHR) practice.

If Canadians are to establish rights, justice, and protection for themselves and their children, they must pass laws through provincial governments like Ontario. These must give considered treatment to new technologies and changing social norms. Surrogacy, donor conception and advances in genetic testing all lead Ontarians into uncharted ethical, legal, and moral territory.

Dear to my heart and my children's future are the issues surrounding conception using donor gametes. One of these is donor anonymity. In May, the British Columbia (BC) Supreme Court ruled on the Pratten case (see BioNews 581). This supported the ethics of ensuring donor-conceived people have access to information about their biological origins. BC is leading Canada on this fundamental matter of human rights and Ontario should follow.

Another key area for Ontario is ensuring the future of a Canadian donor registry. This now rests with provincial governments following the demise of key sections of the AHRA. Such a publically-held information store is vitally important to ensure donor-conceived people and gamete donors can discover information about their biological kin.

Ontario should consider how to ensure donor-conceived adults receive counselling. Few clinics - in my experience - provide this. Some even encourage parents to present a false story to their children. Clinics are not required to counsel would-be parents facing a donor conception decision. Nor are they obligated to encourage openness about the issue with their children. Yet many donor-conceived adults warn of psychological damage done when information about their biological origins is withheld.

Ontarians need to build a local, open, altruistic gamete supply too. Currently Canadian legislation dealing with donation is inconsistent. Due to limited supply, the law presently allows gametes to be purchased from international suppliers. Yet the December SCC decision upheld the section of the AHRA that required tissue/gamete donation to be an altruistic act, indicating this reflected core Canadian values.

Birth certificate laws also need amending to recognise the intricate situations resulting from donor conception. Specifically, these laws must ensure the rights of the non-biological parent while protecting the gamete donor from unreasonable liability.

It also falls to the Ontario provincial government to protect consumers of AHR services. Recent scandals, including the Barwin case of an alleged sperm mix-up in Ottawa, suggest that industry-led certification and enforcement may prove insufficient.

So how must Ontario proceed? The answer is to pass clear legislation that defines and enforces ethical AHR practice, especially surrounding donor conception. This legislation will assert the rights of Ontarians who pursue sanctioned AHR treatments, guard the rights of the children created, and ensure the well-being of all parties.

CBC News | 13 September 2010


20 February 2012 - by Julianna Photopoulos 
Lawyers representing British Columbia's government were at the Canadian province's Court of Appeal last Tuesday attempting to overturn an earlier ruling which would effectively end anonymous gamete donation...

06 June 2011 - by Professor Eric Blyth and Dr Marilyn Crawshaw 
The regulation of assisted human reproduction in Canada has had a long and tortuous history. Twenty one years after a Royal Commission appointed by the federal government recommended legislation (1), and following several failed attempts to get legislation through the Canadian parliament, the Assisted Human Reproduction Act 2004 came into force (2)...
23 May 2011 - by Sarah Pritchard 
Anonymous egg and sperm donation will no longer be permitted in British Columbia (BC), Canada, after a donor-conceived woman, Olivia Pratten, took the provincial government to court to argue that its adoption laws discriminated against individuals such as herself....
25 October 2010 - by Antony Blackburn-Starza 
A Canadian woman conceived through donor insemination has been allowed to bring legal action against the province of British Columbia to obtain information about her biological heritage, which may include the identity of the sperm donor involved....
10 November 2008 - by Sarah Pritchard 
A 26 year old woman in Canada conceived using donor sperm has begun legal action to attempt to make available the identities of anonymous sperm donors, including that of her own father. Olivia Pratten is acting on behalf of all those in British Columbia (BC) conceived using...


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ART regulation in Canada – birth much delayed

11 July 2011

By Professor Eric Blyth

Professor of Social Work, University of Huddersfield

Page URL: Appeared in BioNews 615
It is not so long since I applauded the decision of the Supreme Court of British Columbia (BC) for promoting the disclosure of the identity of gamete and embryo donors to their offspring (1). News that the BC Attorney-General is appealing the judgment to the federal Supreme Court indicates that my enthusiasm was a case of premature elation (2). The good news for those of us who believe that non-anonymous donation is the only ethical form of gamete and embryo donation is that if the federal Supreme Court upholds the views of the BC Supreme Court, all Canadian provinces will be compelled to prohibit donor anonymity. The more sobering take on this is that the establishment of effective regulation of assisted reproductive technology (ART) across the whole of Canada will be much delayed.

It is now 18 years since a Royal Commission appointed by the federal government produced a report recommending regulation of ART. The intervening period has seen several failed attempts by respective federal administrations to introduce legislation for the whole country (3). When such legislation, the Assisted Human Reproduction Act, eventually appeared in 2004, the provincial government of Québec complained that it encroached on the powers of Canada's provincial governments. In December 2010 the federal Supreme Court upheld much of the Québec government's claim and determined that significant elements of the Act were unconstitutional (4). Given that the Canadian federation has been in existence for more than 140 years, an impartial onlooker might have reasonably expected Canadian lawmakers - and especially their legal advisors - to have developed a more accurate sense of what was rightly the responsibility of the federal government and what was the provincial governments' remit. Be that as it may, very little of the Assisted Human Reproduction Act has ever been implemented, and the decisions of the two supreme courts seem set to push Canada's regulatory saga into its third decade.

The federal government is still considering the implications of the federal Supreme Court ruling for the fate both of its legislative intentions and of the federal regulatory body, Assisted Human Reproduction Canada. Since - like all western countries adversely affected by the 2008 global financial tsunami - the Canadian government is seeking to cut costs, this will doubtless include the rationalisation of government bodies through mergers and transfer of responsibilities. Given that flagship ART regulatory bodies in other jurisdictions have either been abolished, face abolition or have seen their functions significantly changed (for example the abolition of South Australia's Council on Reproductive Technology, the proposed abolition of the UK's Human Fertilisation and Embryology Authority and the redesignation of Victoria's Infertility Treatment Authority as the Victorian Assisted Reproductive Treatment Authority), it seems unlikely that Assisted Human Reproduction Canada will survive in anything like its current form, if at all.

Canada's troubled history in this field does not suggest that the prospects of Canadian federal and provincial lawmakers making the most of the current legal imbroglio are good. Until it does so, professionals working in the field, those seeking fertility treatment and others personally affected by ARTs, such as those who are born as a result of reproductive technologies, embryo and gamete donors and surrogates, will have to get by as best they can. They deserve much, much better from their elected representatives – as indeed do Canadian taxpayers more generally, who have had to foot the bill with very little to show for it.

While ART regulation is never going to be the top priority of any government, it can nevertheless be hoped that Canadian politicians will accept that they cannot risk the humiliation of getting it wrong again. The wish to avoid further embarrassment - if nothing else - might act as an incentive for federal and provincial lawmakers and their advisors to hammer out an effective regulatory framework that is fit for Canadians in the 21st century.

BioNews | 06 June 2011
2) Hall. N.  (2011) 'B.C. government appeals landmark sperm donor ruling'
The Vancouver Sun | 17 June 2011
3) Royal Commission on New Reproductive Technologies (1993) Proceed with care: final report of the Royal Commission on New reproductive technologies
Ottawa: Minister of Government Services Canada. | 
Supreme Court of Canada | 22 December 2010


20 February 2012 - by Julianna Photopoulos 
Lawyers representing British Columbia's government were at the Canadian province's Court of Appeal last Tuesday attempting to overturn an earlier ruling which would effectively end anonymous gamete donation...

06 June 2011 - by Professor Eric Blyth and Dr Marilyn Crawshaw 
The regulation of assisted human reproduction in Canada has had a long and tortuous history. Twenty one years after a Royal Commission appointed by the federal government recommended legislation (1), and following several failed attempts to get legislation through the Canadian parliament, the Assisted Human Reproduction Act 2004 came into force (2)...
23 May 2011 - by Sarah Pritchard 
Anonymous egg and sperm donation will no longer be permitted in British Columbia (BC), Canada, after a donor-conceived woman, Olivia Pratten, took the provincial government to court to argue that its adoption laws discriminated against individuals such as herself....
17 January 2011 - by MacKenna Roberts 
The Supreme Court of Canada has ruled that several key powers to regulate and licence fertility practices under Canada's Assisted Human Reproduction Act (the Act) should fall under provincial jurisdiction....
22 November 2010 - by Dr Juliet Guichon 
Last Tuesday, the embattled head of the Canadian federal assisted human reproduction agency, Assisted Human Reproduction Canada, returned to defend herself before a Parliamentary committee. This Parliamentary grilling was different from the one Dr Elinor Wilson experienced in June...
29 October 2010 - by Professor Eric Blyth 
As reported in BioNews on 25 October 2010 (1), Olivia Pratten, a 28-year old Toronto journalist who was conceived as a result of anonymous donor conception provided by a Vancouver physician, Dr Gerald Korn, is challenging the protection of donor anonymity in the Supreme Court of British Columbia. The Court agreed to hear the case despite claims made in September by lawyers acting for the Government of British Columbia that the physician's records have been destroyed, and despite an injunction...


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Gene editing success for haemophilia

11 July 2011

By Dr Caroline Hirst

Page URL: Appeared in BioNews 615

Scientists have, for the first time, successfully treated a blood disorder by repairing errors in the DNA of a living animal.

Researchers from the Children's Hospital of Philadelphia, together with California-based Sangamo BioSciences, have applied an innovative genome editing technique to treat haemophilia B, which affects around one in 30,000 boys and men.

The team, led by Dr Katherine High, tested their methods using mice genetically engineered to carry a defective human gene called F9, which causes them to develop the blood clotting disease.

Usually when you cut yourself a group of proteins will move to site of injury and combine with platelets in the blood to form a protective scab. People with errors in the F9 gene lack one of these proteins, factor IX, which prevents them from forming blood clots properly.

When the researchers replaced the faulty F9 gene with a fully functional version in affected liver cells of the mice they found that blood clotting was restored to nearly normal levels.

Until now, genome editing has required cells to be removed from the patient's body before they can be genetically altered - an approach which is unfeasible for treating many human genetic disorders. In this study, published in the journal Nature, the group managed to use the cell's own repair machinery to replace the faulty gene without having to remove it from the body at all.

'We established a proof of concept that we can perform genome editing in vivo, to produce stable and clinically meaningful results', said Dr High. 'We need to perform further studies to translate this finding into safe, effective treatments... but this is a promising strategy for gene therapy'.

DNA cleaving tools called zinc-finger nucleases (ZFNs) were designed to specifically target and remove the dysfunctional F9 gene. These were injected into the abdomen of a two-day old mouse, along with a corrected copy of the F9 DNA sequence, in a harmless virus case, which heads straight to the liver. There, the ZFNs cut out the faulty gene, triggering the cell's DNA repair machinery to incorporate the correct version instead.

At five-weeks-old the level of factor IX in the blood had increased by 3-7 percent in treated mice, compared to controls, which was enough to cause a significant improvement in clotting function. Importantly, this genetic modification was demonstrated to be a permanent change in the treated mice's liver cells.

'In theory, almost all genetic diseases could be amenable to this type of treatment', Professor Mark Kay, a gene therapy researcher at Stanford University in California, told Nature News. He added, however, that 'there are still some technical hurdles that have to be overcome before this is going to be a wide-scale medical therapy'.



Nature News | 26 June 2011
Guardian | 26 June 2011
The Scientist | 27 June 2011
Children's Hospital of Philadelphia press release | 27 June 2011
New York Times | 27 June 2011
Nature | 26 June 2011


18 December 2017 - by Sam Sherratt 
A new gene therapy for haemophilia A has exceeded expectations in a recent clinical trial...
11 December 2017 - by Charlotte Spicer 
Scientists have successfully used gene therapy to prevent bleeding in a small trial of patients with the inherited blood disorder haemophilia B...
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...
02 February 2015 - by Dr Lucy Freem 
Biogen Idec has made an investment deal to develop gene therapy treatments for haemophilia A and B....
15 December 2014 - by Sean Byrne 
Pfizer has entered into a deal with biotech company Spark Therapeutics to conduct research into gene therapy for haemophilia B...

08 April 2005 - by BioNews 
A gene therapy technique that repairs faulty genes by 'editing' their DNA could lead to new treatments for inherited blood disorders and HIV, say US researchers. The approach could help address safety concerns over current gene therapy methods, many of which rely on specially adapted viruses to deliver working genes...
07 June 2004 - by BioNews 
A US biotechnology firm announced last week that it is discontinuing its haemophilia trial, citing technical and safety reasons. Avigen said that it was stopping the trial so it could concentrate on neurological diseases, but it also said that the gene therapy treatment for haemophilia faced 'certain scientific, regulatory and...
18 February 2002 - by BioNews 
Doctors have successfully used gene therapy in the treatment for a type of haemophilia, a condition caused by a defect in one of the genes which controls blood clotting. Sufferers bruise easily, are prone to nosebleeds, and have a risk of internal bleeding. A virus that had been genetically altered...
11 June 2001 - by BioNews 
A preliminary safety study has shown that gene therapy may be able to help sufferers of haemophilia. The study, results of which were published in the New England Journal of Medicine last week, involved six people with severe haemophilia A, a disorder caused by the failure of a gene called...
06 March 2000 - by BioNews 
Two patients in a gene therapy trial for haemophilia, a blood-clotting disorder, have shown a marked improvement in their condition. The US team, from Stanford University School of Medicine and the Children's Hospital of Philadelphia, admit they were surprised by the results, which are published in this month's Nature Genetics...


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US stem cell legislation to be introduced

11 July 2011

By Nisha Satkunarajah

Page URL: Appeared in BioNews 615

New legislation to permit federal funds to be used for research on embryos, which would otherwise be destroyed following IVF, will be introduced to the US Congress.

Diana DeGette, Republican representative for Colorado, who has sponsored the bill, said: 'This legislation would place into statute a framework to ensure such critical research can be conducted unimpeded by political interference'.

If approved, the Stem Cell Research Advancement Act 2011 will seek to codify the US National Institutes of Health's (NIH) guidelines for human embryonic stem cell (hESC) research and will require the guidelines to be reviewed every three years. The Act will also prohibit the use of federal funds for human cloning techniques.

It is the third time such legislation has been considered by US politicians. Previous versions, which supporters say were similar to the current bill, were approved by Congress in 2006 and 2007 to be ultimately vetoed by former President George Bush. DeGette has called for broad bipartisan support for the new bill which she says was critical when passing the previous legislation - 'it certainly is critical for us now', she said.

The bill, co-sponsored by Pennsylvania Republican Charlie Dent, would give legislative backing to President Obama's 2009 executive order allowing federal funds to be used for hESC research. Proponents of the new bill say uncertainty generated by current legal proceedings about hESC research funding - and the possibility of a future president overriding the order - is having a chilling effect on new research. The bill 'does establish ethical criteria for stem cell research, and I think that's very, very important', said Dent.

In 2010, two scientists challenged the NIH arguing its guidelines which followed Obama's order contravened a 1996 law called the Dickey-Wicker amendment – which features in the Labor, Health and Human Services appropriations bill that funds the NIH. The law prohibits the use of federal funds for hESC research on embryos which are to be destroyed.

A temporary injunction on hESC research was lifted by a federal appeals court, which also confirmed the plaintiffs' ability to continue the case. The matter is now being determined by US District Court Judge Royce Lambert, with the final decision expected in the coming weeks.

The Colorado Independent | 29 June 2011
The Scientist | 04 July 2011
Denver Post | 30 June 2011
The Hill | 29 June 2011


16 July 2012 - by Cait McDonagh 
Six patients in California, USA, are suing a South Korean company and others for allegedly misleading them about the benefits of stem cell treatments sold to them...
26 September 2011 - by Dr Nadeem Shaikh 
Lawyers acting for two US scientists who sought to challenge the legality of a decision by the National Institutes of Health (NIH) to allow research on new embryonic stem (ES) cell lines have filed a notice of appeal. They seek to reverse the decision made against them by a district judge in July...
19 August 2011 - by MacKenna Roberts 
Should human embryonic stem cell research be deemed unethical for its embryo destruction? The US court decision in Sherley v Sebelius on 27 July 2011 to allow federal funding of this research set a global precedent. The meaning of research was divided into two categories: that which directly involves embryo destruction and that which does not...

23 May 2011 - by Nisha Satkunarajah 
The US Court of Appeals for the District of Columbia Circuit has overturned a preliminary injunction banning federal spending on research involving human embryonic stem cells (hESC)...
13 December 2010 - by Dr Nadeem Shaikh 
The US courts are currently attempting to decide whether human embryonic stem cell (hESC) research may continue to receive federal funding, after a lawsuit was brought against the US Government last year....
13 September 2010 - by Antony Blackburn-Starza 
A federal appeals court in the US has ruled that federal funding for embryonic stem cell research may continue and an injunction placed on the funding by a lower court last month is temporarily suspended...
31 August 2010 - by Antony Blackburn-Starza 
A ruling of a district federal judge has halted federally-funded embryonic stem cell research in the United States...
01 March 2010 - by Dr Jay Stone 
The US National Institutes of Health (NIH) has proposed a broader definition of 'human embryonic stem cell' (HES), which would allow Federal funding of research using cells at an early development stage....


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Do healthy gums improve your chances of being a mum?

11 July 2011

By Dr Jay Stone

Page URL: Appeared in BioNews 615

Women with poor oral health take on average two months longer to conceive than those with healthy gums, Australian scientists have shown.

'Until now, there have been no published studies that investigate whether gum disease can affect a woman's chance of conceiving, so this is the first report to suggest that gum disease might be one of several factors that could be modified to improve the chances of a pregnancy', said lead researcher Professor Roger Hart, of the University of Western Australia. 'It exerts a negative influence on fertility that is of the same order of magnitude as obesity'.

The team asked nearly 2,000 pregnant women for information on their pregnancy planning and outcomes. They found that those who had gum, or periodontal, disease took on average seven months to conceive - two months longer than those with good oral hygiene. In addition, they found that for non-Caucasian women with the disease this period could increase to over a year.

Periodontal disease affects 10 percent of the population, and has previously been linked to heart disease, miscarriage and poor sperm count. It is caused by the common bacteria found in our mouths. If left unchecked the bacteria can cause inflammation, which causes the gums to pull away from the teeth. These spaces are an ideal habitat for bacteria to breed in, exacerbating the inflammation and making the gums bleed. As bacteria are allowed into the bloodstream the infection can spread to other organs such as the womb lining, which could then affect the successful implantation of the embryo.

Sarah Norcross, director of Progress Educational Trust, the charity that publishes BioNews, said: 'It would be interesting to see if gum disease also affects the success of fertility treatment because if something such as regular flossing could improve success rates many women would welcome this low cost way to improve their chances of successful IVF'.

The findings of the research, which was part of an Australian study called SMILE, were announced at the annual meeting of the European Society of Human Reproduction and Embryology (ESHRE) this month.

BBC News | 05 July 2011
ESHRE press release | 05 July 2011
The Australian | 07 July 2011
The Independent | 07 July 2011
Telegraph | 07 July 2011


28 May 2014 - by Alice Plein 
The placenta, which was long believed to be a sterile environment, is home to a community of microbes similar to those found in the mouth, researchers have discovered...
01 August 2011 - by Harriet Vickers 
Scientists have increased the quality of embryos developed for IVF - by culturing them on a bed of pins. Currently, embryos are fertilised in a dish, and left there to culture for a few days before being implanted. However, Professor Gary Smith, a researcher on the project, says this doesn't mimic how embryos naturally gestate...

31 January 2011 - by Dr Tamara Hirsch 
A recent review paper has emphasised the need for improved provision of fertility information, especially regarding age-associated risks, as the trend for women having children later in life continues....
24 January 2011 - by Dr Marianne Kennedy 
Couples struggling to conceive may be more likely to have a child if the man takes certain vitamins or other antioxidants, according to scientists....
08 March 2010 - by Dr Vivienne Raper 
Babies with few teeth on their first birthday are more likely to need corrective dental surgery by age 30, a study has found. The UK and Finnish researchers also discovered ten genetic variants influencing tooth development during a baby's first year...
02 March 2009 - by Adam Fletcher 
A report in the Proceedings of the National Academy of Sciences, made available online last week, has shed new light on how teeth grow. A gene has been identified as essential for the formation of enamel in the early stages of tooth development. Professors Chrissa Kioussi and...
18 February 2002 - by BioNews 
Scientists in the US have developed a genetically modified mouthwash, which it is thought will be an effective tool in the fight against tooth decay. It is hoped that clinical trials of the mouthwash will begin in the US and UK by the end of the year. The findings of...


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Germany allows PGD for life-threatening genetic defects

11 July 2011

By Nishat Hyder

Page URL: Appeared in BioNews 615

The German parliament has passed a new law allowing PGD in limited circumstances.

Under the new law, couples can use PGD to screen embryos only if the parents have a predisposition to a serious genetic illness. All applications for PGD must be pass an ethics panel and couples are required to undergo counselling. The bill outlines an exception to the Embryo Protection Act 1990 that bans PGD, which remains intact.

Those opposing the bill raised fears of creating 'designer babies' , as well as voicing concern over disability rights. 'Parents should not have to apologise if they do not have a so-called perfect baby', said Wolfgang Zöller of the Bavarian Christian Social Union, an affiliate of the center-right Christian Democratic Union (CDU). 'Right to life must not be brought into question', he added.

In support of the legislation, Labor Minister Ursula von der Leyen said: 'So-called 'designer babies', which would be musically gifted or athletic or have blue eyes, are a fantasy... It's about severe illness of individual cases'. Those in favour argued PGD will prevent numerous medically necessary abortions and still births. The German Chancellor Angela Merkel and leader of the CDU has expressed her opposition to the legislation.

After a tense, three and a half hour long debate, the results of the free vote in the lower house of the Bundestag showed clear support for the highly controversial bill, with 326 votes (across all parties) in favour, 260 against and eight abstentions.

Dr Frank Ulrich Montgomery, head of the German Medical Association, emphasised the strict conditions accompanying PGD. 'There will be no designer babies and also no so-called saviour babies used as spare parts for a sick child', he said to ensure that PGD would not become a routine procedure or method of non-medical sex selection.

The Local | 07 July 2011
Spiegel Online | 07 July 2011
AFP | 07 July 2011
Reuters | 07 July 2011


09 July 2012 - by Sarah Pritchard 
It is now scientifically feasible to use preimplantation genetic diagnosis (PGD) during IVF to screen embryos for genes associated with high cancer risk, scientists say...
19 August 2011 - by Dr Petra Thorn 
Germany is said to have one of the most restrictive legislation in the area of assisted reproductive technology (ART) treatments. In contrast to the UK, both oocyte donation and surrogacy are prohibited by the Embryo Protection Act. Pre-implantation genetic diagnosis (PGD) has only become permissible as of July this year – it can now be carried out if the child will be born with a severe genetic disease, or if the embryo is so severely impaired that the pregnancy...
15 August 2011 - by Dr Malcolm Smith 
The Australian state of Victoria was the first common law jurisdiction in the world to enact legislation to regulate assisted reproductive technologies (ARTs). Victoria's legislative framework has been updated a number of times and the most recent legislation (the Assisted Reproductive Treatment Act 2008 (Vic)) came into effect on 1 January 2010...

23 May 2011 - by Nishat Hyder 
The German parliament will debate the country’s law on PGD following the introduction of three separate bills on the issue. Two of the bills allow PGD under certain circumstances, the other calls for a total ban....
15 November 2010 - by Zeynep Gürtin-Broadbent 
The Progress Educational Trust's conference next week will tackle the subject of Cross-border Reproductive Care (CBRC), with a range of UK experts coming together to present the evidence and argue over the ethical conundrums. Although the contested term 'reproductive tourism' has firmly entered public vernacular through the popular media, as yet little is known about this rapidly growing phenomenon...
29 March 2010 - by Professor Donna Dickenson 
'Certain countries in Europe, France in particular, are trying to resist the ultra-liberal individualist ideology of the reproductive market. It's too bad that some other countries have maintained a conspiracy of silence on that subject.' ...
15 March 2010 - by Nishat Hyder 
The Australian federal five-year moratorium on the use of gender selection technology in IVF (in vitro fertilisation) treatment for so-called 'social' reasons ends this year, reopening this controversial debate. The Australian health watchdog, the National Health and Medical Research Council (NHMRC), confirmed that that it will be conducting a review of this issue, beginning within the next few months, after the completion of its ongoing review of the Research Involving Human E...
07 September 2009 - by Caroline Gallup 
I recently attended a consultation meeting hosted by the UK's Human Fertilisation and Embryology Authority (HFEA). A representative from the deaf community put an open question to the assembled group of clinicians, research scientists, counsellors and ART recipients...


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Betting for a baby: To Hatch launches an IVF lottery

11 July 2011

By Dr Kimberley Bryon-Dodd

Page URL: Appeared in BioNews 615

A controversial lottery, offering £25,000 worth of IVF treatment as a prize, has been given the go ahead. The Gambling Commission has licensed To Hatch, a UK charity offering fertility advice, to sell tickets to win the fertility treatment in a monthly draw.

The creator of To Hatch, Camille Strachan said: 'We will offer struggling couples a completely tailor made service. We hope the To Hatch Lottery can ease the burden on the NHS and reduce the stress slightly on some of those who are struggling'.

Both the Human Fertilisation and Embryology Authority (HFEA) and the British Fertility Society (BFS) have issued statements outlining their concerns over the proposed lottery.

'The British Fertility Society is very troubled by the announcement that the charity To Hatch is about to launch an IVF lottery. Although access to effective fertility treatment on the NHS remains patchy, and expensive for those who take the private route, we cannot condone this kind of activity', said Alison McTavish, secretary of the BFS. 'A competition like this, where only the lucky few will be given the chance to start a family, mirrors the 'postcode lottery' of IVF provision on the NHS and is equally unfair'.

The HFEA said in its statement: 'The HFEA is strongly of the view that using IVF as 'prize' in a lottery is wrong and entirely inappropriate. To do so runs counter to the ethos that underpins our regulatory system and clinical practice. It trivialises what is for many people a central part of their lives'.

The lottery will begin on 30 July, with tickets costing £20 a time and the prize open to anyone – not just couples. Single, gay and elderly players won't be excluded from taking part, and if IVF treatment is not a suitable option, it has been suggested that the winner will be offered alternative treatments such as sperm donors, egg donors or surrogacy.

Winners will receive IVF treatment in a choice of one of five top fertility clinics as well as accommodation and other expenses incurred as part of the treatment.



15 October 2012 - by Daniel Malynn 
'Win a Baby' follows the trials and tribulations of Camille Strachan, a former City worker and model, who plans to launch the UK's first IVF lottery. Unlike many documentaries where the maker's own thoughts are thrust in front of anyone else's, the commentary is fairly neutral, allowing viewers space to form their own opinions...
25 June 2012 - by Jessica Ware 
The Sher Institute, a network of eight fertility clinics in the USA, has announced the three couples to win an IVF giveaway contest...
12 September 2011 - by Kyrillos Georgiadis 
A Canadian radio station has caused shock by announcing a competition in which contestants will compete for the chance to win a baby. The event is even being promoted by an advert featuring a baby holding up a sign saying 'Win me!'...
15 August 2011 - by Rosemary Paxman 
A US fertility lawyer has pleaded guilty to participating in what prosecutors have called a 'baby-selling ring'...
08 August 2011 - by Julianna Photopoulos 
The London Sperm Bank (LSB) is to launch an online 'dating agency-style' catalogue listing the appearance, physique and personalities of its sperm donors...

04 April 2011 - by Dr Marianne Kennedy 
Couples struggling to conceive face more disappointment as NHS North Yorkshire and York joins a growing number of trusts restricting access to IVF after it decided to suspend funding for assisted conception services, save for those who demonstrate a 'clinical exception'....
22 March 2010 - by Dr Gabrielle Samuel 
'IVF doctors to raffle human egg' ran the Sunday Times headline on 14 March 2010. A seminar sponsored by an American clinic took place in London at which a human egg and a cycle of in vitro fertilisation (IVF) treatment was awarded to one couple who attended...
21 March 2010 - by Dr Vivienne Raper 
'More and more' Brits are travelling to the US for donor egg IVF, according to a physician at the heart of last week's egg raffle controversy. The Genetics & IVF Institute (GIVF) near Washington DC has already treated around 10 British women and a further 15 - 20 are interested, Dr Laurence Udoff told reporters at a news briefing on Wednesday....
15 March 2010 - by Antony Blackburn-Starza 
A couple in the US has taken a novel approach to meeting the cost of in vitro fertilisation (IVF) treatment. Rather than approaching the bank or re-mortgaging the family home, as some couples are reported to have done, Brandi and Shelton Koskie decided to try to raise the money required - estimated to be around $12,000 - through private fundraising....
29 October 2009 - by Ben Jones 
The Labour party is urging the Scottish parliament to take action to standardise IVF provision across Scotland, after Labour MSP Jackie Baillie discovered wide disparities in provision between the 11 Scottish NHS boards. Ms Baillie contacted all of the boards after having been approached by a constituent who was upset about the length of IVF waiting lists where they lived....


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Could drinking while pregnant harm your baby's DNA?

11 July 2011

By Dr Rosie Gilchrist

Page URL: Appeared in BioNews 615

Alcohol can cause irreparable DNA damage and fetal abnormalities in pregnant mice, a study has found. The findings may explain how excessive drinking during pregnancy causes fetal alcohol syndrome, which can lead to lifelong learning disabilities.

The study is the first showing how excess alcohol can damage DNA, according to a Medical Research Council (MRC) Laboratory of Molecular Biology (LMB) press release.

'We have long suspected that alcohol causes DNA damage but there has not until now been any direct evidence to support this. This is the first direct evidence that alcohol can cause DNA mutations', Dr Ketan Patel, group leader at the MRC LMB in Cambridge, UK and lead study author, said in The Independent.

Dr Patel's team found cells are normally protected from damaging effects of alcohol by enzymes produced by the Aldh2 gene that break down the chemical acetaldehyde, a toxic product of alcohol. If this fails, acetaldehyde builds up and can damage DNA, but enzymes from the Fancd2 gene, called Fanconi proteins, can repair this DNA damage.

Pregnant mice genetically modified to lack both of these defence mechanisms were extremely sensitive to alcohol. If their fetuses were also lacking both genes, they were less likely to survive to birth if exposed to alcohol. Forty-three percent of the surviving fetuses had eye abnormalities and 29 percent had brain defects reminiscent of fetal alcohol syndrome.

Unlike these mice, in most people the two defence mechanisms are working normally. The next step of this research would be to see what role DNA damage is playing in fetal alcohol syndrome in humans.

'Our work suggests that binge drinking could generate enough acetaldehyde to overwhelm the body's two natural defence mechanisms. This new knowledge transforms our view of precisely how excess alcohol causes damage - ultimately changing our DNA', said Dr Patel.

The research also has implications for people with Fanconi anaemia, a rare disease caused by mutations in the Fancd2 gene where people lack functional Fanconi proteins. These people are at high risk of DNA damage from acetaldehyde which, the authors suggest, may explain their increased susceptibility to blood disorders and cancer.

This research was published in the journal Nature.

The Independent | 06 July 2011
NHS Choices | 07 July 2011
Binge drinking damages DNA for good
Times of India | 07 July 2011
Nature | 07 July 2011
In vivo role for Fanconi Anaemia DNA repair pathway identified and its surprising connection to alcohol metabolism
MRC Laboratory of Molecular Biology, Cambridge press release | 07 July 2011


08 January 2018 - by Charlott Repschlager 
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01 September 2014 - by Dr Linda Wijlaars 
Mice lacking a gene called NF1 are less prone to excessive drinking in an animal model, scientists have found. When the researchers looked at the same gene in humans, they found that variations in NF1 are linked with increased risk and severity of alcoholism...
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17 December 2012 - by Antony Blackburn-Starza 
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01 March 2010 - by Dr Colin Gavaghan 
It is no surprise that the recently published research into the epigenetic effects of alcohol consumption during pregnancy has received considerable media attention. Practically all pregnant women will worry - understandably - about the health of their future children, and will quickly seize on information or reassurance from credible-seeming sources - a fact well recognised by our commercially-motivated press...
25 January 2010 - by Dr Charlotte Maden 
New research has shown that drinking during pregnancy can cause permanent genetic changes to the DNA of the developing fetus. The findings, published in the journal PLoS Genetics, may aid in the development of a diagnosis for fetal alcohol syndrome (FAS)....
22 October 2009 - by Ben Jones 
A study conducted by researchers at the Harvard Medical School, US, has suggested that consumption of alcohol may be detrimental to chances of success in IVF treatment. Consumption of just six units of alcohol a week by both partners reduced the probability of conception by 26 per cent. The study particularly singled out apparent detrimental effects to drinking white wine in women and drinking beer for the male partners. In those women whose partner dran...
26 August 2008 - by Katy Sinclair 
By Katy Sinclair: Researchers studying Australian groups of twins have established a link between heavy alcohol use and delayed pregnancy, in findings to be published in the journal 'Alcoholism: Clinical and Experimental Research'. Mary Waldron, assistant professor of psychiatry at Washington University School of Medicine and corresponding author of the...
15 August 2005 - by BioNews 
A gene discovered in fruit flies may help researchers understand the genetic basis of alcoholism in humans. Scientists at the University of California in San Francisco (UCSF) and the University of Wurzburg in Germany have found a gene that helps fruit flies tolerate alcohol. If a similar gene exists in...


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First synthetic windpipe transplant is a success

11 July 2011

By Dr Rebecca Robey

Page URL: Appeared in BioNews 615

Surgeons have successfully transplanted a synthetic organ into a human for the first time. In a groundbreaking operation, a cancer patient's windpipe was replaced with an artificial replica that had been grown using his own stem cells.

An international team of doctors and scientists created the artificial windpipe without using any tissue from an organ donor. As well as cutting waiting times for transplants, this technique will be important in cases where a suitable donor can't be found, which can be a particular problem for children. Furthermore, the use of the patient's own stem cells meant there was no risk of it being rejected, and he did not need to take immunosuppressive drugs.

The 36-year-old man had an aggressive tumour that had not responded to chemotherapy or radiotherapy, and it was inhibiting his breathing. With no suitable donor organ available the medical team decided to try the new technology. 'He was condemned to die', Professor Paolo Macchiarini, the lead surgeon, told the Wall Street Journal, only a month after the 12-hour operation. 'We now plan to discharge him'.

Professor Macchiarini, who works at the Karolinska University Hospital, Sweden, had previously carried out similar procedures, but always using the windpipe of an organ donor coated with the patient's stem cells. In this case, a 3D scan was taken of the patient's windpipe and a team of scientists at University College London (UCL) used the images to build an identical 'scaffold' out of a specially designed material called a nanocomposite polymer.

Stem cells taken from the patient's bone marrow were dripped onto the scaffold in a device developed by researchers at Harvard Bioscience Inc., USA. After two days these cells had populated the entire scaffold structure, and were then treated with chemicals to encourage them to form the right types of tissue. A similar technique has also been used to grow bladder tissue for use in reconstructive surgery.

Professor Alexander Seifalian, who led the research team at UCL said: 'What makes this procedure different is it's the first time that a wholly engineered synthetic windpipe has been made and successfully transplanted, making it an important milestone for regenerative medicine. We expect there to be many more exciting applications for the novel polymers we have developed'.

Remarkably, the whole process only took a few days. Professor Macchiarini commented: 'Thanks to nanotechnology, this new branch of regenerative medicine, we are now able to produce a custom-made windpipe within two days or one week… The beauty of it is you have it immediately. There is no delay'.

Guardian (PA) | 08 July 2011
Wired | 08 July 2011
Wall Street Journal | 08 July 2011
BBC News | 08 July 2011
UCL press release | 07 July 2011


15 February 2016 - by Kirsty Oswald 
The world-renowned Karolinska Institute is at the centre of a scandal surrounding the conduct of stem-cell surgeon Paulo Macchiarini...
14 April 2014 - by Dr Nicola Davis 
A lab in London where scientists grow human noses and windpipes has opened its doors to the press...
22 April 2013 - by Dr Rachael Panizzo 
Human stem cells have been converted into bone cells using a technique called 'nanokicking'...
18 June 2012 - by Dr Lucy Freem 
A ten-year-old Swedish girl has become the first recipient of a donor vein treated with a patient's own stem cells...
12 September 2011 - by Daniel Malynn 
Presenter Liz Bonnin investigates stem cells, and their pioneering use in organ donation. Bonnin's introduction the segment covers briefly, but accurately, the 30 years worth of history of stem cell research, and the controversy around embryonic stem cell research...

23 May 2011 - by Dr Rebecca Robey 
IPS (induced pluripotent stem) cells from mice can be recognised by their own immune system and destroyed, scientists at the University of California, San Diego, have found...
18 April 2011 - by Dr Rosie Gilchrist 
Scientists at Edinburgh University have grown kidney structures in the laboratory in a step they hope will lead to organs being grown for transplant patients from their own stem cells...
16 August 2010 - by Dr Marianne Kennedy 
An 11-year-old boy has returned home after becoming the first child to undergo a pioneering surgery which used his own stem cells to rebuild his windpipe. The operation, which took place in March this year at Great Ormond Street Hospital in London, has been hailed as 'a success'...
22 March 2010 - by Dr Vivienne Raper 
A UK child has become the world's first to receive a full windpipe transplant using an organ built from his own stem cells...
23 November 2008 - by Adam Fletcher 
A Colombian woman has become the world's first recipient of a windpipe grown in part from her own cells. Published in the Lancet journal last week, the team of surgeons from Spain, the UK and Italy, orchestrated the world's first tissue-engineered whole organ transplant. Professor Paolo Macchiarini...


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Sperm, smoking, screening and more

11 July 2011

By Sarah Pritchard

Page URL: Appeared in BioNews 615

Some of the highlights from the 27th Annual Meeting of the European Society of Human Reproduction (ESHRE) in Stockholm include good news for sperm donation in the UK; advice about how to reduce the effects of tobacco on unborn children; a 'non invasive' screening technique for chromosomal abnormalities in embryos; and a mathematical model to help reduce multiple births in IVF procedures.

UK sperm crisis 'averted'

On Monday, the London Sperm Bank (LSB) presented encouraging results from its recent marketing campaign to recruit the 500 sperm donors necessary to meet the current need in the UK.

It reports that between March and December 2010 potential donor enquiries numbered 3,062, and of the 397 men who attended an interview 34 percent went on to join the program. The research team says that the 2,410 donations now stored could theoretically provide over 2,000 treatment cycles, which is around half of the annual UK demand.

Dr Gulam Bahadur from the LSB believes its approach of promoting dedicated facilities with sympathetic surroundings; a humorous logo aimed at a wider audience; an advanced quality management system focused on listening, engaging and reacting to potential donors' needs; and an improved follow-up system will encourage the behavioural change needed to recruit more donors.

Quit smoking when you find out you're pregnant and your baby won't suffer

Stopping smoking when you find out you are pregnant is enough to avoid the adverse effects of tobacco on your baby, UK researchers reported on Wednesday.

Dr Nick Macklon and his team at the University of Southampton used data from more than 50,000 pregnancies to show that women who gave up smoking when they realised they were pregnant had babies with similar birth weights to women who had never smoked.

The results were adjusted for factors that are linked to birth outcomes, such as obesity, maternal age and socio-economic background. However, Dr Macklon did warn that smoking can adversely affect fertility, making it harder for couples to conceive. He said the message is that if you do fall pregnant while you are still smoking 'it's not too late to do something about it'.

'Non-invasive' chromosome test revealed

A new way of checking that embryos implanted during assisted reproductive therapies have the correct number of chromosomes was revealed on Wednesday.

The current methods of PGS involve taking a cell directly from the embryo to test it for conditions such as Down's syndrome, or biopsying a part of the woman's egg before it is fertilised. Both procedures risk the egg and embryo's survival.

However, research led by Dr Elpida Fragouli from the University of Oxford has found that the cells surrounding the egg can provide information about its genetic make-up.

'If chromosomal abnormalities in the egg result in changes in the surrounding cumulous cells, it is possible that this could lead to a new way of testing eggs, before they are fertilised', said Dr Fragouli. 'Cumulous cells are routinely stripped off eggs during IVF treatments and are usually discarded, so it should be straightforward to obtain them for analysis'.

The research team are currently comparing the standard methods of PGS with their new approach and, with good results, will undertake a clinical trial next year.

Mathematical model developed to reduce twins while maintaining good pregnancy chances

Swedish researchers have developed a mathematical model that can predict whether women should undergo single or double embryo transfer, thereby maximising the chances of pregnancy while reducing the risk of a multiple birth.

Dr Jan Holte from Carl von Linneklinikken in Uppsala, Sweden found that combining four factors – the quality of the embryo, the age of the woman, her ovarian responsiveness, and information about any previous IVF attempts, such as whether they involved fresh or frozen cycles – reduced the twin rate while maintaining live birth rates.

This model was used in his clinic between 2004 and 2007 for 3,410 embryo transfers, and compared to 1999-2002 the amount of single embryo transfers increased from 11.1 percent to 76.2 percent. The rate of twin deliveries dropped from 26.1 percent to just 1.9 percent, while live births remained at similar levels.

'The results suggest that application of the model may reduce twin rates to the desired level, in our case that of the normal Swedish population, while totally preserving pregnancy rates and markedly reducing risks for the offspring', he commented.


28 August 2012 - by John Brinsley 
Women who repeatedly reject pregnancies may be 'too good' at carrying, research indicates...
18 June 2012 - by Helen Brooks 
An unhealthy lifestyle may not affect sperm quality as much as previously thought. A study in the journal Human Reproduction indicates that smoking, high alcohol consumption and being overweight all have little effect on semen quality...
28 November 2011 - by Nicola Drury 
An increasing number of NHS clinics that provide assisted reproduction technologies (ART) are denying treatment to women who smoke or have a partner who smokes. But is it appropriate for any lifestyle factors to be used to deny state-funded treatment? And where should the line be drawn between medical 'advice' and 'restrictions'?...
01 August 2011 - by Harriet Vickers 
Scientists have increased the quality of embryos developed for IVF - by culturing them on a bed of pins. Currently, embryos are fertilised in a dish, and left there to culture for a few days before being implanted. However, Professor Gary Smith, a researcher on the project, says this doesn't mimic how embryos naturally gestate...

04 July 2011 - by Dr Lux Fatimathas 
European researchers have linked ovarian stimulation in women aged over 35 to increased chromosomal abnormalities. Genetic screening shows that the production of oocytes is disrupted during fertility treatment involving ovarian stimulation...
16 May 2011 - by Chris Chatterton 
The UK's fertility regulator published a report last Thursday that it says indicates its success at reducing multiple births from fertility treatment by promoting elective single embryo transfer (eSET)....
24 January 2011 - by Maren Urner 
A team of US scientists has studied the immediate consequences of cigarette smoking in humans and found cigarette smoke potentially affects genes within a timescale of minutes....
01 November 2010 - by Rosemary Paxman 
An embyro screening test could significantly increase IVF success rates, US researchers have found...
28 June 2010 - by Kyrillos Georgiadis 
A controversial dating website that only allows 'beautiful people' to join has launched a sperm and egg bank so that people can have 'beautiful children'...


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Australian sex-offender seeks access to IVF

11 July 2011

By Kyrillos Georgiadis

Page URL: Appeared in BioNews 615

An Australian man is seeking to overturn a ruling barring him and his partner from accessing IVF on the grounds of his previous conviction in 2003 for having sex with a 16-year-old student while he was employed as a teacher's aide.

The man, know only as ABY, said he is being denied basic human rights because he is not allowed to access the treatment. He and his wife had started IVF before he was arrested and planned to resume it when he was released from prison. He was jailed for three years with two years suspended.

Under Victorian law, convicted sex-offenders who want IVF must appear before a review panel before treatment is granted. The panel, however, denied the couple access to treatment on the grounds of ABY's previous conviction.

The Victorian state Assisted Reproductive Treatment Act requires all IVF users to undergo police and background checks before they are offered treatment and operates a presumption against treatment for couples where either partner has been convicted of a sexual offence. The law was introduced after the Victorian Law Reform Commission recommended barring people convicted for sexual or violent offences from IVF on the basis that they presented a potential risk.

During the hearing at the Victorian Civil and Administrative Tribunal, forensic psychiatrist Dr Danny Sullivan said the 33-year-old man had 'age appropriate relationships' throughout his adult life and, in his view, was not a paedophile or someone with an unnatural interest in post-pubescent girls.

Dr Sullivan said it was 'extremely unlikely' ABY would have difficulty discerning the boundary between parent and child and there were 'no deficits that would look like ABY posed a risk to his own children'.

ABY said he was sorry for what he did, but it was wrong to deny him the chance to have children. 'Every person deserves the right to have a family', he said. 'People make mistakes. It's just very trying'.

The couple's solicitor, Bianca Moleta, said the review panel had breached her clients' rights. 'By virtue of the Charter of Human Rights the decision reach by the panel is unlawful', she said. 'As they're a public authority they need to consider human rights and in the decision and they didn't do that'. Moleta says the panel breached his human rights to health as well as the right not to be punished twice.

However, Victorian Opposition health spokesman, Gavin Jennings, has defended the review panel. 'We have question marks about whether you would be a good parent because you have a sexual conviction', he told ABY. The tribunal has also heard that ABY had a history of drug and alcohol dependence.

Herald Sun | 28 June 2011
ABC News | 24 June 2011 | 28 June 2011
Sydney Morning Herald | 28 June 2011


28 May 2013 - by Antony Blackburn-Starza 
A court in the state of Victoria, Australia, has allowed a previously convicted sex offender and his partner to have access to IVF treatment...
29 October 2012 - by Dr Mary Yarwood 
A convicted sex offender and his partner have been denied access to IVF treatment by the Victoria Court of Appeal in Australia, pending a re-hearing by a lower court....
12 March 2012 - by Dr Rosie Gilchrist 
Nine NHS primary care trusts (PCTs) have introduced restrictions to IVF treatment for patients who smoke or are overweight...
05 September 2011 - by Dr Sonia Allan 
An Australian commercial television station recently ran a news story about a donor-conceived woman who has heritable bowel cancer (1). She did not inherit it from her mother. She is denied access to information about her sperm donor because he donated before laws in Victoria enabled information to be released to the donor-conceived. She cannot contact her eight half-siblings, who share that donor, to warn them they may be at risk...

06 June 2011 - by Ben Jones 
A public inquiry has been launched by the UK's Justice Secretary Kenneth Clarke after a newspaper's freedom of information request revealed a prisoner was granted permission to provide sperm for use in artificial insemination with his partner while in custody...
18 October 2010 - by Antony Blackburn-Starza 
Two Spanish prisoners have reportedly received IVF treatment while in prison...
12 July 2010 - by Chris Chatterton 
An Australian Supreme Court has allowed a woman to continue with her self-funded IVF treatment, after she was given an 18-month jail term for fraud last November...
19 January 2009 - by Dr Anna Smajdor 
In October 2008, it was reported that a Spanish woman, Elena Beloki, had been granted permission to receive IVF treatment. Beloki is currently serving a 13-year prison sentence for her involvement with the Basque separatist organisation, Eta. Her fertility treatment will be carried out while on bail, and will...


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TV Review: Should I Test My Genes? The Price of Life

11 July 2011

By Daniel Malynn

Page URL: Appeared in BioNews 615

Should I Test My Genes? The Price of Life

BBC2, Tuesday 5 July 2011

Presented and directed by Adam Wishart

'Should I Test My Genes? The Price of Life', BBC2, Tuesday 5 July 2011 (presented and directed by Adam Wishart)

Adam Wishart's documentary charted his personal journey to discover the secrets hidden in his genes. After his mother's death from breast cancer, Adam wanted to discover whether he too is genetically at risk of developing the disease. Looking at his immediate family history, he found seven of his mother's 14 brothers, sister and cousins died from cancer. Adam's mother, aunt and grandmother all had breast cancer.

In the documentary, he went to see genetic counsellor Chris Jacobs from Guy's hospital in London and was told only five to 10 percent of cancers are due to genetic susceptibility. The councillor also explained Adam had a 50/50 chance of inheriting a cancer-related gene if his mother was a carrier. Adam's aunt did not have a predisposition to developing cancer, he discovered. The test showed no faults in her BRCA1 and BRCA2 genes linked to hereditary breast cancer. Adam also had the test to see if he had inherited a 'cancer gene' from his mother.

The documentary compared genetic testing carried out on the NHS to commercial testing via the internet. Adam decided to pay for a commercial test. He discovered commercial websites highlighted the importance of genetic knowledge and sold a notion of body ownership and control.

The decision of whether or not to be tested was well covered in the documentary. Adam met Alex whose mother suffered from Huntington's disease caused by a faulty gene on chromosome four. The faulty gene leads to damage to nerve cells in the brain. If you have the faulty gene you will - at some point - develop the disease and there is also a 50/50 chance of passing on the condition.

Alex struggled to decide whether or not to be tested and thought about the implications for her and her daughter. She decided not to take the test, which made Adam reconsider the notion that information is key - in this case it seemed like 'opening Pandora's Box'.

The effect of genetic testing was also explored, especially the effect on Julie who had an 80 percent chance of developing breast cancer. She decided to have a double mastectomy to dramatically reduce her chances of developing the condition. The personal cost to Julie was clearly captured by the documentary, including her emotional turmoil about 'mutilating' her body. Julie wished she had not been tested for 'breast cancer genes'.

The documentary also dealt with PGD - the screening of eight-cell embryos for genetic conditions. The use of PGD was well discussed and the documentary showed the successful process for Tracey and Thomas. The couple had experienced several miscarriages and lost twin boys due to a genetic fault in Thomas' father's family.

The cost of PGD to the NHS is £8,000 a cycle. The chances of being successful through PGD are low: out of the 20 eggs harvested from Tracey only six fertilised. Out of those six, only three were viable for PGD and only one didn't have Thomas' genetic mutation.

The documentary tried to provide some balance about the possible negative implications of genetic testing. Adam met with Michael Baum, a former professor of surgery from University College London who said mutated genes, such as BRCA1 or BRCA2, may be 'stuck' with 'good' genes. By using PGD we may risk selecting out evolutionary advantages along with the mutated genes.

Adam also met Professor Steve Humphries, an expert in the genetics of cardiovascular disease from University College London, to discuss the lack of testing for familial hypercholesteroleamia (FH). FH leads to dangerous high cholesterol, which can cause heart attacks. Professor Humphries wanted the NHS in England to fund screening for this condition like they do in Wales. The cost of screening and treating the estimated 100,000 sufferers would be £10 million; Professor Humphries argued that - in the long term – screening would save the NHS money.

Another visit was to Helen and her family who all have sickle cell anaemia - a genetic condition only inherited if both parents are carriers. In sickle cell, red blood cells turn from their usual doughnut shape to a half-moon shape, which causes them to clump together. This causes pain and potentially serious damage to organs. Helen was campaigning to raise awareness in the African-Caribbean community about the effect of sickle cell and the importance of being tested. Testing for sickle cell is available post-conception with the option of aborting affected fetuses, but Helen believed a system of pre-conception testing would help carriers make decisions about staying with a partner or using PGD.

Finally, Adam met a doctor who tests every at-risk patient joining his practice for sickle cell. But this seemed to be the exception instead of the norm. Dr Anne Mackie, the UK's National Clinical Director for Screening, worried about the ethical implications of advising patients about testing. She also argued that the possibility of wrong results or false positives could cause unnecessary distress.

The documentary ended on the anniversary of Adam's mother's death when he found out he did not have a genetic predisposition to breast cancer. But this jubilant scene was short lived because Adam received the results of his commercial testing. The information about his genetic risks was overwhelming and this highlighted the problems of genetic testing without effective guidance or counselling.

It was a challenge to keep up with all the diverse issues discussed by this documentary. Overall the documentary was well made - it was an informative and highly personal story. It covered a wide range of areas involving genetic testing, particularly the financial, heath and personal cost of testing both for adults and in reproduction.

BBC Two | 05 July 2011


03 October 2016 - by Isobel Steer 
Do you know who owns your genome? And who, if anyone, would you choose to give your genetic information to? This debate, organised by the British Science Association and supported by Genomics England, covered the cutting-edge issues in genomic ethics and legality...
13 July 2015 - by Dr Julia Hill 
Julia Hill reviews 'The Lion's Mouth Opens', a moving portrait of Huntington's Disease...
23 February 2015 - by Sean Byrne 
Do you really want to know? This was the question presented in the award-winning documentary of the same title, and to the panel in a discussion that followed its recent screening by Genetic Alliance UK...
21 May 2012 - by Daniel Malynn 
These seven short films provide little more than a string of provocative quotations, which do little in themselves to foster a good debate of a complex issue. While all the speakers' opinions and experiences provide a range of views on the issues raised by genetic screening, there is a clear lack of consistency in some of the arguments. The question posed in the title loosely runs throughout but the films lack collective coherency with little linkage between them....
28 November 2011 - by Dr Rebecca Hill 
Short people can blame deleted sections of DNA for their diminutive stature, according to a study looking at variations in the genomes of over 12,000 children...


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