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Issue 500 (23 March 2009)

 

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.

Visit the BioNews website at www.bionews.org.uk where you can subscribe for free to receive BioNews by email in one of three formats, and search the archive of more than 6,000 articles.

 

 

CONTENTS

Comment

News Digest

Reviews

 


 

Happy birthday to us

23 March 2009

By Dr Jess Buxton and Dr Kirsty Horsey

Page URL: http://www.bionews.org.uk/page_38060.asp Appeared in BioNews 500
We at BioNews are celebrating its 10th birthday this week, with the publication of our 500th weekly email newsletter. Created and launched in 1999 by Juliet Tizzard - the first director of Progress Educational Trust (PET) - as a news round-up service for a few hundred interested people, BioNews now has an international readership of thousands. It provides weekly news and comment to an eclectic mix of subscribers, including scientists, teachers, students, clinicians, patients, journalists, ethicists and policymakers - both via the weekly email and the BioNews website.

In our respective roles as Genetics and Reproduction Editors of BioNews since 2001, we've covered many exciting and controversial developments in assisted conception, human genetics and embryo research. It has been fascinating to research and write about all developments in these areas over this period of time - a lot has happened! Not least among this in a scientific sense has been the development of what is really an 'offshoot' of one of these areas - human embryonic stem cell (ES cell) research - which BioNews has been keeping an interested eye on since its infancy. Last year's passage of new UK legislation on human fertilisation and embryology and, even more recently, Barack Obama's lifting of the federal funding ban for ES cell research in the US also feel like important milestones. Over the years we have also enjoyed reporting stories on advances in areas such as embryo testing, genome science, egg freezing, stem cells and animal cloning, to name just a few - and equally, to report on the legal, social and ethical debates they have sparked. Similarly, we have also enjoyed 'setting the record straight' and de-hyping stories where necessary.

During the past decade we've witnessed the exponential growth of online news coverage - the days of sifting through a daily pile of newspapers, snipping out and photocopying stories of interest, then trying to follow them up with online sources or in hard copies of scientific journals seem very far away. But if all news developments are now available instantly via the click of a mouse - or even direct to people's mobile phones - is there really still a need for a specialist news service like BioNews? We believe there is (and not just because we're the Editors!) - if anything, the huge volume of news coverage in the digital age makes an expert specialist 'filter' service like BioNews even more vital.

We have also seen BioNews' role as a forum for balanced debate grow in importance over the years. We would like to take this opportunity to thank everyone who has ever written 'Commentaries' for BioNews, sometimes at very short notice! Your contributions are vital as they help us to ensure that BioNews continues to represent a wide range of viewpoints on the issues we cover. On this - if you have something to say and we haven't contacted you - please feel free to contact us!

In 10 years, BioNews has expanded both in the breadth and length of its coverage, mirroring the pace of progress in these areas of medical science. We coped pretty well for a while, but following this expansion, we were delighted when Ailsa Stevens, PET's Science Information Officer, joined the BioNews editorial team in 2008. Her help has been invaluable! We'd also like to extend our grateful thanks to our ever-growing dedicated team of volunteers, who write news stories for BioNews in their spare time - we really couldn't do it without you. Further, we would like to thank the directors and trustees of PET, past and present, for their flexibility and support, without which BioNews would not have developed as it has. In particular, we would like to thank Professor Marcus Pembrey, PET's founding and current chair, for his unwavering enthusiasm and tireless fundraising efforts on behalf of BioNews and PET's other activities.

Looking to the future, we are very excited that in 2009 we will see a complete overhaul of the BioNews website and email, thanks to the generous support of the UK's Department of Health and the Wellcome Trust. The updated site will continue to provide news and comment on topical developments, but in addition will allow us to develop new ways of facilitating informed debate.

As editors, we strongly believe that BioNews should remain independent and also free for all to access - if you agree, and would like to help us do so, please consider making a donation to our '500

Fivers' Birthday Appeal, either online or by sending a cheque (payable to Progress Educational Trust) to:

Progress Educational Trust
140 Gray's Inn Road
London
WC1X 8AX.

So, happy birthday to us - and here's to the next ten years!


Dr Jess Buxton is Contributing Editor at BioNews and a Trustee at the charity that publishes it, the Progress Educational Trust (PET). She is co-author of The Rough Guide to Genes and Cloning (buy this book from Amazon UK) and Human Fertilisation and Embryology: Reproducing Regulation (buy this book from Amazon UK).


SOURCES & REFERENCES

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From Dolly the sheep to embryo selection: reflecting on a decade of progress in genetics and assisted reproduction

23 March 2009

By Mark Henderson

Science Editor of The Times. His book, 50 Genetics Ideas You Really Need To Know, is published on April 2 by Quercus

Page URL: http://www.bionews.org.uk/page_38061.asp Appeared in BioNews 500
Some things never change. When the first issue of BioNews appeared on 29 March, 1999, the second item announced that an Italian doctor was claiming to have helped ten infertile men to become fathers, by cultivating their sperm in the testicular tissue of rats. Just this morning, I was asked by The Times's foreign desk for my views on another claim by the self-same doctor - this time, that he has cloned three children, all nine years old and living healthily in Eastern Europe.

The past decade has clearly done little to dull Severino Antinori's appetite for self-publicity without evidence. But so much else has moved on.

In 1999, the first human embryonic stem cells (ES cells) had been derived just a year earlier, and Dolly celebrated her third birthday. This year has already brought the first patient study of an ES cell therapy, and improvements in the production of iPS (induced pluripotent stem) cells that might eventually circumvent the need for embryos.

The first issue of BioNews declared the Human Genome Project 'ahead of schedule', but it was still years away from completion at an eventual price tag of around $4bn. Last month, Complete Genomics announced it will offer human genome sequencing for $5,000 from June, and companies like 23andMe are selling genotyping data direct to consumers.

Reproductive medicine has also advanced, if not in quite such eye-catching fashion. Game-changers such as ICSI (intracytoplasmic sperm injection) and PGD were already with us in 1999 - but they are now well-integrated into clinical practice. IVF, and demand for IVF, is now seen as routine. And second-generation PGS techniques such as CGH and Parental Support are promising to take embryo selection to a new level.

It is always difficult to predict the future of science: if we knew which hypotheses were going to be right, and which drugs and therapies would work, there would be no need to do any experiments. But I expect the progress BioNews reports in its second decade to exceed even the advances that marked its first ten years.

What is more, that progress will pose direct challenges for medicine and society - perhaps more quickly than many people imagine. Scientists, clinicians and ethicists are already starting to consider how we should respond. But there are few signs of similar reflection among the politicians who will have to manage these developments, or the wider public who will be affected.

This applies to stem cells and to assisted reproduction, but especially to genomics. It is hard to overestimate the pace at which this is moving forward. The price of genome sequencing is moving inexorably downwards. It is already possible to genotype 500,000 SNPs for £300 a head - that is what 23andMe does - and a complete genome for a similar price is not going to be far away. The main barriers to providing this service for everyone are not going to be financial, but medical and social.

Is there actually any clinical value in knowing which common genetic variants a patient carries? Assuming there is - and very few common SNPs have yet been clinically validated as predictive markers - how will people respond to learning they have a raised or lowered background risk of heart disease? Will they become fatalistic, complacent, or scared to the point of anxiety? Will people worry about their genetic privacy, and avoid tests that might be helpful for fear of discrimination by insurers or employers? Can such privacy even be protected, when we leave DNA behind us everywhere we go? These are not just questions for scientists and ethicists - they are questions for us all.

Then there are the public policy implications of interpreting genomic information. So far, only a very few people have been genotyped by the direct-to-consumer companies, yet clinical geneticists, GPs and counsellors are already reporting visits from patients who want to know what their results mean. Fast forward to when most of us have had our whole genomes sequenced. Who is going to interpret the results? GPs will do their best, but few are trained to tease out risk profiles from SNP data.

Pharmacogenomics poses a further challenge. As we understand more about how genetic variation affects cancer and drug metabolism, we can expect the development of many more targeted drugs, matched to patients with particular genotypes or genetic sub-types of tumour. The first of these drugs, such as Herceptin, have proved however to be extremely expensive - how will the NHS be able to pay? The costs should come down as pharmaceutical companies use genetic data to optimise patient populations for clinical trials, but that will require a rethink of the appropriate regulatory regime

In his speech on science at the end of last month, Gordon Brown predicted a great future for genomic medicine. 'It is hard not to see how -- with the appropriate safeguards in place -- the potential of genomic information might prove to be a 21st century moment, a vast expansion of the boundaries of scientific understanding that holds breath-taking possibilities for the future effectiveness of medicine in Britain and across the world,' he said.

I think the Prime Minister is probably right. But there is little evidence yet that his government - or any of the other parties, for that matter - have yet started to think deeply about the many new questions that this expansion will pose.

This suggests a job beyond reporting for BioNews over the next decade. Its editors, and especially, its readers, need to drive these issues high onto the political agenda.

SOURCES & REFERENCES

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

10 October 2011 - by Dr Louisa Petchey 
US scientists have for the first time created 'personalised' human embryonic stem cells (hESCs) using a form of cloning. The result is a significant milestone on the route to using stem cell-based therapies but the researchers stress more work is to be done as genetic errors in the cells means they are not yet suitable for therapeutic use....

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'Kiss' hormone to give new hope to infertile women

22 March 2009

By Sarah Pritchard

Page URL: http://www.bionews.org.uk/page_13724.asp Appeared in BioNews 500

A group of scientists at Imperial College London have found that administration of the recently discovered protein 'kisspeptin' could 'restore fertility' for some women and form the basis for a new fertility treatment.

The findings of the research, presented at the annual Society for Endocrinology BES (British Endocrine Societies) meeting in Yorkshire and led by Dr Waljit Dhillo, showed that after receiving kisspeptin, women whose infertility was caused by the cessation of their menstrual periods began producing reproductive hormones again. Having discovered two years ago that kisspeptin treatment stimulated reproductive hormone release in fertile women, Dr Dhillo turned his research to infertile women.

Kisspeptin is produced during puberty and triggers the release of sex hormones, without which humans and animals would miss puberty and remain sexually immature. Conversely, over-activation of kisspeptin's receptor GPR54 causes early onset puberty.

The study at Imperial College included ten women who were not menstruating, five of whom were given kisspeptin, and the other five were given saline solution. Blood tests of those who received the kisspeptin revealed that there had been a 48-fold increase in the production of lutenising hormone, and a 16-fold increase in follicle stimulating hormone, both key sex hormones for ovulation and fertility. These results were far higher than those previously gathered for fertile women.

'This is a very exciting result and suggests that kisspeptin treatment could restore reproductive function in women with low sex hormone levels. Our future research will focus on determining the best protocol for repeated administration with the hope of developing a new therapy for infertility' said Dr Dhillo.

Professor Richard Anderson, a fertility expert from the University of Edinburgh said that the research held the promise of a more subtle way of treating women whose reproductive systems had 'shut down'. Where most current treatments involve the direct stimulation of a woman's ovaries which carries a risk of multiple births and side effects, kisspeptin would potentially address the underlying problem and maintain the body's own protective regulatory mechanisms. Professor Anderson believes the hormone 'may well become a mainstream part of therapy'.

SOURCES & REFERENCES
Wellcome Trust | 17 March 2009
 
BBC News Online | 17 March 2009
 
'Kiss' therapy infertility hope
Associated Press | 17 March 2009
 
Los Angeles Times | 16 March 2009
 

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28 July 2014 - by Purvi Shah 
Twelve healthy babies have been born after trials of a hormone treatment called kisspeptin-54 that has been hailed as a safer way to mature women's eggs prior to IVF...
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Genetic link between obesity and polycystic ovary syndrome

22 March 2009

By Dr Rebecca Robey

Page URL: http://www.bionews.org.uk/page_13725.asp Appeared in BioNews 500

British scientists have found that a common gene variant that predisposes carriers to obesity is also linked to polycystic ovary syndrome (PCOS). PCOS has long been known to be associated with obesity but the new study is the first to identify a genetic link between the two conditions.

The connection between obesity and PCOS prompted researchers at the Oxford Centre for Diabetes, Endocrinology and Metabolism, University of Oxford and Imperial College London, to investigate whether a gene variant linked to obesity also influenced the likelihood of developing PCOS. They looked at a gene known as the fat mass and obesity gene, or FTO, which has a variant known to be associated with increased body mass index and obesity. More than half of all people of European descent carry one or two copies of this FTO variant and those that have two copies are on average seven pounds heavier and 67 times more likely to be obese than those who don't carry it.

The research team, led by Dr Tom Barber, analysed the FTO gene in 463 women with PCOS and 1,336 women without PCOS to see which variant they carried. They found that women who carry the FTO variant that predisposes them to weight gain are also at greater risk of developing PCOS. They presented this data at the Society for Endocrinology BES meeting in Harrogate.

PCOS affects approximately one in ten British women of reproductive age, and is recognised to be the leading cause of ovarian failure leading to infertility in pre-menopausal women in the UK. Tiny cysts develop in the ovaries of affected women and they frequently fail to produce a mature egg during the monthly menstrual cycle. Symptoms include light, irregular or absent periods, difficulty conceiving, weight gain, acne and excessive bodily hair growth.

Dr Barber said: '[PCOS] is a genetic condition and one that is strongly associated with obesity; it is therefore of huge relevance for women given today's obesity epidemic...Our data provide the first genetic evidence to corroborate the well-documented association between these two conditions'.

Not all women with PCOS are overweight, but Dr Barber believes that obesity and PCOS may be connected by disturbances in the production of hormones such as testosterone and insulin. He added: 'Our future work will focus on elucidating the underlying mechanisms of PCOS and its metabolic consequences with the hope of understanding how this common condition develops'. This knowledge may contribute to the development of better therapies for PCOS.

SOURCES & REFERENCES
BBC News Online | 17 March 2009
 
Gene links obesity to ovary cysts
The Press Association | 17 March 2009
 
ScienceDaily | 16 March 2009
 
Nursing in Practice | 17 March 2009
 

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14 January 2013 - by Ruth Retassie 
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13 September 2010 - by Dr Marianne Kennedy 
Infertility in women is often linked to obesity. A new study published in Cell Metabolism suggests that insulin signalling in the pituitary gland could play a key role....

02 March 2009 - by Dr Charlotte Maden 
New research into the role played by the FTO gene in obesity has been published in the journal Nature, showing that the gene may function in metabolism. The FTO (fat-mass and obesity associated) gene has been linked to obesity in the past, which has provoked much interest...
19 January 2009 - by Adam Fletcher 
A new study, published in the International Journal of Obesity, may explain why certain genetic variations increase a person's risk of obesity. Professor Jane Wardle and team at University College London, UK, have demonstrated associations between particular variants of the FTO gene, and the likelihood of overeating...
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Gene could help prevent carbohydrate-related obesity

23 March 2009

By Rosie Beauchamp

Page URL: http://www.bionews.org.uk/page_13726.asp Appeared in BioNews 500

Researchers at the University of California, Berkeley, have published a study in the journal Cell that outlines their identification of a gene that is critical in turning carbohydrates into fat. The gene, called DNA-dependent protein kinase (DNA-PK), is a potential key to the prevention of obesity linked to the over-consumption of high carbohydrate foods, according to the study's authors.

It was found in the study that mice in which the gene DNA-PK had been deactivated were able to eat all the carbohydrates they wanted and still have 40 per cent less body fat than the mice in which DNA-PK was functioning.

Usually, after a meal of carbohydrates such as bread or pasta the levels of blood glucose (the digested form of carbohydrates) increase. The rise in blood glucose causes the secretion of insulin which helps the body covert glucose into energy. The excess glucose, which is not burned in energy, is usually converted to fatty acids and stored as fat.

The discovery of the DNA-PK gene may help to explain why some people can eat whatever they want without putting on weight, while others seem almost predisposed to obesity. The discovery of DNA-PK fills in the missing link by uncovering the pathway by which the conversion of excess glucose to fatty acids takes place.

Professor Hei Sook Sol, an author of the study said: 'It turns out the DNA-PK is critical to a metabolic process we have been trying to understand for many years... Identifying this signalling pathway involving DNA-PK brings us one step forwards in understanding obesity resulting from a diet of high carbohydrates, and could possibly serve as a potential pharmacological target for obesity prevention.'

SOURCES & REFERENCES
The Daily Telegraph | 19 March 2009
 
ScienceDaily | 23 March 2009
 

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02 March 2009 - by Dr Charlotte Maden 
New research into the role played by the FTO gene in obesity has been published in the journal Nature, showing that the gene may function in metabolism. The FTO (fat-mass and obesity associated) gene has been linked to obesity in the past, which has provoked much interest...
19 January 2009 - by Adam Fletcher 
A new study, published in the International Journal of Obesity, may explain why certain genetic variations increase a person's risk of obesity. Professor Jane Wardle and team at University College London, UK, have demonstrated associations between particular variants of the FTO gene, and the likelihood of overeating...
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Schizophrenia gene controls when new neurones mature

23 March 2009

By Rose Palmer

Page URL: http://www.bionews.org.uk/page_13727.asp Appeared in BioNews 500

Researchers at the Massachusetts Institute of Technology (MIT) Picower Institute for Learning and Memory in the US have found that a gene commonly associated with schizophrenia is essential for normal brain development and the growth of new neurons. The finding was reported in the journal Cell and could help lead to new treatments for the disorder, which affects up to one per cent of adults worldwide and is characterised by hallucinations, delusions, paranoia and depression.

The team, led by Li-Huei Tsai, the Picower Professor of Neuroscience, has shown for the first time that a gene known as DISC1 (disrupted in schizophrenia1) directly inhibits an enzyme called GSK3B (glycogen synthase kinase 3 beta). For decades doctors have treated bipolar disorder using lithium chloride treatments that target this enzyme.

The DISC1 gene was first identified in the 1990s when scientists studied a large Scottish family with mental disorders. They found that many of the family members who developed psychiatric disorders carried a mutation in the gene.

In a series of studies Tsai and colleagues found that DISC1 regulates the balance between neural stem cell self renewal and turning into neurons. A defective gene affects this balance and can lead to compromised cognition and behavioural abnormalities.

Tsai said: 'During brain development, a fine tuned mechanism regulates when neural stem cells divide and replenish their own population and when they turn into new neurons that will mature and grow appropriate connections with other neurons.'

The researchers found that the DISC1 gene is highly expressed in embryonic mice brain stem cells and also in the brain stem cells of adult mice. But when they inhibited the expression of DISC1, simulating what is occurring when someone carries a defective gene, it caused the stem cells to stop dividing and prematurely turn into newborn neurons.

In adult mice inhibition of DISC1 also produced behavioural side effects that were symptomatic of schizophrenia. For example the mice skittered around their cages, a behaviour which is often paralleled with mania in humans. These behavioural abnormalities were reversed when the DISC1 deficient mice were treated with a chemical inhibitor of GSK3B.

Tsai said that the findings are part of a larger picture of the genetic and developmental causes of psychological disorders. 'With this new knowledge of the DISC1-GSK3B interaction, one of the goals is to develop new drugs targeting schizophrenia, providing some hope that this devastating disease will be treated more effectively in the future,' she said.

SOURCES & REFERENCES
ScienceDaily | 20 March 2009
 
BBC News Online | 21 March 2009
 
Howard Hills Medical Institute | 20 March 2009
 
EurekAalert | 19 March 2009
 

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Anti-doping tests do not always identify cheating athletes

23 March 2009

By Dr Charlotte Maden

Page URL: http://www.bionews.org.uk/page_13728.asp Appeared in BioNews 500

New research has confirmed the inadequacy of current drug testing techniques used in sport to identify athletes using performance-enhancing drugs. The work, published in the British Journal of Sports Medicine, found that cheats from certain ethnic backgrounds are less likely to be caught.

The tests, which were initially introduced by the World Anti-Doping Agency (WADA) in 2004, analyse the relative levels of the naturally-occurring male hormone testosterone in urine samples from athletes compared to epitestosterone, a close derivative. Testosterone, and other hormones that boost testosterone levels, can be injected by athletes to enhance their performance. If the testosterone to epitestosterone ratio (T/E ratio) is more than four, it is taken as preliminary evidence of cheating and the sample is sent for further testing.

The team of scientists from the anti-doping lab near Lausanne, Switzerland, investigated the background hormone profiles of 171 football players from six different countries before and after adding extra testosterone. The footballers were aged between 18 and 36, and represented four groups: Africans, Asians, Caucasians and Latin-Americans.

They showed that some ethnic groups more frequently have a variant of the UGT2B17 gene, a gene affecting the excretion of testosterone, meaning that testosterone levels in their urine remain low. The results indicate that 81 per cent of the Asian players had this gene variant, compared to 22 per cent of the African, ten per cent of the Caucasian and seven per cent of the Latin-American players.

Christophe Saudan, lead researcher on the project, says: 'It means that some athletes can use testosterone without raising the T/E ration above four'. African athletes, for example, who rarely have the gene variant, excrete testosterone more efficiently: this makes them more likely to be caught if they cheat than their Asian counterparts.

Based on the findings, the scientists recalculated the test ratios to make them fair for each ethnic group. The found that more suitable T/E ratios were 3.8 for Asians, 5.6 for Africans, 5.7 for Caucasians and 5.8 for Latin-Americans. Even if these new ratios are applied, however, Saudan suggests that the test will still not be sensitive enough.

Saudan concludes that, based on the results from his lab, 'a unique and non-specific threshold to evidence testosterone misuse is not fit for purpose'. He suggests a solution to the problem could be the introduction of 'athlete's passports'; each individual's metabolic profile to be used as a baseline from which to monitor deviations to identify cheating. 'Each athlete would act as their own reference', he explained.

Frederic Donze, a spokesman for the WADA, says that the agency is well aware of the issue: 'The T/E ratio is just one of several warning signals that can lead to further action by anti-doping laboratories', he told New Scientist magazine, also confirming that work is currently underway to develop the 'athlete's passport' concept, including work with the Swiss group.

SOURCES & REFERENCES
New Scientist | 12 March 2009
 
The Daily Telegraph | 11 March 2009
 
EurekAalert | 11 March 2009
 

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15 February 2010 - by Dr Sophie Pryor 
Researchers have expressed concern about athlete's use of genetic tools in the 'next generation' of illegal doping, and have stressed the importance of developing reliable new detection tests to stop them. Writing in the journal Science, Theodore Friedmann and colleagues at the University of California warn that 'the time is right to look at how advances in genetics are affecting sport'. The authors highlight the dangers of using imperfect and 'highly risky' genetic techniques, which may have...

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New link found between our body clocks, metabolism and aging

23 March 2009

By Dr Will Fletcher

Page URL: http://www.bionews.org.uk/page_13729.asp Appeared in BioNews 500

A link has been found between the biological systems that govern aging and metabolism and those that control our daily cycles of feeding, activity and sleep. Researchers from Northwestern University, and Washington University School of Medicine, US, published their findings in the journal Science, and believe their results will have implications for the treatment of many metabolic and age-related diseases.

All animals have an internal 24 hour clock, known as the 'circadian rhythm', which causes a daily oscillation of brain activity, body temperature, hormone production and metabolism. The circadian rhythm is well understood at the genetic and molecular levels, but understanding of how it contributes to the health and disease of humans, and other animals, has remained elusive until now.

This new research uncovered a surprising link between metabolism and the circadian clock. The circadian clock genes were found to strongly regulate the production of nicotinamide adenine dinucleotide (NAD) - an enzyme that is involved in energy transport, and the release of energy from nutrients. NAD, in turn, regulates the activity of the enzyme SIRT1 which is known to be a key regulator of aging, metabolism and longevity. A form of SIRT1 is found in all organisms on Earth, and there are seven forms of the gene in humans that influence a wide range of tasks such as cholesterol metabolism, glucose breakdown and production, and fat burning and insulin sensitivity.

The key findings of this study hinged on the examination of laboratory mice by Joe Bass, an Assistant Professor of neurobiology and physiology at Northwestern University, and his colleagues. They discovered that levels of NAD were low and constant in mice with disrupted clocks but that in unaltered animals, even in perpetual darkness, levels of the enzyme fluctuated in tune with the circadian rhythm.

'Seeing this striking abnormality in the NAD levels was like discovering the cause of a disease in a patient after running a blood test,' Bass said in a statement. 'The pathway that controls NAD is tied to the clock at the most intricate level. This shows a direct connection - changes in the clock influence NAD.' It turns out that the opposite is also true - a deficit of NAD can negatively affect the clock. 'Perturbing the NAD pathway does affect the clock,' said Bass, adding: 'It does go in both directions.'

Bass warned that these results won't necessarily translate to humans but, if they do, 'this molecular knowledge gives us knowledge into diseases' such as sleep dysfunction, obesity and other metabolic disorders. That understanding could lead to new prevention tactics and therapies being developed in the future.

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Australian genetic discrimination findings flag concerns of future abuses

23 March 2009

By MacKenna Roberts

Page URL: http://www.bionews.org.uk/page_13730.asp Appeared in BioNews 500

Researchers at the University of Tasmania, Australia, have conducted the world's first study to have verified incidents of genetic discrimination and warn that such incidents are likely to increase without better safeguards. The five-year study surveyed 1,000 individuals who have had genetic testing during the past ten years, finding that roughly 10 per cent experienced some level of discrimination, predominantly in the life insurance sector. Researchers confirmed 11 cases where healthy individuals had been discriminated against for their supposed genetic predisposition to disease - including nine cases relating to life insurance applications and underwriting, one involving a worker's compensation claim and one involving a parole application.

One man was refused insurance for any claims relating to cancer after a genetic test revealed he was slightly more susceptible to prostate cancer. In 2000, one woman believed to have a genetic mutation that predisposed her to breast and ovarian cancer was denied all income protection and trauma coverage. Three years later, the same insurance company granted income protection except for breast cancer to another woman who was believed to carry the same genetic mutation. Insurance representatives attributed the difference to the underwriters having updated scientific information by 2003.

Professor Margaret Otlowski, director of the Centre for Law and Genetics at the University of Tasmania, explained that despite the small number of incidents, 'for those it has affected it is significant', and that the findings indicate that these numbers will grow as more reliable and affordable genetic technology is developed.

Richard Gilbert, chief executive of Insurance and Financial Services Australia, said the cases represented a small proportion of those with life insurance and only two per cent (eight cases) of the estimated 400 applicants who had genetic testing were declined solely for genetic reasons.

Experts warn that the findings illustrate Australia's need for regulation in this area and support a bill expected to be introduced to the Senate that would extend the aegis of the Disability Discrimination Act 1992 to genetic test consumers by prohibiting discrimination on the basis of genetic predispositions. The study found that most Australian employers were not yet using genetic testing or genetic information to monitor existing or potential employees but responses indicated at least some would use genetic testing in future if it were inexpensive and accessible.

Currently, Australian insurers and employers may use a person's genetic information only if their actions can be justified. According to life insurance industry guidelines, genetic testing cannot be required but applicants must declare any genetic test results known to them for themselves or close relatives. Insurers are exempt from discrimination laws if their decision is based on scientifically and statistically reliable evidence.

The findings support policy recommendations by the Australian Law Reform Commission in 2003 for better protection against the misuse of genetic information in insurance underwriting and the implementation of ways to challenge adverse decisions, according to the study's principal author and director of the Centre for Genetics Education, Associate Professor Kristine Barlow-Stewart. Her main concern is that 'it may be too premature to use test results' for insurance underwriting. Similarly, Otlowski believes that most genetic tests currently available are 'not appropriate' because we are 'still learning how to interpret this data'.

Last year the US passed groundbreaking legislation prohibiting employment and health insurance (not life insurance) genetic discrimination. In the UK, the government and insurance industry have currently agreed a voluntary moratorium on the use of genetic test results until 2014.

SOURCES & REFERENCES
The Age | 10 March 2009
 
ABC News | 10 March 2009
 
The Sydney Morning Herald | 11 March 2009
 

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Doctors must alert patients to IVF risks, says fertility watchdog

23 March 2009

By Ailsa Stevens

Page URL: http://www.bionews.org.uk/page_13731.asp Appeared in BioNews 500

The UK's Human Fertilisation and Embryology Authority (HFEA), the government's fertility watchdog, is updating its guidelines to recommend that doctors make couples aware of the potential risks to children conceived by IVF. The decision follows the publication of a study by the Centers for Disease Control and Prevention (CDC) in Atlanta, US, last November, indicating that babies born following assisted conception have a small increased risk of certain genetic health problems.

The HFEA says that the move is necessary in order to allow patients to make an informed decision about what treatment option to pursue. 'Following the publication of a US study into birth defects, HFEA's scientific and clinical advances committee reviewed our guidance and advice about the risks of treatment. As with any medical procedure, it is important that patients understand what the treatment involves and what the risks may be,' an HFEA spokesperson said.

The CDC study included 9,584 babies with birth defects, of which 2.4 per cent had been conceived using IVF, and 4,792 babies without birth defects, of which 1.1 per cent had been conceived by IVF. It showed that babies conceived through IVF and related assisted reproduction technologies were up to 30 per cent more likely to suffer from certain birth defects, such as cleft palate, digestive tract abnormalities and having a hole between the chambers of the heart.

The HFEA will post new information explaining the potential risks to patients on its website from next month. The information will also emphasise that further research is required to confirm the preliminary findings and that the risk of health problems, relative to natural conception, is very small.

Richard Kennedy, of the British Fertility Society, told the Daily Telegraph newspaper: 'What we need to remember is that the overall risks of an abnormality occurring is increased with IVF but it is still a small risk. Nevertheless, patients need to be aware.'

Some experts are predicting that the move may lead to a drop in the number of patients seeking IVF, with many only using it as a last resort once other avenues have been exhausted. Speaking to the Independent, Dr Gedis Grudzinskas, a consultant gynaecologist in London's Harley Street, said: 'There will now be less of a rush to use IVF depending on age and circumstance. People will be encouraged to use the gently-gently approach of artificial insemination or medication. Doctors have in the past jumped into IVF but they have done so thinking that there was no excess risk of a child being born with an abnormality.'

SOURCES & REFERENCES
The Daily Telegraph | 20 March 2009
 
The Guardian | 21 March 2009
 
BBC News Online | 21 March 2009
 
The Independent | 22 March 2009
 

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500 fivers appeal tops £1000 mark as BioNews publishes 500th issue

23 March 2009

By BioNews

Page URL: http://www.bionews.org.uk/page_13732.asp Appeared in BioNews 500

Last week we made a special birthday wish for our 500 fivers appeal reach a total of £1000 in time for the 500th issue of BioNews, published today. It was a close call, but we're pleased to report that thanks to your kindness and support we've now raised a total of £1005 (201 fivers) towards our appeal!

We've still got a fair way to go before we reach our target, but the good news is that we'll be celebrating our 10th birthday all year, so it's not too late to donate.

To show your appreciation of BioNews and help to keep it free from subscription charges in the months ahead, donate online or send a cheque (payable to Progress Educational Trust) to:

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Unlimited blood supply from stem cells within ten years, say researchers

23 March 2009

By Ailsa Stevens

Page URL: http://www.bionews.org.uk/page_13733.asp Appeared in BioNews 500

The NHS Blood and Transplant Authority, the Scottish National Blood Transfusion Service and the Wellcome Trust have jointly announced a pioneering project to create a potentially unlimited supply of blood for transfusions using embryonic stem cells (ES cells) derived from surplus IVF embryos which are donated for research. The 'synthetic' blood could eventually mean that clinical services would no long need to rely on obtaining a fresh supply of blood from donors since, in theory, a single embryo could supply the nation's needs.

The multi-million pound project will focus on identifying ES cells that produce the o-negative blood group. Although present in just seven per cent of the population, this blood group is in high demand because it can be transfused into anyone, regardless of their blood-type.

The project will be led by Professor Marc Turner, scientific director of the Scottish National Blood Transfusion Service. Professor Turner told the BBC: 'We should have proof of principle in the next few years, but a realistic treatment is probably five to 10 years away. In principle, we could provide an unlimited supply of blood in this way.'

Work is expected to start on the research within the next few weeks, pending a number of legal issues which are currently being considered. Some groups are opposed to the research because it involves the destruction of early embryos in order to obtain ES cells.

Josephine Quintavalle, from the pressure group Comment on Reproductive Ethics (Core), has concerns that the research could lead to a reduction in the number of blood donors. 'Associating this controversial research with a National Blood Transfusion service may even end up contaminating the feel-good image of blood banks. Those who donate blood but who defend the right to life of the human embryo may be reluctant to continue giving their blood,' she told the BBC.

Last year the privately-funded US company Advanced Cell Technology (ACT) succeeded in making massive amounts of red blood cells from human ES cells. However the long-standing ban on federal-funded human ES cell research, only recently reversed by President Barack Obama, has delayed further progress.

The Wellcome Trust has pledged £3 million towards the project, with the blood transfusion services of Scotland, England and Wales together funding the rest, as well as potential involvement from the Irish government. Other countries involved in similar research include Sweden, France and Australia.

SOURCES & REFERENCES
The Independent | 23 March 2009
 
The Daily Telegraph | 23 March 2009
 
BBC News Online | 23 March 2009
 

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

31 October 2011 - by Oliver Timmis 
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