As a supporter of surrogacy, I expected the television adaptation of The Handmaid's Tale to be uncomfortable viewing: Margaret Atwood's chilling dystopian novel is well known for being the ultimate warning against surrogacy. But I have come away each week thinking, when you separate fact from fiction, what a strong case the story makes for surrogacy with informed consent.
In the story, the fictional US Republic of Gilead is a totalitarian theocracy in which, after an epidemic of infertility, the few women who can bear children are made to become surrogates. Our hero Offred and the other 'handmaids' are deprived of even their names and forced (through servitude and rape) to carry children for the powerful.
For some feminist commentators, the novel showcases that all surrogacy is exploitation: the use of women's bodies as a means to an end, and the stealing of children from their mothers. But they are missing the point. The real message is not that surrogacy exploits women; it is that women should always have the right to choose the circumstances in which they conceive and carry children.
That is not to say that there are no ethical concerns about modern global surrogacy. Particularly in South East Asia, where surrogacy often involves poor women bearing children for Western couples in arms-length's arrangements, we are right to worry that surrogates are not given the information to make an informed choice, are not cared for well enough, and may feel the loss of babies they have no ongoing connection with. But we should be careful. It is wrong to presume that women in poor countries are not as capable of making a valid choice as Western women. In one case I dealt with, an Indian surrogate was proud of using surrogacy to get her family back on its feet after their business was destroyed by flood - she and the British parents she helped were grateful to each other, and stayed in touch. Should she have been denied the option to be a surrogate, which bettered her and her children's lives? To address the risk of exploitation in cross-border surrogacy we should expand women's options by (among other things) alleviating poverty, and we should regulate surrogacy to ensure informed consent; we should not take women's best choices away.
We should also support surrogacy properly at home. In the UK, surrogates volunteer to help to those who cannot carry children, proudly offering a solution which even the best doctors cannot. Far from being forced into surrogacy, they are usually mothers themselves, touched in some way by the pain of those who cannot conceive, and wishing to make the family they cherish possible for someone else. Having made that choice (a choice starkly absent for Offred and the other handmaids), they are clear that the children they carry are not theirs. You often hear UK surrogates say that they don't 'give up' the children they carry, they give them 'back'. The relationship between a surrogate and those she transforms into a family is one of the most heart-warming of human collaborations. In the UK, unlike in Gilead, surrogacy relationships are based on consent, and UK surrogates regard those who think them exploited as being wildly uninformed.
Although the overwhelming majority of UK surrogacy experience is positive, the law in the UK – dating from the 1980s – still discourages it. Surrogacy agreements are legally unenforceable; the surrogate is the legal mother of the child (even if, as is now common, she has no biological connection with the child she carries); and there are restrictions on advertising, the support professional third parties can offer and, at least in theory, the compensation surrogates can receive. Instead of a legal framework which supports consenting surrogacy upfront, parents and surrogates muddle through an informal arrangement until the birth, after which there is a long court process to sort out parenthood. The UK framework has driven increasing numbers of intended parents overseas for surrogacy in search of greater legal certainty, something which has arguably exported rather than resolved the concerns about exploitation, as well as exposing children to enormous legal complications (newborn babies are routinely born stateless and parentless in cross-border surrogacy).
The good news is that a review of UK surrogacy law is now on the horizon. The UK's surrogacy organisations are unanimous in calling for reform, and the Law Commission will announce in the autumn whether it will take on the project. In the meantime the government has already made progressive changes over the past few years, including giving maternity leave rights to parents through surrogacy and allowing unmarried and same-sex couples (and shortly single parents) to have their parentage recognised. There is widespread acceptance that the law, not substantially reviewed by Parliament since it was written more than thirty years ago, needs to be brought up to date.
What we need as the next step is to create a clearer legal framework for those going into UK surrogacy arrangements, to facilitate informed consent, to give greater clarity, and to ensure that children are no longer born into legal limbo. The fact that the law currently makes a surrogate incapable of consenting to the transfer of parenthood until six weeks after she has given birth feels archaic and out of step with reality. Thirty years of real surrogacy experience shows that women can - and do - commit to carrying a child for someone else. In the UK if not in Gilead, surrogacy is a reproductive choice, and one which deserves our respect and recognition.
And here we come back to The Handmaid's Tale. The heart of the story is a warning, not against surrogacy, but against women not being allowed to decide for themselves how and when (and for whom) they bear children. We must do all we can to ensure that surrogacy is ethical, and that any choice to become a surrogate is an informed and independent one, both at home and abroad. But we must also make UK law fit for the 21st century by supporting ethical surrogacy properly and acknowledging that, when it comes to reproduction, women do know their own minds. What the Handmaid's Tale has taught me is that becoming a surrogate, like all other reproductive decisions, should be part of a modern woman's right to choose.
The Handmaid's Tale was commissioned by the Hulu network and produced by Bruce Miller. The series is shown on Channel 4 in the UK - watch it online via All 4.
The video features Dr Raj Mathur, Consultant Gynaecologist and Lead for Reproductive Medicine at St Mary's Hospital in Manchester, who addresses controversies surrounding IVF 'add-ons' and argues that the fertility sector has a problem.
The video was produced by Annabel Slater, Genetics Editor at PET and BioNews.
The controversial issue of IVF 'add-ons' – techniques and treatments offered to fertility patients on top of standard IVF – has been the subject of intense debate and media attention since last November's BBC Panorama's documentary, which claimed that many techniques advertised on fertility clinics websites were not backed up by good scientific evidence of success...
Two new genes which alter the risk of developing Alzheimer’s disease (AD) have been identified.
The study analysed the DNA of over 85,000 people, comparing gene variants between AD patients and healthy volunteers. They identified one gene variant that protected against AD, while another increased risk of developing the disease.
Dr Rebecca Sims at Cardiff University’s School of Medicine, and first author of the study, published in Nature Genetics, said 'these particular genes...are very good targets for potential drug treatment', as they produce proteins that are highly expressed in microglial cells; the resident immune cells of the brain. She added that this data 'suggest that immune cells in the brain play a causal role in the disease'.
'This is direct evidence that if drugs can be designed to target these proteins, we have a chance to alter disease risk in people,' said Professor Gerard Schellenberg, at the University of Pennsylvania's Perelman School of Medicine, and one of the team. 'These multiple gene "hits" all originating from microglia are the clearest demonstration that these cells are part of Alzheimer's pathology and, more importantly, provide clear protein targets where we can start to intervene with drugs.'
Presently, AD affects around 850,000 people in the UK and current treatments have limited effect. The disease causes a build-up of proteins in the brain, which form toxic structures called plaques and tangles. These structures damage the connections between nerve cells, causing them to die. Microglia respond to these dying cells as well as the toxic structures themselves, therefore targeted treatments could be beneficial.
The study also revealed a novel mutation in a third gene, also highly expressed in microglia, which has previously been associated with increasing the risk of AD, called TREM2 (see BioNews 682).
The research has been well received by the AD research community with Dr Doug Brown, director of research and development at the UK's Alzheimer’s Society explaining that 'the discovery of two new risk genes for Alzheimer’s is an exciting advance that could help to deepen our understanding of what happens in the brains of people with the disease'.
US scientists have dramatically improved the in vitro maturation (IVM) of pig egg cells, offering the possibility that similar successes could be achieved in humans.
By investigating the conditions in which egg cells were growing in the lab, researchers were able to double both the number of viable pig embryos and the size of litters birthed.
Professor R. Michael Roberts of the University of Missouri said: 'It was a serendipitous discovery, really. Generally, there are multiple steps to producing viable embryos … however, it’s costly and sometimes yields very little return. We were seeking a way to do that more efficiently and stumbled upon a method that may have implications in human fertility clinics as well.'
IVM involves the removal of immature eggs, which are then matured in the laboratory prior to fertilisation and implantation. This is different to IVF (in vitro fertilisation), where eggs are allowed to mature in the body before being removed for fertilisation.
The research, published in the journal PNAS, investigated ways to improve the number of live piglets born from eggs which had undergone IVM and IVF. Cells in the lab need to be grown in a growth medium, which contains not only nutrients, but also small proteins known as cytokines, which affect cell growth and behaviour. Using the correct cytokines in a growth medium helps to mimic the environment the cells would be in inside the body, and can be vital in keeping cells in good condition.
By adding three specific cytokines, FGF2, LIF and IGF1, to the egg cells' medium, named FLI medium, the researchers were able to double the number of viable embryos suitable for implantation, and when these embryos were used they gave double the litter size of piglets born. This, in effect, quadrupled the total efficiency of the procedure.
The scientists, from the University of Missouri, do not work on human fertility, but on cattle and pig breeding as well as making animal models of human disease, where efficient IVM and IVF is also key to success. The researchers hope the FLI medium may be effective in human IVF.
A father is suing a London fertility clinic for £1 million after his ex-partner secretly conceived his baby via IVF following their split.
The UK High Court heard on 19 June 2017 that his former partner had tricked doctors into helping her conceive using a frozen embryo that had been fertilised with his sperm prior to their separation, resulting in their six-year-old daughter.
He is suing the clinic for breach of contract, and seeking monetary damages to cover the costs of raising his child, in addition to covering legal fees.
The embryo transfer took place in October 2010, five months after the 'volatile and rancorous' relationship broke down, at IVF Hammersmith based in Harley Street, London.
The couple had previously conceived a son, now eight-years-old, using IVF and had frozen further embryos for possible future IVF cycles after signing an 'agreement for cryopreservation' back in 2008.
Michael Mylonas QC, representing the father, explained that the clinic performed the procedure in breach of a safeguard clause stating that 'in the event of divorce or separation, the IVF unit will only thaw or replace embryos if both [parents] give written consent'.
Mylonas added that the 'mother had forged the claimant's signature in order to procure the thawing of one of their embryos', thus fraudulently misleading the clinic as to believe they had acquired sufficient permissions for such a procedure.
Dr Audrey Giles, a handwriting expert, supported the claimant's account of events, telling the court she was '99 percent sure' that the father's signature had been traced and forged on the 'consent to thaw' paperwork.
Jeremy Hyam QC, representing IVF Hammersmith, argued that the clinic 'did not expect - nor are [they] to be faulted for not expecting - duplicity of this nature', and consequently should not be expected to offer any compensation to the father.
The fertility medics involved in the procedure claim they were only made aware of the couple's separation 18 months after the child had been born. In addition, the father's 'informed written consent' had been correctly obtained on a number of documents in earlier meetings the father had attended throughout the IVF process.
The mother denies any forgery or action without the father's approval. She is the subject of a separate claim brought by the clinic.
Almost 75 percent of the human genome is 'junk DNA', suggests a new study.
The findings contradict the results of a similar study published in 2012 by a consortium of scientists from the ENCODE (Encyclopedia of DNA Elements) project, which claimed 80 percent of the human genome to be functional (see BioNews 672).
'We need to know the functional fraction of the human genome in order to focus biomedical research on the parts that can be used to prevent and cure disease,' explained Professor Dan Graur of the University of Houston, Texas, who led the study. 'There is no need to sequence everything under the sun. We need only to sequence the sections we know are functional.'
Early studies on the human genome around the 1950s had assumed that almost the entire DNA sequence was involved in coding proteins, but this assumption was gradually shed as studies revealed some DNA appeared to have no function. The term 'junk DNA' was first coined in 1972.
While ENCODE defined DNA which showed any 'biochemical activity' as being functional, Professor Graur defined functional DNA as having evolved to do something useful, and so mutations in these regions would be likely to be detrimental (deleterious).
Deleterious mutations are normally weeded out of a species through the process of natural selection. Using the accepted mutation rate for the functional part of the human genome, the team developed a model to calculate the decrease in overall survival in relation to the proportion of functional DNA.
Past historical population records show that each human couple per generation needed to produce slightly more than two children to maintain a stable population size. Yet the team found that if 80 percent of the human genome were functional, the accumulation of deleterious mutations in offspring would require an unrealistically high birth rate to maintain a stable population – each couple per generation would need to bear at least 15 offspring, in order for two to survive and reproduce.
Instead, the team conclude that only 10 - 15 percent or a maximum of 25 percent of the human genome is functional. These findings compare favourably with a 2014 estimate of eight percent (see BioNews 765).
Speaking to New Scientist, Dr Ryan Gregory of the University of Guelph, Ontorio agreed that most DNA is probably junk, but cautioned it is not yet known how much DNA has a non-sequence-related function, and that some regions of DNA are useful without having an important sequence.
A recent study has lent more weight to the view that 'Junk DNA' may be anything but junk. A joint effort by the European Molecular Biology Laboratory (EMBL) in Heidelberg, Germany and Stanford University, California, US, has uncovered large differences between the non-coding DNA of different individuals, which may be associated with differing levels of disease risk and other traits too...
The universally accepted maxim that genes are transcribed into RNA and subsequently translated into proteins, a concept that has underwritten huge swathes of research in the last 40 years, has been significantly muddied. A groundbreaking Nature paper has shown the road from genome to protein is much...
US scientists have identified a new mechanism by which genes are silenced, or 'imprinted' during early embryonic development.
As imprinted genes are critical for early development, the discovery of this new epigenetic mechanism could have important implications for embryology research.
'Our discovery sheds new light on a fundamental biological mechanism and can lay the groundwork for therapeutic advances,' said Yi Zhang, a professor at HMS, Harvard Medical School, and Boston Children's Hospital and a Howard Hughes Medical Institute investigator, who led the research. 'A gene that is turned off by epigenetic modifications can be turned on much more easily than a gene that is mutated or missing can be fixed.'
Embryos inherit two working copies of most genes from their parents, but for a small number of genes, one copy must be switched off for life in order to allow healthy development. This process is known as imprinting.
Prior to this discovery, the only mechanism that was known to function in genomic imprinting was DNA methylation, where genes are silenced by the attachment of chemicals called methyl groups to different parts of their DNA.
'Since its discovery over two decades ago, DNA methylation has been the only known mechanism governing genomic imprinting, said Dr Azusa Inoue of Harvard Medical School and first author on the paper. 'However, much to our surprise, the imprinted genes we looked at lacked DNA methylation, which told us there must be another mechanism at play.'
Researchers at Boston Children's Hospital and Harvard Medical School were mapping imprinted genes in developing mouse embryos when they discovered imprinted regions that lacked methylation. When they further investigated these methyl-independent regions, they found the common presence of modification to a histone - a bead-like protein which helps package DNA - called H3K27. When they removed the histone modifier from developing embryos, imprinting was lost – and both copies of the genes were expressed.
In total, the study identified 76 genes that were imprinted by histone modification. Importantly, many of these genes are linked to crucial developmental processes, including formation of the placenta, limb abnormalities and a disorder linked to eye development.
Genome-wide analysis in South Asian populations may provide insight into rare genetic diseases, suggests research.
The Indian subcontinent is extremely genetically diverse, with about 1.5 billion people forming around 5000 well-defined subgroups. The practice of marrying within the same community or caste means these populations remain relatively separate, and may be vulnerable to specific rare genetic diseases.
Nearly one-third of these subgroups experienced a 'founder event' – where a large population is descended from a small number of ancestors, found the study. And this leads to a high rate of recessive diseases, according to the paper in Nature Genetics.
'Everybody carries a small number of mutations that could cause severe disease, but each person usually only has one copy – and two copies are needed to get sick,' said study co-author Nathan Nakatsuka, at Harvard Medical School (HMS) in Boston, Massachusetts. 'If parents have the same common ancestry, there is a greater risk that they will both carry the same, recessive mutation, so their offspring are at much greater risk of inheriting the two copies needed to manifest disease.'
The scientists analysed data over a 15-year period, from more than 2800 individuals from over 260 distinct populations, organised by factors including caste, geography and religion. They measured the strength of different founder events, by examining stretches of DNA shared between individuals from the same subgroups. More shared DNA sequences indicated a stronger founder event.
They found that 81 subgroups had stronger founder events and therefore greater losses of genetic variation than both Finns and Ashkenazi Jews – historically known to have strong founder events and high rates of recessive disease. Of these South Asian subgroups, 14 had estimated census sizes of more than one million.
'Much of the focus of genetic research in India has been on diseases such as diabetes, thalassemia, or sickle cell anaemia that are prevalent across populations, but that misses the huge burden of disease caused by rare conditions,' said co-senior author Dr Kumarasamy Thangaraj, at the CSIR-Centre for Cellular and Molecular Biology in Hyderabad, India.
The next step will be to map out the genetic origins of disease-inducing variants within the subpopulations. The scientists hope that this will impact rare disease research, prevention, and treatment. It could allow for premarital and prenatalscreenings that could reduce disease incidence, and could increase understanding of disease-causing mechanisms, aiding the development of predictive and personalised treatments.
'Our work highlights an opportunity to identify mutations that are responsible for population-specific disease and to test for and decrease the burden of recessive genetic diseases in South Asia,' said co-senior author Professor David Reich at HMS.
A new multinational study, published in Nature Genetics has identified a gene mutation which may dramatically increase the risk of developing certain types of heart disease for 60 million South Asians. The study - led by Kumarasamy Thangaraj of the Centre for Cellular and Molecular Biology in Hyderabad...
Spanish fertility treatment provider IVI announced they have invested £15 million into the UK this year.
'This investment represents a strong commitment, not just to our patients in the UK, but to the burgeoning life sciences sector,' said Dr Enda McVeigh, CEO of IVI UK.
IVI is the world's largest assisted reproduction group. It was founded in 1990 and operates across 70 clinics worldwide, including three UK clinics in London, Tamworth and Chester which opened this year at an investment of £4 million. IVI says it provided over 37,000 treatments in 2016, and delivered over 160,000 births in the past 26 years.
The company said it is committed to leading the fertility sector in research and development, and has established a research partnership with the University of Oxford to pursue research into patient care and evidence-based treatments including IVF and ICSI.
'Through our research partnerships with Oxford University and leading fertility experts, our clinics significantly improve access to fertility treatment for people across the UK, offering only evidence-based treatments that are proven to increase the chances of successful conception,' said Dr McVeigh.
The UK is the world’s third largest global hub for innovation and development in the life sciences sector, according to a report published in May by the UK BioIndustry Association, with continued growth following the EU referendum.
Australia's key body for medical research released a new set of ethical guidelines last month on the use of Assisted Reproduction Technologies with a welcome and unusual surprise: a section on conflicts of interest...
The Gene Machine is award-winning author Bonnie Rochman's book on pre-and post-natal genetic testing. In it, she navigates through classical bioethical issues such as carrier status testing, PGD, and termination. More contemporary issues, stemming from the capacity to select embryos with desired genes, or indeed to edit the genetic makeup of a prospective child are also covered. Unique to this book is the prism through which it is written: prospective parents, parents, scientists, clinicians and advocacy groups all share their stories and encounters with gene technologies.
The Gene Machine focuses on the evolution of genetic technologies, and the associated issues that these increasingly powerful tests are causing within the medical landscape. Rochman begins with an illustration of how the Ashkenazi Jewish community in the USA 'beat' Tay-Sachs disease: a fatal gene-driven disorder in children by determining the 'carrier status' of prospective parents. This gives our first encounter in the book as to how testing for a disease-associated gene can benefit whole communities where it is disproportionately represented. The book also alludes here to termination of fetuses with Tay-Sachs syndrome, a topic expanded later in the book.
Next Rochman steers us towards is the advent of PGD. She highlights how screening embryos for a lethal gene mutation in-vitro – such as the mutation causing Tay-Sachs – negates the need for termination. However, she is quick to highlight that testing for gene mutations is not always indicative of an actual disease, but rather of risk. She details the account of a mother who selected an embryo through PGD that did not bear a BRCA gene mutation (which increases the risk of developing breast cancer). It is at this juncture that Rochman begins to highlight ethical issues associated with selecting an embryo and therefore a child that bears a genotype selected by a parent.
Yet the Gene Machine is sparse on dealing with the complex ethical issues that genetic technologies create. The topic of 'designer babies' is addressed in terms of selecting embryos that do not bear specific genetic traits such as BRCA mutations or chromosomal abnormalities such as Down's syndrome, But Rochman does not develop these issues on a wider scale. Though she does touch on bioethical topics such as 'the slippery slope', she does not probe deeply enough. I believe Rochman needed to first address how societies understand the concept of health, and then how we classify human impairment as either a disease or disability.
Rochman establishes the ability of scientists to investigate the genetic make-up of an embryo, and investigates how this is affecting the prevalence of gene-driven impairments such as deafness or Down's syndrome. For example, she explores how some deaf parents may want to select an embryo with the genetic profile for deafness, citing cultural reasons. In great detail, she then describes how the number of Down's syndrome births is decreasing because of PGD. In my opinion, at this juncture Rochman should have questioned why certain genetic impairments, be they diseases or disabilities, are disvalued by society to the extent that they are selected out.
One of the new powerful technologies only briefly touched upon is the CRISPR/Cas9 system. CRISPR-Cas9, as Rochman describes, has the potential to edit the genome of an embryo prior to implantation. Potentially, parents could include or exclude certain genes in the embryos that will become their children. Rochman notes this has unsettling eugenic connotations. While this technology is still in its infancy, it nonetheless opens a debate on how much input we should be allowed have in the genomes of future generations.
Overall, I believe this book serves as an excellent introduction to the field of genetic technologies. Personally, coming from a scientific background, I had thought that the book would be top-heavy in explaining introductory biological concepts, however I was surprised at how efficiently Rochman details gene biology.
Moreover, I thoroughly enjoyed all the case presentations used to illustrate her points regarding a particular gene. Personally, through my reading on gene technologies, I find examples such as Huntington's disease, mutations in cancer-predisposing genes, and Down's syndrome are all too often used to highlight an author's point. But unique to this book is Rochman's ability to describe many different impairments and complement them with personal testimonies. These real-life accounts make the book accessible for the less scientifically-minded reader, and provide a perspective for those with a background in science that is often lost: the human story.
I believe that the book is lacking in detail in certain aspects, however, which may deter a reader with a strong background in science and bioethics. As mentioned, two key issues that are not elaborated on fully are the issues of what it is to be healthy, and the understanding of the difficult juncture between what classifies an impairment as a disease or disability. I hope Rochman follows up this book with a Part 2, as the issue that the book's final chapter deals with genome editing and the potential ability to genetically tailor an embryo. This going to become more prominent in the coming years, and cause much more debate on how these technologies impact families and society.
To summarise, The Gene Machine is a book written with all readers in mind, providing an excellent introduction to the progress of genetic technologies through the years, and how with each advancement comes more ethical considerations.
Buy The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids - And the Kids We Have from Amazon UK.
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