the Human Future

Bioethical news articles for January 26th:

Fertile Union: “Too often, scientists and policy-makers talk past one another and ‘science-based’ policy-making is anything but. But sometimes, they get it right, and when they do, they deserve praise. One such case is last week’s announcement that Britain intends to develop in vitro fertilization (IVF) techniques that could cut the number of children born with devastating genetic conditions such as muscular dystrophy. Not only are scientists, lawmakers and ethicists speaking the same language, they are also synchronizing their efforts to make Britain the first country to test the techniques in humans, taking it light years ahead of other nations (see page 419). Uniquely among IVF procedures, the new techniques involve embryos that combine genetic material from three people. The prospect of a child with three genetic parents has inevitably raised concern among some commentators, and among politicians worried about what those commentators will say. The diseases targeted by these techniques are passed to children by mothers through faulty mitochondria in their eggs. The techniques therefore remove the genetic material from the nucleus of the faulty egg and insert it into a healthy egg that has been stripped of its own nucleus. This is where the third ‘parent’ comes in: a different woman must supply the healthy egg. A child born from IVF using one of the modified eggs will therefore carry the genes of three people: nuclear DNA from both parents and mitochondrial DNA from the donor.”

Margo Macdonald Dishes Up the Same Confused Euthanasia Proposals Again: “Margo Macdonald Tuesday announced that she is going to try again to legalise assisted suicide and/or euthanasia (it’s not clear which) in Scotland, just over a year after her last spectacular failure. Ms MacDonald, Scotland’s only independent MSP, said in unveiling a new consultation on the issue, that she has ‘learned lessons’ from her previous attempt and is proposing a ‘clearer, more straightforward process.’ Among her new proposals is a suggestion that trained ‘licensed facilitators’ would need to be present when someone is at the point of ending their own life to ensure that lethal drugs are ‘taken correctly’. But on who will actually qualify for assisted suicide under her bill she is less clear.”

Margo Macdonald

Major Victory for Life in Europe: “Euthanasia Must Always be Prohibited”: “Yesterday, the Parliamentary Assembly of the Council of Europe (PACE) adopted a non-binding resolution stating: ‘Euthanasia, in the sense of the intentional killing by act or omission of a dependent human being for his or her alleged benefit, must always be prohibited.’ The purpose of the resolution, entitled ‘Protecting human rights and dignity by taking into account previously expressed wishes of patients,’ defines the principles that should govern the practice of ‘living wills’ or ‘advance directives’ in the 47 States of the Council of Europe. The European Centre for Law and Justice (ECLJ) welcomed the adoption of the PACE resolution. “This Resolution is a major victory for the protection of life and dignity,” said ECLJ Director Grégor Puppinck. Puppinck noted that because ‘living wills’ or ‘advance directives’ are open to abuses, and are a ‘backdoor’ for introducing euthanasia or assisted suicide into legislation, PACE’s resolution was necessary.”

Two International Babies Born on the Same Day at VVCH: “Two babies born on the same day at Victor Valley Community Hospital will soon be traveling across the ocean with their European parents back to their homes. Two local women gave birth to the babies Thursday through a surrogacy organization, according to the hospital’s press release. The baby girl’s parents are from France and Switzerland, and they are headed to Switzerland. The baby boy will be going home to Germany with his parents and older brother. ‘It is such a pleasure to have brought joy to these two families, representing three different countries in Europe all in one day at our small community hospital,’ said Dr. Vijay Arora, who delivered the babies. Surrogacy is banned in many European nations including Germany, Switzerland and France. Couples who can’t conceive a child travel to countries such as the United States and India because of their leniency toward surrogacy, according to a report in Britain’s Daily Mail. The newspaper said many patients come to California due to the state’s favorable legal climate.”

Babies born via surrogacy

Why Prenatal Screening for Gender and Disabilities are not the Same: “When writing about reproductive ethics, I’m not in the business of telling people what to do. Occasionally, however, I offer my opinion on particular uses of reproductive technology. One practice that I find unacceptable is gender selection of embryos and fetuses for non-medical reasons. (A medical reason for gender selection would be if a family had a history of a serious sex-linked genetic disorder.) In the U.S. and Canada, prenatal gender selection is driven partly by immigrants from patriarchal cultures, where women are often under pressure to produce male heirs. In other cases, gender selection is driven by a mother’s desire for the daughter she has always dreamed of having; she envisions a uniquely close mother-daughter bond, buying pretty clothes, and sharing interests. In the Canadian Medical Association Journal, editor Rajendra Kale recently recommended that gender-identification ultrasounds be postponed until 30 weeks gestation to prevent parents from aborting a fetus of the unwanted gender.”

All IVF Couples Should Screen Eggs to Boost Chances of Baby: “Although the new test is expensive, it may save patients money and heart-ache in the long-run, by identifying which embryos are the healthiest and have the best chance of creating a pregnancy, they said. The test known as array CGH screens all the chromosomes from the eggs or the embryo so abnormal ones can be discarded. The biggest cause of miscarriage is abnormal chromosomes but currently the only way of examining the eggs and embryos is to look at them through a microscope. Results from 150 cycles has shown that the screening method can triple the chances of the embryo successfully implanting in the womb. The couples had all gone through many failed attempts at IVF and had suffered repeated miscarriages or failure of the embryo to implant in the womb.”

Egg screening

“Care of the Dying” debate – Assisted Suicide is like Murder, says MP Glenda Jackson: “GLENDA Jackson has voiced vehement opposition to legalising assisted suicide in a Parliamentary debate, comparing the act to ‘murder.’ The Labour MP for Hampstead and Kilburn opposed calls for changes to legislation in this country. She told the Commons: ‘There is something drastically wrong with a society that can contemplate legalising something that is, to my mind, murder.’ The former actress, speaking at the ‘Care of the Dying’ debate last Tuesday, revealed to the house the ‘greatest regret of her life’ was not being present at the death of either of her parents. She added: ‘One of the greatest privileges that can be afforded to a caring person – to us as human beings – is to be present at that moment when the last great adventure begins, when life slips away.’ Last week, Katherine Lennard told the New Journal about her plans to travel to Switzerland for an assisted suicide with Dignitas.”

Glenda Jackson

 The Man Behind the “New Public Face of American Assisted Suicide”: “In some ways it’s a rather strange headline: ‘After the death of Jack Kevorkian, Lawrence Egbert is the new public face of American assisted suicide.’ The Washington Post’s Manuel Roig-Franzia tells us that Egbert, formerly the medical director of the Final Exit Network, is not a publicity hound, like the eccentric Kevorkian who died last June. Moreover, Egbert is at odds with the current leadership of FEN, either because they are not as aggressive/reckless as Egbert, and/or are unnerved by the two deaths that led to trials against FEN, ‘a loosely knit group that claims 3,000 dues-paying members,’ according to Roig-Franzia. (The yet-to-take place second trial was spurred by the death of a man in Georgia, which culminated in Egbert and three other FEN leaders ‘all [being] arrested on charges of assisting in a suicide, tampering with evidence and racketeering.’)”

Lawrence Egbert

American Woman Causes a Flutter at Passport Office in Secunderabad: “An American woman causes a flutter by abandoning her two-month-old son, born via an Indian surrogate mother, at the Passport Office in Secunderabad here on Wednesday, protesting delay in issuing passport to him. J. Perllinda Vanburen Green, 40, however, took back her son after the police promised her to secure the travel documents at the earliest. The drama unfolded around 5 p.m. when the woman went up to the passport office. Later, she left the baby wrapped in clothes in the verandah and disappeared. After noticing the infant, the passport office authorities called in the Market Police. The police, after examining some documents left in a bag along with the baby, traced her to the nearby Rama Fertility Centre. The American married a Jamaican 15 years ago but could not conceive. She lives with her husband in Jamaica.”

J. Perllinda Vanburen Greenwith her baby

Vitrification: An Alternative to Egg Freezing?: “Vitrification is a promising approach to egg storage and can conserve them for fertilisation and development at a similar level to freshly collected eggs, says a new review published today in The Obstetrician & Gynaecologist (TOG). Egg cryopreservation, preserving eggs by cooling to sub-zero temperatures, includes freezing eggs which first took place in 1986. Since then, over 500 children worldwide have been conceived from frozen eggs. Vitrification is an alternative to egg freezing, first applied in humans in 1999. The process involves cooling cells to form an ice-free transparent glass. Since this process was first used, there have been well over 450 births reported. The review adds that vitrification can be simpler, more efficient and cheaper than conventional freezing under certain circumstances. It is quicker than freezing for a small group of eggs collected from a single donor, whereas freezing may be more efficient when eggs are to be stored for several women on the same day. Expensive cooling apparatus is not required but vitrification consumables are currently expensive and embryologists may have to devote more time to vitrification than freezing.”

New Form of In Vitro Fertilization Stirs Debate: “Under names such as low-intensity IVF, eco-IVF and even patient-friendly IVF — a technique of in vitro fertilization is increasing in use with promises to be safer, cheaper and easier on patients trying to have a baby. The technique involves mildly stimulating a woman’s ovaries with less drugs to produce far fewer eggs than routine IVF. After the eggs are fertilized in a laboratory, the resulting embryos are usually frozen and implanted in the uterus a few months later during a woman’s natural menstrual cycle. It may seem mathematically impossible, but St. Louis area doctor Dr. Sherman Silber says if done right, mild stimulation results in pregnancy rates equal to those with routine IVF. In older women, Silber finds dramatically better rates because the process is easier on their more brittle eggs.”

The Christian Family

Hot Topics: IVF Treatment Using Single Sperm Successful: “Everyone knows it takes just one sperm and one egg to make a baby, but nature usually provides extra, just to be sure. In the case of 9-month-old Kenley Schiraldi of Campbell, Ohio, however, there was no back-up for the biology, requiring instead what scientists – and her parents – call a modern-day miracle. Kenley was born last April, the result of a long-shot infertility treatment, a case Cleveland Clinic IVF experts say is the first time a single sperm has been frozen, injected into a single egg, and resulted in a healthy pregnancy. Nina Desai, director of the IVF laboratory at the Cleveland Clinic, hasn’t calculated the odds of Kenley’s conception, which occurred even though her father, Jason, produced no sperm in the regular way, and her mom had trouble producing eggs.”

Bioethical news articles for January 20th:

Today, Sex Selection, Tomorrow, Designer Baby Prospects: “The trouble with opening a can of worms is that it’s mighty difficult to seal the thing up again. And when it comes to prenatal sex selection, the can of worms was opened long ago, as ultrasounds have long been able to provide obstetricians and pregnant women with information regarding the gender of their babies. Despite that, Canadian Medical Association Journal interim editor Rajendra Kale is doing his level best to seal that particular can up again. In the current CMAJ’s editorial, Kale cites evidence that prenatal sex selection — that is, aborting female fetuses — is being practised by some South and East Asian immigrants in Canada. Calling such a practice ‘discrimination against women in its most extreme form,’ Kale asks how it can be stopped, and then answers his own question by advocating a ban on doctors providing a pregnant woman with information regarding the sex of her baby until about 30 weeks into the pregnancy — after which an abortion is highly unlikely.”

Gainsborough MP Voices Concerns Over Moves to Introduce Euthanasia: “Gainsborough MP Edward Leigh said he believed any moves to introduce euthanasia would result in an ‘encouraged exit.’ The Conservative MP rejected calls for assisted dying, or euthanasia, to be introduced for the sick and elderly during a debate on care for the dying. Mr Leigh said: ‘There is no doubt in my mind that, if we allow assisted dying, it will eventually become encouraged exit. One of the witnesses to the Falconer inquiry said: “I think we can only go for terminal illness at the moment, so this doesn’t actually apply to the people who are probably about to go into care homes. But, you know, baby steps.” That is a chilling statement.’”

Rich Family with 8 Babies Raises Cries of “Unfair!” in China: “In America, a family with eight children is the premise for a reality television show. In China, where most couples are allowed to have only one child, it’s a national scandal. The revelation last month that a Chinese couple were the proud parents of two sets of triplets and one set of twins launched a round of soul-searching about how the super-rich circumvent the one-child policy. It is a tangled case involving a wealthy couple, two surrogate mothers, a gaggle of nannies and, to top it off, a team of government bureaucrats scrambling to figure out how they all came together. ‘We are focusing on the case of the octuplets and trying our best to find the medical institutions responsible,’ a spokesman for the Guangzhou Health Office who gave his name as Sun said in a telephone interview. He said case poses ‘huge ethical problems.’ The babies have stirred up fiery emotions on Chinese Twitter-like microblogs and Internet forums. ‘In this society, if you have money, you can have miracles!’ one sardonic university student wrote on his Sina Weibo microblog. ‘Having children is now a luxurious game for the rich,’ wrote a user in Guangzhou, the southern city where the family lives. A southern Chinese newspaper broke the news that the couple had four girls and four boys with the help of the two surrogates and in-vitro fertilization.”

Weathly couples in China can circumvent nation's one-child policy.

Focus on Care, Not Assisted Suicide, Say MPs: “‘Rather than legislating for an abrupt end to life, we need to find better ways to help care for the dying,’ an MP has said as he led a debate on palliative care in Parliament.David Burrowes MP was joined in the Westminster Hall debate on Tuesday by around 20 MPs. Mr Burrowes quoted Dame Cicely Saunders, the founder of the modern hospice movement, who said: ‘You matter because you are you, and you matter to the last moment of your life. We will do all we can not only to help you die peacefully, but also to live until you die.’”

Lawrence Egbert, the New Face of Assisted Suicide in America: “The retired anesthesiologist from Baltimore has helped about 300 people commit suicide, but, he says, ‘I never get used to it.’ Lawrence Egbert, 84, estimates he has been present for 100 suicides in the past 15 years, which puts him in the same league with famed assisted-suicide maverick Jack Kevorkian. Egbert calls Kevorkian a ‘radical’ because the latter took an active role in some suicides. Egbert sees his own work as a calling and says he provides only guidance and support. But his zeal is tempered by self-doubt. ‘Once I am a true believer, that’s the time I should quit,’ he says one afternoon. ‘I never get used to it. I’m not used to it now.’ Egbert was acquitted in a case in Arizona, but another case looms in Georgia.”

Homeopath to Start Offering Assisted Suicide Remedy: “A homeopath in Banbury has decided to take politics into her own hands and start offering an assisted-suicide treatment. The service will be offered to those with terminal illnesses where traditional homeopathic treatments have not worked. The number of eligible people is thought to be high. The practitioner, who goes by the name Chi Wind-Chime, explained that the ‘remedy’ used has been through the emotional turmoil of death, which is then remembered, and injected into the patient. ‘We take our special ‘faucet hydrogen dioxide’ formula to a funeral, where it is surrounded by mourning people. This emotional experience of someone passing is remembered by the special solution. We take this back to my ‘living room laboratory’ where it is diluted with more of the original solution to create a remedy that is so weak its strength is lethal.’”

Homeopath to offer assisted suicide remedy

About That Egg Donation: “A reader of the New York Times’ Ethicist column asks if she needs to inform her fiancé about her egg donation…A difficult situation (especially if you have no one to turn to for advice other than the Times). I can’t help but think of what she must have been told at the time: post-operation and recovery the donation process should be worry-free. It’s just genetic material. You see the same cavalier attitude in the Times’ response above (though to his credit, the writer does go on to recommend that she tell her fiancé). Now instead of approaching the altar with a light heart, she struggles with the realization that somewhere there likely are young boys and girls who have her genetic material—who are her children—and who someday may want nothing more than to find out who she is. Tough stuff.”

IVF is Not a Treatment But a Provision of Commodity: “It was a conversation with a male friend that first unsettled my up until now very settled views on the use of reproductive technology for older women, personified by the story of Necia Wilden, a new mother at 50. (‘Women who go beyond conceivable doubt,’ Inquirer, January 14-15). My friend has, like me, grave reservations about the consequences of our unbalanced modern reproductive patterns, which have caused many young women by design or accident to delay motherhood. My friend understands as well as anyone the personal and social costs. But my friend’s view of a woman wanting a baby at 50 was alarmingly masculinist. He thought it was analogous to him wanting a Rolls-Royce. ‘I’ve always wanted a Roller … I don’t see why I can’t have one. Same thing with these women!’”

Twin Births Rise Brings Concern: “The number of twins born each year in New Hanover County has increased by more than 60 percent since 1989, on par with both statewide and national surges of multiple births in the last 20 years that experts attribute partly to the increasing use of fertility drugs in older women. Facts Doubling down 26: Pairs of twins born in New Hanover County in 1989. 43: Pairs of twins born in New Hanover County in 2009. Percent increase: 65. 1,147: Pairs of twins born in North Carolina in 1989. 2,223: Pairs of twins born in North Carolina in 2009. Percent increase: 94. More than 2,100 pairs of twins were born in North Carolina in 2009, up from 1,147 in 1989. Forty-three of those were in New Hanover County, up from 26 in 1989, according to data from the N.C. State Center for Health Statistics. Locally, that’s about a 65 percent increase, data that local doctors said matches what they’ve seen in practice. ‘I have seen more twins over the years,’ said William H. Cooper IV, who specializes in gynecology, infertility and reproductive endocrinology out of a private practice in Wilmington. ‘It is a concern. Every time you add another baby, you increase your risk of prematurity, low birth weight – every complication starts.’ Government researchers have said that population growth is responsible for about a third of the increase, with the remaining two thirds due to fertility drugs and women waiting longer to have children – both factors that increase a mother’s chances of having twins.”

Twin birth rise brings concern

UC Davis Investigators Achieve Important Step Toward Treating Huntington’s Disease: “A team of researchers at the UC Davis Institute for Regenerative Cures has developed a technique for using stem cells to deliver therapy that specifically targets the genetic abnormality found in Huntington’s disease, a hereditary brain disorder that causes progressive uncontrolled movements, dementia and death. The findings, now available online in the journal Molecular and Cellular Neuroscience, suggest a promising approach that might block the disease from advancing. ‘For the first time, we have been able to successfully deliver inhibitory RNA sequences from stem cells directly into neurons, significantly decreasing the synthesis of the abnormal huntingtin protein,’ said Jan A. Nolta, principal investigator of the study and director of the UC Davis stem cell program and the UC Davis Institute for Regenerative Cures. ‘Our team has made a breakthrough that gives families affected by this disease hope that genetic therapy may one day become a reality.’”

Adult Stem Cells Save a Man’s Life: “Thanks to adult stem cell research, a Baltimore cancer patient now has a new trachea — and a senior fellow for life sciences says the approach shows great promise for the future. The 30-year-old man was diagnosed with an inoperable tumor in his windpipe, according to Dr. David Prentice of the Family Research Council (FRC), and the patient was out of options. ‘They tried chemotherapy and radiation, but they just couldn’t get rid of this tumor,’ he reports. ‘They couldn’t take it out because they had nothing to put back in in terms of his windpipe, and it was slowly going to choke him to death.’”

Babies with 3 Parents Could be Born Soon, Scientists Say: “Babies with the genes of three parents could be born within three years, British scientists have announced. Neurologists at Newcastle University in northeastern England have been given a £4.4 million ($6.8 million) grant for the controversial IVF technique, which aims to replace small parts of a mother’s egg that may pass genetic defects onto children. Independent charity the Wellcome Trust announced the funding for the university’s mitochondria center on Thursday, the same day the UK’s Department of Health said that it would hold a public consultation to decide whether the technique should be legalized. The procedure involves transferring the DNA from a mother’s egg into another woman’s donor egg in order to replace the mother’s faulty mitochondria, which are described as the ‘batteries’ that power the cells in our bodies.”

Babies with three parents

“Miracle” Baby Born from Single Frozen Sperm: “Everyone knows it takes just one sperm and one egg to make a baby, but nature usually provides extra, just to be sure. In the case of 9-month-old Kenley Schiraldi of Campbell, Ohio, however, there was no back-up for the biology, requiring instead what scientists — and her parents — are calling a modern-day miracle. Kenley was born last April, the result of a long-shot infertility treatment, a case Cleveland Clinic IVF experts say is the first time a single sperm has been frozen, injected into a single egg — and resulted in a healthy pregnancy. ‘It was better than hitting the lottery,’ said Jennifer Schiraldi, 33, Kenley’s mom. ‘This never happens.’”

"Miracle" Baby

The Three-Parent Family: This is Another Attempt to Dehumanize Disabled People: “Babies with three biological parents could be born within three years. Scientists have come up with an IVF technique that uses the undamaged DNA of a third party when couples risk giving their children a genetic conditions such as muscular dystrophy or ataxia. The Wellcome Trust has funded the research (the figures vary from £4 million to £6 million) by scientists at Newcastle University. About 20 years ago a scientist in Hull helped my father and stepmother come up with ‘Lorenzo’s Oil’ to help fight the dread genetic disorder adrenoleukodystrophy (ALD) which threatened my half-brother’s life. ALD is carried by the mother and affects little boys under 8. It deprives them of almost all faculties – within months of being afflicted, Lorenzo lost his ability to walk, hear, see or even swallow. What Croda International managed to do was stop ALD in its tracks; and although it failed to reverse the effects on Lorenzo, it prolonged his life. It also confirmed my faith in scientific progress. Thanks to the men and women working in labs, we have not only ‘Lorenzo’s Oil,’ which if administered to pre-symptomatic ALD boys can keep them from developing the condition; but the weapons to fight cancer and polio and mumps. But there is a difference between chemotherapy or vaccines and the new technique that the Wellcome Trust hopes to make routine. The chemotherapy and vaccines are used to save lives – confirming that every one of them is special. The new technique instead aims to save only healthy lives; and keep unborn the rest.”

Lorenzo

Bioethical news articles for January 19th:

Seven in 10 S. Koreans Favor “Passive Euthanasia”: “Over 70 percent of South Koreans favor euthanasia for terminal patients when life-support is deemed meaningless, a survey showed Thursday. In the survey conducted by the Ministry of Health and Welfare, 72.3 percent of 1,000 respondents said they are in favor of removing life-support devices when there is little or no hope of recovery for a patient. Nearly 70 percent of those in favor cited emotional pain to other family members as their main reason for supporting what is known as ‘passive euthanasia,’ while 60.2 percent said economic burdens were a major factor.”

Surrogacy Bill to be Prepared for Icelandic Parliament: “The Icelandic parliament has voted to begin the process of making surrogate mothers legal. Alþingi yesterday passed a resolution calling on the Minister for Welfare to assemble a working group to prepare a parliamentary bill to allow surrogacy for benevolent purposes, i.e. not as a form of business. The parliamentary resolution was sponsored by Independence Party MP Ragnheiður Elín Árnadóttir; who told parliament the bill must be written firstly to satisfy the best interests and rights of the unborn children involved, secondly to serve the best interests, independence, rights and welfare of the prospective surrogate mothers and their families, and thirdly to serve the best interests of the prospective families the children would go to.”

Surrogacy in Iceland

Trent Arsenault, Prolific Sperm Donor, is a 36-Year-Old Virgin Pleasing Women Everywhere: “As if the story about Trent Arsenault — the Bay Area’s unstoppable Sperminator — couldn’t get more bizarre. To gasps, laughter, and applause from the studio audience on Anderson Cooper’s talk show, Arsenault, who has donated his seed for 14 children through his website TrentDonor, revealed that he is really a virgin. ‘I’ll probably be the 40-year-old virgin, except I’ll have 15-plus kids,’ he told Cooper. So the only thing Arsenault is making love to is a petri dish. This bit comes as a surprise not only because Arsenault is 36 years old, but because of his recorded sexual activity — featuring himself ejaculating in several NSFW online videos, which he claims are not porn, but documenting being a ‘donorsexual,’ the term he’s coined for someone who expresses their sexuality through sperm donation. SF Weekly called him to get a few more details on his sex life, or lack thereof. Arsenault said that the videos are how he expresses his sexuality. ‘So much of my sexuality is suppressed as a donorsexual since I’m not having intercourse, so those videos are how I’ve coped with my sex drive.’”

Trent Arsenault

Assisted Dying Status Quo Defended by Hertfordshire Age UK Chief: “THE chief executive of a Hertfordshire charity supporting the elderly has defended current legal guidelines for helping seriously ill people to commit suicide. Chief executive of Herts Age UK Marion Birch Currently assisted suicide is illegal, but prosecutions are rare under legal guidelines published in 2009. However, the system has come under fire following a report on the issue by a commission chaired by former justice minister Lord Falconer, calling it ‘inadequate’ and ‘incoherent.’ Marion Birch, chief executive of Hertfordshire Age UK, said the issue was particularly difficult in the case of elderly people. She told the Mercury: ‘There can be a lot of pressure for older people with terminal diseases to think they are causing a burden to society or their family. They may feel they have got to say “perhaps I need to go on my way now.” We have to be really careful and put safeguards in place.’”

Government to Seek Public Views on Changing the Law to find Cures for Inherited Diseases: “The public will be asked if they think the law should be changed to allow science to move a step forward so a cure could be found for potentially fatal inherited diseases, the Government has announced today. The Human Fertilisation and Embryology Authority (HFEA) has been asked to lead a public discussion to ask if a new scientific procedure, which could prevent women with mitochondrial disease from passing the illness to their children, should be introduced. This will be launched later this year. Mitochondrial disease is a genetic condition that affects an individual’s mitochondria – the part of the body’s cells that produces the energy they need to function. The disease affects everyone differently, but symptoms include poor growth, loss of muscle coordination, visual and hearing problems, mental disorders, heart disease and liver disease. The condition affects approximately one in 5,000 adults. One in 6,500 babies are born with a severe form of the disease that can lead to death in early infancy. There is no cure. It is estimated that around 12,000 people live with a mitochondrial disease in the UK and scientists estimate that the treatment could save the lives of around ten children affected by severe forms of the disease a year. A proposed procedure would use IVF to fertilise the egg of a woman affected by mitochondrial disease with her partner’s sperm. The genetic material of the fertilised egg that determines the characteristics of the potential child would then be transferred to the shell of an egg donated by a woman who has healthy mitochondria. This procedure would not be allowed under the current law.”

Stem Cells Offer Hope to Victims: “A young Illinois man shattered his spine in a motocross bicycle crash. He seemed doomed to life in a wheelchair. But research doctors at Chicago’s Northwestern Memorial Hospital injected him with embryonic stem cells in hope of growing healthy, new, replacement spinal cord tissue. He began showing improvement. However, as the Chicago Tribune reported, the victim — and others sharing his plight — sank into limbo when Geron Corp. abruptly halted the stem cell research project. The pharmaceutical firm apparently decided it can earn bigger profits from cancer drugs, and also can avoid controversy associated with embryonic stem cells. This is tragic for the patients whose hope for cures were undercut. It’s also a setback for medical science, because stem cells offer bright opportunity to defeat several horrible ailments.”

Women Egg Donors Needed for Pioneering Work: “North East women are being asked to consider donating their eggs for research in order to push forward a pioneering technique which could eliminate serious inherited disorders. Despite about 100 women already coming forward to support the research, Newcastle fertility experts need more eggs to progress the work into becoming an accepted treatment. Mitochondrial diseases are passed on by the mother and the new technique, which has been developed at Newcastle University, would reduce the risk of transmission of these disorders. This would allow the mother to give birth to a healthy child and eliminate mitochondrial diseases from the family line. The call follows two announcements which will have major implications for the Newcastle work; firstly, that the Wellcome Trust has given £4.4 million to Newcastle University to help develop the technique so that it is ready to be used in patients, and secondly, that the Government are to hold a public consultation into changing the law so that families could benefit from the new treatment. But, the work could be held back if they don’t have enough eggs for the research.”

“Three-Person IVF” Technique Moves Closer: “Public opinion will help decide the future of a controversial genetic technique to stop serious conditions being passed from mother to child. It replaces defective genetic material in the egg in order to eliminate rare mitochondrial diseases. After the consultation into ‘three-person IVF,’ ministers will decide whether to allow it in patients. A £5.8m centre at Newcastle University, funded by the Wellcome Trust, will investigate the technique’s safety. Inherited defects Mitochondria can be found within almost every human cell, and provide the energy they need to function. Like the nucleus of the cell, they contain DNA, although in tiny quantities. Approximately 1 in 5,000 babies is born with inherited defects in their mitochondrial DNA, the effects of which can be very severe, or even fatal, depending on which cells are affected. Continue reading the main story ‘Start Quote Every year we see hundreds of patients whose lives are seriously affected by mitochondrial disease.’ Prof Doug Turnbull, Newcastle University Scientists believe they have found a way to substitute the defective mitochondria and hopefully prevent the child from developing a disease. They take two eggs, one from the mother and another from a donor. The nucleus of the donor egg is removed, leaving the rest of the egg contents, including the mitochondria, and is replaced with the nucleus from the mother’s egg. The resulting embryo has properly functioning mitochondria from the donor, and should, in theory, be healthy.”

“One Embryo Cuts Chances of IVF Success”: “Childless women have a better chance of success with IVF if they ignore official guidelines and use two embryos rather than one, researchers say. The study challenges the view of IVF watchdog the Human Fertilisation and Embryology Authority, which says no more than one embryo should be implanted because of the risk of multiple births. Such births, it says, are more likely to be premature and lead to disability. But the latest research, by British scientists, found that data from more than 33,000 IVF births showed two embryos maximised the chances of having an IVF baby. Using three embryos however is no better than two, and the study found it was linked with an increased risk of birth complications.”

IVF

Bioethical news articles for January 18th:

Girl Pleading for Euthanasia Dies: “A slum girl, who came into limelight following her euthanasia plea in Kanpur, lost her battle against blood cancer. Alka Tiwari had appealed to a Kanpur court to either direct the government to bear her medical expenses or allow euthanasia. She breathed her last at Christian Medical College (CMC) in Vellore Monday. The 21-year-old girl had been suffering from aplastic anaemia blood cancer since 2002. ‘She had undergone a successful bone marrow transplant on December 15 and was expected to be discharged from the hospital in the last week of January,’ said Brijesh Tiwari, her brother. He said that around a week ago, water entered her respiratory system and there was an infection in her brain.”

Surrogacy: Nice Work if You can get it: “More from the booming surrogate mother industry. A Philadelphia company is raising eyebrows by describing gestational surrogacy as a paying job. An email from Surrogate Services International says that ‘In this economy and particularly around the holiday season one would think a local business would not have any trouble filling job openings.’ It is offering ‘well paid, part-time positions’ as egg donors and surrogate mothers. The company’s website explains: ‘We understand that for many women assisting parents achieve their dream of parenthood is payment enough, however since we know this is a real job with immense responsibilities we believe the gestational carrier should be paid accordingly as such.’ The ‘wages’ [sic] range from US$20,000 to $35,000.”

Sperm Donor Who Fathered 14 Kids Reveals He’s a 36-Year-Old Virgin: “Trent Arsenault made national news when the U.S. Food and Drug Administration came after him last month for providing his sperm to childless couples for free through his site TrentDonor.org. The FDA ‘told him to stop giving away his sperm — or face a $100,000 fine or up to a year in prison — on the grounds that he’s ignoring federal regulations that require blood tests every time a person donates any kind of body tissue or fluid,’ according to The San Francisco Chronicle. Until the case is settled, he’s permitted to continue giving away his sperm. But that’s all old news. Today, the computer engineer who lives in Fremont, Calif., appeared on the Anderson Cooper talk show and revealed more of his provocative story: He’s a 36-year-old virgin. Turns out Arsenault has a sexual drive that makes him desire something different from actual sex. ‘I coined this term “donor sexual” and I’ll explain it means 100 percent of my sexual energy is for producing sperm for childless couples to have babies,’ Arsenault said. ‘So I don’t have other activity outside of that.’ ‘So you do not have sex?’ Mr. Cooper asked. ‘I will probably be the 40-year-old virgin,’ Arsenault explained. ‘Except I’ll have 15 plus kids.’”

Trent Arsenault

Searching for Siblings: “Alanna Kelly knew she wasn’t an only child, but never thought she would ever find her siblings. The 18-year-old was told when she was 12 that she was conceived through a sperm donor. In 2010 she decided to enter an ID number she found through a Toronto sperm bank into donorsiblingregistry.com to see if she could find a match. Within months, Kelly was talking to her brother Zach, a 15-year-old from Vermont. The two began exchanging Facebook messages to get to know each other better.”

Alanna Kelly and mother

Wolverhampton to Stage Play of Woman’s Assisted Suicide at Dignitas: “The ex-husband of a woman who travelled to Switzerland to die is to perform his play about assisted suicide in the Midlands. Chris Larner, who went to the Dignitas Clinic with 60-year-old Allyson Lee in November 2010, will be performing An Instinct For Kindness in Wolverhampton this month. The show tells the story of Ms Lee, who was diagnosed with Multiple Sclerosis (MS) in 1985 after she had given birth to their son. ‘In the last ten years her MS progressed, leaving her housebound, doubly incontinent, distressed by constant muscle spasms and reliant on carers and with no hope of her health improving,’ said Mr Larner, from London. ‘Allyson was very clear that it was her right to do what she wanted with her life. Besides the fear of eventually losing her sight, speech and ability to swallow, she was devastated about being unable to walk and her loss of independence.’”

“Choice” as a Weapon for Aborting Babies Based on Sex: “In 1994, I had three papers accepted for the Canadian Bioethics Society’s conference in Ottawa, which I duly attended. One of the papers addressed some ethical concerns raised by the practice of abortion on the basis of sex selection. The Royal Commission on Reproductive Technologies had just issued its report, and Dr. Patricia Baird, a geneticist on the commission, was the moderator of the session in which I delivered that particular paper. Not too many people showed much interest, except for one woman who announced during the question period that I had made her ‘very angry.”’The reason? I think it was because I was clearly against the ethics of ‘choice,’ specifically where aborting babies is concerned. That means I am against the abortion of all babies, although the situation I was describing was one in which mainly female babies are aborted. I could not understand then, and do not understand now, how one can hold “choice” as an ethical position, but attempt to limit it in this particular circumstance. It is appalling that women can even think of aborting their own child simply on account of its gender. Logically, though, for those who espouse ‘choice,’ why is this situation different? I am fairly sure that is what made the woman listening to my paper unhappy. She never did explain exactly what part of my argument made her angry. I believe it was because she would be hard pressed to do so logically, and fell back on an emotional response.”

Embryonic Stem Cell Research Challenged, Again: “James L. Sherley has filed the first brief of his formal appeal in his battle to stop government funding of human embryonic stem cell research. Sherley is the adult stem cell researcher who left MIT under a cloud in 2006. He was denied tenure in the Department of Biological Engineering in 2004, and then alleged the denial was racially motivated. After repeated appeals of his tenure decision, he staged a hunger strike in the spring term of 2006 and subsequently left the Institute. He is now a researcher at the Boston Biomedical Research Institute in Watertown, Mass. Sherley has been battling the National Institutes of Health in federal courts in Washington D.C. over the legality of their funding since August 2009. The core issue is that federal law prohibits government funding of “research in which a human embryo or embryos are destroyed,” which is known as the Dickey-Wicker amendment. Does use of existing human embryonic stem cell (hESC) lines constitute research where embryos are destroyed, or is the prior destruction of embryos separate research?”

Postponing Kids Carries Dangers, Obstetricians Warn: “Men also need to be aware of the ‘reproductive consequences’ of postponing parenthood, new national guidelines on the risks of delayed child-bearing warn. Women’s ‘fecundity and fertility’ starts to decline precipitously after 32, but a man’s semen quality and fertility also worsens with age, according to guidelines endorsed by the Society of Obstetricians and Gynecologists of Canada. In addition, babies born to fathers of ‘advanced paternal age’ – defined as 40 and older at the time of conception – are at increased risk of genetic disorders, as well as schizophrenia, autism and some forms of cancer, according to the authors. The new guideline to doctors comes amid growing concerns about the number of women delaying childbearing. In Canada, 11 per cent of first births occur in women 35 and older, up from five per cent in 1987. If the trend holds, society can expect to spend more on intensive care, special-care nurseries and community services for children with developmental, hearing, speech or language problems who are born to older parents, the authors say.”