Women are putting their lives in danger by purchasing illegal IVF drugs from the online auction site EBay. Drugs can be bought off the website for a third of the normal market price, and many desperate women are turning to it as a last resort.
The fertility drugs include brand names Suprecur, Cetrotide and Menopur. They are hormone treatments used to stimulate the ovary to produce more eggs to increase fertility and as part of IVF procedures.
One British woman, 26-year-old Lorraine Davy, almost died after taking the ovulation stimulation drug Clomid. “I got rushed into A&E and they did an ultrasound and the doctor said I had a massive cyst on my ovaries”.
The British Medicines and Healthcare Products Regulatory Agency (MHRA) has contacted EBay to have the drugs removed from auction.
The United Kingdom is debating the merits of “three-parent embryos” to alleviate the burden of serious mitochondrial diseases. Scientists have reassured the public that this procedure will produce healthy children.
These assertions are largely speculative. However, something similar has happened before. About 30 children conceived from this technique have been born, 17 of them from an American IVF clinic between 1996 and 2002, when US government authorities put a stop to it. At the time the Saint Barnabas Medical Center, in New Jersey, called it “cytoplasmic transfer” and billed it as a way of jump-starting tired eggs. Twelve years after the US Food and Drug Administration recommended a retrospective study to see how these children have fared, the clinic is finally doing one.
Thirteen-year-old Alana Saarinen (pictured above with her parents) is one of those children. A godsend to her mother, who had a history of infertility, she is healthy, normal and cheerful. But her parents were never contacted about her progress. “I wish someone would, so they could see how healthy Alana is,” her mother told the London Telegraph.
The data will be of great relevance to the debate in the UK, although it will probably not be available before Parliament votes.
Jacques Cohen, the scientist who carried out the cytoplasmic transfer on the 17 IVF babies told the UK newspaper The Independent that no follow-up on the children had ever been done, despite the highly experimental and risky nature of the technique. “The current follow-up study is ongoing and results will be made available in a medical journal,” Dr Cohen said, although he is no longer working at St Barnabas.
Cytoplasmic transfer does differ from mitochondrial transfer. In the former, the mitochondria from both eggs are mixed together. In the latter, only the donor egg’s mitochondria are used. What little is known about cytoplasmic transfer is not promising. A report from the Food and Drug Administration in 2002 pointed out that there had been two instances of Turner Syndrome (one miscarried and one aborted) amongst 30 pregnancies. A paper by Cohen published in 2001 noted that an 18-month-old child had been diagnosed with a “pervasive developmental disorder”.
He points out that despite strong support from UK scientists and bioethicists and generally favourable treatment in the media, no other country in the world has authorised modification of the human genome. “Do we really want to become a rogue state in terms of bioethics?” he asks.
He also argues that the procedure “cures” no one. It simply prevents the birth of handicapped children. But this comes at the cost of destroying a human embryo for its “useful parts”. “There is no way that that can be considered ethical,” he says.
“… we are dealing with entirely separate issues when we talk about genetically modified food and what we are dealing with now, which is genetically modified people. We have only in the past 100 years come to terms with the debilitating, restrictive and oppressive results of centuries of racism buttressed by pseudo-scientific notions that have since been proved entirely false. How much more of a problem will we be confronted with when humanity is divided between the modified and the unmodified?
“… The mitochondria that contain DNA interact with the nucleus and many scientists therefore believe that they contribute material to the identity of an individual. Bioethicists have up until this point expressed almost universal consensus on germ-line genetic modification of our fellow humans, rejecting it as grievously immoral and completely unethical.
“The consensus is worth pointing out as we must know what the proponents of mitochondrial transfer are asking us to dissent from. They are asking us to dissent from opinion in every other country in the world. In this age of globalisation, we will be divorcing ourselves from the entire community of nations in terms of bioethics. Do we really want to become a rogue state in terms of bioethics?
“No one can deny the debilitations and hardships that these diseases cause. No one is seeking to downplay that suffering, but this is not about a cure. This will neither heal nor cure a single human being suffering from these diseases.
“What is worse, when we talk about pronuclear transfer, is that that effectively requires the creation of human beings for the sole purpose of harvesting their useful parts. Is that really the sort of society in which we wish to live, in which persons—individuals—are created, their parts harvested and then destroyed, merely to provide for other human beings? There is no way that that can be considered ethical, whether in terms of purely rational deductive natural law, or by the system of Christian ethics on which we in this country have traditionally relied.”
Naturally, this controversial issue had strong defenders as well. Chi Onwurah, MP for Newcastle upon Tyne Central, presented the views of scientists at the University of Newcastle, who are passionate promoters of the technique. In her view, mitochondrial DNA represents only a tiny sliver of our genetic endowment, so small that it is not worth worrying about. She also used a slippery slope argument: if gestational surrogacy, which involves three parents, is already legal, how could the government possibly object to mitochondrial transfer?
"The embryo would carry just 13 out of 23,000, or 0.056%, of the genetic material from the mitochondrial donor. As the right hon. Member for Havant (Mr Willetts) said, it is not the nuclear DNA, so the child’s appearance, personality and other features are not affected. In Britain, the egg donation and surrogacy principle, whereby more than two parents can contribute biologically to the birth of a child, is already recognised. Medical procedures that introduce a donor’s biological material are also long accepted. The headlines, such as the BBC’s recent “Mum plus dad plus mum”, are not only sloppy and sensational, but unscientific. I would like the BBC’s other programme, “More or Less”, to comment on whether giving 0.056% of genetic material and 0% of nuclear DNA really constitutes being called “mum”.
"The UK is carrying out pioneering research on mitochondrial diseases. This country has the opportunity to be at the leading edge of the world in preventing such terrible diseases. It has taken us years to get to this point. Never before has a technique had such rigorous investigation, and ethical and scientific analysis. It is therefore incredibly important that progress does not stall."
This month’s issue of LGBT Health contains a fascinating interview with two Boston fertility specialists who cater for gays and lesbians who want to become parents. Dr Samuel Pang, one of the first doctors to help gays have biological children through gestational surrogacy, says that his passion “is to get the word out to the LGBT communities that there are options available if people want to have genetically related children”.
Perhaps the most controversial aspect of their work is provisions for the fertility of boys and girls who are transitioning to the opposite sex. “For children and young adolescents, it is often the parents who are thinking about future reproductive capacity, because they would like the possibility of grandchildren, and because they are looking after the future interests of their children,” says Dr Anderson Clark, a reproductive biologist.
The problem is that puberty-suppressing treatment also impairs the children’s reproductive capacity. “Some trans boys (ie, girls) receive puberty-suppressing treatment and never produce mature ovarian follicles that could be stimulated for harvest and cryopreservation of eggs,” says Dr Clark. And the problem is accentuated with trans girls (ie, boys) because their spermatozoa are still developing. However, it has been done on individuals as young as 11. “The quantity of sperm collected from someone this young would likely be low and, for some individuals, may not be mature enough to fertilize an egg. But those sperm might be used with intracytoplasmic sperm injection (ICSI), a well-developed fertility treatment, once the individual is ready to have children,” says Dr Clark.
And the interviewer, Dr Evan Eyler, of the University of Vermont, remarks on the progress which has been made in the past 20 years:
“It was not all that long ago that lesbian couples with no infertility problems, simply needing donated sperm, were denied services on moral or religious grounds. At this point, lesbians without infertility problems are getting pregnant with donated sperm, and the type of work that you are describing is opening up additional options: Having one partner be the egg donor and the other partner carry the pregnancy, so that both have a biological relationship to the child, or maximizing fertility for lesbian and bisexual women who have infertility problems.
“Efforts focused on finding options for male couples to have their own biological children have also had some reasonable success. At this point, some couples with a transgender partner are getting fertility services, and transgender youth who are not yet at the point of considering reproduction are beginning to have options for fertility preservation. Most of the trans children and trans teens are not thinking about fertility preservation because of their youth, so it is the parents who are inquiring about these services in many cases, and you are discussing options with them.
“I am impressed by how far this field has come in just a couple of decades, both technically and politically.”
However, there are still ethical issues. The weightiest is the doctor’s responsibility for the fertility of young trans patients. “We cannot count on the transgender children and teens to think about it, because, when they are going through the crisis of gender identity, the last thing on their minds is having children in the future. They have much more pressing issues to deal with,” says Dr Pang.
Commercialisation of IVF is crossing new frontiers in New York with “egg freezing parties” for career women who want to keep their options open. A company called EggBanxx will retrieve and store eggs – for about US$7,000 to $8000 per cycle. The first year of freezing is free. Here’s the pitch:
“EggBanxx is the affordable egg freezing solution created by women for women. We believe egg freezing should be easy, affordable and stress-free! Through EggBanxx, women can preserve their fertility by freezing their eggs for later use at a fraction of the cost and at a reputable clinic. This elective procedure is becoming increasingly popular today with women who are holding off having children while furthering their education or career, or waiting to meet the right partner.”
To promote its product, EggBanxx is organising “Let’s Chill” (what else could it be called?) parties in New York to discover how it works and how much it costs. The first one took place at the NoMad Hotel in Manhattan on August 12.
“I don’t have a significant other . . . but I hope to one day and have kids,” one woman told the New York Post. “I want to take my fertility into my own hands, rather than put pressure on the person I have my next relationship with. I don’t want to be in the position when I’m in my late 30s and panicking because I haven’t found the right man and I’d compromise and take anyone off the street!”
Or as EggBanxx’s marketing director described her own egg-freezing experience, “The pressure is off, and I feel so empowered. I can now concentrate on my career and becoming who I want to be before having children!”
So how does EggBanxx make its money? It acts as a broker for egg retrieval by its network of IVF clinics around the US and for low-cost finance. It also offers a 15% discount on what IVF clinics charge for the procedures and medications.
All over the world, fertility experts warn women that their fertility is finite, that after 35 it drops sharply and that it is best to have children early. But freezing cannot guarantee a baby, especially since most women who freeze their eggs have entered an era of declining fertility. According to a survey by the American Society for Reproductive Medicine, the average age at which women freeze eggs is 34 – already late.
Lord Robert Winston, a British IVF pioneer, argues that egg freezing is “a confidence trick” that allows avaracious IVF clinics to exploit the fears of desperate women. “Women are spending vast amount of money on this treatment but the success rates simply aren’t there. In fact less than 10% of the women who do it end up getting pregnant,” he says.
A memorial to the 300,000 victims of Nazi euthanasia programs was opened in Berlin this week. It is striking piece of modern architecture: a 30-metre-long wall of blue glass in the open air near the Berlin Philharmonic.
“The Nazi murders of disabled people are among the most inhumane acts of history,” says Berlin’s mayor, Klaus Wowereit. “It is high time that these victims of Nazi inhumanity finally receive their own memorial.”
The regime had several methods of killing the mentally and physically disabled: starvation, lethal injections or chambers filled with carbon monoxide gas. The so-called T4 program became a trial run for the gas chambers of Auschwitz and other death camps. About 70,000 of the deaths occurred at the program’s headquarters at Tiergartenstrasse 4 in Berlin, thus giving the program its name, Aktion T4.
“We must denounce the inhumane distinction between a worthy and an unworthy life,” said Monika Gruetters, Germany's state minister for culture and media. “Every human life is valuable - that's the message of this memorial.”
There are calls for a change in birth certificate regulations after a woman conceived by sperm donation had her adopted father erased as parent.
Emma Cresswell, 26, has won a six-year legal battle to have the man who she thought was her father removed from her birth certificate. Cresswell only discovered as an adult that she was conceived by a sperm donation, following a heated argument with her adopted father. Incensed at being deceived by her parents and feeling increasingly distant from her mother’s partner, Cresswell fought to have her adopted father’s details taken off her legal documents.
“I had thought I was one person for so long and then I found out that a whole side of that wasn’t true”, She said.
Cresswell is now campaigning for biological parentage to be stated in addition to legal parentage on a child’s birth certificate. Dr. Marilyn Crawshaw of the University of York agrees:
“The birth certificate gives you nothing to go on. I know of people who believed they were at risk of genetically transmittable diseases because they thought the parents named on their birth certificate were their biological parents.”
Scientists from MIT say they have managed to manipulate ‘good’ and ‘bad’ memories in mice, in a study that may have significant impact on research into human memory alteration.
The study, published in a recent edition of Nature, examined the neuronal circuits thought to be responsible for triggering memory recall in mice. The researchers said they successfully used optogenics technology to activate circuits bearing specific memories.
Researchers created good memories in male mice by giving them time with groups of females, whilst bad memories were created by electrocuting the mice’ feet. The researchers then studied the way the mice reacted when the memories were activated in an empty space. When ‘bad memory’ circuits were activated, the mice ran away from the space, whilst when ‘good memory’ circuits were queued the mice stayed.
The results are said to indicate the existence of a precise physiological substrate for individual memories. This may mean that one day scientists will be able to ‘turn off’ particular distressing memories in patients suffering from conditions such as Post-Traumatic Stress Disorder.
“Imagine you can go in and find a particular traumatic memory and turn it off or change it somehow,” said David Moorman, an assistant professor of psychological and brain sciences at the University of Massachusetts Amherst. “That’s still science fiction, but with this we’re getting a lot closer to it.”
Ashya, who recently had a severe brain tumour removed, has been at the centre of an international police investigation after his parents took him from a British hospital against doctors’ advice. Brett and Naghemeh King were concerned that he was receiving inadequate care in the UK and wanted him to receive proton beam treatment abroad. Mr. and Mrs. King were imprisoned in Madrid for 72 hours after British police issued a European Arrest Warrant. Charges of ‘child cruelty’ were dropped on Tuesday.
A Chilean priest is being investigated for coercing single women into give up their babies for adoption.
Fr. Gerardo Joannon of the Congregation of the Sacred Hearts of Jesus and Mary (SSCC) was allegedly part of a network of priests and doctors that coerced single pregnant woman to agree to adoption arrangements after birth. It is alleged that the women who resisted had their babies taken after birth and were told they had died. An investigation conducted by the Catholic Church found that Fr. Joannon participated in at least two adoptions where mothers were anesthetised and told after labour that their baby had passed away.
The SSCC began the initial investigation into the matter. A spokesman for the group has condemned Joannon’s actions. “[his actions] were totally unacceptable. It was very important for us to speak out and speak with a strong voice”, said SSCC priest Fr. Sandro Mancilla.