After five years the American Society for Reproductive Medicine has updated its guidelines for gamete donation in the light of the growing recognition that offspring may have a right to know their genetic parents.
The thread running through all sections of the lengthy “opinion” is uncertainty. Until now almost all gamete donation was anonymous. However, offspring who want to find their parents and donors who want to become involved in the lives of their children are becoming more and more common.
In some countries, such as the United Kingdom, children can access donor information once they turn 18. This is not the case in the US, but laws could change. “Programs should make it clear to donors that they cannot give guarantees regarding immunity from future contact by offspring,” the ASRM says. Perhaps as a consequence, it offers no firm recommendations which are binding on its members.
“Donors and programs must recognize that they have a unique and ongoing moral relationship with each other, as well as with the recipients and their children, and this obligation does not end with the procurement of gametes. Evolving medical technology, laws, and social standards will require reevaluation of these relationships throughout the lifetime of the parties involved.”
One of the puzzling features of the history of bioethics – which is now nearly 50 years old – is that its “founders” were nearly all Christians, but Christian bioethics has become a marginal interest, at least in the US. How did this happen?
The conventional account is that initially Christian bioethicists like Joseph Fletcher and Paul Ramsey (both Protestants) or Richard McCormick (a Catholic) were quite influential in shaping bioethics debates in the 1960s, serving on national committees and helping to draft government reports. However, as society became more secular, they were shouldered aside and their contributions were ignored.
In a provocative article in the journal Christian Bioethics, Tristram Engelhardt, Jr offers a very different interpretation. Engelhardt is a heavyweight in American bioethics – one of the few Christians with clout. He originally delivered this article on the occasion of receiving a Lifetime Achievement Award from the American Society for Bioethics and Humanities.
Engelhardt, a convert to Eastern Orthodoxy, attributes the marginalisation of “Christian bioethics” to the treason of Christian bioethicists. They capitulated to pressure from an increasingly non-religious environment and betrayed their Christian heritage.
“The result was that a view of Christian morality developed that eschewed a defining Christian content for Christian morality and Christian bioethics. Scholars rejected the position that there could be moral content in a Christian bioethics not accessible to a secular bioethics. This meant that there could not be a distinctly Christian bioethics.”
What about powerful messages from the Catholic world, particularly the recent Popes? Engelhardt claims that they too abandoned a distinctively Christian outlook and relied far too much on philosophy:
“Neither John Paul II nor Benedict XVI adequately appreciated that what had occurred was, at least in part, a function of post-Vatican II Roman Catholicism’s attempt to speak and think in a secular or philosophical idiom open to all. Among other things, this focus on philosophy raised the question as to why one should pay attention to the philosophical arguments of theologians, who wrote as want-to-be moral philosophers, when the same philosophical arguments were often (usually) made more clear and better by philosophers.”
Engelhardt insists that “Christian bioethics is radically different from secular bioethics”.
However, in the same issue of the journal a Catholic bioethicist, Daniel P. Sulmasy, rebuts Engelhardt’s bleak view. In his opinion Engelhardt is reviving an older debate between Protestants and Catholics about the relationship between grace and reason, or between faith and natural law. Protestants tend to be suspicious of reason as a means for reaching the truth while Catholics see faith and reason as the two wings of truth.
“A more reasonable reading of the history of bioethics is that proponents of natural law like McCormick and Ramsey were eventually rejected by a progressively secularizing bioethics that came to view the method they employed, natural law, as inherently religious (specifically, Christian) and therefore suspect in an officially secular bioethics … Although their method did not appeal to explicitly religious sources of argument, their conclusions were always compatible with their religious commitments, so their views (and those of Christian bioethicists who followed them) were dismissed as inherently religious and therefore, to a secular world, suspect.”
An elderly Belgian man and wife are preparing to be euthanized together. François, 89, and Anne, 86, from Brussels, fear being lonely if one of them dies first. They are not terminally ill although Francis has been treated for prostate cancer for 20 years and needs morphine to cope with his pain and Anne is partially blind and almost totally deaf.
“We want to go together because we both fear of the future,” Francis told a Moustique, a Belgian newspaper in an extended interview. “It's as simple as this: we are afraid of what lies ahead. Fear of being alone and above all, fear of the consequences of loneliness.”
The couple had made plans to commit suicide together by placing plastic bags over their heads. But their children opposed this, saying that there must be a more elegant solution.
The couple’s three adult children support their parents’ decision and their 55-year-old son John Paul even arranged it for them. They found it difficult to organise a joint euthanasia in the French-speaking part of Belgium. The couple’s own doctor refused to grant his request on their behalf, saying, “I have taken the Hippocratic oath; I give life, not death."
But when they contacted a right-to-die organisation in Flanders, the Dutch-speaking part of Belgium, they received an altogether different reception. “A friendly voice, warm, told me they could help us,” John Paul said. "’Yes, what you ask might be possible. Yes, this is a normal question. And yes, they could go together’. Later, I read somewhere the numbers: 82% of euthanasia cases in Belgium are in Flanders, 18% in Wallonia. This is revealing.”
“Fortunately, we have our son,” said François. “Without him, we would have left life as we had intended to start: with a plastic bag.”
“It takes courage to jump from the 20th floor and I am unable even if I wanted to do it,” said François. “It takes courage to hang, it takes courage to jump into the canal. But a doctor who makes you a shot and lets you gently fall asleep? It does not take courage.”
“If one of them should die, who would remain would be so sad and totally dependent on us,” said John Paul. “It would be impossible for us to come here every day, take care of our father or our mother.”
A man serving a life sentence for rape and murder has been allowed by a Belgian court to undergo euthanasia. Claiming that he is unable to control his violent sexual urges, Frank Van Den Bleeken, who is 50, wants to die. He says that he is suffering “unbearable psychological anguish”. "He has clearly said that he didn't want to leave prison because he didn't want to risk creating further victims," his lawyer told AP.
Van Den Bleeken has been battling for permission in the courts for three years. This decision will make him the first prisoner to be euthanased since it became legal in 2002. He will be transferred to a hospital where the medical procedure will take place. The exact date is yet to be determined. Since applying for euthanasia prison authorities have placed him on suicide watch.
Van Den Bleeken’s case has raised a number of issues.
Is he terminally ill? Clearly not. However, he does claim to be suffering unbearable anguish, which is grounds for euthanasia in Belgium.
Can he be cured? We don’t know because the Belgian government has effectively refused to treat him. Belgium has been repeatedly condemned by the European Court of Human Rights because it cannot offer high-risk sex offenders humane care.
He had requested a transfer to a specialised psychiatric centre in neighbouring Netherlands but Belgian authorities denied the transfer request earlier this year. After that Van Den Bleeken requested euthanasia. Even Belgium’s leading figure in euthanasia, Dr Wim Distlemans feels a bit queasy about this. He said: "Surely, we are not going to carry out euthanasia because we can't offer an alternative?"
Is Belgium still opposed to the death penalty which it abolished in 1996? The Van Den Bleeken case muddles the meaning of capital punishment. Is he being killed because he made his victims suffer or because his victims are making him suffer?
Will this change the meaning of imprisonment? The Belgian media has reported that 15 other prisoners have already requested euthanasia. Some euthanasia supporters will welcome this development. Australian activist Dr Philip Nitschke mooted voluntary euthanasia as "the last frontier in prison reform" in his 2005 book Killing Me Softly. Why should jails try to prevent prisoners from committing suicide, if they can request to be killed?
Can any prisoner’s request for euthanasia truly be voluntary? If Belgium refused to provide Van Den Bleeken with the psychiatric help he needs to overcome his urges, can his desperate plea be deemed “voluntary [and] well-considered” and “not the result of any external pressure”, as the euthanasia law stipulates?
Three thousand US military and healthcare workers are being sent to West Africa to fight the Ebola outbreak there in an operation which could cost US$500 million. The Americans will train local healthcare workers, build clinics and distribute supplies.
"Faced with this outbreak, the world is looking to the United States and it is a responsibility we are prepared to embrace. We are prepared to take leadership on this," said President Barack Obama. "This is an epidemic that is not just a threat to regional security, it’s a potential threat to global security if these countries break down, if their economies break down and people panic."
The head of the World Health Organization, Dr Margaret Chan, is describing the epidemic in frightening terms: “None of us experienced in containing outbreaks has ever seen, in our lifetimes, an emergency on this scale, with this degree of suffering and with this magnitude of cascading consequences.”
She says that reports that 5,500 people have been infected more than 2,500 killed by it are “vast underestimates”.
It takes courage to stand in the front lines. Cokie van der Velde, a British sanitation specialist with Medecins Sans Frontieres/Doctors Without Borders, comes from Yorkshire. She spoke with the BBC about her responsibilities in Sierra Leone. The work is not only dangerous; it is exhausting and often repugnant.
In the centre, people groan and cry out - the smell of blood, diarrhoea and vomit is awful - unfortunately there is also a very pervading smell of dead bodies.
I can only leave it to your imagination to understand what a pile of bodies smells like after a week in very hot, moist surroundings - it makes you feel sick quite a lot of the time.
Nobody else has been near them for days. They must feel very lonely and very frightened.
I am responsible for infection control which means that my first job is to ensure the safety of the people I work with and of myself. We have to wear our scrubs, then two or three pairs of gloves, a completely waterproof suit and a head covering, a mask, goggles and a big apron over the top.
It's incredibly hot and humid - when you undress back to the scrubs afterwards it looks like someone has just poured a bucket of water over you.
I try to go round the patients and help where I can and give them some water. I'll change and wash patients and just try and give some physical contact to each person because nobody else will touch them, nobody else has been near them for days. They must feel very lonely and very frightened.
I don't know how much comfort I am bringing to people when I'm dressed in a mask and goggles and completely covered from head to foot. If we have children at the treatment centre, which we quite often do, I'll try to bring them some toys and have a little game with them if I can …
There is always an element of risk when I work for MSF - I could be caught in crossfire, I could always pick up a nasty disease and there's the small chance of kidnap. And normally I would put that risk at about one in 1,000. So it's not that high. But I must admit, when I sat down and thought about it, I would say the risk for me now is about one in 10 …
I go partly because of my belief that there should be social justice in the world - that there should be some sort of equality. The people I'm helping are part of the human race, part of humanity - in that respect, all people for me are the same. I feel I have as much obligation to help a stranger as I do to help someone I know.
That last time I was in Liberia I must have moved hundreds of bodies but only three people survived during the month that I was there. I don't think you can see that many bodies without viewing death in a different way.
I try to always make sure that the team I'm working with stops for a moment to say goodbye to the person before we put them in the body bag. We still try to keep a reverence for the dead. Even though I'm not religious, I hope I can bring some sort of spirituality to that moment and some respect to the grieving of the relatives.
The disease is not the only danger. One team of eight Ebola educators, including three journalists, in a remote part of southeastern Guinea has been killed, presumably because people feared that they were actually spreading the disease. Their bodies were dumped in a village latrine.
Is UK’s battle over “three-parent embryos”, as it is called in the media, or mitochondrial transfer, as it is called in the journals, becoming more transparent? Until now the government has dismissed concerns about replacing the 37 mitochondrial genes in an egg carrying mitochondrial disease with the genes from a healthy egg.
“Mitochondrial DNA comprises a very small proportion of total DNA (0.1% – only 37 of 20,000–30,000 genes)… It is generally agreed by scientists that it is genes in our nuclear DNA, together with environmental factors, rather than mitochondrial DNA, that shape our personal characteristics and traits.”
This approach was echoed in the media. In a typical example, New Scientist declared flatly last year:
“So what about the ‘three-parent’ issue? It is of questionable relevance. Mitochondria contain genes but make no contribution to the traits that make us human – personality, intelligence, appearance and so on. A donor would have no more right to claim parenthood than someone who gives blood. In any case, the precedent set by ooplasmic transfer suggests that the issue has no practical significance.”
Now, however, New Scientist has done a 180-degree turn on the issue because of some recent findings:
“Now it appears that we may have seriously underestimated the influence that mitochondria have. Recent research suggests that they play a key role in some of the most important features of human life. This raises the ethically troubling prospect – once widely dismissed, including by this publication – that children conceived in this way will inherit vital traits from three parents.”
The magazine’s editorial says that “a serious debate about the ethics” is needed before the mitochondrial transfer can be approved by Parliament.
And writing in BioNews, Ted Morrow, of the University of Sussex, complained that politicians and the press fail to understand the complexity of genetics. He pointed out an obvious inconsistency in the notion that mitochondrial DNA is unimportant:
“It is therefore a contradiction to claim that mtDNA is not important for an individual's characteristics (scientists call this the phenotype) while at the same time acknowledging that changes in the mitochondrial genetic code are important for an individual's risk of disease (again part of an individual's phenotype).”
Julian Savulescu and two of his colleagues at Oxford University in the UK, Brian D. Earp and Anders Sandberg, have made a case for latter-day love potions in the Cambridge Quarterly of Healthcare Ethics. Neuroscience research, they say, has shown that love is essentially “an emergent property of a cocktail of ancient neuropeptides and neurotransmitters”. If this is the case, drugs could be used to enhance or diminish romantic relationships.
One promising candidate as a love-potion is the hormone oxytocin. When injected into the brain of a small North American mammal called a prairie vole, they form lifelong pair bonds. When an oxytocin blocker is injected, voles split up and look for new sexual partners. Savulescu et al have been heartened by this experience.
“While ‘love’ is not simply reducible to these brain chemicals or pathways,” they write, “what it is clear by now that these underlying phenomena do much to shape (as well as to respond to) our higher-order romantic experiences, across a wide range of theoretical conceptions.”
It is not wrong to “medicalise” love, they argue.
“If we are prepared to agree that relationship counseling is, or can be, an acceptable form of medicalization—and that insights gleaned from the “scientific” study of factors that promote, or detract from, relationship health and functioning can reasonably be applied in such settings—then it would seem to be important to determine whether (or to what extent) the additional, adjunctive use of a bond-enhancing neurochemical substance would alter the underlying moral equation. Such a substance would not work to create love “magically,” of course, but it might certainly help it along by acting on the underlying substrates of attachment, or by promoting more empathic states of mind.”
Savulescu’s ideas have provoked much comment among bioethicists. In this article they list and refute five common reservations that people have when they are confronted with the idea of love enhancement.
One of the strongest is that the love would not be “authentic”. People who used drugs to bewitch a partner – or to allow themselves to be bewitched – would need a crutch to participate in the most important dimension of their lives. But Savulescu et al dismiss this. “If the administration of certain love drugs turns out to be effective in promoting states of mind and behavioural dispositions that are conducive to a healthy relationship, then couples may simply have an additional tool at hand to help them pursue their higher-order inter-personal aims.”
As more details of the death of American comedienne Joan Rivers come to light, her doctor’s behaviour is being questioned. The 81-year-old Ms Rivers died after a cardiac arrest during a routine endoscopy at Yorkville Endoscopy clinic in Manhattan. She was being investigated for a sore throat and hoarse voice.
The clinic issued a soothing statement to the press after the death about the kind of anaesthesia it used and the high quality of its care.
CNN alleges that the comedian’s personal doctor, Gwen Korovin, took a selfie while her patient was sedated and also, without her consent, took a biopsy of her vocal cords. "Even though you are a licensed physician, you still should have, if you will, the checks and balances to get your approval to practice in that particular place," said bioethicist Arthur Caplan, of New York University's Langone Medical Center. CNN says that Dr Korovin, a respected otolaryngologist, has denied taking a selfie with her cell phone.
The American Association for Accreditation of Ambulatory Surgery has placed the clinic on "emergency suspension." and asked it stop procedures and surgeries "until accreditation questions are settled."
BioEdge: “inter-country medically assisted reproduction” – do you basically mean a market for surrogate mothers and babies?
Shalev: Yes, that’s a major concern, but not the only one. For example, there is also a market in inter-country egg donations. The problem is that there have been too many cases of harm to children and to the third-party women who agree to take part in reproductive collaborations for the benefit of others, as genetic mothers (egg providers) and birth mothers (surrogate mothers).
What are the “products” in the market?
The products in surrogacy are children. In other practices the products are human gametes (eggs and sperm) and embryos (fertilised eggs). Unfortunately, women are being used as a means of production, and objectified in the process.
How much has the market for surrogacy grown over the past 20 years? 10 years? Can you put a dollar figure on it?
Inter-country surrogacy has been going on for about 10 years. Transnational practices involving egg donations have been around for a little longer. It’s difficult to put numbers to a market that is private and unregulated, but estimates indicate that the size of the industry (including other repro-genetic practices such as IVF for sex selection) is in the range of billions of dollars. We know the market is growing rapidly, even in those countries where surrogacy is allowed and regulated. In Israel, for example, fewer than 100 children are born each year from local surrogacy agreements, while in 2012 there were approximately 130 cases of requests to register the births of children born of inter-country surrogacy.
What is pushing it? Women delaying motherhood until it is too late? Gay couples who want kids?
The demand of prospective parents is related to changing social norms about family, combined with innovations in assisted reproductive technology (ART). Gay couples want to have families, and single women want to become mothers but often need egg donations, in addition to sperm, to get pregnant. The desire of individuals and couples who want children and can’t have them without medical assistance translates into a right to parenthood.
But the demand for access to ART also reflects a consumerist culture. Legal restrictions in countries of demand are one incentive to seek medical care abroad. Global economic disparities mean that services provided in lower income countries are far less costly, and that too is an incentive.
Finally, the market is driven by sometimes unscrupulous medical entrepreneurs and intermediary agents, who capitalize for personal profit on consumer desire, and on the ignorance and vulnerability of all those involved.
India and Thailand used to be the main destinations for people looking for surrogate mothers. Now that they have more or less shut the doors to foreigners, how will the market adjust?
Hopefully, the market will shrink, but it might well go underground, which would increase the risks. And it appears that new markets might be opening in Central and South America. The global ART market is similar in some ways to the global arena of organ transplantation, although the latter is relatively well regulated under international law and convention. Illicit organ transplantation practices are called “trafficking” and are punishable.
Nonetheless organ trafficking continues, and intermediaries are ingenuous in shifting locations to circumvent legal changes. This is evident, too, in inter-country surrogacy. For example, women who become pregnant in a surrogacy collaboration can be transferred across borders to give birth, if surrogacy is no longer allowed in their countries of residence. So long as medical practices are unregulated, the birth of a child is the most concrete evidence. All the stages that precede birth (throughout the process of conception, impregnation, gestation) can go undetected. That is why we know far less about inter-country egg donation that we do about surrogacy.
What are a few of the helpful and harmful practices to be canvassed in the conference?
Lessons learned from experience with local surrogacy can inform a model for inter-country reproductive collaborations, based on an ethic of care and responsibility, and values of respect, reciprocity and integrity.
Unfortunately, in some extreme cases, the current situation has incurred grave violations of the human dignity and rights of women and children. Abuses include the fraudulent use of surrogacy to create and sell babies. In other cases, new-born infants have been rendered parentless and stateless.
As for the women, double standards of care for invasive medical interventions have carried health harms, including collateral infertility. Medical procedures often involve violations of bodily integrity and patient autonomy – eg, in relation to multiple-embryo implantations, pregnancy terminations and C-section deliveries.
In some cases, intermediaries advertise the possibility of parallel pregnancies. This means, that if there are more pregnancies than the desired number of children, the surplus ones are terminated, and the pregnant woman is led to believe falsely that there was something wrong with the fetus. In other cases, women have been deprived of their liberty and confined for the duration of their pregnancy in controlled housing with 24/7 surveillance. A general concern is the invisibility of the third-party women, which creates conditions that are conducive to dehumanisation and exploitation. I think it’s really important that these women have faces, that they be seen as playing a role in a relationship. It’s also important to preserve information, so that children can know the circumstances of their birth.
What outcomes would you like to see?
We want to provide a forum for people to share what they know about inter-country reproductive collaborations, what works and what doesn’t, to discuss views on how best to address matters of concern, and to join a process which has as its long-term aim the adoption of an international code of ethics and human rights convention.
A new style of journalism has emerged in the UK: slow journalism. “Because today's ultra-fast news cycle rates being first above being right. It tells us what's happening in real time, but rarely what it means,” says the website for its flagship magazine, Delayed Gratification. Perhaps one of its writers should revisit the death of Savita Halappanavar in Ireland in 2012.
Mrs Halappanavar was an Indian dentist who began to miscarry her first child. Thinking that the child was dead, she asked for an abortion. The staff at Galway University Hospital refused and she died of a massive infection. The world media went wild: “Ireland's law and Catholic culture allowed Savita Halappanavar to die” was the headline in the normally sober UK magazine, New Statesman. The next year Ireland relaxed its strict laws on abortion.
“The findings of this investigation reflect a failure in the provision of the most basic elements of patient care to Savita Halappanavar and also the failure to recognise and act upon signs of her clinical deterioration in a timely and appropriate manner. The Authority identified, through a review of Savita Halappanavar’s healthcare record, a number of missed opportunities which, had they been identified and acted upon, may have potentially changed the outcome of her care.”
As a result 9 members of the medical team involved in Savita’s treatment have been disciplined.
However, compared to the blanket coverage of the woman’s death, almost nothing has appeared in the media. Opponents of abortion in Ireland are incensed. “Those who pushed the distorted version of the story hardest from the start have never bothered to set the record straight in light of all the reports that have contradicted their initial presentation of the case,” said Cora Sherlock, a solicitor and deputy chairman of Prolife Campaign. “These journalists and politicians were happy to hard wire a false account of what happened into people’s minds and to this day they have no intention of disturbing their original narrative.”