The controversy over three-parent embryos could soon be old hat. Writing in one of the world’s leading journals, one of Britain’s best-known bioethicists has outlined a strategy for creating children with four or more genetic parents. He calls it “multiplex parenting”.
John Harris, of the University of Manchester, and two colleagues, César Palacios-González and Giuseppe Testa contend in the Journal of Medical Ethics (free online) that this is one of many exciting consequences of using stem cells to create synthetic eggs and sperm. (Or as they prefer to call them, in vitro generated gametes (IVG).)
After the discovery of induced pluripotent stem cells in 2007, theoretically any cell in the body can be created from something as simple as a skin cell. Mice have already been born from sperm and eggs created from stem cells. Harris and his colleagues believe that the day is not far off when scientists will be able to do the same with humans. In their paper, they spin an ethical justification for this and outline some possible uses.
First, is it ethical? Of course it is, so long as experiments on mice show that it is safe. After all, they write, this is already a much higher ethical bar than the one used for the first IVF babies. “If impractically high precautionary thresholds were decisive we would not have vaccines, nor IVF, nor any other advance. Nothing is entirely safe.” Besides, any children brought into the world are better off than if they never existed.
Second, there are many potential uses. The first four are familiar from the world of IVF: men who cannot produce viable sperm; women with premature menopause; people who have lost gonads or their fertility due to cancer treatment; and people who have been involuntarily sterilised (rare, but they do exist).
Many clients for such a service would be gay and lesbian couples who could have children who are genetically related to them both. “There is nothing morally wrong with same-sex competent caring people using IVG for satisfying their legitimate interests in becoming genetic parents of their children,” they say.
Another would be “single individuals, who may wish to reproduce without partner and without resorting to gamete donation”. This would be the most intense form of incest – an individual effectively mating with himself – so its safety is not guaranteed. But if it were safe, it might be permissible.
Finally, “multiplex parenting”, an option which Harris and his colleagues tackle with great enthusiasm. This is “a radical expansion of reproductive autonomy that allowed more than two persons to engage simultaneously in genetic parenting”.
“IVG could permit instead a much more substantive sharing of genetic kinship, through what is in essence a generational shortcut. Imagine that four people in a relationship want to parent a child while being all genetically related to her. IVG would enable the following scenario: first, two embryos would be generated from either couple through IVF with either naturally or in vitro generated gametes. hESC lines would be then established from both embryos and differentiated into IVG to be used in a second round of IVF. The resulting embryo would be genetically related to all four prospective parents, who would technically be the child's genetic grandparents.”
But it could be far more than four parents. An Australian bioethicist has discussed how children with even more progenitors could be created as a form of in vitro eugenics. By creating gametes from embryonic stem cells, it would be possible to create 20 or 30 generations of Petri dish humans in as little as ten years. So four parents might be a conservative estimate. “The in vitro compression of generational time appears thus like the most transforming feature of IVG derivation,” they write.
An ethical defence of this scenario is tall order. But Harris et al are up to it. In the first place, arguments drawn from what is “natural” are obviously irrelevant as there is no such thing as “natural” ways of acting. Hence, what can be wrong with opening up genetic kinship to a wider range of people than one father and one mother?
If there are some drawbacks, the child can hardly complain. It exists, and existence is better than non-existence. In any case, even today, parenting involves many different individuals from different generations. The use of IVGs merely gives this reality a genetic component. “Prospective parents will be able to choose among a hitherto unimaginable variety of potential children,” they write.
An extensive survey of assisted suicide in Switzerland between 2003 and 2008 has found that the most vulnerable people are women, people who live alone or people who are divorced. People who ask for assisted suicide tend to be wealthier and better educated.
The results have been published in the International Journal of Epidemiology. The authors, from the University of Bern, conclude that disadvantaged sectors of the Swiss population are not more vulnerable to assisted suicide, because relatively fewer low-income people take advantage of it. Their principal recommendation is that the government should require better statistics.
However, other interesting findings also emerge.
* Fewer people with a religious affiliation, especially to the Catholic Church, seek assisted suicide. “The association with religion may reflect greater social integration among the religious as well as social norms and dogma,” they say.
* The existence of right-to-die associations might possibly be increasing demand for suicide. Although one-third of doctors said that they had been confronted with a request for suicide, only 6% of then actually participated without the involvement of a right-to-die association.
* The right-to-die associations are not following the law, but the authorities do not seem to be reacting. “In a substantial minority of death certificates (16%), no underlying cause of death was recorded, despite the fact that only those who suffer from an incurable illness, intolerable suffering or a severe disability are eligible for assistance by the associations.”
* The authors believe that their data may disprove the danger of a “slippery slope” because lower socio-economic groups are less vulnerable than the wealthier and better educated. However, if the time frame encompasses the 1918 law on assisted suicide, the “slippery slope” seems more plausible.
Nowadays, Swiss assisted suicide is “marketed” as a remedy for an unendurable disability and an alternative to the pain of terminal illness. However, that is not why the legislators of 1918 proposed it and the legislators of 1937 approved it. They removed penalties for assisting a suicide if the motivation were altruistic. But, surprisingly for our generation, health was not a consideration. Legalised assisted suicide was for people suffering the pain of wounded honour or disappointed love.
But in 1982 two non-profit associations, one for French speakers, Exit Suisse Romande, and one for German speakers, Exit Deutsche Schweiz, were formed to help their members die. These were followed by EX International in 1996, which helps foreigners, and Dignitas in 1998, which helps both Swiss and foreigners. What began as a policy in the spirit of The Sorrows of Young Werther ended up as industrial death.
The hospital, to be commissioned in February next year, will be spread over four acres, with special dormitories to accommodate surrogate mothers, 25 rooms for IVF patients, 15 neo-natal ICUs and 40 special rooms for couples. The estimated cost is $8 million USD.
Dr. Patel wants the hospital to be a “family nest”, where biological parents, surrogate mothers and neo-natal children all live together as an integrated family. Patel intends for the hospital to be staffed largely by relatives and friends of the surrogates, so as to “improve the overall family atmosphere”.
They found that 15 out of 55 minimally conscious patients responded to the stimulation by becoming more responsive and two were even able to communicate nonverbally with researchers. Those in a vegetative state did not show any reaction.
“These results are all the more impressive because they can occur in chronic patients, i.e. years after their accident, when their state is often considered as no longer being able to evolve”, said Aurore Thibaut, the chief author of the paper. Unfortunately the improvement is only temporary and patients return to their original state after several hours.
In a minimally conscious state a patient will exhibit minimal or occasional signs of awareness, from following an image with their eyes to reaching for an object, but they can go weeks to months without responding to anything at all.
The researchers are now working on the effect of long-term stimulations to prolong and maintain the benefits of these electrical stimulations on the brain.
The safe and relatively cheap technique, known as transcranial direct-current stimulation (tDCS), has already been reported in previous studies as improving attention span, working memory and language functions.
Dr. Michael DeGeorgia, an American neurologist, said more research like this study is needed to understand how much information a minimally-conscious patient can process. Patients may just be “locked in”, and still understand what’s going on around them though they unable to respond.
Overseas hospitals are sometimes the only option for Afghans. In a recent Medecins Sans Frontieres (MSF) survey conducted in Afghan hospitals, one in five patients said they had a relative or close friend who had died as a result of lack of access to healthcare in the past 12 months.
The MSF report outlined major understaffing, lack of medicines, short opening hours and corruption as key problems in the Afghan public and private systems.
In Indian the quality of healthcare is higher – though perhaps not as outstanding as many Afghans think – and there are more specialists available.
As a raw figure the number of medical visas is high, but only a small proportion of the Afghan population can afford to travel overseas for healthcare. Middle class families need to mortgage houses and take out substantial loans to make the trip, and they often will run out of money when in India.
Indian hospitals have been eager to tap this new revenue stream. Many have websites in Dari and Pashto, and separate payment and service desks for Afghans. They offer prayer rooms, Halal food and Afghan cuisine. Almost all hospitals provide interpreters free of charge.
A US federal court recently declined to stop force-feeding of detainees at Guantánamo Bay. The Court of Appeals for the District of Columbia Circuit refused to issue a preliminary injunction.
“The rights of men being held in Guantánamo are being completely ignored, and the hunger strike is the only option they have left to protest their indefinite detention, which has lasted more than 11 years without charges for some of them,” said Dr Vincent Iacopino, of Physicians for Human Rights. “By allowing the cruel and degrading practice of force-feeding to continue, the court has essentially authorized the continuation of an abusive tactic that violates human rights and fundamental medical ethics.”
The detainees being forced-fed are being held in indefinite detention, which is in itself a violation of human rights, according to the PHR. A preliminary injunction would have at least stopped force-feeding, which constitutes ill-treatment and could rise to the level of torture.
However, two of the three judges said the detainees did have a right to challenge the practice in court, paving the way for a continuing legal battle over the issue. The judges also pointed that that “force-feeding is a painful and invasive process that raises serious ethical concerns.”
Informed consent and conscientious objection are easy to fulminate about, but tricky to discuss with consistency. Take, for instance, the delicate topic of requests for hymen restorations and virginity certificates. Worldwide, an estimated 5,000 women were victims of honour killings in 2000. If a young woman from a culture which sanctions honour killing approaches a doctor, what should he or she do?
Refusal is not a popular or even, in some jurisdictions, a legal option for doctors who are asked to refer for an abortion or to prescribe contraception. But a request which reinforces “patriarchal norms” is different.
Swedish ethicists surveyed about 1000 general practitioners and 1000 gynaecologists. They report in the Journal of Medical Ethics that a small majority would agree to the woman’s request. However, a large minority, supported by the Swedish community, insist that they would never do so. In other words, conscientious objection to patriarchal norms is socially acceptable, even if it involves refusing a woman’s fully informed request for a medical procedure:
“the political message in Sweden is that hymen operations should be considered a non-option and that the appropriate response to such requests should be information about the medical aspects of sexuality and human rights and, if necessary, referral to police or social authorities for protection. The main argument for this practice is that Swedish society should take a stand against practices expressing control of female sexuality. The official Swedish viewpoint hence expresses a zero tolerance policy against patriarchal norms and values.”
Opposition to these practices in Sweden is so vehement that doctors try to dissuade women. If this fails, it is not illegal to perform them, but they do so reluctantly and secretly.
The authors favour the pragmatic policy followed by doctors in the Netherlands. There doctors inform women of the issues involved, but do the procedure if they insist. This allows them to give women better health care.
While the US Food and Drug Administration examines the possibility of allowing “three-parent embryos” to fight some lethal mitochondrial diseases, the UK has decided to press ahead. This week the government launched a consultation on how to regulate the technique.
It is estimated that 1 in 200 children born every year in the UK have some form of mitochondrial DNA disorder. These disorders, including heart disease, liver disease, loss of muscle co-ordination and other serious conditions that can have a devastating, even fatal, impact on the people who inherit them. At present, mitochondrial donation techniques to prevent the transmission of serious mitochondrial disease are prohibited.
The UK’s Chief Medical Officer, Professor Sally Davies said: “Allowing mitochondrial donation would give women who carry severe mitochondrial disease the opportunity to have children without passing on devastating genetic disorders. It would also keep the UK at the forefront of scientific development in this area.”
This is more accurate than describing the technique as “life-saving”. Rather than helping existing children, the technique creates a “designed” embryo with genetic material taken from two eggs. Embryos which do not make the grade are presumably discarded.
David King, of Human Genetics Alert, a lobby group, was critical of the latest step. "If passed, this will be the first time any government has legalized inheritable human genome modification, something that is banned in all other European countries," he said in a statement. "Such a decision of major historical significance requires a much more extensive public debate."
An Italian woman in her 80s decided to die in an assisted suicide clinic in Switzerland because she was ‘losing her good looks’. Oriella Cazzanello – who was seldom visited by her children– caught a train to a clinic in Basel where her life was ended for a fee of €10,000. Her family, who reported her missing to the police, only learned of her death when her attorney received the ashes and the death certificate in the mail.
Mrs Cazzanello chose to end her life because she was ‘weighed down by ageing and the inevitable loss of the looks of which she was proud’ the Italian news agency ANSA reported. Assisted suicide is illegal in Italy, but legal in Switzerland, even if the person requesting it is not terminally ill.
Coincidentally, researchers at the University of Bern released a paper this week which indicates that 16% of those who die in Swiss suicide clinics do not have an underlying health problem. They just want to end it all because they are weary of life. They concluded:
"Assisted suicide in Switzerland was associated with female gender and situations that may indicate greater vulnerability such as living alone or being divorced, but also with higher education and higher socio-economic position."
New studies are suggesting that doctors need to be more cautious when they release genetic information to patients.
A recent article in the American Journal of Psychiatry has examined the effects of informing patients of genetic predispositions to disease on their subsequent cognitive performance. The authors of the article, from the University of Indiana and UC San Diego, found that respondents who were informed of a disposition to Alzheimer’s performed worse on memory tests and had reduced confidence in the current power of their memory.
In the study, which involved almost 150 participants, some of the patients were given the results of genetic test for Alzheimer’s predisposition, whilst others were tested but not told of their results.
The researchers found that those participants who were informed of their predisposition to Alzheimer’s performed far worse on the tests for objective and subjective memory. The ”informed” participants showed poorer comprehension when asked to recount narratives and recall images. In subjective memory tests they were far more pessimistic about the strength of their current memory.
In addition avoiding the negative psychological effects of the test, the authors of the study suggested doctors bear in mind this phenomenon when assessing whether a patient has Alzheimer’s: ‘Clinicians and researchers should consider patients’ knowledge of their genotype or knowledge of possession of other Alzheimer’s biomarkers when evaluating older adults who may or may not be at risk for developing dementia’.