FROM THE EDITOR
Several of our stories this week deal with end-of-life issues. For a bit of a change, how about an historical diversion?
“And when Rachel saw that she bare Jacob no children, Rachel envied her sister; and said unto Jacob, Give me children, or else I die.” You might recognise this quote from the Bible. It is often used to illustrate the pain of infertility, which hurts no less 4,000 years later.
Jacob was a wandering pastoralist. But Turkish archaeologists announced this month that they had uncovered evidence of urban infertility in Kültepe, an Assyrian site in the centre of modern Turkey. It is a clay tablet with cuneiform script with a prenuptial agreement – also 4,000 years old. It may be the first pre-nup in recorded history.
If, after two years, the bride has still not borne a child, the tablet says, the wife will allow her husband to use a female slave as a surrogate mother to produce an heir. The slave would be freed after giving birth to a son.
Many ethical issues in the Reproductive Revolution have precedents, but it’s amazing to see that today’s surrogate mothers were anticipated by Assyrian slave girls four millennia ago.Click Here to Comment on this letter
|This week in BioEdge|
Australia’s best-known euthanasia activist, Dr Philip Nitschke, is back in the news with another machine for committing suicide, the Sarco capsule.
The machine will allow anyone who has the access key to end their life by simply pressing a button. Developed in the Netherlands by Nitschke and an engineer, the machine can be 3D printed and assembled in any location. Access to the Sarco capsule will be by an on-line mental questionnaire which will provide a four-digit access code.
When the person lies in the capsule, he can activate it and liquid nitrogen will rapidly drop the oxygen level, leading to death a few minutes.
The novel feature is that the capsule can be detached from the Sarco machine and used as a sleek and shiny coffin. The machine base can be re-used.
Design criteria for the Sarco will be free, made open-source, and placed on the internet. Nitschke says that the world is now one step closer to the goal where any rational person can electively end their life in a peaceful and reliable way at the time of their choosing. “Sarco does not use any restricted drugs, or require any special expertise such as the insertion of an intravenous needle. Anyone who can pass the entry test, can enter the machine and legally end their life”.
With the rapid advance in gene-editing technology, the time has come to consider how to ethical trials, according to an editorial in the New England Journal of Medicine. Bryan Cwik, a philosopher at Portland State University, in Oregon, zeroes in on some unprecedented difficulties in designing trials of modifying the human germline.
Cwik argues that “intergenerational monitoring” will be needed, not just of the first generation of modified children, but of their children and grandchildren. There could be subtle effects which emerge only after two or three generations. He points out that:
Monitoring for effects of gene editing will require consent and participation from multiple generations of descendants of the original participants. Studies will therefore require researchers to have access to key medical data for entire families over several decades.
But is this compatible with the autonomy of the research subjects? How can unborn grandchildren give consent to a lifetime of monitoring, with blood tests, physical examinations and collection of genetic material. Some descendants may not be aware that their forebears were genetically modified and notifying them may be socially and psychologically distressing. Cwik concludes:
... protection of the dignity, welfare, and privacy of research participants is of the utmost importance, and no amount of therapeutic potential can justify proceeding with human experiments until that protection is secured.
In another editorial in the same issue of the NEJM, Harvard stem cell scientist George Church jeers at such arguments.
... some critics fret about the slippery slope of human enhancement and the impossibility of obtaining consent from future generations. Doing nothing merely for fear of unknown risks is itself risky — greatly restricting the advance of medicine... We already embrace many enhancements inherited over multiple generations — generally without consulting future grandchildren — for example, education, homes, and extinction of pathogens through the use of vaccinations. The issue for many critics lies not in enhancement relative to our ancestors, but rather relative to one another.
A woman was within her rights to refuse a blood transfusion even if she risked dying, said the Quebec coroner this week.
Eloise Dupuis, 27, died in Quebec on October 12, 2016 of multiple organ failure and loss of blood after a Caesarean section. A Jehovah's Witness, she insisted that she did not want to receive a blood transfusion. The coroner, Luc Malouin, said that she had made a free and fully informed choice.
Jehovah’s Witnesses believe that blood transfusions are forbidden by the Bible. Another Quebec woman of the same persuasion, 46-year-old Mirlande Cadet, died a few days earlier, on October 3, after complications in childbirth.
After studying the medical records, the coroner was convinced on Dupuis’s determination. She had said on five separate occasions that she did not want a transfusion. In studying her medical records, Malouin found five occasions when Dupuis told doctors she did not want a transfusion. “Refusal of transfusion even if death is the result,” one note said on the evening after she gave birth to her son Liam. After she was no longer able to give consent, her relatives, also Jehovah’s Witnesses, supported her decision.
The coroner noted that in Quebec, once deeply Catholic but now profoundly secular, religious convictions may be regarded with scepticism or even hostility, but people still have the right to live by them:
“At a time when a majority of Quebecers do not actively practise any religion, this notion of respecting religious rules seems to come from a different era. There was a time in Quebec when such rules were very present and governed the lives of all. It is no longer the situation today, but the choice to adhere or not to religious rules must be respected.”
And the law in Quebec is clear: adults of sound mind have a right to refuse medical treatment.
Dr Jumana Nagarwala
Eight people have been charged with involvement in female genital mutilation in Michigan – the first case in the United States. Dr Jumana Nagarwala is the central figure because she performed the procedure – nicking the clitoral hood of two Minnesota girls who were brought to her by their parents.
All of the defendants are members of an Indian Muslim sect called Dawoodi Bohra.
In a post on The Hastings Center blog, two Muslim physicians from the University of Chicago attempt the difficult task of calling for a compromise on this incendiary issue. They call for more understanding of ancient traditions.
Informed discussion can only take place when we use language that does not marginalize and pre-judge, that opens dialogue rather than obstructs it. Thus, like others before us, we believe that the term female genital mutilation, or FGM, should be discarded in favor of more neutral terminology. No doctor willfully seeks to mutilate. As we ask others to reexamine their rituals, we should reevaluate our use of language. For the terminology we use might reveal our unconscious biases, and a neutral stance is needed to allow the voices of those who engage in the practice to be heard.
Next, we require an accurate understanding of the procedures and data about their harms. To have a productive conversation about harm-reduction we need to understand all of the harms involved, both when the procedure is performed and when it is not. Thus, the medical data on harms and complications post-FGC; information about the social and psychological harms that accrue when these procedures take place and, importantly, when they are not performed; and anthropological data about the significance of these procedures in their cultural contexts all need to be brought to the dialogue. We need to objectively and critically examine both what we do and do not know before making moral assessments and delineating a path forward.
The two Muslim bioethicists, Aasim I. Padela and Rosie Duivenbode, claim that Dawoodi Bohra practices a form of gender equity, with the boys being circumcised and the girls being “nicked”.
Social egg freezing has become another money-spinner for fertility clinics as women try to reconcile their career ambitions and their desire to have children. In 2014, Facebook and Apple announced that they would subsidise their female employees’ elective — or ‘social’ — use of egg freezing. Since then other tech companies have jumped in the bandwagon, including eBay, Google, Uber, Time Warner and Intel.
But are fertility clinics advertising their product responsibly? According to a bioethicist who did a content analysis of internet advertising, the answer is No. Writing in The New Bioethics, Christopher Barbey, of the Center for Bioethics at the University of Minnesota, reports that “many fertility clinics engage in biased advertising — i.e. they advertise the service persuasively, not informatively, emphasising indirect benefits while minimising risks and the low chance of successfully bringing a child to term.”
Barbey studied advertisements of clinics servicing the San Francisco Bay area. He found that much of the advertising was persuasive rather than informative. Statements like “Everything changes. Life moves quickly. The future is unpredictable” or “Your reproductive potential will never be as good as it is today” fail to give this faintly alarming information proper context. As well, they fail to alert women to the fact that 94% of client end up never using their frozen oocytes.
These clinics utilise puffery — i.e. linking, through imagery, suggestive language, and the use of unsubstantiated claims, the utilisation of their service to traits that potential clients may desire. They also couple undesirable traits with the consumer’s condition prior to using the service. They use language that appears designed to potentiate any sense of anxiety a woman may hold about age-related fertility decline. This anxiety may engender a potentially outsized sense of need for egg freezing in the minds of potential clients. Clinics are also shy about including straightforward information about the success rates of the procedure, preferring to focus on the speculative indirect benefits of utilising the technology.
The rates of assisted suicide in Switzerland increased by 30% in 2015, bringing it close to eclipsing suicide as a cause of death.
965 Swiss residents (426 male and 539 female) died by assisted suicide in Switzerland in 2015, up from 742 deaths (320 male and 422 female) in 2014. Of the 965 deaths by assisted suicide, 822 were of individuals 65 years or older.
1071 swiss residents (792 men and 279 women) committed suicide in Switzerland in 2015, an increase of 43 deaths on 2014.
Importantly the statistics do not include those who have travelled from another country to end their life in Switzerland.
Felix Gutzwiller, emeritus professor of preventative medicine at the University of Zurich, said that the increase in deaths had to do with an ageing population, and with the negative social attitudes towards unassisted suicide. "It is the negative attitudes to suicide that drives up the number of assisted suicides," he told Tages-Anzeiger.
The bid to introduce euthanasia in Victoria is taking its toll on politicians, with one parliamentarian being rushed to hospital after a marathon 26-hour sitting.
Daniel Mulino, who staunchly opposed the bill, was taken to hospital in an ambulance just before 10:30am on Friday. Mr Mulino had suffered an “emergency” in his office, though colleagues later confirmed that he had stabilised: “I have had an update from Mr Mulino personally, and we can say he is all good”, said Labor MP Jaclyn Symes.
Parliament was adjourned at 11:30am, and will reconvene next Tuesday.
MPs had debated just nine of a 140-clause amended bill by the end of this week’s session.
The fate of the bill is in the hands of just two MPs, Liberal’s Bruce Atkinson and Simon Ramsay, who have demanded extensive amendments before they would consider voting for the bill.
Under the first set of amendments to be considered, patients must be a Victorian resident for at least a year, the coroner will be notified and assisted dying will be mentioned on the death certificate. The government has also said it will tighten the entry requirement for patients from 12 months to 6 months maximum life-expectancy.
A bill to legalise euthanasia in New South Wales was defeated in the Legislative Council by one vote on Thursday evening.