Several academics are arguing for euthanasia for those 'weary of life'. Recent articles in the Journal of Medical Ethics push for law reform to be consistent in our ethical reasoning.
The authors - including bioethicists Julian Savulescu and Jukka Varelius - suggest that euthanasia is ultimately justified by existential suffering - a despair in life - and not some kind of physical illness. As existential suffering can come in many forms, be it a 'diagnosable' illness or non-medical despair, it should be permitted for those who, though not ill, have lost hope and have no prospect of regaining meaning in their lives.
Varelius - who does not go as far as Savulescu in calling for new legislation - identifies existential suffering as the key factor in requests for euthanasia. He considers the example of a distressed car accident victim:
"[We need to ask] whether the suffering of this particular patient is severe enough to make his life not worth living and whether there is significant hope that he after all could recover to live at least a tolerable life. Addressing these questions involves considering existential issues relating to the value of the kind of life this patient can live and the question of what degree of hope ought to be deemed significant enough."
Varelius suggests that questions of the worth, meaning and value of life are the key considerations when deciding whether to grant euthanasia. He proposes that the presence of medical illness may not be as important a consideration as we once thought it was.
"If we accept existential suffering as a valid criteria, trying to distinguish the ‘unbearable suffering’ from illness and the ‘unbearable suffering’ of incarceration is meaningless - something the resourceful and compassionate Belgium laws acknowledge."
Like human dignity, autonomy is a word more honoured than analysed, even though it is the cornerstone of most contemporary bioethics approaches. In the latest issue of the journal Bioethics, Kam-Yuen Cheng, of HKU SPACE Community College, in Hong Kong attempts to describe what can limit autonomy.
His first assumption, which is widely shared, is that we are as autonomous as we are rational. Hence there are three main conditions which could impair the autonomy of a patient's medical decision: insufficient information, irrational beliefs/desires, and influence of different framing effects.
Providing enough information for patients to make decisions about their welfare can be a challenge, but it is relatively straightforward.
How irrational beliefs and desires limit rationality is more controversial. The most frequent example is Jehovah’s Witnesses’ attitude to blood transfusions. They believe that they will go to hell if they have a transfusion. Since this is (according to Cheng and his mentor Savulescu) irrational, a Jehovah Witness’s autonomy is compromised. So, in most cases, “to respect the autonomy of JWs is to give them life-saving blood transfusion”.
How about dangerous activities like skydiving or smoking? These are irrational, but “Since irrationality admits of degree, the irrationality of players of dangerous sports and smokers is just not high enough to render their deplorable activities non-autonomous.” However, it turns out that while the desire to smoke is irrational, the desire to die can be rational as long as it is done for values which are comparable to life, such as “happiness, dignity, tranquility, etc.” This argument is put forward en passant, but it raises questions about euthanasia and assisted suicide which are not easily answered.
The third limitation is the influence of framing effects, or the possibility of a patient making mistakes in deliberating complex options. Doctors, argues Cheng, should nudge them toward the right decision by presenting treatment options in persuasive perspectives.
The interesting feature of Cheng’s paper is the controversial scenarios which could follow. In some instances, doctors will end up deciding whether or not beliefs are rational. For instance, if euthanasia were legal, doctors might decide that some patients are being irrational in clinging on to life. Or doctors might feel obliged to frame a patient’s condition in ways that persuade her that life is not worth living.
The Indian surrogacy industry keeps tweaking its product line to keep up with the market. The latest trend to emerge in the media is twiblings – children born at the same time to two surrogate mothers.
The BBC reports that a 35-year-old man and his 36-year-old wife went to India after a long struggle with infertility. They commissioned “twiblings” at the Corion clinic in Mumbai, but each of the women became pregnant with twins. So they will be taking home four children instead of two. The couple said that they would not contemplate foetal reduction (reducing the number of foetuses by selective abortion).
The unnamed couple say that they are grateful to the two women, but they do not intend to meet them. "She's doing a job for us, how often do you communicate with your builder or your gardener? "She'll get paid… we don't need to see her. As long as she's healthy and delivers my babies healthily, she's done a job for us," says the wife.
“Twiblings” would not be allowed in the UK, according to surrogacy lawyer Natalie Gamble. “Under the regulation of licensed fertility clinics, there are quite strict rules about how many embryos can be transferred and certainly you couldn't transfer embryos to two surrogates in the same cycle," she says.
Is it possible to “cure” Down syndrome? Jeanne Lawrence, of the University Massachusetts Medical School, believes that it could happen some day. She and her team have silenced chromosome 21, the extra chromosome which is responsible for the range of physical and cognitive ills suffered by people with Down syndrome. Recently she presented an update on her startling research at the American Society of Human Genetics annual meeting in Boston.
"Silencing of trisomy 21 by manipulation of a single gene in living cells in laboratory cells surmounts the first major obstacle to development of potential 'chromosome therapy,'" says Dr. Lawrence.
The approach used by Dr. Lawrence and her team was inspired by the natural process that silences one copy of the female mammals' two sex-determining X chromosomes during embryonic development. In males, the sex-determining chromosomes are X and Y, and gene silencing helps maintain similar expression patterns of X chromosome genes in females and males.
"The results show the clear promise of this new strategy as a novel approach to identify the poorly understood cellular pathways deregulated in Down syndrome and creates the opportunity to derive and study various patient-compatible cell types potentially relevant to Down syndrome therapeutics," she noted.
The first beneficiaries of this research could be children suffering from other chromosomal disorders like trisomy 13 and 18, as the effects of these are far more severe than Down Syndrome.
The retiring head of the UK's fertility watchdog has painted a bleak picture of the world of IVF in a column in the BBC. Lisa Jardine, the chair of the Human Fertilisation and Embryology Authority, says that she regrets not having conveyed the pain of IVF failure. "The world of IVF is a market, a market in hope. Those who enter it deserve to be fully informed of its potential to deliver grief and a sense of failure, as well as success."
"The success rates for IVF remain discouragingly low. The last figures we have show that for every cycle of IVF, fewer than a third of patients will emerge with a baby (the figures are somewhat higher for women under 35). That leaves two thirds of would-be mothers and fathers with the heartbreak of "failure".And the costs are high - 60% of IVF treatment in Britain is carried out in private clinics, but the HFEA has no control over the prices charged. A couple - and nowadays that means same-sex couples as well as traditional partnerships - is likely to have spent something of the order of £15,000 for the three cycles it is likely to have taken should they be fortunate enough to become pregnant...
But newspapers today want banner headlines and excitement. Public information is nowhere on their agenda. Try as I might, I have not been able to talk at length to all those families out there who are about to enter the world of IVF, or who are undergoing treatment and being persuaded to try again and again when it fails, or who are entering their 40s and hoping IVF will allow them to start a late family."
Lianne Barnieh, and Braden Manns, of the University of Calgary, in Canada, and their colleagues argue that payment could result in a cost saving of US$340 and a gain of 0.11 quality-adjusted life years over a patient's lifetime. Increasing the number of kidneys for transplantation by 10% and 20% would translate into an incremental cost savings of $1,640 and $4,030 and a quality-adjusted life year gains of 0.21 and 0.39.
"Such a program could be cost saving because of the extra number of kidney transplants and, consequently, lower dialysis costs. Further, by increasing the number of people receiving a kidney transplant, this program could improve net health by increasing the quality and quantity of life for patients with end-stage renal disease," said Dr Barnieh.
Bioethicist Arthur Caplan was dismissive. A market for kidneys would be possible, but not a market in hearts, he observed. This means that kidney donors would be motivated by money, but heart donors by altruism. Heart donors could become scarcer.
“The idea of trying markets to increase the supply of kidneys is the whack-a-mole of transplant policy. Every other year someone does a study, tosses out a model or just proclaims that a market will solve the kidney shortage problem. But there is more than money involved when it comes to body parts, and until proponents of payment can engage those concerns, it is not likely that we will see a shift from academic talk to political action.”
Doctors: beware of Facebook. A doctor in the Australian state of Victoria, where abortion referrals are mandatory, stated in a Facebook discussion that he would refuse to refer. It was a purely hypothetical situation.
However, one of the other participants in the discussion reported "Dr X" to the Medical Board of Australia. He was summoned for a Star Chamber grilling lasting 70 minutes. Fourteen months later, he received a written rebuke warning him that he had acted unprofessionally.
“Why should the medical board have sanctioned Dr X at all? There was no patient at the centre of the case. And importantly isn't the board confusing its role as protector of the public with that of law enforcer?”
Under a 2008 law, doctors in Victoria with a conscientious objection to abortion are required to refer women who request an abortion to another doctor who will do it.
A controversial decision about embryos in the European Court of Justice which was initiated by Greenpeace could have far-reaching consequences. In Brüstle vs. Greenpeace in 2011, the ECJ set down that certain inventions related to human embryonic stem cells could not be patented.
Based on this a coalition of pro-life groups called One of Us has gathered 1.5 million signatures on a citizen’s initiative calling for an end to embryo research.
The citizen’s initiative is a new complication in the byzantine ways of the European Union participatory democracy. If a petition gathers at least 1 million signatures from at least seven countries, the European Commission must consider legislation.
There is no guarantee that the EU will pass a law, but a successful petition will place considerable pressure on the politicians. The organisers hope that their momentum will convince the EU that many of its citizens have firm pro-life views. Even if no ban on embryo research results, the experience of the campaign will be useful for future initiatives.
The human embryo deserves respect to its dignity and integrity. This is enounced by the ECJ in the Brüstle case, which defines the human embryo as the beginning of the development of the human being. … the EU should establish a ban and end the financing of activities which presuppose the destruction of human embryos, in particular in the areas of research, development aid and public health.
An increasing area of concern for bioethicists is doctor's use of social media. Every month more medical boards are releasing Codes of Conduct for practitioners – the latest example is Rhode Island.
In a recent NBC article influential bioethicist Arthur Caplan considered this issue, focusing particularly on the use of social media to verify the truth of patient statements.
Caplan cited a prospective liver transplant recipient who was refused the operation after photos of him intoxicated were discovered on Twitter.
Many see doctors' use of social media as a violation of patient privacy. Others believe it can in some cases be ethically permissible. Caplan argues that any ethical framework needs to preserve doctor-patient trust: "If they are going to continue to trust one another then we need to recalculate existing notions of medical privacy and confidentiality to fit an Internet world where there is not much of either."
There are other concerns that need to be addressed by any adequate social media code of conduct, including the preservation of a professional distance between patients and doctors and the caution of doctors in publishing any details – even vague details – about patients in their practice.
However, after convening a conference to debate the matter, it was eventually decided that the information was "too big" and "too credible" to be withheld.
Stephen Morrison, a global health expert at the Centre for Strategic and International Studies, has praised MSF for publishing the statement: “It was very risky, and a tough call, and things could have gotten ugly for them.”
However, some organisations are wary of overstepping their role of providing medical care. The International Red Cross, for example, has a policy of avoiding partisanship. Like many other organisations, they are concerned that political involvement could potential prevent them from carrying out their work in a country.