Should termination of Down syndrome foetuses be regarded as a fundamental human right? This is an issue which the European Court of Human Rights (ECHR) is currently pondering. In the case of Krūzmane vs. Latvia, the mother of a girl with Down syndrome alleges that she was denied a screening test for the condition when she was pregnant in 2001. She claims that this test is a necessary element of  “prenatal care” and that access is guaranteed by the fundamental right to respect for private and family life.

As often happens, the facts of the case are not completely straightforward. Ms Krūzmane, who was 40 at the time, consulted a doctor during her pregnancy. The doctor told her to consult a specialist for a test but failed to follow up on this advice. For this negligence the doctor was fined. However, a subsequent police investigation found that Ms Krūzmane had failed to keep her appointment with the specialist and had failed to inform her doctor that her eldest child also suffered from a congenital genetic disorder. After exhausting her legal options in Latvia, Ms Krūzmane has turned to the European Court of Human Rights.

Critics say that the Court is being asked to decide whether eugenics is a fundamental right. The court’s decision could impose a fundamental right to abortion because of a disability detected through screening on 47 member states.

Advocates for rights for children with Down syndrome have set up a website to protest against this move, Stop Eugenics Now. They argue:

“Recognising as a human right the elimination of children with Down syndrome before their birth amounts to stigmatising a human group selected on the basis of their genome. A favourable ruling would deny purely and simply the humanity of the persons with disabilities and setup in law the mechanism for their elimination.”

In Israel women with up to two children can receive unlimited free, government-funded IVF treatment. This means that it is an ideal place to test the effectiveness of IVF in increasing fertility.

Unfortunately, according to a literature survey in the Journal of Health Services Research & Policy, IVF has not increased fertility significantly in Israel. Instead, it has just hooked some women on endless painful and humiliating IVF treatment. Some women, the authors say,  are spending seven years in IVF clinics, meaning that they go through 35 and 42 cycles. Yet the likelihood of a child is almost zero. In fact, worldwide, “the rate of success after seven failed attempts is zero, or almost zero”. There is a familiar pattern:

“the three first cycles of IVF have the best chance, with success rates rapidly plummeting to none after each new unsuccessful cycle. The cumulative rate between the third and the fourth cycle of IVF improves by just 4.4%, between the fourth and the fifth cycle by 2.7%, and so on; between the seventh and the eighth cycle the odds for a live delivery drops to 0.8%. Between the eighth and fourteenth cycles, the odds of having a baby with IVF is 0.1% (per cycle); over the age of 40 it is zero.”

The authors call for “an evidence-based policy on assistive reproductive technologies”, as Israel’s policy of unlimited funding seems profligate and effectively useless. In fact, it may even enmesh women in the misery of a “perseverance trap”. The authors caustically observe that some IVF practitioners “seem to be suggesting that women should continue having endless IVF for the sake of a miraculous event”. ~ Journal of Health Services Research & Policy, April

South Korea's stem cell research is bouncing back after the disgrace caused by researcher Hwang Woo-suk, whose work with stem cells proved to be fraudulent. The country announced last month that it will boost funding for research into stem cells and regenerative medicine by 33 billion won (US$29 million) in 2012, 4 times that given in 2011. A total of 6 different ministries will invest 100 billion won (US$89 million) in stem cell research this year. Up until last year, public investment in stem cell research in South Korea was relatively low and aimed at basic research. Now the country's Ministry of Health and Welfare is expanding its support for clinical research, spending money on linking basic research with intermediate or clinical studies. The aim is to commercialise the research in its early stages.

"From the current research atmosphere and infrastructure, the government has judged that stem-cell studies are now maturing," says Hyung Min Chung, of Seoul-based biotechnology firm Cha Bio and Diostech and an adviser on the budget plan. The government money will be directed at two areas: rare or incurable diseases which provide little incentive for private investment, such as spinal cord damage; and common chronic ailments such as arthritis, with a view to helping South Korean companies capture part of the sizeable potential market for treatments. ~ Nature News, May 1

Many women in India who hire surrogates use fake tummies to keep the surrogacy a secret, the Times of India reports. Women from traditional communities hide the fact that they have employed surrogates, for fear that their in-laws and relatives will disapprove. Instead, they wear a strap-on belly for 9 months to simulate pregnancy. Surrogacy expert Dr Naina Patel, based in Anand, tells of a Chennai couple who opted for an artificial stomach to avoid disapproval from the woman's in-laws. "She did not have a uterus and her in-laws would never have accepted that the child was born through another's woman's womb," Patel told the Times of India.

Hema Inamdar, a maker of soft toys, specialises in fake stomachs. "A woman called from the UK saying she felt she was actually carrying a baby when she wore the tummy," says Inamdar. They come in sets of 3. One set simulates 3, 5 and 7 months' pregnancy. The other simulates 5, 7 and 9 months, with one set costing about 1,000 rupees (US$18). Fertility expert Dr Falguni Bavishi says Indian women who live abroad give in too often to familial pressures.

"A Gujarati from the US took artificial tummies with her after employing a surrogate, so that her in-laws would believe she was pregnant. She told them she had to deliver the baby where the IVF treatment was done, got the baby from the surrogate and went back with her secret intact," she says. ~ Times of India, Apr 29

The organ donation community applauded Facebook's announcement this week that it will allow its 900 million members to share their donor status with friends and family, and to link to state databases where Americans can sign up online to become donors.

"This is great news. It has the potential to be one of the biggest campaigns to increase donor designation that we've ever seen," said John Green, of the Gift of Life Donor Program, based in Philadelphia. "It's absolutely critical at this time when online communication and social media are really the way people are communicating," said Julia Rivera, of the New York Organ Donor Network.

Facebook founder Mark Zuckerberg told Good Morning America that the organ donation feature was motivated by disasters such as the tsunami and earthquake in Japan last year and the social network's role in keeping people connected. Facebook will partner with Donate Life America, a national umbrella organisation for local groups which works to increase the number of registered organ, tissue and eye donors.

Many have expressed optimism about the new feature, such as bioethicist Art Caplan, of the University of Pennsylvania. He wrote:

"Some might argue that it could be coercive to have your friends publicly state they want to be organ donors, especially if you are not sure. I don’t think so. The choice is yours, but seeing that your family and friends have chosen to donate is a fact that might sway, not coerce, your decision… Let’s hope, for the sake of all those waiting for the gift of life, it helps."

Summer Johnson McGee, PhD, co-editor-in-chief of the American Journal of Bioethics, highlighted potential downsides of Facebook's new organ donation feature. She wrote in her blog:

"A concern related to the second one above is that the Facebook status update provides no education to potential donors as they make the choice. Arguably that isn’t the job of Facebook, but I think it should offer a few more links to information about the decision to donate than a link to your state’s registry." ~ USA Today, May 2; American Journal of Bioethics Blog, Mar 11

Two cases of euthanasia in New Zealand have been used to push the legalisation agenda, with politicians agitating for legal change. Each has involved men who helped terminally ill family members to commit suicide.

Opposition politician Maryan Street is pushing legislation which would allow a person to assist a suicide without facing criminal charges. Parliament debated the issue last in 2003, and struck down a Death with Dignity bill with a 60-57 vote. Sean Davison, 50, was placed under house arrest for five months for helping his 85-year-old cancer-afflicted mother to kill herself in 2006. "I broke the law, but it's a bad law and now is the time to change it," said Davison, who gave her the lethal dose of morphine she had begged for after unsuccessfully trying to starve herself to death. Mr Davison is a lecturer at University of Western Cape in South Africa. Now back home, he has vowed to campaign for assisted suicide there.

“I have done my sentence,” he told the press,  “but I want to emphasise that I didn’t commit a crime. It’s not a crime to help someone who is terminally ill to die with dignity. I always told the truth and I’m not ashamed of assisting my mother die. She would have been horrified at my sentencing. So, in a sense, I was always free in my mind.”

Evans Mott, 61, is currently awaiting trial in Auckland on a charge of aiding and abetting his wife's suicide in December, who suffered from severe multiple sclerosis. ~ Herald Sun, Apr 30; Independent Online, May 4

Sooner or later, one side in an internet debate will invoke the Nazis to prove a point. Whereupon his opponent will triumphantly deride this as a logical fallacy called Godwin’s Law – that the first person to say “Nazi” in a debate has lost.

However, the Nuremberg Doctors' Trial is universally accepted as a touchstone of bioethics. Of 23 German doctors who were tried after World War II, nine were imprisoned for participating in atrocities and seven were hanged. In the current issue of the Journal of Medical Ethics, a medical student asks whether doctors are actually more likely than other professions to be moral monsters. After all, by 1945 half of all German doctors had joined the Nazi Party and 7% of all German doctors were members of the SS, compared to 1% of the general population. The British doctor Harold Shipman was one of the worst of all serial killers – at least 218 people died under his care before he was arrested in 1998.

Alessandra Colaianni, of Johns Hopkins Medical School, asks the unsettling question: “Is there something inherent in being a physician that promotes a transition from healer to murderer?” Some recent situations in the United States suggest that this is possible: allegations of euthanasia in the wake of Hurricane Katrina, torture of Guantanamo detainees, and the participation of doctors in capital punishment. Colaianni suggests that there are illuminating parallels between medical training and the work of doctors in Auschwitz.

Socialisation and hierarchy: doctors are pressured to conform to group norms, often with techniques like “Sleep deprivation, heightened stress levels and fear of failure”. Ambition: just as Nazi doctors participated in the T4 euthanasia program to advance their careers, today’s doctors are pressured to succeed even at the risk of losing their integrity. Doctors have a “licence to sin” which can easily be perverted: some “actions are allowed when they are performed by physicians, but are the stuff of horror films and criminal cases when non-licensed personnel attempt them.”

Detachment was also a characteristic of Nazi doctors. They could select prisoners by day and dine with their colleagues by night: “the medical profession requires unflappability in the face of things that others would consider disgusting, horrific, or otherwise overwhelming”.

Colaianni concludes that medical students need to realise how vulnerable they are to being seduced by the special privileges of their profession. “It is for this reason that a solid grounding in principles of ethics, individualism and human rights is so crucial for physicians and others in positions of power or trust.” ~ Journal of Medical Ethics, early on-line, May 3

Why can you sell sperm but not your vote? Why is there pressure to set up a market in kidneys but not in children? These conundrums are investigated by the political philosopher Michael Sandel, of Harvard University, in his latest book, What Money Can’t Buy: The Moral Limits of Markets. It is sure to become a reference point in future bioethics debates.

Sandel’s target is not specifically bioethical. His thesis is that Western societies, especially the US, have moved from being a market economy to a market society, in which everything can be valued and exchanged for money.

“If someone is willing to pay for sex, or a kidney, and a consenting adult is willing to sell, the only question the economist asks is “How much?” Markets don’t wag fingers. They don’t discriminate between worthy preferences and unworthy ones. Each party to a deal decides for him- or herself what value to place on the things being exchanged.

“This nonjudgmental stance toward values lies at the heart of market reasoning, and explains much of its appeal. But our reluctance to engage in moral and spiritual argument, together with our embrace of markets, has exacted a heavy price: it has drained public discourse of moral and civic energy, and contributed to the technocratic, managerial politics afflicting many societies today.”

The point he makes is that things which can be bought and sold are commodities. Everyone agrees that some things – like people -- should be never become commodities. But there is no public agreement on why or which things these are. Sandel calls for a “debate about the moral limits of markets”. ~ The Atlantic, April 2012

Violence against doctors is increasing in China. China Daily has reported that in 2010, 17,000 violent incidents in about 70% of the country’s hospitals. This includes murder. In late March, a young doctor at the First Affiliated Hospital of Harbin Medical University in northeast China, was knifed to death by an angry patient. 

This seems to be the sensational tip of an endemic problem. An on-line survey of attitudes towards the recent murder yielded some revealing figures. Only 7% of respondents were sad and 61% were happy. This is far from being an accurate index of public opinion, but it reflects the public’s frustration.

Writing in Bloomberg, Adam Minter ventures three reasons. First, China lacks an independent system for dealing with medical malpractice. Some disgruntled patients feel that their only recourse is violence. Second, doctors are paid so badly that many supplement their meagre income with bribes, kickbacks, commissions, and unnecessary expensive procedures. This makes them despised by patients who feel that their illness is being exploited.

As one blogger commented:

Internet users are happy, of course, not for the innocent medical intern’s death, but instead happy as a kind of vengeful catharsis against the professional ethics of damn doctors who receive red envelopes [filled with cash] and kickbacks! Black hearts and low morals are not natural to doctors, rather the current situation is caused by commerce and imperfect regulations!

Bloomberg, Mar 30

The negative side of IVF birth defects may finally be getting some publicity. IVF clinics are aware that there is a higher incidence of birth defects among children conceived through IVF. However, consumer awareness is low.

But last week’s news that birth defects are 37% higher is dramatic. “That is a huge number,” writes Art Caplan, of New York University. He is probably the most quoted bioethicist in the US, and possibly the world, so attitudes could change. He writes in a column for msnbc.com:

“the large risk factor now on the table needs to be a key part of how everyone thinks about making babies in medical settings. The authors of the study say they do not know why the risk is so large. And it has taken far too long for this question to get asked. We need to be sure that long-term monitoring of children born by means of infertility treatment is routine and that more research is done into the causes of health problems for kids who cannot make choices about facing risk. 

“Infertility treatments have brought a great deal of joy to many.  But, the price is high -- so high that we need to be sure it is a key element in thinking about using these treatments.”