FROM THE EDITOR
Csanad Szegedi receiving tuition
One of the recurring themes thrown up by assisted reproduction is the importance of genetic ties. Are we determined by our origins, or can we forge our own identity? Does it matter whether our nearest and dearest are our kith and kin or whether they are just the people we hang around with?
By chance I just stumbled across the astonishing story of a Hungarian politician whose life was transformed when he discovered his true genetic identity.
By the time Csanad Szegedi was 24, he was vice-president of Jobbik, a far-right, nationalist and virulently anti-Semitic party. He was elected to the European Parliament as a Jobbik MEP in 2009 and wrote a book, I Believe in Hungary’s Resurrection.
Then he learned his family’s deepest secret: he was a Jew. His grandfather and grandmother were actually Auschwitz survivors.
Szegedi’s life fell apart. He was forced to resign from Jobbik.
Suddenly he did a complete about-face. Under the tuition of a Lubavitch rabbi from New York who was living in Budapest he became an Orthodox, observant Jew; he had himself circumcised, adopted the name Dovid and burned a thousand copies of his book. Now he is migrating to Israel with his wife and two children. He is interesting in joining the Knesset.
Szegedi is obviously a complex, intense man. He could even be a charlatan. But his astonishing journey does suggest that there is something to the idea that our personal identity is incomplete if it lacks the genetic heritage.Click Here to Comment on this letter
|This week in BioEdge|
Pro-euthanasia advocates are calling on Australian legislatures to legalise assisted dying, as the country marks 20th anniversary of the first death of a patient by legal euthanasia.
On the 22nd of September 1996 a 66-year-old Australian man was euthanised under a short lived law in the thinly-populated Northern Territory.
Bob Dent, a carpenter suffering from prostate cancer, ended his life with a lethal injection administered by euthanasia advocate, Dr Philip Nitschke.
The euthanasia law in the Northern Territory was quashed by the Federal Government in 1997 after Dr Nitschke had helped four people to die.
Euthanasia advocates are now calling on States to change the law, saying that evidence from various countries proves that euthanasia is safe.
“We now have 10 countries around the world where assistance to die is legal and their collective populations are over 100 million”, euthanasia supporter Marshall Perron told The Australian this week. As Chief Minister of the Northern Territory Perron drove the campaign to legalise assisted dying.
Until last year the cause of legalised euthanasia was identified with the antics of Dr Nitschke. He has a number of elderly supporters and an organisation, Exit International, which finances his activities in Australia and overseas. But he alienated other euthanasia campaigners and made the cause sound both ridiculous and dangerous. He runs suicide workshops, has skirted the law in helping people to die and has taken up a new career as a stand-up comedian joking about death.
Mr Perron told The Australian that Dr Nitschke had been a “double-edged sword” in the euthanasia cause. “Philip’s position today scares the politicians to the point where they, as I understand, say: ‘if you are pushing Philip’s position I don’t want to talk to you’.”
Now that Andrew Denton, an experienced TV and radio journalist, has launched his own campaign, euthanasia has become more respectable. He argues that no Australian should die in “lingering and untreatable pain”. “Australians overwhelmingly support a compassionate law, with strong safeguards, that will help those most in need at the end of their life”. He has created sophisticated media campaign with a website, speaking engagements and podcasts.
South Australia is currently debating euthanasia legislation, and it is likely that a euthanasia bill will be introduced into the Victorian parliament within a year.
A new prenatal test could reduce the expense of caring for those with Down’s Syndrome, says the UK Royal College of Obstetricians and Gynaecologists (RCOG).
In a recent submission to the National Screening Committee, the RCOG said that a “rigorous economic analysis” is needed to evaluate the benefits of rolling out Non-Invasive Prenatal Testing (NIPT).
If the decision has been made primarily on cost grounds, then a more rigorous economic analysis has to be made that includes the lifetime costs of caring for children and adults with Down’s syndrome (bearing in mind that cfDNA testing as a primary screen test will identify approximately 289 more babies with trisomies). Such an economic analysis may (or may not) suggest that cfDNA testing for all is cost-effective.
The RCOG submission was part of an NSC review into the impact of introducing NIPT.
Disability advocates have condemned RCOG’s suggestion, saying that it “puts a price on the life” of individuals with Down’s Syndrome.
‘It is utterly shocking that in this day and age someone can put a cost value on someone’s life just because they have a disability,” Dr. Elizabeth Corcoran of the Down’s Syndrome Research Foundation told The Daily Mail. “It is worse still that this comes from a respected Royal College that is a professional beacon for doctors.”
A clinic for euthanasia for children could open in the Netherlands within the next 12 months, a leading paediatrician has predicted. Dr Eduard Verhagen told the newspaper AD that Dutch doctors are already investigating end-of-life decisions for children between the ages of 1 and 12.
Although Belgium passed a law last year which allowed people under the age of 18 to ask for euthanasia, involuntary euthanasia was already legal in the Netherlands for children under the age of one, and voluntary euthanasia for children over 12, as long as they had unbearable suffering.
It seems that 5 children between 12 and 18 were euthanized in the period 2002 to 2012. One was 12 years old and the other four were aged 16 and 17.
Under current Dutch legislation, children between the ages of 1 and 12 years are considered incapable of making such an important decision for themselves and are not eligible for euthanasia.
But Dr Verhagen, who was one of the architects of the Groningen Protocol for euthanizing infants, disagrees. “We think that some children under the age of 12 are well able to make such important decisions”, he said. He told AD that he would like to know how doctors in Belgium determined the mental competence of youngsters to request euthanasia.
The debate over conscientious objection is continuing, with the editors of two major bioethics journals calling for strict limits on “objection at the bedside”.
In a paper released in Bioethics this week, Julian Savulescu, the editor of the Journal of Medical Ethics, and Udo Schuklenk, the co-editor of Bioethics, argue that doctors have “no right to refuse access to assistance in dying, contraception or abortion”.
Savulescu and Schuklenk believe that disagreements about the provision of healthcare should be carried out in policy forums, and not in a clinical context.
“Individual values ought not to govern delivery of health care at the bedside. Doctors can campaign for policy or legal reform. They can also provide advice with reasons, based on their values. But they have no claim to special moral status that would permit them to deny patients medical care that these patients are entitled to.”
Savulescu and Schuklenk respond at length to a paper published by Christopher Cowley of University College Dublin defending conscientious objection in healthcare.
The authors extol the virtues of restrictions on conscientious objection in Scandinavian countries. A test case of new conscientious objection laws in Norway is currently underway, involving a Polish GP working in the country who refused to provide abortifacients to patients.
Skynet is not keen on those pesky humans
Will you live long enough to be enslaved by super-intelligent artificial intelligence? Oxford philosophy professor Nick Bostrom has often made headlines with predictions that you might.
“Before the prospect of an intelligence explosion, we humans are like small children playing with a bomb,” he writes. “We have little idea when the detonation will occur, though if we hold the device to our ear we can hear a faint ticking sound.”
His book Superintelligence: Paths, Dangers, Strategies, was a New York Times bestseller last year, endorsed by celebrities like Tesla boss Elon Musk and Bill Gates.
But what do experts in artificial intelligence think of the philosopher’s predictions?
In MIT Technology Review, Oren Etzioni, a professor of computer science at the University of Washington, surveyed members of the American Association for Artificial Intelligence. They were sceptical. About 25% thought that superintelligence would never happen and 92% thought that it was beyond the foreseeable horizon. Some of their comments were not flattering:
“Way, way, way more than 25 years. Centuries most likely. But not never.”
“We’re competing with millions of years’ evolution of the human brain. We can write single-purpose programs that can compete with humans, and sometimes excel, but the world is not neatly compartmentalized into single-problem questions.”
“Nick Bostrom is a professional scare monger. His Institute’s role is to find existential threats to humanity. He sees them everywhere. I am tempted to refer to him as the ‘Donald Trump’ of AI.”
Another American fertility doctor is in court over allegations that he used his own sperm to treat patients.
Now retired, 77-year-old Dr Donald Cline, who ran a clinic in Indianapolis, appears to have fathered 8 children after secretly donating his own sperm 50 times to his patients in the 1970s and 80s. He told them that it came from medical or dental students or residents and that none of the donations had been used more than three times.
The fraud was detected when a local woman used a genetic testing kit made by the genomics company 23andMe and discovered that she was related to dozens of people who were related to Dr Cline.
Initially Dr Cline vehemently denied the allegations. In a letter he wrote to the Indiana Attorney General’s Office he stated: “I can emphatically say that at no time did I ever use my own sample for insemination,” and “in fact, if this woman is saying this or writing this I believe she is guilt of slander and/or libel.”
This was quickly shown to be false, and he now admits that he did donate. According to his lawyer, “Dr. Cline admitted to doing wrong by inseminating the women with his own sperm, but felt that he was helping women because they really wanted a baby. Also, he felt pressured to use his own sperm because he didn’t always have access to fresh sperm.”
Similar incidents have happened quite a few times before. Cecil Jacobson ran a Virginia fertility clinic and may have fathered 75 children in the 1970s and 80s. He was convicted of fraud and was sentenced to five years in jail. Dr Bertold Wiesner, who ran a fertility clinic in London, may have fathered up to 600 children in the 1940s and 50s. His wife destroyed most of the medical records.
The acrimonious fight over frozen embryos between Hollywood celebrities Sofia Vergara and Nick Loeb is due in court again in January in California and could set an important legal precedent.
The Modern Family TV star and the financier created frozen embryos in 2013 when they were living together. They signed an agreement that both had to agree if the embryos were placed in a surrogate mother. However, they split up in 2014. When Loeb proposed the surrogate mother option, Vergara refused. She was content to leave them frozen. “More than a mother, a baby needs a loving relationship of parents that get along, that don’t hate each other,” she said in a TV interview. “I wouldn’t want to bring kids to the world that is already set against them. It would be so selfish.”
Ever since Loeb has been waging a legal and public relations battle to get custody of the embryos. At the moment Loeb’s lawyers have asked a judge to fine Vergara for refusing to sit for a deposition.
Loeb is desperate to make his case plausible. “I think the misconception is that people don’t know the difference between an embryo and an egg,” Loeb explained earlier this year. “A lot of people think I’m trying to steal her eggs and they don’t realize that an embryo is half mine — half my DNA and half her DNA. It’s actually a human being.”
The legal status of frozen embryos differs from state to state. At the trial in January, Loeb’s lawyers will claim that the agreement the couple signed is invalid. “The result of their case will shed some insight as to how the courts decide to treat contractual agreements between partners choosing at one time to freeze their embryos and then later disagreeing as to whether those embryos should be allowed to survive,” family law expert Catie E. Young told the New York Post.
At the moment, American courts tend to treat disputes over embryos like business contracts. But questions are being raised about whether this is appropriate for embryos.
Courts in Pennsylvania and Illinois have used the so-called “last-chance doctrine” as a guideline. One partner may be awarded custody over the other’s objections if the frozen embryos are their only reproductive option.
“We had a case where the man had testicular cancer and could no longer have children, so they took the sperm out before radiation, and it was the guy’s only chance,” Manhattan divorce lawyer Joshua Forman told the Post.
New York law is different. In one bizarre case handled by Forman, a wealthy couple split up. She wanted to use the embryos and he refused. “What we wound up settling for is donating the embryos, but because she donated them, she got on the list for [other] donated embryos and he paid for the cost,” Forman said. The woman was not permitted to use her own embryos but she could use someone else’s.
A Swedish scientist has begun what are believed to be the first gene-editing experiments on healthy human embryos.
Developmental biologist Fredrick Lanner from the Karolinska Institute is using CRISPR-Cas9 gene-editing technology to identify the function of specific genes in the human genome, and to learn more about the causes of infertility and miscarriages.
Lanner, who also hopes to gain insight into the use of embryonic stem cells to fight disease, says that his experiments are both necessary and morally permissible; he intends to experiment on healthy embryos until they reach 14 days of development. “I think it's wise to be allowed to do fundamental research so we can gain more information about this technology and potentially use it in the future”.
Lanner told NPR that his research will not be used to study the potential for so-called “designer babies”. “I really, of course, stand against any sort of thoughts that one should use this to design designer babies or enhance for aesthetic purposes.”
Marcy Darnovsky, Executive Director of the Center for Genetics and Society, is concerned that embryonic gene-editing research will be a precursor to the production of genetically modified human beings.
"The production of genetically modified human embryos is actually quite dangerous…It's a step toward attempts to produce genetically modified human beings. This would be reason for grave concern."
In 2013 the influential German magazine Der Spiegel published an expose about clinical trials conducted by Western drug companies in East Germany during the Cold War. The magazine reported that at least 50,000 people had been test subjects for around 900 studies done by manufacturers that included leading companies from Switzerland, the United States, and West Germany. Fifty hospitals were sites of the research, including the prestigious Charite in East Berlin. The principle motivation for the East Germans was money: they desperately needed hard currency for their failing medical system. For their part the companies appreciated the far greater efficiency of recruitment in the East, and paid the East Germans up to 800,000 West German marks per study.
The agency responsible for setting up these contracts? The notorious Stasi, the East German secret police force that included hundreds of thousands of paid agents and hundreds of thousands of more informants.
Der Spiegel’s series about the drug trials contained language and themes familiar to many landmark bioethics cases. The revelations were described as a scandal that used the oppressed East Germans as human guinea pigs, including deaths and injuries that had not been properly reported, the indiscriminate use of low-birthweight infants and depressed patients, inadequate informed consent, powerful drug companies and physicians largely eager to cooperate in spite of the occasional protest. Complete with interviews with former test subjects and regretful doctors, the study had all the elements of a classical bioethics case study that could take its place along with the U.S. Public Health Service’s Tuskegee syphilis study; the Guatemala sexually transmissible disease experiments; and some of the well-documented human radiation, biological, and chemical warfare experiments in the U.S. and the U.K. The magazine’s series concluded on a hopeful note that justice would be served when the distinguished German medical historian, Volker Hess, reviews the study archives.
Hess and two co-authors recently concluded their exhaustive review, published in German asTesten im Osten or “Testing in the East.” They concluded that, far from the scandal that the press anticipated, the East German trials were conducted largely within acceptable standards of medical ethics, especially by the conventions of the day. The authors do allow that consent procedures might not have been as thorough as in the West and in some cases there are serious questions about placebo controls and the adequacy of comparative treatment arms, but the practices were not dramatically different from those in West Germany at the time, they say.
Several other groups of historians and ethicists in Germany have also examined the material and published their results. Yet this dramatic episode has received virtually no attention in the bioethics literature, in spite of the fact that it raises compelling questions about the functioning of medical ethics standards and practices in an authoritarian system. With the glaring and extreme exceptions of the Nazi concentration camp experiments and the abuses of Soviet psychiatry, these are questions that are largely absent from the literature. Medical ethics in Central and Eastern Europe during the socialist period is a matter of near total ignorance among scholars.
In the years ahead other scholars will want to weigh in on the conclusions of Hess and others. But one lesson that can already be drawn is that expectations about medical ethics in authoritarian regimes should be critically received. More investigation needs to be conducted about these seemingly contrarian results. Usual explanations don’t seem to be available. For example, although East Germany was not a member of the World Medical Association and therefore not philosophically committed to its Declaration of Helsinki, they do not appear to have violated that international agreement. And although Western firms had good reason to want to conduct trials that were in line with Helsinki requirements in order to ensure that their intellectual property would be protected, they often seem to have breached those requirements in other parts of the world. And yet in East Germany they seem to have complied with those requirements. Why was this the case?
Understanding the unique conditions of medical ethics in East Germany and the other socialist states in that period will require incorporating expertise from cultural history, law, and the social sciences, as well as dogged archival work. Challenging though it is, this often troubled region presents an exceptional opportunity to assess the development, interpretation, and application of ethical theories, standards, and practices under circumstances that were quite different from those anywhere else in the world, and to obtain an illuminating comparison with our own place and time.
Jonathan D. Moreno is the David and Lyn Silfen University Professor at the University of Pennsylvania and a Hastings Center Fellow. Ulf Schmidt is a Professor of Modern History at the University of Kent. This article has been reposted from The Hastings Center blog with permission.
Most of the victims of the sterilization campaign were poor indigenous women / BBC
"A nurse put me on a stretcher and tied my hands and feet," said Sabina Huillca. "I asked them to bring me my little baby girl but instead they anesthetized me. When I woke up, the doctor was stitching my stomach. I started screaming, I knew I had been sterilized."
In Peru, during the presidency of Alberto Fujimori, 272,000 women and 22,004 men were sterilized between 1996 and 2000 as part of the National Reproductive Health and Family Planning Program. Most of the men and women were indigenous, poor, and living in rural areas. The program's alleged aim was to eradicate poverty through lower birth rates, but evidence has emerged over the years that it was coercive and blatantly violated reproductive rights.
Over 2,000 women have testified that medical practitioners performed the procedures against their will. In many cases, the women did not speak enough Spanish to understand what they were consenting to and in some cases, providers did not even go through the motions of obtaining informed consent. Some women have shared stories of providers offering them money to have the procedure or intimidating them with threats or violence. Some women died due to complications and other women still suffer serious health complications today.
Last month, Public Prosecutor Marcelita Gutiérrez decided not to pursue charges of crimes against humanity against former President Fujimori and several staff members of the Ministry of Health. Gutiérrez stated that instances of forced sterilizations of indigenous women were not conclusive evidence that the practice was state policy and were, rather, isolated cases.
Some health providers tell a different story, saying that they were required by state officials to meet daily quotas. Dr. Hernando Cevallos, a leader of a regional medical doctor’s union, for example, received an order to sterilize 250 women in 4 days in 1997.
Meanwhile, the victims and their allies are appealing the dismissal of the case and hoping to appeal to a higher court, such as the Inter-American Court. Tania Pariona, a newly elected member of the national Congress and indigenous activist, said of Gutiérrez’s decision, “I believe we are facing a situation of shameful impunity in the country.”
Congresswoman Pariona went on to highlight the scale of the reproductive health program (in terms of the number of people sterilized) during this period, pointing out that in many indigenous communities today there is not even a single ob-gyn to perform a safe delivery. More than 15 years after the end of this “reproductive health” program, the Peruvian state continues to fail indigenous women.