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  10:30:00 PM

Gene of the week: paedophilia

Add paedophilia to the growing list of genetically-determined attractions, preferences and predispositions. In a New York Times op-ed, a law professor from Rutgers University contends that paedophilia is not a matter of choice. Margo Kaplan writes that:

“Recent research, while often limited to sex offenders — because of the stigma of pedophilia — suggests that the disorder may have neurological origins. Pedophilia could result from a failure in the brain to identify which environmental stimuli should provoke a sexual response. MRIs of sex offenders with pedophilia show fewer of the neural pathways known as white matter in their brains. Men with pedophilia are three times more likely to be left-handed or ambidextrous, a finding that strongly suggests a neurological cause. Some findings also suggest that disturbances in neurodevelopment in utero or early childhood increase the risk of pedophilia.”

Ms Kaplan admits that paedophiles do not have to succumb to their urges, so they are still responsible for their actions. However, they do have an unrecognised disability. She is campaigning to amend US legislation so that they will not be discriminated against in employment, education and medical care.

“The Americans With Disabilities Act of 1990 and Section 504 of the Rehabilitation Act of 1973 prohibit discrimination against otherwise qualified individuals with mental disabilities, in areas such as employment, education and medical care. Congress, however, explicitly excluded pedophilia from protection under these two crucial laws.”

“It’s time to revisit these categorical exclusions,” she concludes.

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  10:21:00 PM

Korean stem cell fraud in technicolour

The only trailer for “Whistle Blower”, a just-released Korean feature film about the biggest fraud in the world of science in decades, lacks English sub-titles, unfortunately. However, with a tense soundtrack, grim faces and menacing crowds, the message is clear enough: a collective hysteria gripped South Korea when Hwang Woo-suk claimed to have cloned human embryos and produced live-saving embryonic stem cells.

The journalists who exposed Hwang’s unethical mendacity were regarded as heartless and unpatriotic. According to the Wall Street Journal:

“Ryu Young-joon, the real whistleblower, told science journal Nature in January this year that had his identity leaked online and he and his family went into hiding for six months after the first program was broadcast following threats from Dr. Hwang’s supporters.”

Let’s hope the producers make the film available with English sub-titles soon. (Thanks for the tip to Pete Shanks at Biopolitical Times.)

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  10:19:00 PM

Mars Exploration Bioethics 101

All Star Trek fans will be familiar with ethical dilemmas in deep space. However, they might not be aware that bioethicists have opened serious discussions as projects for the exploration of Mars advance. An American group called Inspiration Mars plans to launch a married couple to fly around Mars in 2018 and return to Earth. A Dutch group called Mars One is seeking two men and two women to establish a settlement on Mars in 2024. It will be a one-way trip.

In Slate, Patrick Lin and Keith Abney of the Ethics + Emerging Sciences Group discuss some of the ethical challenges which such expeditions will probably encounter – “a sort of Astronaut Bioethics 101”.

Lifeboat ethics. What happens if an accident reduces the amount of air or other resources for a four-man flight to two or three? Should the astronauts draw straws to decide which one should die? Should they kill the astronaut who adds the least value to the mission?

“…  many things can go wrong on Mars. Given the dangers and severely limited resources, including medical, what should astronauts do if they need to choose between the lives of their fellow astronauts, a so-called lifeboat decision? This is a question best answered in advanced and not during the panic of the moment, when our judgment may be compromised.”

Pregnancies in space. A space child could be seriously handicapped because of space radiation and micro-gravity during the flight and on Mars. So how should the Mars mission deal with sexual tensions? Inspiration Mars handles this by recruiting a married couple. Mars One is more relaxed about its criteria, but notably silent about the psychological consequences of forcing men and women to live together in confined quarters. Should abortions be allowed in space? Should astronauts be sterilized before leaving?

“… it would seem patently unethical to even conduct these sorts of experiments today in space or anywhere else, at least with human subjects. Again, the physical and psychological dangers of procreating and living outside of Earth can seem inhumane, especially for involuntary subjects (the children). Yet many plans for space exploration already take it as a foregone conclusion that humans will reproduce in space.”

Psychology and privacy. The astronauts would effectively become a long-running reality-TV show. Their every action would be monitored. Mars One recently announced that it had teamed up with the Dutch reality-TV production company Endemol to cover the training program for 705 applicants.

The risks of private enterprise. What if the company backing the trip runs out of money and cannot afford to resupply the station or bring the astronauts back home? As Karl D. Stephan, an engineering ethicist, comments on MercatorNet:

“What if Mars One barely manages to get their first folks on Mars and then runs out of money? Even the most debauched reality-TV shows up to now have not proposed to show us live scenes of slow starvation, but that's what we'd be dealing with. What would the dying colonists be thinking?”

Notwithstanding these problems – all of them quite obvious after a moment’s reflection – 200,000 people applied for Mars One.

Footnote:  Neil Armstrong and Buzz Aldrin walked on the Moon and lived. But if the 1969 NASA mission had failed, President Richard Nixon had a speech prepared. It concluded: “For every human being who looks up at the moon in the nights to come will know that there is some corner of another world that is forever mankind.” What is Plan B for the Mars One spin doctors?

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  9:43:00 PM

What does the public really think about the dead donor rule?

A new study in the Journal of Medical Ethics claims that the US public is in favour of waiving the dead donor rule in certain circumstances. The study, produced by researchers from Florida State University College of Medicine, examined the opinions of 1056 US citizens – a sample intended to provide a rough cross-section of US society. 

The researchers asked participants to complete an online survey, presenting them with a vignette of a man in a vegetative state, and asking whether it should be legal for him to donate his organs even if it causes his death. Participants were also asked more general questions, such as whether it should be legal for doctors to remove organs from consenting vegetative patients despite it causing their death, and whether they themselves would donate their organs if they were in a vegetative state.  

The study found that 71% believed the patient described in the vignette should be allowed to donate his organs if he had pr0vided an advance directive. 53% of participants said they would donate their own organs if they were in a vegetative state.

Despite this, 69% of respondents said that it was ‘somewhat’ or ‘very important’ for a patient to be dead before their lungs and heart were removed.

The authors of the study concluded, “There appears to be public support for organ donation in a scenario explicitly described as violating the dead donor rule.” They do, however, acknowledge the sensitivity of respondents to questions to questions that have been personalised. The vignette on which their conclusions were based is ultimately one of these. 

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  8:46:00 PM

New infertility treatment results in successful birth

A woman in Sweden has become the first person to give birth after a womb transplant. The 36-year-old woman, a subject in a novel study into womb transplantation, received a transplant from a unrelated 61-year-old donor last year. The woman conceived via IVF and gave birth to a healthy baby boy earlier this year. 

The doctors conducting the procedure said that strong immuno-suppression drugs are vital to prevent wombs being rejected. The womb has to be removed after birth, due to the danger posed by long-term use of the powerful suppression medication. 

Prof Mats Brannstrom, who led the transplant team, described the birth in Sweden as a joyous moment.

“That was a fantastic happiness for me and the whole team, but it was an unreal sensation also because we really could not believe we had reached this moment.”

In an anonymous interview with the AP news agency, the boy’s father said: “It was a pretty tough journey over the years, but we now have the most amazing baby.”

The woman is one of seven women who have undergone successful womb transplants. The other six women are all now more than 28 weeks pregnant. 

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  12:34:00 PM

Humanising end-of-life care

A new book published by best-selling author Atul Gawande presents a strident criticism of aged and palliative care in the US. In Being Mortal: Medicine and What Matters Most in the End, Gawande argues that US healthcare system is failing to provide ‘quality of life’ to patients receiving end-of life-care. The author, a Rhodes Scholar and one time public health advisor to the Clinton administration, argues that general medicine overlooks serious psycho-social issues facing elderly patients, prioritizing the provision of  “treatments that addle [their] brains and sap [their] bodies for a sliver’s chance of benefit.”

There needs to be a paradigm shift, Gawande writes.

People with serious illnesses have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The question therefore is not how we can afford this system’s expense. It is how we can build a health care system that will actually help people achieve what’s most important to them at the end of their lives.

Gawande blends his professional expertise with personal experience, drawing extensively upon his experience of the passing of friends and family. He is not only a highly accomplished doctor, but also a talented writer.

“Being Mortal” is a valuable work, and a timely one. By 2044, there will be as many people in the world who are over 80 as there are under 50. Gawande reflects that, “It is not death that the very old fear ….It is what happens short of death — losing their hearing, their memory, their best friends, their way of life.”  These are what matter in the end.

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  12:13:00 PM

A youthful voice enters the assisted suicide debate

A young terminally ill woman in the US has reignited assisted suicide debate by publishing a video online describing her plans to take her own life.

29-year-old Brittany Maynard, who has been diagnosed with terminal brain cancer and given a prognosis of six months to live, describes her dire situation in an emotive You-Tube video that has already received six million hits. Maynard says she will take her own life on November 1st, using barbiturates that she has legally obtained in the US state of Oregon.

In the video she describes in minute detail how she plans to take her life (in her bedroom, surrounded by her family, with her favourite music playing). “I do not want to die”, Maynard says. “But I am dying. And I want to take my life on my own terms”. Maynard has partnered with the pro-assisted suicide group Compassion and Choices to campaign for the legalisation of AS in all US states.

Bioethicist Arthur Caplan says Maynard’s campaign is attracting much support amongst a younger Americans. “She may not be bringing any new arguments into the controversy, but she is bringing a whole new crowd of concerned younger people into the discussion. Those who have followed the elimination of laws against homosexuality and homosexual marriage know what that means.”

In a powerful blog post bioethicist Wesley Smith criticises the media spectacle that has developed around Maynard’s story. “By breathlessly pushing the Maynard story, the media are pushing suicide. This totally violates media guidelines for reporting suicide stories issued by the World Health Organization. ” Pro-euthanasia advocates are exploiting Maynard’s tragedy, Smith argues.

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  12:31:00 AM

Mexico, the new surrogacy hotspot

Surrogate mothers photographed last year at Planet Hospital, a surrogacy agency which has been forced into involuntary bankruptcy. 

With India and Thailand, the destination of choice for people seeking surrogate mothers, closing their doors to foreigners, where has the market gone?

To Tabasco, in the far south of Mexico, one of its poorest states, according to a feature in The Guardian. Tabasco's legislation has permitted altruistic surrogacy since 1998, so surrogacy agencies are moving in to take advantage of the shift in demand. They advertise on the internet, mainly to the gay market, offering wombs for less than half the price charged in the United States.

“This is going to take off,” said Carlos Rosillo, who runs an agency called Mexico Surrogacy. “At the moment there are maybe 10 to 15 surrogate babies being born a month, but when it is that amount every day the real problems will start,” he said. “If we don’t get better prepared it will be chaos.”

A bit of creative documentation is required in order to prove that the surrogacy is altruistic.

“the surrogacy boom in Tabasco is theoretically rooted in a groundswell of poor women from a relatively conservative culture who are motivated by a generous urge to give affluent, often gay, foreigners the chance to become parents in return for little more than thanks, and the payment of their expenses…
“But many surrogates are also clearly motivated by the promise of earning more money than any other job available to them could provide, even if this means they have to also navigate a minefield of taboos and misinformation.

The Guardian spoke with a single mother of three who used to work as a maid. “I’m doing this for my children,” she said. “It’s a hard job, but its better than prostitution, which is the only other thing round here that can earn you a bit more.”

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  12:21:00 AM

Genetic testing backfires

You cannot possibly improve on this headline: “With genetic testing, I gave my parents the gift of divorce”. But it is strictly accurate, unlike most sensational headlines. The online magazine Vox earlier this month featured a first-person essay by George Doe, a pseudonym for an American biologist who used the results of tests from the company 23andMe as part of an undergraduate genetics curriculum.

One day he gave the test to his mother and father as a gift. The results turned out to be devastating for his family. They linked George to a hitherto unknown half-brother, sired by his father. When the family found out, there was an eruption of repressed emotions. His parents divorced and no one is talking to his father. “We're not anywhere close to being healed yet and I don't know how long it will take to put the pieces back together,” he says.

Although the company markets its test as a way to “Build your family tree and enhance your experience with relatives”, the ramifications can be immense. George Doe laments that the 23andMe test is really a very advanced paternity test.

“I'm really devastated at the outcome. I wrestle with these emotions. I love my family. This is nothing I ever would have wished. My dream would be to introduce Thomas to dad, to incorporate a new family tradition, to merge families. We all get to broaden our horizons and live happily ever after. At least right now, that's not what happened. I still hold out hope that in time we can resolve things. But I also worry that as these transitions happen there may have been some permanent emotional damage that may not be able to be undone.
“23andMe's way of protecting people is by giving users the chance to click that box to opt into the relative finder program. I think they're trying to protect people from themselves. They believe in the power of information and of learning about yourself. Some people can't handle the information. Some people don't even know they can't handle it.
“When you check that [close relatives] box it should have a bunch of stars and bells and whistles around it. Because there are plenty of people who click boxes. Nobody reads their iTunes agreement. That’s how I feel about the family finder thing: you just check all the boxes, just keep doing it, and never put a whole lot of thought into the possibilities.
“I would want a warning saying, ‘Check this box and FYI: people discover their parents aren’t their parents, they have siblings they didn’t know about. If you check this box, these are the things you’ll find.’ And I’m the one with my PhD. I understand how this works. But I didn’t think through all of the practical implications, in part because I thought, ‘This wouldn’t happen to me.’”

Vox’s report hit 23andMe hard. The company reversed its move to make identification of close relatives an opt-out decision. From now on customers will have to make a clear decision to see whether they have relatives. 23andMe has also hired a Chief Privacy Officer to deal with such issues. 

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  12:11:00 AM

When doctors suffer from VIP syndrome

The unexpected death of American comedienne Joan Rivers after a routine procedure in a Manhattan endoscopy clinic may have been an example of the baneful effects of the “VIP syndrome”, according to the New York Times. The phrase was coined in 1964 by a psychiatrist, Dr Walter Weintraub. “The treatment of an influential man can be extremely hazardous for both patient and doctor,” he wrote.

For physicians, “The VIP, cursed with the touch of Midas, arouses only resentment and fear.” They regard these patients as demanding and manipulative and to resent them for it, which can diminish the quality of their care. But for hospital administrators, “The VIP is more than just a patient. He is also an object to be bartered for future favors.”

The most famous victim of the VIP syndrome may have been entertainer Michael Jackson, who died after his personal physician gave him a surgical anaesthetic to help him sleep. The doctor was convicted of involuntary manslaughter and was sentenced to four years in prison.

Doctors can also become overly deferential, which may affect their clinical judgement. They may settle for a conventional treatment so that they cannot be accused of reckless treatment if something goes wrong. “Often with VIP patients, doctors won’t say, ‘Joe Famous Person, look, you have to take your medicine or you have to come in for surgery immediately,’” bioethicist Robert Klitzman, of Columbia University, told the Times.

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