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October
07
  11:35:00 PM

Bioethics in Nobel for Literature

The 2017 Nobel Prize for Literature has been awarded to British-Japanese novelist Kazuo Ishiguro, one of the few laureates to deal explicitly with bioethical topics. His 2005 dystopian novel about cloning, Never Let Go, won a number of awards and was one of the TIME 100 Best English-language Novels from 1923 to 2005.The 2010 film of the same name was positively received by critics, but at the box office it was a fizzer. Admittedly, it is a sombre novel, though narrated with exquisite skill in gossamer prose – not exactly material for a Hollywood top of the charts.

The story is narrated by Kathy, a woman in her late 20s who looks after convalescing organ donors. As she prattles on about her days at Hailsham, an English boarding school for girls and boys, we begin to realise that something very creepy is going on at this school – which troubles the reader, but not Kathy.

The children, it turns out, are clones who are being raised to provide organs for their original. In their mid-20s or so, they begin to donate organs. They can’t live much longer than four operations and then they “complete”, the Hailsham jargon for dying. The clones are strangely accepting of their fate and very little is said about the outside world which has created the market in human organs. 

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October
07
  11:27:00 PM

Sperm bank to add criminal check and thorough psych assessment to screening process

A leading sperm bank, California Cryobank, has become the first in the industry to add a clinical psychological assessment and criminal background check to a standard donor screening process.

The donor sperm industry has traditionally operated without the use of a formal psychological screening component.

"We believe in robust screening as well as quality informed consent", says Cryobank Medical Director Jaime Shamonki. "Our screening process selects for the most committed, altruistic, and informed donors."

California Cryobank is also one of the first sperm banks to implement criminal background checks as a standard part of the donor screening process.

"We have heard from more and more clients in the last few years that psychological screening is something they would truly value. This is just one more way we can continue to help create happy, healthy families," adds Scott Brown, Director of Customer Experience.

One reason for Cryobank’s move may be a public relations disaster last year which dented the industry’s reputation. Xytec Corp, a sperm bank based in Atlanta which is even older than Cryobank, is being sued for misrepresenting the character of a donor whose sperm led to the birth of at least 36 children in Canada, the US and Britain. He was described on Xytec’s website as a man with an IQ of 160, an internationally acclaimed drummer and a PhD student in neuroscience engineering. In reality he was a convicted criminal with several mental illness diagnoses including schizophrenia, narcissistic personality disorder and grandiose delusions. 

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October
07
  11:17:00 PM

Cosmetic surgery clowning to be discouraged

The circus atmosphere of plastic surgeons donning costumes, dancing and juggling breast implants during live surgery videos on social media may soon change.

A first code of ethical behavior for sharing videos of plastic surgery on social media was recently published in the Plastic and Reconstructive Surgery Journal  as the foundation for ethical guidelines.

"This the first step in taking the circus tent down and developing ethical rules for making and sharing plastic surgery videos," said senior author Clark Schierle, of Northwestern University Feinberg School of Medicine. "There is increasingly vulgar content by a growing number of plastic surgeons that is not in the best interest of the patient."

Some plastic surgeons have gained large followings on Snapchat and Instagram by broadcasting live surgery videos that include theatrics such as dressing in costumes and dancing and flaunting removed body tissue such as abdominoplasty specimens. One entreated viewers to come for free booze and a DJ at a marketing event, while he was performing live plastic surgery.

A Miami-based, board-certified plastic surgeon was the first to post theatrical videos several years ago. Now copycat plastic surgeons in major metropolitan areas "are jumping on this bandwagon, trying to replicate his success," Schierle said. "The crazier, more obscene and edgy the better as far as grabbing attention on social media."

In one post, Schierle saw a plastic surgeon cradling an abdominal tummy tuck specimen in his arms like a baby and then used a Snapchat filter to put an "infant's" face on it. "This is inappropriate handling of human tissue for entertainment purposes," Schierle said.

“As board-certified plastic surgeons, I think we should have higher moral standards than a 13-year-old sexting with her boyfriend,” he told LifeHacker.

Finding the line between appropriate and inappropriate behavior isn't easy, Schierle said. "It's like pornography. I know it when I see it, but how do I define it?"

Many plastic surgeons question the ethics of broadcasts done more for the purposes of entertainment and marketing than education, the authors said, and have called for the development of more structured oversight and guidance in this area.

The surgeons are not filming the videos for educational purposes. "It's about notoriety," Schierle said. "It's about showing the most outrageous content to attract more viewers and build your business."

Even when surgeons obtain consent to post videos on social media, Schierle and Dorfman question the validity of the consent.

"The relationship between a doctor and patient still remains somewhat hierarchical," Schierle said. "The patient may feel coerced -- even if subconsciously -- to participate in being filmed in order to be a 'good patient.' There is an inherent power disparity."

Some patients may request to have their video shared on social media -- particularly those who sought out the surgeon based on his or her social media presence -- as a way to experience their own brief moment of fame, Dorfman said.

But patients risk their images being copied, manipulated and redistributed, as well as possible revelation of their identity. They may not realize that a video on Snapchat, which disappears in 24 hours, may be screenshot and posted on YouTube or any other website where it can live indefinitely, Dorfman said.

He calls for greater transparency about the risks involved including the permanency associated with posting videos on social media and the Internet.

There also is the risk to the patient of having a distracted surgeon. "Instead of focusing on providing the most efficient surgical procedure to help the patient, the surgeon is distracted by hamming it up for the camera," Schierle said.

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October
07
  11:00:00 PM

Children can write their own advance care directives in Victoria

In a world first, the Australian state of Victoria is allowing children of any age to write their own advance care directive that doctors are obliged to follow. The new ACDs, which come into effect in March next year, will allow a child to decide on their treatment preferences, provided he or she was competent at the time of making the declaration, and the statement was witnessed by a medical practitioner and one other witness.

If a child has made a valid advance directive in which they have included instructions to refuse a particular medical treatment, such as dialysis or chemotherapy, a health practitioner must not provide that treatment.

Up until now, laws around the world have given parents the final say in decisions about treatment options for minors. The new laws are controversial, and run contrary to many of the legal precedents on the decision-making capacity of minors.

Writing in The Conversation, health law expert Carolyn Johnston advocated for a collaborative approach to drafting ACDs for children:

“Parents want to protect their children and health-care practitioners want to do the best for their patients. Advance directives should be drafted as a collaboration between the child, health professionals and, ideally, parents. This will enable understanding of the possible treatment options, their benefits and harms, and the impact of refusing certain treatment, resulting in a meaningful and effective advance decision.”  

There has been significant debate amongst bioethicists about the “competency” of children when deciding about treatment options. 

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October
07
  10:55:00 PM

Your genes for sale: shouldn’t you get a return?

Personalised genetic testing has become increasingly popular with companies such as 23andMe offering a variety of tests that analyse a client’s genetic profile. There are, nevertheless, ethical concerns about business practices of several genomics companies.

Many of the genetic tests offered by genomics start-ups offer an assessment of one’s predisposition for age-related diseases such as Alzheimer's or Parkinson’s disease.

There are, however, laboratories across the country that are promising patients detailed information such as how they will respond to exercise, which foods they should eat, and even which types of wine they might prefer.

Dr Eric Topol, a cardiologist and professor of genomics at Scripps Research Institute in California, said there was a great potential value in consumer genomics tests, particularly with services like those developed by Geisinger, Invitae and Sema4 that are backed by strong data. But he cautioned that there was not enough evidence for many of the genetic claims being made about exercise and nutrition. He worries that many people would not be able to distinguish the services that are scientifically rigorous from those that are not.

“There’s this mixture of some that have real solid footing and then some that have zero footing,” Dr Topol told the New York Times.

Controversy has also arisen surrounding the sale of aggregated genetic data by genomics companies to researchers and the pharmaceutical industry. In 2015, for example, Forbes reported that Genentech paid $60 million for the whole genome sequencing data of 3000 customers of 23andMe with Parkinson’s disease.

Speaking with the New Scientist, University of Exeter genetics researcher Tim Frayling questioned whether consumers should receive a “micropayment” in exchange for the use of their genetic data:

“I’d hope to have a robust marketplace that gives you the opportunity to sell your own data,” he says. “If a drug [developed using your genetic information] gets sold, there’s no reason why you shouldn’t receive a micropayment.”

23andMe allow clients to opt-in to having their data used in research, and currently 80% of clients do. 

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October
07
  10:48:00 PM

Embryo gene-editing in Canada: Ethicists urge caution

Two Canadian ethicists have defended their country’s moratorium on embryo gene-editing experiments, arguing that it reflects international consensus on the ethics of germline editing.

Writing in Impact Ethics, Francois Baylis of Dalhousie University and Alana Cattapan of the University of Saskatchewan describe current Canadian law -- which prohibits altering “the genome of a cell of a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants” -- as in line with current “international standards”.

“the prohibition on editing the human genome is consistent with international standards...Article 13 of the Oviedo Convention stipulates that: “An intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants””.

Baylis and Cattapan also argue that extending public consultation is needed before we permit the use of experimental technologies:

“even if international standards were different, the new possibilities for heritable modification require ongoing, meaningful public dialogue about a wide range of ethical and social issues...we are a very long way away from being ready to amend [the law] to remove the prohibition of making genetic alterations that can be passed on to future generations.”

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October
07
  10:41:00 PM

An AI alternative to organised religion

Tired of organised religion? Maybe you should join a Silicon Valley religious start-up.

Former Uber exec Anthony Levandowski, for example, has registered a non-for-profit religious organisation in California, going by the name of Way of the Future. According to Wired, Way of the Future aims to “develop and promote the realization of a Godhead based on artificial intelligence and through understanding and worship of the Godhead contribute to the betterment of society”.

Levandowski’s De ex Machina religion is just one of several quasi-religious organisations now operational in the Californian tech belt.

“The church does a terrible job of reaching out to Silicon Valley types,” says Christopher Benek, a pastor in Florida and founding chair of the Christian Transhumanist Association. Benek argues that  AI can participate in Christ’s redemptive purposes,” he said, by ensuring it is imbued with Christian values. “Even if people don’t buy organized religion, they can buy into ‘do unto others’.”

Self-proclaimed transhumanist visionary Zoltan Istvan argues that religion and science converge conceptually in the singularity.

“God, if it exists as the most powerful of all singularities, has certainly already become pure organized intelligence,” he said, referring to an intelligence that “spans the universe through subatomic manipulation of physics”.

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September
30
  9:53:00 PM

Are drug addicts responsible or helpless victims of an illness?

Who is responsible for drug addiction: your brain or you? This momentous question will be decided in the Massachusetts Supreme Judicial Court soon.

Addict Julie Eldred violated her parole by taking drugs. A judge derided her plea for compassion as “just a bunch of excuses” and sent her off to jail. The same thing happened again three years later when she again took drugs while on parole.

Now, according to a report in the Boston Globe, she is suing the state government, alleging that “the court violated her constitutional rights by ordering her to remain drug free, arguing that her substance use disorder makes it virtually impossible for her to control her drug use through sheer will”.

Her lawyers maintain that:

“Drug addiction, we now know, is a chronic brain disease whose hallmark feature is an inability to exert control over the impulse to use drugs despite negative consequences. Punishing relapse is ‘clinically contradicted.’ As this case makes clear, it is also morally indefensible.”

The response of the State Attorney-General has been to paint drug addiction as a matter of choice. It is wrong to compare addiction to diseases like asthma, hypertension or cancer. “The drug free and testing conditions of probation are constitutional because they are based on the proven assumption that most people with drug addiction retain the ability to exercise choice,” wrote Assistant Attorney General Maria Granik.

The medical profession is divided, but the American Medical Association and the Massachusetts Medical Society (which publishes the New England Journal of Medicine) believe that addiction is a chronic illness caused by a number of environmental, behavioural and biological factors.

Other doctors argue that addicts respond to incentives – like the threat of being jailed or losing a job. “The threat of being incarcerated, or re-incarcerated or sanctioned in some way, gives the addict an extremely powerful incentive to stay clean,” wrote three psychologists and a psychiatrist in an amicus brief.

Moreover, the thinking behind these claims, which often rests on what we have termed “unrefined biological determinism,” will support claims that the very concept of responsibility that is foundational for criminal law and our society is unjustified. We are mindful of the dangers of catastrophic thinking, but we fear that granting the probationer’s petition may have the effect of starting to pry open the lid of Pandora’s Box.

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September
30
  9:44:00 PM

Medical staff punished after privacy breach in Pennsylvania hospital

Respect for patients’ privacy is a work in progress, to judge from an incident in UPMC Bedford Memorial Hospital, in Pennsylvania. On December 23 last year surgeons were removing a “foreign body” from the genitals of a female patient. Somehow other staff were notified of this novelty and the operating theatre became so crowded that “it looked like a cheerleader type pyramid,” according one witness quoted in a state government report.

Worse still, operating room staff took pictures with their mobile phones and circulated them to other staff.

The Pennsylvania Department of Health declared that the hospital had violated several standards:

  • Failing to protect a patient's confidentiality and privacy
  • Allowing people not involved in the patient's care into the operating room
  • Allowing them to use personal devices to take pictures of the patient

As a result of an investigation, one doctor was suspended for 28 days and another for a week. The surgical services nursing director was dismissed.

When the incident came to light, hospital staff tried to excuse it. Mobile phones had to be used because the operating room camera was broken. It then turned out that it was not broken, but it was complicated to use.

On staff member recounted "it was a couple days before Christmas, I received a picture text on my phone from Anesthesia, made a comment and moved on. We do pass on interesting stuff..."

Bioethicist Craig Klugman commented on the issue in the bioethics.net blog:

... taking pictures of patients without their consent and using their vulnerable bodies as a source of amusement or entertainment is a gross violation of ethics. A patient is not a carnival sideshow exhibit. This is a human being who has placed her or his trust and well-being in the hands of the medical professionals. There is an ethical and legal expectation of confidentiality. These actions are nothing less than a violation of trust...

While having a policy and providing education are necessary steps, they are not sufficient. The culture of medicine which tolerates seeing patients as objects is the core of the problem and needs to change.

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September
30
  9:42:00 PM

Medical aid urgently needed in Myanmar

The persecution of the Rohingya population in Myanmar has a decades long history. Yet alleged ethnic cleansing by military forces in recent weeks has prompted international observers to call for immediate international action and massive humanitarian support.

The notorious Tatmadaw national army has allegedly burnt hundreds of Rohingya villages in the past month, leading more than 500,000 residents of the region (half of them children) to flee over the border to Bangladesh. Those who have crossed the boarder lack basic food and medical aid, and those still in the country face a dire threat from the hostile military forces. The Rohingya remaining in Rakhine have been cut off from crucial humanitarian aid since August 25, when Rohingya militant raids triggered the military backlash that plunged the region into crisis.

The Muslim Rohingya in Rakhine are denied citizenship and are instead branded "Bengalis" - or illegal migrants who do not belong in the Buddhist-majority country. Even before tensions escalated between the military and Rohingya insurgents, Muslim communities in Rakhine were receiving regular threats from local Rakhine Buddhists to leave the area.

The editors of The Lancet called this week for humanitarian support to be “urgently deployed to protect the very existence of a ravaged Rohingya population”:

“Bangladesh must be supported to manage the major humanitarian catastrophe that is unfolding with risks of infectious disease outbreaks, lack of basic water and sanitation, and exploitation of the population, especially of women and children (around 1000 unaccompanied minors).”
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Passport to Parenthood: Evidence and Ethics behind Cross-Border Reproductive Care
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Created in the Image of God: realities and challenges in caring for the human person
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Sponsored by the Linacre Centre for Healthcare Ethics, Oxford.


 upcoming events

Passport to Parenthood: Evidence and Ethics behind Cross-Border Reproductive Care
November 24, 2010, London
Progress Educational Trust asks whether fertility tourism is a problem or a solution.

10th World Congress of Bioethics
July 28-31, 2010, Singapore
Bioethics in a Globalised World

Created in the Image of God: realities and challenges in caring for the human person
April 30 - May 2, 2010, Montreal
AGM of Canadian Federation of Catholic Physicians’ Societies; featured speakers include Edmund Pellegrino and Margaret Somerville.

Consequences of the Bio-Medical Revolution
May 1, 2010, Biola University, La Mirada, CA
Helping nurses understand technological advances in health care and their ethical consequences.

Fertility, Infertility and Gender
June 16-18, 2010, Maynooth, Ireland (near Dublin)
Sponsored by the Linacre Centre for Healthcare Ethics, Oxford.


 upcoming events

Passport to Parenthood: Evidence and Ethics behind Cross-Border Reproductive Care
November 24, 2010, London
Progress Educational Trust asks whether fertility tourism is a problem or a solution.

10th World Congress of Bioethics
July 28-31, 2010, Singapore
Bioethics in a Globalised World

Created in the Image of God: realities and challenges in caring for the human person
April 30 - May 2, 2010, Montreal
AGM of Canadian Federation of Catholic Physicians’ Societies; featured speakers include Edmund Pellegrino and Margaret Somerville.

Consequences of the Bio-Medical Revolution
May 1, 2010, Biola University, La Mirada, CA
Helping nurses understand technological advances in health care and their ethical consequences.

Fertility, Infertility and Gender
June 16-18, 2010, Maynooth, Ireland (near Dublin)
Sponsored by the Linacre Centre for Healthcare Ethics, Oxford.


 upcoming events

Passport to Parenthood: Evidence and Ethics behind Cross-Border Reproductive Care
November 24, 2010, London
Progress Educational Trust asks whether fertility tourism is a problem or a solution.

10th World Congress of Bioethics
July 28-31, 2010, Singapore
Bioethics in a Globalised World

Created in the Image of God: realities and challenges in caring for the human person
April 30 - May 2, 2010, Montreal
AGM of Canadian Federation of Catholic Physicians’ Societies; featured speakers include Edmund Pellegrino and Margaret Somerville.

Consequences of the Bio-Medical Revolution
May 1, 2010, Biola University, La Mirada, CA
Helping nurses understand technological advances in health care and their ethical consequences.

Fertility, Infertility and Gender
June 16-18, 2010, Maynooth, Ireland (near Dublin)
Sponsored by the Linacre Centre for Healthcare Ethics, Oxford.


 upcoming events

Passport to Parenthood: Evidence and Ethics behind Cross-Border Reproductive Care
November 24, 2010, London
Progress Educational Trust asks whether fertility tourism is a problem or a solution.

10th World Congress of Bioethics
July 28-31, 2010, Singapore
Bioethics in a Globalised World

Created in the Image of God: realities and challenges in caring for the human person
April 30 - May 2, 2010, Montreal
AGM of Canadian Federation of Catholic Physicians’ Societies; featured speakers include Edmund Pellegrino and Margaret Somerville.

Consequences of the Bio-Medical Revolution
May 1, 2010, Biola University, La Mirada, CA
Helping nurses understand technological advances in health care and their ethical consequences.

Fertility, Infertility and Gender
June 16-18, 2010, Maynooth, Ireland (near Dublin)
Sponsored by the Linacre Centre for Healthcare Ethics, Oxford.


 upcoming events

Passport to Parenthood: Evidence and Ethics behind Cross-Border Reproductive Care
November 24, 2010, London
Progress Educational Trust asks whether fertility tourism is a problem or a solution.

10th World Congress of Bioethics
July 28-31, 2010, Singapore
Bioethics in a Globalised World

Created in the Image of God: realities and challenges in caring for the human person
April 30 - May 2, 2010, Montreal
AGM of Canadian Federation of Catholic Physicians’ Societies; featured speakers include Edmund Pellegrino and Margaret Somerville.

Consequences of the Bio-Medical Revolution
May 1, 2010, Biola University, La Mirada, CA
Helping nurses understand technological advances in health care and their ethical consequences.

Fertility, Infertility and Gender
June 16-18, 2010, Maynooth, Ireland (near Dublin)
Sponsored by the Linacre Centre for Healthcare Ethics, Oxford.


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