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Wednesday, March 20, 2019

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FROM THE EDITOR

A California family was outraged recently when their grandfather was told that he had very little time to live by a "robot", or rather, what the media described as a robot. In fact, it was a teleconference screen mounted on a robot lectern. I don't suppose that the distinction makes much difference. The elderly man's children and grandchildren were horrified by the cold detachment of the procedure. 

The hospital apologised, of course, but the incident is symptomatic of the impersonality which pervades our culture. Prodded on by our love affair with technology, human relations are being reduced to formal interactions. It may be overstating it to say that competence in face-to-face contact is a dying art -- but something is changing. To have a dozen Facebook "friends", for instance, is hardly the same as having a dozen friends. 

But an even more -- I was thinking of inserting the word "sinister"  but I won't -- application is the reduction of human sexuality to the twin and separable functions of recreation and reproduction. In an article below, British IVF pioneer Simon Fishel predicts that robots will handle the whole process of conception, from harvesting gametes to transferring embryos. 

It seems to me that defending humane relationships will be one of the key challenges to bioethics in the coming decades. 

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Michael Cook
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2019-03-13 12:45 PM
Scientists split over value of moratorium on editing the human germline
by | Mar 17, 2019
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tags: gene editing, germline modification

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Stem cell scientists have split over the future of genetic editing of the human germline. In a commentary in Nature several leading scientists have called for a global moratorium on heritable genome editing. This would not be a permanent ban but an international agreement not to greenlight germline editing leading to pregnancies “unless certain conditions are met”. The proposal was strongly backed by Francis S. Collins, the director of the US National Institutes of Health.

The proposal was motivated by the outcry following an experiment by Chinese scientist He Jiankui which resulted in two babies whose germline had been edited. It was subsequently learned that some Western scientists knew about his work and had even collaborated in it.

However, the names of a number of prominent scientists were conspicuous by their absence on the call for a moratorium.

One of the inventors of CRISPR, the revolutionary gene-editing technique, Jennifer Doudna of the University of California, Berkeley, told STAT that she supports “strict regulation that precludes use” of germline editing until scientific, ethical, and societal issues are resolved. “I prefer this to a ‘moratorium’ which, to me, is of indefinite length and provides no pathway toward possible responsible use.”

Similarly, Nobel laureate David Baltimore, of California Institute of Technology, Harvard Medical School Dean George Daley and Harvard biologist George Church do not want a moratorium. They believe that it cannot be enforced; that it is unclear how long it should last; and that it is unclear who has the authority to end the it.  

In fact, the scientists proposing the moratorium were by no means categorical about the fundamental question of the ethics of germline editing. “At this stage, no outcomes should be foreclosed,” they write. They seem to feel that it could go ahead, provided that it can be justified on the grounds of safety, efficacy, benefit, and societal support.

However, they do list a number of knotty ethical issues:

The societal impacts of clinical germline editing could be considerable. Individuals with genetic differences or disabilities can experience stigmatization and discrimination. Parents could be put under powerful peer and marketing pressure to enhance their children. Children with edited DNA could be affected psychologically in detrimental ways. Many religious groups and others are likely to find the idea of redesigning the fundamental biology of humans morally troubling. Unequal access to the technology could increase inequality. Genetic enhancement could even divide humans into subspecies.

Moreover, the introduction of genetic modifications into future generations could have permanent and possibly harmful effects on the species. These mutations cannot be removed from the gene pool unless all carriers agree to forgo having children, or to use genetic procedures to ensure that they do not transmit the mutation to their children.

The proposed moratorium to be imposed by governments on “any clinical use of human germline editing” would last five years. Thereafter clinical applications would be permitted provided that they fulfilled three conditions. These would be: a robust international debate; a well-informed judgement that the application is justifiable; and a social consensus.

It is essential to ensure that the public is consulted and informed. They conclude that:

Certainly, the framework we are calling for will place major speed bumps in front of the most adventurous plans to re-engineer the human species. But the risks of the alternative — which include harming patients and eroding public trust — are much worse.

Michael Cook is editor of BioEdge 

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Is it ethical to have children as climate Armageddon approaches?
by | Mar 17, 2019
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tags: childlessness, climate change, population control

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New York’s celebrity Democrat Alexandria Ocasio-Cortez recently told her 2.7 million followers on Instagram that it was a “legitimate question” to ask whether they should have children in an age of looming climate disasters.

“Our planet is going to face disaster if we don’t turn this ship around,” she said in a live video feed as she prepared dinner. “And so it’s basically like, there is a scientific consensus that the lives of children are going to be very difficult and it does lead, I think young people, to have a legitimate question. Ya know, should—is it okay to still have children?” 

She continued: “Not just financially because people are graduating with $20, 30, 100,000 of student loan debt so they can’t even afford to have kids in the house, but there’s also just this basic moral question, like, what do we do?”

“The whole premise of the Green New Deal,” she continued, “is that we’re screwed on climate. I’m sorry to break it to you,” she said. “When it comes to climate in particular, we’re actually screwed. There is a global threat to the planet.” 

Ms Ocasio-Cortez is echoing the thoughts of anti-natalist activism, which is represented by a website, Conceivable Futures, and a philosopher, Travis Rieder, a bioethicist at the Berman Institute of Bioethics at Johns Hopkins University.

Conceivable Futures says that the “climate crisis is a reproductive justice crisis”:

How do you protect your health and your children in an increasingly dangerous and toxic environment? How do you decide whether or not to have a baby when a healthy and stable future is increasingly jeopardized? Even with access to fertility regulation, no one makes reproductive ‘choices’ freely in the face of so many economic and environmental pressures.   

Dr Rieder points out that creating babies is a deeply ethical decision: we "inflict the child on the world, and inflict the world onto the child". Each child adds to the pressure on the environment and an increasingly toxic environment could make the child’s future miserable. He pointed out a couple of years ago that procreation morally questionable:

I, like many philosophers, believe that it’s morally better to make people happy than to make happy people. Those who exist already have needs and wants, and protecting and providing for them is motivated by respect for human life. It is not a harm to someone not to be created. In fact, I would argue that it is more “anti-life” to prioritize creating new life over caring for, or even not harming, those who already exist.

Michael Cook is editor of BioEdge

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The robot who will conceive your baby
by | Mar 17, 2019
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tags: ivf

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British IVF pioneer Simon Fishel has just published an autobiographical account of the growth of artificial reproductive technology, Breakthrough Babies. In an article in the Daily Mail he gives a startling account of future developments.

At the moment he has launched the first company to create technology to delay menopause. “By extracting a piece of ovarian tissue when a woman is younger and transplanting it back again later, we now know we can put off the menopause by at least ten years.”

But his most daring prediction is entrusting IVF to robots:

Not too long ago it would have been the stuff of science fiction, but modern robotics only requires economies of scale for this to actually happen.... It sounds terrible to say, but a patient is lucky if she has a good obstetrician and unlucky if she doesn’t.

A robot, however, never has a bad day. Nor does it sneeze or need to pee at an inopportune time, or have to pick up the phone to his or her spouse between cases because there’s an urgent problem at home. Its treatment will be consistent — and it will achieve better results in consequence.

Because of the global development and need for IVF, I’d say the prospect of a robot extracting eggs, injecting sperm, selecting the most viable embryos and then transferring them is feasible, if not imperative.

Dr Fishel anticipates a huge outcry at his proposal for further depersonalising IVF – but he has spent most of his life fending off public outrage. “This aversion to risk has led to what I call the paradox of IVF,” he writes:

To develop something innovative that will help people in a way that’s not been done before, we need to do new things. These new things may not work, and they might even offend people. The regulator doesn’t like that uncertainty. But how can we know if they work on humans, unless we try them on humans? You can see the catch-22 situation I’ve worked in for most of my career.

Here’s a thought: in regulated countries such as the UK, IVF couldn’t be invented today. The regulatory bodies that govern medical research would forbid it.

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Spain puts prison psychology experiment on hold
by | Mar 17, 2019
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tags: informed consent, prisoners

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The Spanish Interior Ministry has put a halt to psychology experiments on violent prisoners which involved stimulating the prefrontal cortex with a mild electric current. Researchers wanted to see if the technique, transcranial direct current stimulation, or tDCS, makes the prisoners less aggressive.

According to a pilot study whose results were published in Neuroscience in January, it seems to work. Prisoners who received tDCS reported that they felt less aggressive; prisoners in a control group felt unchanged.

But when New Scientist reported this week that the Spanish scientists would be doing a follow-up experiment with 12 prisoners after receiving approval from the Spanish government, prison officials, and a university ethics committee, the government backtracked and halted the experiment.  

Researchers have high hopes for tDCS. In the long term, Andrés Molero-Chamizo, a psychologist at the University of Huelva, told Vox that it could “make life better for inmates, both by making prison a less violent environment for those in it and by serving as a method of offender rehabilitation that’ll eventually allow inmates to get out.”

However, many people, including, it seems, the current Spanish government, have qualms about experimenting on prisoners. True, all of the subjects in this experiment signed a consent form. However, they live in a coercive environment and they may feel that participation will get them better treatment or a reprieve. Under these circumstances the meaning of “informed consent” for inmates could be stretched to the breaking point. Furthermore, if prisoners are less violent, governments will have less incentive to improve the conditions of their incarceration.

“To me this is a classic and genuinely difficult ethical dilemma,” Roland Nadler, a neuroethicist at the University of Ottawa, told Vox, “whereby the availability of a technological solution that promises immediate reduction in avoidable suffering also poses a risk of draining the moral urgency out of correcting a more systemic problem.”  

Michael Cook is editor of BioEdge 

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Bedside manner 101: how to deliver very bad news
by | Mar 17, 2019
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tags: bedside matter, end-of-life care

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A California family was shocked when Ernest Quintana, a 78-year-old man in intensive care, received the news that doctors could do no more for him and that he would die soon via a robot displaying a doctor talking to him on a television screen.

His granddaughter was with him and filmed the situation. Mr Quintana died two days later.

“If you’re coming to tell us normal news, that’s fine, but if you’re coming to tell us there’s no lung left and we want to put you on a morphine drip until you die, it should be done by a human being and not a machine,” his daughter Catherine Quintana said.

Michelle Gaskill-Hames, of of Kaiser Permanente Greater Southern Alameda County, apologised but said that the incident was very unusual. She said that telemedicine was quite useful and that normally a nurse or a doctor would be in the room during the remote consultation. “The evening video tele-visit was a follow-up to earlier physician visits,” she said. “It did not replace previous conversations with patient and family members and was not used in the delivery of the initial diagnosis.”  

“That’s not something you want to ask the loved one of a patient to do in that kind of situation,” Alex John London, of Carnegie Mellon University, told The Verge. “It created a real distance between the family and the clinician, which, instead of the empathy that you want out of this kind of interaction, further depersonalized it.”

He emphasised that this technology could be very useful, especially in remote settings. But this was not one of them. “This is exactly what people are afraid of. People are afraid that compassion in the health system and human-to-human relationships are going to be replaced with sanitized, mechanized, factory-medicine — where information is delivered without compassion, where people are left to their own devices to deal with the human element of birth, death, sickness, disease.   

Michael Cook is editor of BioEdge

  

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Memo to hospitals: prison wardens do not own their prisoners
by | Mar 17, 2019
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tags: end-of-life care, informed consent, prisoners

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Hospitals should check whether a person issuing a do-not-resuscitate (DNR) order has been authorised to do so. This seems to be the hard lesson to be learned from a lawsuit against the warden of St Clair Correctional Facility in Alabama.

On January 6, 2014, a prisoner, Marquette F. Cummings, Jr, was stabbed in the eye by another inmate. He was airlifted to University of Alabama at Birmingham Hospital, in a critical condition.

Although the hospital told Mr Cummings’s mother that her son only had 10% of his brain capacity, she thought that he was responding to simple commands like “blink if you can hear me”.

Even though family members were present at the hospital, the prison warden, Carter Davenport, instructed doctors not to take “heroic measures” to save Mr Cummings life. The hospital thereupon issued a DNR order. Later on, ignoring protests from the prisoner’s family, Mr Davenport ordered that he be removed from life support. Hospital staff told the family that because the State had legal custody of Mr Cummings, whether or not he should die was the warden’s decision. Mr Cummings died on January 7.

Ms Gaines and Cummings’s estate filed a lawsuit against Mr Davenport, alleging he had showed deliberate indifference to Mr Cummings’s medical needs and that he did not have the authority to issue a DNR order.

This seems to have succeeded. “Nothing in the [Alabama] Act empowered Davenport, as a prison warden, to act as the surrogate of a dying inmate,” the Eleventh Circuit Court of Appeals wrote in a decision last October. “The Act is fatal to Davenport’s defense of qualified immunity.” (The case was only reported earlier this month).

Michael Cook is editor of BioEdge

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When research participation pays, some people lie
by | Mar 17, 2019
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tags: research ethics

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Offering compensation can be an important tactic to attract potential participants for enrolment in research studies, but it may come at a cost. A new study from the Perelman School of Medicine at the University of Pennsylvania found that up to 23% of respondents lied about their eligibility to participate in a survey when they were offered payment, even small amounts.

Anecdotal evidence and common sense suggest that offering money may encourage participants to lie about their eligibility or other aspects of study participation in order to secure payment. But few studies have investigated this intuition. The new findings, published in JAMA Network Open, suggest the practice may be pervasive.

A total of 2,275 respondents participated in a nationally representative, randomized survey on flu vaccination status. One study group lacked motivation to lie about whether they had recently had a flu shot because their eligibility didn't depend on it. Their reported rates of flu vaccination were therefore used to determine the true rate of vaccination in the study population. Other groups were offered $5, $10, or $20 for participation and were told they were eligible only if they had (or in some groups, had not) received a recent flu shot. If no one was lying, all study groups would have reported about the same rates of flu vaccination.

"Instead, we found evidence of significant deception by participants who were not eligible, but claimed they were in order to be able to join the study," said first author Holly Fernandez Lynch. "This type of behaviour not only undermines a study's integrity and its results, but in a study with eligibility criteria that are intended to protect participants, it also has the potential to put participants at risk."

One of the study's most interesting findings is that more money wasn't associated with higher rates of deception. "This suggests that keeping payments low will not necessarily prevent deception," said study co-author Steven Joffe. "It also suggests that higher payments may encourage recruitment without posing a greater risk to the study's integrity."  

Michael Cook is editor of BioEdge

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Back to the source: the Hippocratic Oath re-examined
by | Mar 15, 2019
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tags: hippocratic oath

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Over the centuries the Hippocratic Oath has expressed the ideals of the medical profession, although nowadays other versions have supplanted it for graduating medical students– if they take any oath at all. If taken literally the Oath is an anachronism. Who today “swears by Apollo Physician, by Asclepius, by Hygieia, by Panacea, and by all the gods and goddesses”?

But T. A. Cavanaugh, a philosopher at the University of San Francisco, argues in his recent book Hippocrates' Oath and Asclepius' Snake: The Birth of the Medical Profession that the Oath is still relevant in establishing the fundamental ethics of the medical profession—to help and not to harm the sick.

Steeped in Hellenic culture and philosophy, Cavanaugh argues that deliberate iatrogenic harm, especially the harm of a doctor choosing to kill (physician assisted suicide, euthanasia, abortion, and involvement in capital punishment), amounts to an abandonment of medicine as an exclusively therapeutic profession.

Medicine as a profession, Cavanaugh contends, necessarily involves declaring the good one seeks and the bad one seeks to avoid on behalf of the sick. The idea of taking an oath implies that doctors set boundaries around what they are permitted to do. Medicine must reject the view that it is purely a technique lacking its own unique internal ethic.

Michael Cook is editor of BioEdge.

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