Medical aid in dying comes up for a vote in England

 The upcoming vote on legalizing medical aid in dying in England and Wales has attracted controversy along lines that will be familiar to readers of this blog, concerning both fundamental values and slippery slopes.  But a comment by British Cardinal Vincent Nichols introduces an argument that I hadn't heard stated so clearly before, about the religious significance of suffering.  But first, here's the background, from the BMJ.

MPs set for historic vote on bill to legalise assisted dying in England and Wales,  by Clare Dyer, 07 October 2024  BMJ 2024;387:q2191

"A bill to legalise assisted dying for terminally ill people in England and Wales is expected to be introduced in the House of Commons on 16 October.

...

"Hundreds of terminally ill people from the UK have travelled to the Swiss clinic Dignitas to end their lives. But friends and relatives who help them are at risk of prosecution for assisting a suicide, which carries a maximum prison sentence of 14 years.

...

"Surveys of public opinion show that about two thirds of the public support allowing assisted dying. The BMA dropped its opposition in 2021 to take a neutral position on a change in the law."

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And here is a story about objections from a religious point of view, from the senior Catholic official in England.

UK’s top Catholic bishop urges faithful to lobby MPs to oppose assisted dying  by Hayden Vernon Sat 12 Oct 2024 

"The archbishop of Westminster continued: “The suffering of a human being is not meaningless. It does not destroy that dignity. It is an intrinsic part of our human journey, a journey embraced by the eternal word of God, Christ Jesus himself. He brings our humanity to its full glory precisely through the gateway of suffering and death.”

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Earlier:

Friday, March 1, 2024

Medical aid in dying--the ongoing debate in Britain

Opt-out organ donation in Britain

 Opt-out is not a panacea for deceased organ donation in countries in which family consent is required for donation.

More families refusing to donate relatives' organs  by Lucy Parry, BBC 

"An "opt-out" law was introduced in Wales in 2015, followed by England in 2020, Scotland in 2021 and Northern Ireland in 2023.

"It means all adults are considered to have agreed to be potential organ donors when they die, unless they have recorded a decision not to donate or are in an excluded group.

"The change in law was designed to increase the number of organs available for donation.

"But ultimately families have the final say and the consent rate fell to 61% in the 12 months to April, from 69% four years ago."

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HT: Frank McCormick

Related:

Monday, July 22, 2024

Don't take "No" for an answer in deceased organ donor registration (a paper forthcoming after ten+ years)

Britain's Infected Blood Inquiry Report: Prime Minister's apology, and the benefits and perils of hindsight

 After the publication  yesterday of Britain's Infected Blood Inquiry Report, the UK's Prime Minister apologized to the nation. Here's the BBC story:

PM apologises after infected blood scandal cover-up  By Nick Triggle and Jim Reed, BBC News

"Prime Minister Rishi Sunak says he is truly sorry for the failures over the infected blood scandal, calling it a decades-long moral failure.

"He was responding to the public inquiry's report into the scandal, which has seen 30,000 people infected from contaminated blood treatments.

"It found authorities covered up the scandal and exposed victims to unacceptable risks.

"Mr Sunak described it as a "day of shame for the British state".

...

""Today's report shows a decades-long moral failure at the heart of our national life. I want to make a wholehearted and unequivocal apology."

"He said the attitude of denial was hard to comprehend and was to "our eternal shame".

...

Labour leader Sir Keir Starmer apologised too, describing it as one of the "gravest injustices" the country had seen and saying victims had "suffered unspeakably".

***********

I've now had the opportunity to read some of the (2000 page) report, and it leaves me in two minds.  On the one hand, as summarized in various news stories about the report, it deals with a long history during which British clinicians could have responded faster to growing evidence about hepatitis and HIV in the blood supply, and the various British governing coalitions could certainly have acknowledged earlier and more fully that people had been infected.

On the other hand, some of the harms to people who were infected by blood-borne pathogens are clearer in hindsight than they were at the times that they began to occur.

The cases of hemophila patients (many of them children, many of them at Treloar's, a school for disabled children including many with severe hemophilia) are particularly jarring.  Many of those children are no longer living, having been infected with HIV in the  1980's, before it was positively identified as the cause of AIDS (but after there was evidence that something in the blood carried the infection). The clotting factors (extracted from plasma pooled from many donors) that were being explored to treat hemophilia patients, are  (today standard treatments for hemophilia, but in the period covered by the report they were subjects of research, and were, tragically, infected with HIV, and hepatitis C before it's virus had been identified.

Here's a passage (from Vol. 1, p23) of the report that crystallizes why I think it's easier to assess blame in hindsight than it was at the time: (NANBH stands for non-A non-B Hepatitis, as Hep C was still something of a mystery.)

"By 1978 there were a number of reports showing that NANBH was linked to persistent liver damage. Amongst them was a paper published in September 1978 in The Lancet, authored by Dr Eric Preston and colleagues in Sheffield. In his oral evidence to the Inquiry, Dr Mark Winter said that this paper “blew out of the water instantly the idea that this [NANB hepatitis] was nothing to worry about because their study showed, as did other studies, that most of these patients had very significant chronic liver disease”. He thought doctors had been unwilling to think that NANBH might be a problem, because factor concentrate had brought “such spectacular benefits”: it was this reluctance to face the facts described in scientific journals that had prevented earlier acceptance of the seriousness of the problem."

The report also dwells on the difficulties that the UK faced in becoming self-sufficient in non-commercial plasma and clotting factor from domestic sources.  But self sufficiency is a world-wide problem today in states that depend on unpaid domestic donors. So it's not clear how culpable the British blood services should be considered on that account.

And it's a complicated question, because some of the U.S. commercial suppliers started heat treating their plasma to effectively destroy many pathogens, before this became common in the U.K.

The report states (Vol 1, p49)

"Some clinicians were reluctant to embrace commercial heat-treated products. There was as yet little direct evidence of how reliable the claims about commercial heat-treated products were in practice. Although there was no evidence of side-effects after a year of use in the US, heat-treated commercial products were not licensed for use in the UK until early in 1985. It is not difficult to see why clinicians may have preferred to wait for domestic product rather than change their treatment practices. Further, commercial products were believed to be more likely to carry hepatitis than domestic ones. Understandable though this reluctance may have been, it did not excuse continued use of unheated products beyond a short period into 1985."

So, British physicians were caught between desire for domestic plasma (from unpaid donors, which they believed was safer), and reluctance to use U.S. commercial plasma as it became the safer alternative.  And British plasma processors waited until 1985 to start producing their own heat treated plasma products. The results were tragic, but (unlike some of the later delays and evasions that the report spells out) I don't see that there is in every instance a clear case of blame.

The chair of the Infected Blood Inquiry is Sir Brian Langstaff , "a former judge of the High Court of England and Wales."  Judges have experience at hearing evidence, and may have some professional inclination to explain events in terms of guilt.  Not that there isn't plenty to apologize for.

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Here are all my posts on blood plasma.

Britain's Infected Blood Inquiry Report published today

 The UK commissioned a report on infections in its blood supply in the 1970's and 80's, and on the government's belated responses during and afterwards, as some 3,000 people died from HIV and other infections.  It's a long and complicated report, which came out today, and is available at

Infected Blood Inquiry Report

I've started to read it, and hope have more to say in a few days.  (It condemns many past decisions about maintaining the blood supply, providing medical care, and then failing to acknowledge past harms, which the current report is particularly aimed at addressing.)

In the meantime, here are some news reports.

From the BBC:

NHS and government covered up infected blood scandal By Nick Triggle and Jim Reed, BBC News

From the NYT:

Report Finds ‘Catalog of Failures’ in U.K. Contaminated Blood Scandal - A six-year inquiry found that the deaths of about 3,000 people and the infection of tens of thousands of others could have mostly been avoided.  By Aurelien Breeden  May 20, 2024

Sperm donation from Denmark to the UK and elsewhere

 The Daily Mail has the story:

'They invaded us once by boat and now they're doing it with sperm!' Why hundreds of British women are giving birth to 'Viking babies' conceived with Danish donors

"These are the main Danish export products - beer, Lego and sperm!"'

"So why are so many British women going Danish? According to Dr Alan Pacey, a fertility expert at the University of Sheffield, one of the reasons is a shortage of homegrown sperm.

'We don't have enough donors in the UK to meet the national need,' he explains. 'We don't have the clinic infrastructure sufficient to recruit enough donors - even when men want to donate.

...

"'The NHS is used to treating patients and you get a fee for treating patients. You don't get a fee for screening a donor that you may not ultimately accept.'

"Compounding the problem for British clinics is the 2005 law that forces men to waive their anonymity, meaning sperm donors face the prospect of offspring turning up on their doorstep once they reach the age of 18.

"Nevertheless, although Danish clinics, among them the world's largest sperm bank, Cryos, cannot sell semen from anonymous donors to British women, business is booming thanks to the huge numbers of local men happy to sign up anyway.

...

"Experts such as Laura Witjens, CEO of the National Gamete Donation Trust, say the excellent customer service deployed by Copenhagen's sperm banks has also contributed to the Viking baby boom.

'It's much easier for a British clinic to order sperm from Denmark which is Fed-exed the next day than to try and recruit their own donors and all the hassle that goes with them,' says Witjens.

'The Danish model is customer service driven. It knows how to deal well with customers, it has a good website, and that's what we could do in the UK as well - it's not rocket science.'

HT: Mario Macis

Proposed age-adjusted smoking ban in the U.K.

 The BBC has the story, about a proposal to ban smoking for everyone currently under the age of 18. (What could go wrong?)

What is the UK smoking ban, how will it work and when will it start? By Aurelia Foster, BBC News

"Prime Minister Rishi Sunak effectively wants to ban smoking in the UK.

MPs have voted to back the government's plans to create a "smoke-free generation", and reduce the number of smoking-related deaths.

What is the smoking ban?

The restrictions will apply to the sale of cigarettes in the UK rather than the act of smoking itself.

Under the new law, each year the legal age for cigarette sales - currently 18 - will increase by one year.

It means that people born in or after 2009 will never be able to legally buy cigarettes, leading to an effective ban.

The law will not affect those who are allowed to buy cigarettes now.

To crack down on under-age sales, the government says it will introduce £100 on-the-spot fines for shops in England and Wales which sell tobacco and vapes to under-age people.

Local authorities will retain the proceeds to reinvest into enforcement of the law.

This would be on top of £2,500 fines that courts can already impose.

The government says it will spend £30m on enforcement, which will include tackling the availability of cigarettes on the black market.

The new rules will apply in all duty free shops in the UK, but anyone buying cigarettes abroad would be able to bring them back to the UK as long as they were legally acquired elsewhere.

The government aims to have the new system in force by 2027.

Mr Sunak wants to work with the governments of Wales, Scotland and Northern Ireland to introduce the legislation across the UK."

HT: Oğuzhan Çelebi

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Earlier: 

Thursday, March 14, 2024

New Zealand repeals anti-smoking law that would have prevented tobacco sales to anyone born after 2008

Medical aid in dying--the ongoing debate in Britain

 The Guardian has this opinion piece, connected to the current debate in England about medically assisted dying, and the slippery slope:

I’m glad the debate on assisted dying is forging ahead. But few understand why it frightens so many  by Frances Ryan

"On Thursday, MPs published the findings of a 14-month inquiry into assisted dying. The inquiry – which attracted more than 68,000 responses from the public – made no conclusive statement but instead collected evidence as a “significant and useful resource” for future debates.

That debate is no longer abstract. Legislation is making its way through the parliaments of Scotland, Jersey and the Isle of Man that, if passed, would enable competent adults who are terminally ill to be provided at their request with assistance to end their life.

...

"And yet it also feels a disservice to pretend that any of this is simple or that giving autonomy to some would not potentially harm others. It is deeply telling that among the many voices calling for a new assisted dying law, I have heard no human rights groups, celebrity or politician mention concerns – as advocated by many disability activists – that a law change could lead to disabled people being coerced into euthanasia, or feeling they had no other option.

We only need look to the countries that have legalised assisted dying in recent years to see these fears realised. One study reported the euthanasia of a number of Dutch people who were said simply to have felt unable to live with having a learning disability or autism. Many included being lonely as a key cause of unbearable suffering.

...

"This is not to say that the UK shouldn’t go down the path of legalising assisted dying, but we must at least do so with eyes wide open. The right to die does not exist in a vacuum: it fundamentally alters the doctor-patient relationship, and risks making members of society who are already vulnerable that little bit more insecure. Perhaps that is a price worth paying to end some terminally ill people’s suffering. Perhaps it is too much to ask. There are no black and white boxes to tick labelled “right” and “wrong” – just the messy, painful grey of being human.

In the coming months, politicians will correctly dedicate hours to discussing the right to a good death. Imagine, though, if they were to give equal attention to the right to a good life: from building social housing, exploring a basic income, investing in mental and physical health services, to – as the inquiry recommends – funding universal coverage of palliative care and more specialists in end-of-life pain."

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Earlier:

Friday, January 12, 2024

Medical aid in dying, and slippery slopes--the debate in Britain

Medical aid in dying, and slippery slopes--the debate in Britain

 The Oxford blog Practical Ethics considers medical aid in dying (MAID), and the slippery slope arguments that accompany current debates on the subject in Britain.

Medical assistance in dying: what are we talking about? By Alberto Giubilini, Oxford Uehiro Centre for Practical Ethics

"Medical assistance in dying  – or “MAiD”,  to use the somehow infelicitous acronym – is likely to be a central topic in bioethics this year. That might not be true of bioethics as an academic field, where MAiD has been widely discussed over the past 40 years. But it is likely true of bioethics as a wider societal and political area of discussion. There are two reasons to think this.  First, the topic has attracted a lot of attention the last year, especially with “slippery slope” concerns around Canada’s policies. Second, MAiD has recently been in the news in the UK, where national elections will take place in 2024.  It is not hard to imagine it will feature in the heated political polarization that always accompanies election campaigns

...

"Canada is often taken as the best example in support of ‘slippery slope’ arguments against legalizing MAiD. According to these arguments, even assuming MAiD was acceptable in some form, legalization would open the door to clearly wrong or problematic practices down the line. For instance, legalizing physician-assisted suicide in cases of “unbearable suffering” for someone whose death is reasonably foreseeable in the short term might lead to relaxing our attitudes towards MAiD for those suffering only from mental illness. In the bioethics literature, slippery slope arguments against MAiD have often been put forward and traditionally been dismissed as fallacious, overly cautious, or easily addressable (for an overview and a critical appraisal, see Fumagalli 2020).  However, contrary to the prevailing view, they are not necessarily fallacious in nature (Walton 1992). To many people, Canada is a case in point, calling for a more nuanced take.

"Canada started off by decriminalizing medical assistance in dying in 2016. In 2019, the Superior Court of Quebec found the “reasonable foreseeability of natural death” unconstitutional as an eligibility criterion for MAiD. The criterion was removed in 2021, making MAiD available for patients without terminal illness. From March 2024, patients suffering solely from mental illness will also be able to legally access MAiD. According to Government data, nearly 45,000 people died through MAiD in Canada from 2016 to 2022. Between 2020 and 2022, the number of requests for MAiD increased on average by 28% per year. At the same time, the number of patients found ineligible consistently declined from 8% in 2019 to 3.4% in 2022.

...

"One question is about whether suicide is morally permissible. As mentioned, many religious  and non religious views consider suicide in most cases morally impermissible. However, the moral impermissibility of suicide is not a decisive reason against legalizing MAiD. More important is whether suicide is a right and, if so, what type of right it is. That is a different type of question, because arguably we often have the right to do morally wrong things (Waldron 1982). I might have a right to kill myself even if suicide is morally wrong.

...

"I have not provided any answer to any of these questions here. I just want to point out that some of the differences in ethical and religious views about suicide or about the right to end one’s own life are less relevant to a debate on MAiD than one might initially assume.

"At the same time, many concerns around slippery slopes are more relevant than one might initially assume. As a matter of fact and of logic, MAiD legislations tend to expand by extending their eligibility criteria. When debating MAiD legislations, we need to ask if we are prepared for that."

Medical aid in dying considered in Britain, and evolving in Canada

The Guardian has the story about England and Wales, and the NYT has a story on Canada.

Here's the Guardian:

Two former health secretaries join calls for new law on assisted dying

Senior Conservative and Labour figures said they would back changes to legislation on the issue in England and Wales.  by Michael Savage

"Two former health secretaries on Saturday night became the latest senior figures to join the growing demands for a new attempt to legalise assisted dying, as a prominent Tory said he is willing to champion the legislation in parliament.

"With both former Conservative minister Stephen Dorrell and Labour’s Alan Milburn stating they back changing the law in England and Wales, the Observer understands that a Labour government would make time and expert advice available for an assisted dying bill should MPs back it in a free House of Commons vote.

"The news comes as campaigners hope to hold a new vote on the issue early in the next parliament, almost 10 years after the last attempt to alter the law. Kit Malthouse, a former cabinet minister, said he was “absolutely” prepared to front a new private member’s bill on the matter.

...

"Doing nothing is not a passive choice. Leaving the law as it is will consign many thousands of people who may want a different end to a horrible death.”

...

"Milburn, who served as health secretary under Tony Blair, said: “When people today expect to have control over so many aspects of their lives, it feels paradoxical that we are denied the same about how we want to die. It’s perhaps the most important decision any of us can make. To deny that choice feels increasingly anachronistic. The time has come for a free vote in parliament on the issue.”

...

"However, other senior figures such as Michael Gove have expressed doubts about any change.

"Critics of an assisted dying law have also warned about the difficulties in defining who is eligible, the danger of people being pressured into a decision and subsequent attempts to widen the law.

"Alistair Thompson, a spokesperson for Care Not Killing, a group that opposes assisted dying, pointed to polling that suggested public support for assisted dying may have actually fallen since the mid-1990s.

"He also raised questions about the effects of the drugs used for the process in Oregon and said the law would be widened. “As we saw in the Netherlands and Belgium, limits on who qualifies for an assisted death have been swept away,” he said.

“At a time when we have seen how fragile our healthcare system is, how underfunding puts pressure on services, when up to one in four Britons who would benefit from palliative care aren’t receiving it, and when our nation’s hospices are facing a massive shortfall in their income, I would suggest this should be the focus of attention, rather than discussing again this dangerous and ideological policy.”

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And here's the NYT on the controversy in Canada:

Death by Doctor May Soon Be Available for the Mentally Ill in Canada. The country is divided over a law that would allow patients suffering from mental health illnesses to apply for assisted death.  By Vjosa Isai  Dec. 27, 2023

"Canada already has one of the most liberal assisted death laws in the world, offering the practice to terminally and chronically ill Canadians.

"But under a law scheduled to take effect in March assisted dying would also become accessible to people whose only medical condition is mental illness, making Canada one of about half a dozen countries to permit the procedure for that category of people.

...

"There is still uncertainty and debate over whether assisted death will become available to the mentally ill early next year as scheduled. Amid concerns over how to implement it, Parliament has delayed putting it into place for the past three years and could delay it again."

Can Britain Fix Its National Health Service?

 The NYT has the story

A National Treasure, Tarnished: Can Britain Fix Its Health Service? As it turns 75, the N.H.S., a proud symbol of Britain’s welfare state, is in the deepest crisis of its history. By Mark Landler

"As it turns 75 this month, the N.H.S., a proud symbol of Britain’s welfare state, is in the deepest crisis of its history: flooded by aging, enfeebled patients; starved of investment in equipment and facilities; and understaffed by doctors and nurses, many of whom are so burned out that they are either joining strikes or leaving for jobs abroad.

...

"More than 7.4 million people in England are waiting for medical procedures, everything from hip replacements to cancer surgery. That is up from 4.1 million before the coronavirus pandemic began in 2020.

"Mortality data, exacerbated by long wait times, paints a bleak picture. In 2022, the number of excess deaths rose to one of the highest levels in the last 50 years, and those numbers have kept rising, even as the pandemic has ebbed.

"In the first quarter of 2023, more than half of excess deaths — that is, deaths above the five-year average mortality rate, before the pandemic — were caused by something other than Covid-19. Cardiovascular-related fatalities, which can be linked to delays in treatment, were up particularly sharply

...

"Seeking to solve the problem, Prime Minister Rishi Sunak last month announced a 15-year plan to recruit and train 300,000 nurses and doctors, budgeting 2.4 billion pounds (about $3 billion) for the first five years. But critics point out that the plan does not fund wage increases, the only surefire way to prevent workers from leaving.

...

"No mainstream politician proposes to privatize the N.H.S.: The specter of the inequitable U.S. health system still horrifies many Britons. And in some ways, the service remains a marvel, one of the world’s most comprehensive, taxpayer-funded health care providers — “free at the point of delivery,” in the words of its utopian motto. It still offers annual physical exams, mammograms, vaccinations and other services at a level that visiting Americans find impressive."

Human trafficking conviction in England, in kidney case-""the consent of the person trafficked is no defense."

 The BBC has the story, which is apparently the first such conviction for kidney trafficking under Britain's anti-slavery law. Reading the previous stories, it sounds like the young man in question was being deceived.  But even informed consent apparently wouldn't be a defense under British law...

Kidney-plot politician Ike Ekweremadu jailed By Tom Symonds

"A wealthy Nigerian politician, his wife and their "middleman" have been jailed for an organ-trafficking plot, after bringing a man to the UK from Lagos.

"Senator Ike Ekweremadu, 60, and his wife Beatrice, 56, wanted a new kidney for their 25-year-old daughter Sonia, the Old Bailey heard.

"The pair and Dr Obinna Obeta, 50, were previously convicted of conspiring to exploit the man.

"It is said to be the first such case under modern slavery laws.

...

"Lynette Woodrow, deputy chief crown prosecutor and national modern slavery lead at the Crown Prosecution Service (CPS), said it had been "our first conviction for trafficking for the purposes of organ removal in England and Wales".

"She said it highlighted an important legal principle which made it irrelevant whether the trafficking victim knew he was coming to the UK to provide a kidney.

"With all trafficking offences," Ms Woodrow said, "the consent of the person trafficked is no defence. The law is clear; you cannot consent to your own exploitation."

HT: Dr. Jlateh Vincent Jappah

The power of kidneys, altruism, and books. (And recommendation of a doctor in the UK)

 Here's a story, about kidneys and about books, in inews.co.uk:

‘It’s a gift with no conditions attached’: Why I donated my kidney to a person I’ll never meet. 250 people die each year in the UK because there are not enough kidneys available. So when GP Richard Armitage discovered altruistic donation was possible, he gave away an organ. By Tom Ough

"Despite being a GP, Richard Armitage had spent most of his career unaware that altruistic donations were possible. In this respect, Armitage, 34, was like many of his colleagues in the medical profession. That changed in 2017. Armitage, visiting the Nobel Laureate Museum Stockholm, bought a book by Alvin Roth, an economist who won a Nobel Prize in 2012. The book was Who Gets What — and Why: The New Economics of Matchmaking and Market Design, and in it Roth wrote how we allocate things within markets that aren’t dictated by money.

"Examples include the allocation of children to schools, doctors to hospitals, and kidneys to people with end-stage renal disease. Roth discussed what is known as non-directed altruistic kidney donations – in short, kidneys donated to strangers. Sitting on the plane home, Armitage read the book with fascination. When he returned to Nottingham he checked the NHS website to see whether non-directed altruistic kidney donation was possible in the UK. It was.

...

"In 2018 altruistic donors began being routinely added to the UK Living Kidney Sharing Scheme (UKLKSS), which oversees this sharing of organs by living donors. Apparently as a result of the move, in 2019 there was a 60 per cent rise in altruistic donations – from 124 to 183. Twenty-eight per cent of kidney transplants are now from living donors.

...

"It seemed a good application of the kind of moral philosophy that Armitage had discovered the same year, 2017, when he read Famine, Affluence and Morality. It is an influential essay in which Peter Singer, an Australian philosopher, argued that the West should be donating far more resources to humanitarian causes.

...

"All of Armitage’s intellectual discovery, including his reading of Roth’s writing on kidney donation, happened in one year, 2017 – also the year that Armitage finished his GP training. It marked the end of “a 10-year head-down slog” that began with the first day of medical school. “After I passed my last exam, it felt like I finally lifted my head up and asked: ‘But why am I doing this?’”

"And so Armitage’s first conversation with his regional kidney transplant centre was followed by an appointment with a Living Donor Nurse, who explained what donation would entail: the testing, the preparation, the surgery. Armitage was invited to speak to his loved ones and consider whether he was ready; it turned out he wasn’t.

"There were several hold-ups. At first, Armitage felt the beginning of his GP career was the wrong time to take weeks off work. Then Covid stalled the NHS’s kidney-sharing scheme. Armitage still wanted to donate his kidney, and successfully underwent a battery of investigations: a renal tract ultrasound scan, an electrocardiogram, chest X-ray, various fasted blood tests, and an X-ray of his kidney. As per the requirements of the donation scheme, Armitage met a clinical psychologist to discuss his state of mind, put the psychologist in touch with a loved one in order to independently assess his state of mind, and met a representative of the Human Tissue Authority to ensure that he was not donating his kidney under duress or for financial gain.

...

"Armitage spent several weeks in Ukraine as part of his work for the charity UK-Med, which sent British medics to deliver emergency healthcare. “That obviously meant I couldn’t continue with the donation process,” he says with some understatement. But when he got home, he told the donor team he was ready. “Can we crack on?”, he asked.

"The operation was on 23 November. Everything was in place; Armitage was part of a chain on which three people with end-stage renal disease were due a kidney.

...

"And just before he was discharged – three days after surgery, having convinced the hospital staff he was ready to take care of himself – he was informed that all the recipients in the chain now had working kidneys. “That was a very meaningful moment that made it all worthwhile,” says Armitage."

Postdoctoral opportunities in kidney exchange, in the U.K. with David Manlove and Daniel Paulusma

 David Manlove writes to invite applications for postdocs with him and Daniel Paulusma to work on kidney exchange.

"There are three positions available to work on algorithms and software for kidney exchange as part of the EPSRC-funded KidneyAlgo project: New Algorithms for UK and International Kidney Exchange (https://gow.epsrc.ukri.org/NGBOViewGrant.aspx?GrantRef=EP/X013618/1 and https://gow.epsrc.ukri.org/NGBOViewGrant.aspx?GrantRef=EP/X01357X/1).

 1. Postdoctoral Research Associate at Glasgow, working with David Manlove.  This position requires expert knowledge in the areas of algorithm design and analysis and/or operational research and combinatorial optimisation.  See https://www.dcs.gla.ac.uk/~davidm/adverts/RA-advert.html for further details.  The closing date is 31 January 2023.

 2.  Postdoctoral Research Associate at Durham, working with Daniel Paulusma.  This position has a focus on researching computational complexity aspects of fairness concepts from Cooperative Game Theory.  See https://durham.taleo.net/careersection/du_ext/jobdetail.ftl?job=22002075&lang=en&src=JB10200 for further details.  The closing date is 30 January 2023.

 3. Research Software Engineer at Glasgow, working with David Manlove.  This position requires excellent programming skills and substantial prior software development experience.  See https://www.dcs.gla.ac.uk/~davidm/adverts/RSE-advert.html for further details.  The closing date is 31 January 2023.

 Please do pass this email on to anyone who you feel might be interested."

Allegations of organ trafficking for kidney transplants--in England and India

 From time to time there are stories of prosecutions for organ trafficking in connection with kidney transplants.

Here's a story developing in England. (Early reports were that the alleged donor/seller/victim was a child, but apparently he's not a minor):

From the BBC:

Ike Ekweremadu: Nigerian senator faces London organ-harvesting trial

"A prominent Nigerian senator and his wife who are accused of plotting to harvest a man's kidney in the UK will face trial at the Old Bailey.

"Ike Ekweremadu, 60, and Beatrice Nwanneka Ekweremadu, 55, are alleged to have transported a 21-year-old man from Nigeria to London.

"Prosecutors allege the couple planned to have his kidney removed so it could be given to their daughter.

...

"The alleged victim is said to have refused to consent to the procedure after undergoing tests at the Royal Free Hospital in Hampstead."

********

Not long ago I participated in an online conversation including Professor Janet Radcliffe Richards, who recalls that her view that bans on kidney sales are ill-conceived arose from news in the 1980's about a case involving Turkish sellers (here's an LA Times story from then):

London Kidneys-for-Cash Scandal Prompts Action to Ban Sale of Organs BY ROBERT BARR JULY 16, 1989

"“The concept of organs being bought and sold for money is entirely unacceptable in a civilized society,” Health Minister Roger Freeman told a House of Commons committee during debate on proposed legislation outlawing organ sales. The bill is expected to pass Parliament later this month.

"Not all lawmakers agree.

“The bill will cause death where there could be life, and to prolong suffering where we could provide relief,” said Sir Michael McNair-Wilson, a Conservative Parliament member awaiting a kidney transplant.

...

"Neil Hamilton, who cast the only vote against the bill in committee, said he had pondered the dilemma facing one Turk who allegedly sold a kidney.

“His daughter was suffering from a medical problem which threatened her life, but it could not be solved in Turkey without money,” Hamilton said. “If he did not get the money for the operation, his daughter would die.”

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The situation in India is complex, since there is or was something of a long tradition of kidney sales, which are against the law, and are guarded against by authorization committees that have to approve each living donor transplant. Recently, kidney exchange has become legal in India, but the law only allows close family to be the intended donor in an incompatible patient-donor pair. Below is a report of a case where it's alleged that an attempted donor was paid, and also illegally claimed to be a family relation.

Here's the Hindustan Times story:

Ruby Hall Clinic kidney transplant ‘malpractices’ probe handed over to crime branch

"Earlier on Wednesday, police officials probing the case told Magisterial court that more cases of kidney transplants based on the relationship claims have been unearthed during the interrogation of agents Ravindra Rodge and Abhijit Gatane. Both have been arrested by the police. These two agents having donated their kidneys earlier and also played the role of middlemen in at least four kidney transplants where alleged malpractices were involved.

...

"The case pertains to a kidney swap procedure, also known as paired kidney exchange, between the Moshi man and the Kolhapur woman posing as his wife, and a mother-daughter duo from Baramati."

And here's the story in the Indian Express:

Two middlemen arrested in Pune kidney transplant malpractice case. The other accused in the case, including Ruby Hall Clinic doctors, the patient who received the kidney, and the unrelated donor who was passed off as his wife--are yet to be arrested.

"Police have arrested the two middlemen over the alleged malpractices in a kidney transplant conducted at Pune’s Ruby Hall Clinic in March in which an unrelated woman was allegedly presented as the organ receiver’s wife and promised Rs 15 lakh in return.

...

"Among the 15 people named in the FIR are the hospital’s managing trustee, Dr Purvez K Grant, deputy medical director Dr Rebecca John, legal advisor Manjusha Kulkarni, nephrologist Dr Abhay Sadre, urologists Dr Bhupat Bhati and Dr Himesh Gandhi and transplant coordinator Surekha Joshi. The police also booked the two middlemen, the patient—from Pimpri Chinchwad’s Moshi area—who received the kidney, his wife, their three family members, the woman from Kolhapur who was allegedly passed off as the patient’s wife to become the donor."

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Among the most vigorous opponents of paying kidney donors--e.g. among some of those who think it's a crime against humanity--there's also opposition to extending the scope of legal, ethical, unpaid kidney donation and transplantation, particularly in poor countries.  One reason for this is the intuition that more transplantation will cause more paid transplantation.  The cases reported above, although rare, help to support this view.

But a much stronger case can be made that it is the unavailability of transplants that causes exploitative black markets, and that increasing the availability of legal transplants will reduce the demand for illegal ones.

Report of a SARS-CoV-2 human challenge trial. In Britain.

 The May issue of Nature Medicine reports what I am pretty sure was the first covid challenge trial. It was a small one, designed to track how the viral load develops after infection, to see how quickly tests detect infection, and to check procedures to pave the way for subsequent challenge trials.  Recall that a challenge trial, also called a human infection trial, is one in which the participants are deliberately exposed to the disease, and then reside in the hospital under close medical observation and care.

Killingley, B., Mann, A.J., Kalinova, M., Boyers, A., Goonawardane, N., Zhou, J., Lindsell, K., Hare, S.S., Brown, J., Frise, R. and Smith, E., 2022. Safety, tolerability and viral kinetics during SARS-CoV-2 human challenge in young adults. Nature Medicine, 28(5), May, 1031-1041.

"36 volunteers aged 18–29 years without evidence of previous infection or vaccination were inoculated with 10 TCID50 of a wild-type virus (SARS-CoV-2/human/GBR/484861/2020) intranasally in an open-label, non-randomized study (ClinicalTrials.gov identifier NCT04865237; funder, UK Vaccine Taskforce). After inoculation, participants were housed in a high-containment quarantine unit, with 24-hour close medical monitoring and full access to higher-level clinical care."

...

"Written informed consent was obtained from all volunteers before screening and study enrollment. Participants were given a donation of up to £4,565 to compensate for the time and inconvenience of taking part in the study (including at least a 17-day quarantine). This was calculated using the National Institute for Health Research (NIHR) formula and the UK national living wage."

Two of the volunteers were found to have previous antibodies, and of the remaining 34, 53% (18 people) were infected with the disease after 5 days.  

Here's a schematic of how the trial proceeded, starting with almost 27,000 people who volunteered online to participate in the trial, from which the final 36 participants were chosen.

In contrast, the Phase 3 clinical trial of the Pfizer vaccine had almost 22,000 people in the vaccine group and in the placebo group, and reported after four months that only 8  participants in the vaccinated group had contracted the disease, compared to 162 in the placebo group.  So the vaccine was 95% effective (only 5% of the 170 infections were in the vaccinated group).

Big (Phase 3) vaccine trials aren't comparable to small preliminary trials, so my point here is just that in the challenge trial the rate of infection of unvaccinated volunteers in 5 days is more than fifty times that rate over four months in the traditional clinical trial, in which participants go about their lives and get infected by chance.  That's one of the reasons that challenge trials offer the possibility of fast and efficient testing.

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When the study was completed, in 2021, the NY Times published a column with the headline

Britain Infected Volunteers With the Coronavirus. Why Won’t the U.S.?,  By Kate Murphy Oct. 14, 2021

It ended with the following paragraph:

"As one participant in Britain’s Covid human challenge trial put it: “You know the phrase ‘one interesting fact about yourself’ that strikes terror into everyone? That’s now solved forever. I did something that made a difference.”

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Of course challenge trials are controversial in lots of ways. See some discussion here of the ethics of paying challenge participants. 

Monday, February 22, 2021

Ethical Payment in Human Infection Challenge Studies in the American Journal of Bioethics

Monday, March 1, 2021

Compensating challenge vaccine trial participants: further discussion in the American Journal of Bioethics

Thursday, October 29, 2020

Paying participants in challenge trials of Covid-19 vaccines, by Ambuehl, Ockenfels, and Roth

"we note that increasing hourly pay by a risk-compensation percentage as proposed in the target article provides compensation proportional to risk only if the risk increases proportionally with the number of hours worked. (Some risky tasks take little time; imagine challenge trials to test bulletproof vests.) "

Sunday, November 1, 2020

What do we know about the effects of payments to participants in challenge trials for vaccines, and other public spirited activities?