Nabbing the “Golden State Killer”

The Economist recently highlighted growing concern about “the surveillance state”. It argued that “the digital world, like the real one, [should have] places where law-abiding people can enjoy privacy. Citizens of liberal democracies do not expect to be frisked without good cause, or have their homes searched without a warrant.”

And it concluded, “Police rightly watch citizens to keep them safe. Citizens must watch the police to remain free.”

This is useful advice for anyone sending DNA to a genealogy website. Our lead story below is an example of how easily police vigilance, open source data, and personal privacy become scrambled. Earlier this year California police used the DNA of a vicious serial killer who had been off the radar for more than 30 years and identified him through a popular website.

I can imagine that some users must have been outraged. This could happen to me: what gives police the right to trawl through my relatives? Perhaps we should follow the advice of The Economist and require warrants for searching family trees on the internet.   

On another note, you probably know that we're coming to the end of our fund-raising drive. Please think about a donation -- BioEdge has no sugar daddy, no big institution, behind it. We depend on the generosity of our readers for survival. 

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Suicide rate soars in US

The deaths this week of fashion designer Kate Spade and celebrity chef Anthony Bourdain (see below) focused the media once again on explanations for America’s rising suicide rates. The short answer is: nobody knows. The more nuanced long answer is: nobody knows for sure. But something is driving it. Here are a few paragraphs from the New York Times which suggest that suicide is becoming culturally more acceptable:

The rise of suicide turns a dark mirror on modern American society: its racing, fractured culture; its flimsy mental health system; and the desperation of so many individual souls, hidden behind the waves of smiling social media photos and cute emoticons.

Some experts fear that suicide is simply becoming more acceptable. “It’s a hard idea to test, but it’s possible that a cultural script may be developing among some segments of our population,” said Julie Phillips, a sociologist at Rutgers.

Prohibitions are apparently loosening in some quarters, she said. Particularly among younger people, Dr. Phillips said, “We are seeing somewhat more tolerant attitudes toward suicide.”

In surveys, younger respondents are more likely than older ones “to believe we have the right to die under certain circumstances, like incurable disease, bankruptcy, or being tired of living,” she said.

If this is the case, why, O why, is there a movement for assisted suicide? Yes, it’s hard to prove, but it makes sense: if assisted suicide is a triumph of compassion and autonomy, how can unassisted suicide possibly be a tragedy?

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Left out on euthanasia

Some years ago, I received an unexpected phone call from a Melbourne magazine which described itself as the voice of the Australian Left. One of the editors wanted me to write an article about euthanasia activist Philip Nitschke. “He’s ****ing the proletariat over, comrade,” was his interpretation of Dr Nitschke’s mission. I obliged and was later rewarded with an invitation to the magazine’s Christmas party. I had an interesting chat there with an enthusiastic fan of Stalin’s philosophical works (“much misunderstood”), thus dispelling any misgivings I might have had about the magazine’s left-wing credentials.

Nowadays, “left-wing” almost certainly indicates support for euthanasia. That’s why I was gratified to read that the defeat of a euthanasia bill in Portugal last week was due to the opposition of the Communist Party. Its leader, João Oliveira, told the Portuguese parliament that:

“Faced with the problems of human suffering, illness, disability or incapacity, the solution is not to remove responsibility from society by promoting the early death of people in these circumstances, but to promote social progress in order to ensure conditions for a decent life.” 

That’s what I thought left-wing politics was all about: protecting the disadvantaged. Have left-wingers in the Anglosphere lost their way?

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Ireland chooses

Ireland, which was once Europe’s most socially conservative nation, has voted to repeal the Eighth Amendment to its constitution in order to permit abortion. The vote was roughly 2 to 1 in favour of change, with nearly the whole country supporting it. Taoiseach (prime minister) Leo Varadkar reassured No voters. “Ireland will still be the same country today as it was before, just a little more tolerant, open and respectful.” 

The legalisation of abortion comes hard on the heels of the legalisation of same-sex marriage in 2015. Together they suggest that Ireland is not the same country, at least not compared to 1983, when the Eighth Amendment was passed by a 2 to 1 margin. It is obvious that the country has “changed, changed utterly” in a single generation – although people will differ on whether this signals a “terrible beauty” or a terrible shame.

What is responsible for the turnabout? The decline in the prestige and power of the Catholic Church, which once was synonymous with Irish culture, surely has something to do with it. But there must be other reasons as well, as Ireland is simply treading the well-worn path towards secularisation which has swept across Western Europe. It’s worthwhile trying to understand the dynamics of the change, as the rise of bioethics itself is part of that secularisation. Otherwise we – Ireland and the rest of us – will fail to understand ourselves.

One example of the narrative which is being used to explain the referendum result is the image of Savita Halappanavar, an Indian migrant who died after asking for an abortion in 2012. It was used to show what happens to women who are denied their reproductive rights. However, abortion had nothing to do with her tragic death, a government investigation concluded in 2014. Instead, it was a perfect storm of medical negligence.

“We have voted to look reality in the eye and we did not blink," says Mr Varadkar about the referendum result. If he meant by these self-congratulatory words that Ireland is no longer living in a world of delusion and lies, he has obviously spoken too soon.

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May prisoners be used in clinical research?

Shusaku Endo may be the greatest Japanese novelist who didn’t win the Nobel Prize. He is best known in the West for his novel Silence, about Christianity in 17th Century Japan, which was recently made into a film by Martin Scorsese. But one of his early novels touches upon the ethics of clinical research. Based upon a historical incident which took place just weeks before the end of World War II, The Sea and Poison relates the moral corruption of doctors who vivisected several American prisoners of war.

It’s hard to get, but well worth reading, as it exemplifies the hazards of research on prisoners. Almost no population is more vulnerable to exploitation by clinical researchers than prisoners. Even if they benefit from the research in some tangential way, a more powerful motivation may be their desire to please prison authorities.

Many bioethicists have written about this difficult ethical issue, but this doesn’t make it any easier to make a decision in practice. Below is an article about proposed clinical trial conducted in prisons to determine whether low-salt diets are healthier. What do you think?

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AMA spurns assisted suicide

“Death with dignity” or “aid in dying” is gathering pace in the United States, now that Hawaii has joined the list of states which permit it. Some of the most important input in the debate comes from medical associations. The American 
Academy of Hospice and Palliative Medicine 
has adopted a position of “studied neutrality”. But how does the American Medical Association stand?

According to a recent decision by its Council on Ethical and Judicial Affairs, squarely against it. Below we report that in a little-noticed report, it endorses many of the arguments raised against assisted suicide: "dying with dignity" is a misnomer; it is probably not safe; and it could lead to a slippery slope. It's a very interesting read -- along with all of our other articles. Check them out. 

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Thanos inherits the mantle of Paul Ehrlich

Personally, I'm not a big fan of super-hero films. I get a bit tired of the wisecracks and the fake explosions and crumbling buildings. But that's me, I'm afraid. Age. Generational change. Fuddy-duddy etc. 

However, they are interesting thermometers of the culture. Black Panther certainly taps into a revolt against racism. Guardians of the Galaxy revolves around lost fatherhood. And the really, really bad guy in the latest epic, Avengers: Infinity War, is obsessed with population control. He has a plan for eliminating half the population of the earth. It's a reprise of Paul Ehrlich's 1968 damp squib, The Population Bomb, which predicted social collapse and environmental disaster unless the brakes were put on world population. It was a very scary script and it never happened, like most disaster movies. 

What I wonder is this: does this mean that over-population still scares people or that it no longer does? Thanos, after all, is a villain, and the Avengers are out to defend the world, not support his extreme environmentalist creed. My feeling is that very few people are fretting about over-population as such, although the real problem, a shrinking and greying population, isn't attracting much interest either. Any thoughts?

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Dodgy death statistics in Flanders

“Die, my dear Doctor! That's the last thing I shall do,” said the 19th Century British foreign secretary Viscount Palmerston, not long before he slipped his cable. For all of us, dying is the last and perhaps most significant moment of life. Which is why recording the exact cause of death is a matter that calls for scrupulous accuracy – not just for epidemiological purposes, but also as part of our personal and social history.

But our disturbing lead story today – that Flemish doctors under-report euthanasia by a mind-boggling 550% -- throws all this to the winds. The most common practice, at least according to the latest research into the topic, is that most Flemish physicians who practice euthanasia lie on the death certificate.

Perhaps their offence is more understandable than jurisdictions which require doctors to lie. In many, like Oregon, they are told to record the patient’s underlying disease as the cause of death – as if JFK died of Addison’s disease rather than an assassin’s bullet.

Perhaps we should keep in mind the wise words of the author of a study on death certificates: “Death certificates are really important. We owe it to our patients to be able to accurately record why they die” — and thus to “help the living.”

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A more inclusive view of personhood

“Personhood” is a concept that is of great relevance to a range of bioethics debates. These include embryo research, abortion, the withdrawal and withholding of treatment, and euthanasia. Ironically, conservative bioethicists argue for a liberal definition of personhood, while liberal bioethicists tend to defend a more restrictive account of who classifies as a person. The former suggest that personhood pertains to a radical capacity for conscious activity, and all human beings, regardless of whether they have actualised this capacity or not, are persons.

The latter argue that the unborn and the radically incapacitated do not have a capacity for conscious self-awareness, and do not count as persons.

Yet the way in which we define personhood has a relevance that goes beyond debates about human beings. It also has significant bearing on debates about animal rights.

Some bioethicists argue that certain non-human animals, such as chimpanzees, should be recognised as “persons”. NYU animal studies professor Jeff Sebo, for example, says that chimps have many of the traits – self-recognition, use of language, friendships and the pursuit of goals – that we take to be constitutive of personhood. As such, we should include them in our definition of personhood. Sebo has championed a protracted legal campaign in New York State to have two chimpanzees, Kiko and Tommy, recognised as persons.

Here’s what Sebo had to say in a recent New York Times op-ed:

Sometimes when we are overwhelmed by the complexity of an issue, it can help to start by stating a simple truth and going from there. In this case, the simple truth is that Kiko and Tommy are not mere things. Whatever else we say about the nature and limits of moral and legal personhood, we should be willing to say at least that. The only alternative is to continue to accept an arbitrary and exclusionary view about what it takes to merit moral and legal recognition. Kiko and Tommy deserve better than that, and so do the rest of us.

I wonder if these two different debates – the limits of human personhood and the scope of animal personhood – have implications for each other. Perhaps those who defend the rights of the unborn and severely incapacitated humans must also acknowledge the need to afford greater legal recognition to intelligent non-human animals. And perhaps those who advocate for a definition of personhood that includes intelligent animals should also include those at the margins of human life.

Deputy Editor

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Disability and euthanasia

Mahatma Ghandi reputedly said, “A nation’s greatness is measured by how it treats its weakest members.” We could paraphrase this in a contemporary context: a nation’s right-to-die laws are measured by how it treats the disabled.

Our lead story this week deals with the euthanasia of patients with an intellectual disability or autism in the Netherlands. Four bioethicists suggest that the necessary safeguards are lacking in these cases.

That is bad enough. But they go on to point out that the disabled have to deal with nigh-intolerable suffering for their whole lives. How does legal euthanasia make them feel? In the words of another author, “If society endorses the right of a person to seek physician assistance to end his or her life because of increasing loss of functional autonomy, what does that say about how our society values the lives of people who live with comparable limitations every day of their lives for years on end?”

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