What Do We Owe Children?

In working on a writing project yesterday, I came across an issue of the journal Ethics & Medicine from 2014, which had an editorial piece entitled “Shouldn’t Children Want Parents of Their Own?”

The article, which was written by former CBC board member C. Ben Mitchell, was sparked by a lecture in which professor Margaret Somerville argues that “children have a human right to natural biological origins” or, to state it slightly differently, “a right to biological parents of their own.”

Mitchell points out that the focus of almost all discussions around having children and building families is focused on the adults rather than on the children. Indeed, we have seen this over and over in our work on the issues of third-party reproduction: egg donation, sperm donation, and surrogacy.

Our phrasing is that time an time again, adult desires trump the needs of children. Mitchell describes the process like this:

It is largely assumed that (1) since it is the right of the adult(s) ‘to have a child of their own,’ (2) any lawful reproductive arrangement they employ is, therefore, licit. Prospective parents’ rights to choose if, when, and how to have offspring trumps other goods or rights, including the rights of the children born from their gametes.

He suggests, however, that we would do better to come at these third-party reproduction issues from an entirely different direction. What if we were to ask what responsibilities we as adults have toward children? What do we owe them ethically?

Mitchell, again following Somerville, says that one of the the things owed to children is a relationship with their parents. He points out, “For millennia of human history, sundering the child-parent bond has been seen either as a tragedy, travesty, or both.”

Somerville herself said,

It is one matter for children not to know their genetic identity as a result of unintended circumstances. It is quite another matter to deliberately destroy children’s links to their biological parents, and especially for society to be complicit in this direction.

And yet, that is exactly what we see in third-party reproductive arrangements. This is precisely what is at stake in current battles in New Jersey and New York, which are seeking to make surrogacy contracts legally enforceable in those states. It is, at its core, societal complicity in the deliberate destruction of children’s links to their biological parents, and indeed to their whole family history and ancestry.

This, friends, is both a tragedy and a travesty.

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Ethics and Burnout

The New England Journal of Medicine today published a brief piece examining burnout among healthcare providers. Certainly, this is a problem both for patients as well as for healthcare providers who of course require appropriate support in their jobs as well as opportunities for rest and renewal.

What struck me in particular about the article is that it opens by referring to the widely accepted ethical framework of beneficence, nonmaleficence, autonomy, and justice. I cannot help but wonder if there is some way in which this framework is itself contributing to burnout.

For example, in many situations, patient autonomy almost always trumps all other considerations, which, at the extreme, threatens to turn physicians, nurses, and other providers into mere technicians who simply fulfill patient requests.

Given the burnout crisis in medicine, it seems to me that it is at least worth asking whether there are ways in which this framework is part of the problem. Is there some other ethical framework, some other way of conceiving of the doctor-patient relationship that might help to alleviate burnout?

Perhaps, for example, if the physician-patient relationship was governed by a covenantal or Hippocratic model, where medical providers and patients (and patient families) view themselves in an ongoing relationship of both giving and receiving, of mutual respect, of seeking understanding, and of looking at the larger place of the practice of medicine in the overall scheme of life and community, the phenomenon of burnout might not be as prevalent.

It certainly seems like a question worth asking, like an avenue worth pursuing.  

Image by Ryan Melaugh via flickr (CC BY 2.0)

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Consuming Fertility

The Washington Post recently ran an article outlining a whole range of ways in which the business of fertility is reaching new heights of consumerism as consumers go about consuming more and more fertility products and services.

Would-be parents seeking donor eggs and sperm can pick and choose from long checklists of physical and intellectual characteristics. Clinics now offer volume discounts, package deals, and 100 percent guarantees for babymaking that are raising complicated ethical and legal questions.

A chart accompanying the article shows that the use of assisted reproductive technologies has climbed from 134,260 procedures in 2005 to 231,936 in 2015. Notably, the number of infants born through these technologies has only risen from 52,041 to 72,913 over the same period, a fact on which the article does not comment.

Increased use and a declining success rate. In what other area of consumer spending do we see such trends? I honestly don’t know.

As the article mentions, these new fertility consumer options raise “complicated ethical and legal questions.” What are they?

Questions abound about the recruitment of donors; the ethics of screening and selecting embryos for physical characteristics; the ownership of the estimated millions of unused eggs, sperm samples, and embryos in long-term storage; and the emerging ability to tinker with embryos via the gene-editing tool CRISPR.

It’s not that these issues are unimportant (once we’ve decided to go down the road of assisted reproductive technology), but maybe it’s worth asking whether there are other, more important questions we should be asking instead.

What if we were to ask — what if we were to carefully and deeply explore — questions like “What is best for children, for women, for families, for society?” “What broadly promotes true and full human flourishing?”

Would the answers be the same? Or would we find ourselves on a different trajectory altogether?

The article highlights the Schlomer family, who split a harvest of eggs with others in order to keep their costs down. Ultimately, “What sealed the deal was the money-back guarantee. If Schlomer didn’t get pregnant or they opted to stop, they would get a refund.”

Notice the consumerist mindset at work in choosing the egg donor:

[Mrs.] Schlomer had two main criteria: One, the donor had to have blue eyes. While her eyes are green, she was charmed by the idea of a child with blue eyes.

Second, the donor had to have a graduate degree. While neither she nor her husband studied beyond the undergraduate level, she explained, “Who doesn’t want smart children?”

These criteria reflect highly mistaken ideas about children. Boys and girls are not products to be ordered, designed, and manufactured to precise specifications like this. They are gifts to be received and cherished as they are. Yes, children are to be nurtured and formed as human beings, but that is to be done in accordance with both their strengths and their weaknesses — in other words, in accordance with their humanity.

The quest for fertility can easily become all consuming. Great caution is required to ensure we do not become consumed with getting the baby we want, just the way we want it. Rather, may we receive children as gifts to be cherished and nurtured for who they are as human beings.

Image by Amber Karnes via flickr (CC BY-NC-ND 2.0)

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What is Brave New World Really About?

I’m a huge science fiction fan, and I particularly like works of speculative and dystopian fiction. Some of my favorite, relatively recent books include Oryx and Crake, Snow Crash, and Anathem. Perhaps the most significant dystopian work, however, is Aldous Huxley’s 1932 Brave New World. Indeed, we here at the CBC sometimes use the phrase “Brave New World” as a pointer toward the harms caused by the less-than-thoughtful use of new biotechnologies (e.g., reproductive technologies), which at times are combined with attitudes, often implicit rather than explicit, that the desires of some trump the needs of others.

Futurist George Dvorsky argues, however, that the notion of a “Brave New World” is “no longer the terrifying dystopia it used to be.” His position hinges on the idea that in many ways Huxley’s Brave New World is really about totalitarian government more than it’s about medicine and technology. The implication is that the dystopia — the nightmarish harm — comes when things are imposed rather than chosen.

On his view, as long as they’re chosen, they’re fine.

I’m beginning to see the same line of thought applied to the term eugenics as well. A program of eugenics is bad if someone else makes you do it, but if you choose to do the exact same kinds of things all on your own, well, that’s okay. Embryo screening through Preimplantation Genetic Diagnosis (PGD) today, gene editing through CRISPR tomorrow. Don’t make me, but don’t forbid me either.

Two things are at work here. On the one hand, there is a false yet all too common idea of autonomy. This false view of autonomy says that each of us is an isolated individual, and that our choices, our decisions, and our actions have little to no effect on others. Of course, this is clearly and demonstrably untrue, particularly in the realm of biomedical technologies. As but one example, our film Anonymous Father’s Day shows that the choice to use a sperm donor has enormous effects on the children born from from it, as well as on their families.

Second, a number of mistaken ideas about what counts as progress are floating around these days. Is the recently reported “eradication” of Down syndrome in Iceland progress? Or is a growing inclusion of people with Down syndrome in society progress? Is a homogenization of the human race progress? A recent article in the journal Human Reproduction points out that current reproductive technologies are slowly and subtly reshaping the human race. The authors admit, “To point out that IVF may favour disease-prone individuals or lead to reduced fitness over generations could surely be provocative, but is nevertheless worth considering.”

It is worth considering indeed.

This is the Brave New World. There is at least — at least — a subtle and implicit eugenics at work in our development and use of reproductive technologies, including third-party reproduction, which we at the CBC have covered extensively.

None of this has come to us through totalitarian government. Rather, it has come to us through our own choices, through subtle (an perhaps at times not so subtle) reshaping of societal norms and expectations, and through the natural desire to parent, to have children who are healthy, and to provide them with the advantages we can.

But is it possible that in some of this we have become so focused on creating, on shaping, on fixing that we have lost sight of the larger picture. Children are gifts to be received, not projects to be undertaken or products to be manufactured. Our own lives, indeed, are gifts to be received.

We do not care for one another by working to eliminate suffering in ways that eliminate those who suffer. Rather, we best care for one another as we realize and admit our own weaknesses, our own frailties, and our own dependencies on others. Then we are able to give the care that we have received or will someday need to receive.

Yes, totalitarian government figures heavily in Brave New World, a book that is definitely a product of the times in which is was written. But we cannot so easily dismiss the harms created by the ways in which some of these technologies have come to be used. They remain very real. Brave New World is about all of these harms. We will continue to point to it as a prescient predictor.

Image by John Shepherd via flickr Attribution 2.0 Generic (CC BY 2.0)

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Artificial Wombs: What’s Really Needed

A recent article in Nature Communications announces the development of a kind of artificial womb (or extracorporeal gestational system). So far it has been used to further the development of premature lambs. Technology website Gizmodo breaks down the technical journal article in more understandable terms.

The research team, led by Alan Flake from the Children’s Hospital of Philadelphia, has shown that it’s possible to support extremely premature lambs in an external artificial womb, and to recreate the conditions required for normal gestational development. The lambs were able to grow inside a fluid-filled device, which sustained them for a record-breaking four weeks. Subsequent tests on the lambs indicated normal development of their brain, lungs, and organs. It may take another decade before this technology can be used on premature human infants, but it’s an important step in that direction.

Lambs were selected for the experiment because their lung development is in many ways similar to human lung development and thus important comparisons can be made.

There is an additional word of explanation added regarding the limits of this technology:

Importantly, the system is not meant to extend viability outside of the womb further back than 23 weeks. Nor is meant to bring a baby to full term. Rather, it’s a bridge between the mother’s womb and the outside world, supporting the infant from 23 weeks to 28 weeks of gestational age, after which time the effects of prematurity are minimal. Some scientists have speculated that eventually, we’ll able to sustain a fetus outside of the womb from the moment of conception straight through until a full term birth, but Flake stressed that their system has virtually nothing to do with this futuristic vision. “There is no technology, even on the horizon, that can support the fetus from the embryonic stage,” he said. “I would be very concerned if other parties wanted to use this device to extend viability [outside of the womb].”

The development of artificial wombs raises a host of ethical questions. Of course, this specific kind of therapeutic “bridging” technology, which would help an infant develop from 23 to 28 weeks, is largely unproblematic beyond standard questions that would arise in the development of any new intervention with premature infants (that is, questions around parental decision-making and consent, the best interests of the child, balancing the burdens and benefits of a new treatment against the benefits and burdens of present treatments, etc.).

As the article points out, however, there is a significant step if we begin to consider extracorporeal gestational systems / artificial wombs in order to gestate from conception on through the whole of pregnancy. This is why these researchers take great pains to distance themselves from the idea.

However, already other researchers are keeping embryos alive in petri dishes longer and longer. Scientists last year moved from nine days in a petri dish to 13 days. And, as reported at the time, “There’s no reason to believe that the embryos couldn’t have survived beyond the two-week mark, but the experiment had to be halted to adhere to the internationally agreed 14-day limit on human embryo research.”

Some might suggest that the idea of artificial wombs would allow us to move away from hiring women to be surrogates or might provide an alternative to abortion. However, artificial wombs would intensify issues of the commodification of human life and bring the manufacture of children to reality in a new way.

If, or perhaps we should say when, extracorporeal gestational systems are combined with gene editing technologies such as CRISPR, we could very easily be facing the prospect of the large-scale manufacture of designer children.

It is easy when faced with such a scenario to recoil and begin searching for a list of bad consequences we can hold up as a warning signal: What about the first embryos to be experimented on? What about the first children to be born this way? What will become of them if or when they develop abnormally? How many will be destroyed in the process? How long will we allow them to develop to see if abnormalities will correct themselves? There is no way to know all of the possible life-long results ahead of time. And more.

However, what’s really needed is to step back and consider the purposes of human reproduction, the idea of a child as a gift to be received and cherished rather than a product to be designed and manufactured. What are children for? What are human bodies for? Why do children come into the world in the way they do, and what is the significance of that beyond the purely mechanical/biological? As Jennifer has repeatedly said, a mother’s womb is not an arbitrary place.

It matters how children come into the world.

We err significantly if our only or if our primary ethical measure is the consequence of an action. Some things are simply right or wrong, in and of themselves, regardless of how they work out. Isn’t this one of the lessons we all learn as children, something we seek to pass on to the next generation?

May we have the wisdom to stop and think, to delve deeply into what it means to be human. And may we do so before we’ve gone so far that we are in danger of losing our very humanity.

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Ethics and Embryo Editing

In a world where it seems the news is endlessly dominated by events in and around the White House, one story this week has clearly broken through: U.S.-based researchers have succeeded in editing the genes in human embryos.

This news was first reported by MIT Technology Review, but numerous other outlets — Associated Press, Scientific American, Science, Vice, The Atlantic, NY Post, Washington Post, New York Times, and more — have picked it up now that the academic paper has been published.

There is no doubt that this is a remarkable scientific development. Any of the linked news stories above tout those details, so I won’t rehearse them here.

However, this development raises a number of important ethical questions. One that is raised in most media reports is that of safety, by which they seem to mean whether targeted DNA edits can be made without producing other, unwanted changes. On that measure, this experiment has been more successful than not: 36 of 54 embryos in one run and 42 of 58 in another.

But what about the long-term safety of these germ-line changes, changes that will be passed on to offspring, and to their offspring, and so on, once the technology is put fully into use? The fact is, there is no way to know what the effect of editing the human germline in this way will be. None.

We are told that eggs from 12 healthy young women were used for this one experiment. The short-term risks of egg donation are well documented (by us), and the long-term risks of egg donation are completely unknown because they have not been studied. How many of the young women who donated their eggs were harmed? How many more eggs will be required?

The embryos in the experiment “were destroyed after about three days.” The destruction of at least 130 embryos (by my count) receives little to no comment in the media reports. The use and destruction of human life at its very earliest stages seems to now be simply a routine, unremarkable aspect of science.

From the news reports, the overriding ethical concern seems to be whether “designer babies” will be coming soon to nurseries near you. We’re assured that they are not, and probably never will be.

Alta Charo, a bioethicist at the University of Wisconsin, tells the NYT, “Nobody’s going to do this for trivial reasons . . . Sex is cheaper and it’s more fun than IVF, so unless you’ve got a real need, you’re not going to use it.”

The same article earlier quotes Stanford’s Hank Greely on a different aspect of the experiment. Greely has argued often that within the next 30-50 years, almost all babies in the developed world will be conceived in laboratories so that parents can take advantage of all the technologies available for ensuring they have the best possible children. It will be, in his words, the end of sex.

I tend to think that Greely is more right on this than Charo. The idea of “real need” is malleable, and once something with great perceived benefit becomes available, it’s difficult to resist.

Most often, it seems that ethical questions, particularly the ones raised in news reports, tend to revolve around questions of consequences, of balancing harms and benefits, of whether a particular action or treatment will, on balance, make things better or worse. Indeed, this is an important part of decision making.

But should consequences be the only, the overriding, or the most important factor?

The question, or worry, over the prospect of designer babies points to larger questions that too often go unaddressed — questions, for example, about how we think of our children. Certainly, children are gifts to be received, cherished, and cared for. Part of caring for children is helping to shape and form them in certain ways, helping them to gain not just knowledge, but wisdom, as they grow and develop. What are the limits to shaping and forming children? The prospect of truly turning children into products that we design and manufacture to precise specifications should push us to think deeply about such questions.

Beyond that are questions about the scientific and medical enterprises. Paul Ramsey warned many years ago, “There may be valuable scientific knowledge which it is morally impossible to obtain. There may be truths which would be of great and lasting benefit to mankind if they could be discovered, but which cannot be discovered without systematic and sustained violations of legitimate moral imperatives.”

What are those moral imperatives? Care for the most vulnerable among us. Acknowledgement of our limitations. How can we best care for one another in the midst of our finitude, in the midst of our mortality? What limits are we willing to draw? What will we say no to? We need to consider “what our bodies are for, how suffering relates to these purposes, and how technological medicine assists or hinders these purposes.”

How can we as a society again have a sustained and fruitful dialogue about such larger, overriding moral imperatives? Is such dialogue even possible?

We at The Center for Bioethics and Culture will continue to raise these issues, will continue to point out those ethical dilemmas that are being overlooked, continue to be a voice not only for specific ethical issues but also for the larger moral imperatives. (This is one reason why our Paul Ramsey Institute is so very important.)

So, to be clear, germline genetic editing/engineering should be rejected by science, by society, by each and every one of us.

 

 

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In Case You Missed It

Many bioethics stories cross my inboxes and screens each day. Some I write about here and in other venues, and others I simply blurb or write a short comment on via Twitter. Of course, not everyone is on social media or follows me there, so I thought I’d collect a few items from the past couple of weeks to make sure as many people as possible do see them.

On to the bioethics items:

Good News out of DC on Assisted Suicide

This doesn’t seem to have gotten much coverage in the press, but Yahoo! News reports: “Rep. Andy Harris, R-Md., who is a physician, proposed an amendment to the current House Appropriations bill that would void the D.C. [assisted suicide] law completely.” We are watching this closely and will post updates as we have them.

Dear Donor

A young man who was conceived using donor sperm penned a letter to his anonymous donor.

Have you ever wondered about me? I hope so, because you’re not ‘just a sperm donor’ to me. You’re not some guy; you’re a man — one specific person who is probably still alive, walking around with half of my face.

This first came across our screens because of the community that has formed on Facebook around the film Anonymous Father’s Day, and which is maintained by a tireless volunteer (thank you Karen!). Be sure to follow the Anonymous Father’s Day Facebook Page!

Important Questions about Brain-Computer Interfaces

Gizmodo asks “How Will We Stop Hackers From Invading Our Brains Once We’re Cyborgs?”

Although we still don’t fully understand how the brain works, we are moving closer to being able to reliably decode certain brain signals. We shouldn’t be complacent about what this could mean for society

Indeed, one of the reasons we’ve worked so hard in bringing the Paul Ramsey Institute to life is so that we can begin preparing tomorrow’s ethicists, thought leaders, and physicians to proactively confront such questions rather than complacently waiting for these profound changes to wash over us all.

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A Sad Anniversary

Today, sadly, marks one year since physician-assisted suicide became legal in California.

Perhaps this weekend you might want to watch (or re-watch) the documentary short film I helped make about the true impact of this law, Compassion and Choice DENIED.

 

Compassion and Choice DENIED explores the effects efforts to legalize physician assisted suicide have on those who are living with terminal illness but who do not want “aid in dying.” The film features Stephanie, a wife and mother living with a terminal diagnosis. She has experienced first-hand the dangerous effects of California’s recent legalization of physician assisted suicide.

As she deals with insurance denials of treatment her doctor ordered and changes in the tone of conversations in various support groups, her story highlights the ways in which the difficulty of living with a terminal diagnosis is compounded by the growing cultural acceptance of the notion of assisted suicide. This negatively changes the ways in which people with terminal illnesses are thought of, and the ways in which they think about themselves.

But hers is also a story of hope. Her hope is that if we can change our way of thinking about the process of dying and those who are dying, we will be able to provide the resources people truly need to be supported and well cared for at the end of their lives.

The full film is available free of charge on Facebook and YouTube.

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Bioethics at the Oscars

As I’m sure you’ve heard by now, the big news coming out of the Academy Awards last night is the mixup regarding the Best Picture winner. Even without that, though, you probably wouldn’t have heard much about a nominated film that brought a bit of bioethics to the Oscars.

Extremis, nominated for Best Documentary Short Subject, highlights the kinds of difficult decisions made every day in intensive care units, and emphasizes the important role of palliative care, especially at the end of life.

The film follows Dr. Jessica Nutik Zitter, an ICU and palliative care specialist at Oakland’s Highland Hospital, as she counsels families facing agonizing choices about whether the treatments and interventions being performed are truly helpful.

It is a truly complex film, not easy to categorize as either difficult or uplifting. It is very difficult to watch in parts. These families are suffering deeply. And it is beautifully uplifting in parts. The members of the medical team care deeply about not only the patients under their care but also about the families and friends of those patients.

Dr. Zitter writes today in Time about the film, and about her goal of raising awareness of palliative care and countering the narrative that our only options are to make use of every treatment no matter how burdensome or suffer in intractable pain at the end of life.

I’ve not seen Dr. Zitter address the physician-assisted suicide debate directly, but this is the same false narrative PAS advocates seize on in promoting their agenda. So I am glad to see this emphasis on palliative care and I’m thankful for whatever attention palliative care gains through this Oscar nomination.

Importantly, though, Dr. Zitter emphasizes that we should not wait for end-of-life crises to arise to begin thinking about — and talking about — what we want as we approach death.

To start to find a way to experience a better end, we need to reflect on our own deaths and begin the process of accepting our mortality. This may happen through meditation, writing, or conversations. Of course we should have hope if illness strikes us, but hope for perpetual life is blind. As we age or grow ill, the goal may switch from hope for longer life to hope for more attainable goals like healing relationships, living pain-free, and enjoying a glass of Cabernet.

Simultaneously, we must prepare for this final stage of life. We must consider our preferences and values, and share them with our loved ones. Stephanie cared about being at home, with her family. What is most important to you? What would be most important to your loved ones? One day you might be called on to represent them. This conversation should happen repeatedly over the years, through the various stages of life and changes in health.

I agree.

A few months ago, I wrote briefly about hospice care, which is one very important aspect of palliative care. What I said then about hospice applies to palliative care in general.

The more people who are aware of, volunteer for, and participate in hospice [and palliative care], the better off we will be as a society. And the more we will move toward being a society that truly cares for one another.

Extremis is a very good film, and I commend it to you (it is available on Netflix). Watch it with your family, and discuss and reflect on it together. May it lead you into considering your preferences and values, and sharing them with your loved ones.

It is not an easy film, but it is an important topic. I’m glad it was nominated for an Oscar. Too bad it didn’t win.

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Update: D.C. Assisted Suicide Law

Update to the update: the law has gone into effect. The House did not vote on the measure to block it, and the Senate version never left committee (both chambers would have needed to vote to block the bill by Friday, February 17).

The organization that spearheaded the campaign for this law released a statement that in part urged residents of D.C. to be sure to request lethal medications as soon as possible. The etymology of “compassion” is to suffer together or to suffer with another. Physician-assisted suicide is the direct opposite. It is abandoning people in the midst of their suffering. This is heartbreaking.


I wrote earlier this week about efforts in Congress to block a new law allowing physician-assisted suicide in Washington, D.C. At that time it seemed possible although by no means certain that both the House and Senate could vote by the end of the week to stop it.

The Washington Post reports that such a vote by both chambers is “unlikely” to happen, which means that the time for Congress to review this new law will have expired.

Those in Congress who oppose this assisted suicide law are now forming a plan to block its implementation via the power of the purse. That is, they plan to not provide D.C. with the funds it needs to setup and run the law. This is, admittedly, a work-around. Utah’s Rep. Jason Chaffetz is leading the charge on this, and according to the Post, he “has said . . . that he thinks Congress should intervene, no matter what form that action takes.”

We cannot help but be disappointed to see this law go into effect. As we have repeatedly argued, assisted suicide is bad public policy. A study published in the Michigan Law Review, for example, found that in Oregon, guidelines were often not followed by doctors, state oversight failed to “collect the information it [the state] would need to effectively monitor the law, and in its actions and publications [the state] acts as the defender of the law rather than as the protector of the welfare of terminally ill patients.” In addition, overall suicide rates have risen sharply in Oregon since the legalization of physician-assisted suicide. (Herbert Hendin and Kathleen Foley, “Physician-Assisted Suicide in Oregon: A Medical Perspective,” Michigan Law Review, Vol. 106, No. 8 (June 2008), pp. 1625–1626.)

At a more basic level, of course, physician assisted suicide is a violation of the Hippocratic Oath and the commitment to do no harm. Legalization of assisted suicide challenges the integrity of medicine as well as the equality of human life. It corrupts medicine, undermines the viability of suicide prevention efforts by sending a mixed societal message, and threatens the lives and equal societal status of the weakest and most vulnerable among us.

The proper and compassionate approach to suicidal desire—whatever its cause—is compassionate intervention and prevention, not facilitation.

We are watching the situation in D.C. closely, and will bring you updates as it develops.

Image: United States government work via Flickr

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