Reclaiming the Lost Art of Dying

As I continue to reflect on the recent CBHD bioethics conference, there are several of the sessions that stand out to me. One was the presentation by John Kilner at the conclusion of the conference that I wrote about last week. Another was the very first presentation as the conference began. Lydia Dugdale spoke on the topic of “Reclaiming the Lost Art of Dying.” Many of us have recognized that there is a tendency for people in our current culture to die poorly. Dr. Dugdale suggested that our difficulty in dying well is related to our level of medical technology. Because modern medicine is able to do so much in treating and curing diseases, the allure of a cure can keep people from accepting the reality of death. She gave as an example a case of a woman with incurable cancer who never addressed the reality that she was dying because every time one treatment failed another was recommended.

She reminded us that there was a time in the middle ages when people were taught the art of dying well through a text titled “Ars Moriendi.” This booklet was published in the 1400s following the ravages of the bubonic plague in both literate and illiterate versions to help people prepare for death. It included instructions on preparing willfully for death and accepting it gladly when the time came. It spoke of avoiding temptations such as impatience, despair, pride, and doubt. It included a catechism pointing to the truths of the Christian faith and prayers for those who were dying.

She asked if something like this were possible for us today and suggested that bioethics could be a framework for learning how to die well. It can help us recognize our finitude and the limits of medicine. It can also point us toward community which can provide the support needed for those who are dying to die well. This may be as far as those in a secular setting, like the one in which Dr. Dugdale works, can go. However, those of us who share Christian faith should be able to take this farther. She challenged us with a quote from Jean-Claude Larchet’s book The Theology of Illness in which he says, “Ask God not in the first place for the return of health, but for what is spiritually most useful.” That points us back to what was understood in the days that the Ars Moriendi was written. Dying is an important part of our spiritual life, and we can grow spiritually through the experience of our own death as well as how we care for others as they die.

Good from Evil

I was given an article by a student of mine following his one month elective rotation with me in which we spent some clinical time discussing bioethical issues. The May 2019 web article by Sharon Begley from Statnews.com had to do with an interesting medical dilemma first presented in 2016 by Dr. Susan Mackinnon from Washington University in St. Louis. I have briefly summarized Begley’s article in the first part of today’s blog and extended her point at the end.

Dr. Mackinnon had a patient who was having severe leg pain following multiple knee surgeries. Dr Mackinnon was providing the final surgical attempt to isolate the nerve presumably being compressed by scar tissue in hopes of surgically decompressing that nerve to permanently relieve the patient’s severe pain. If the surgery was not successful, the only other option at that point was to amputate the leg. During the surgery, she used an old anatomy book called The Pernkopf Topographic Anatomy of Man, which unambiguously has the best illustrations of nerves around the knee, and successfully located and decompressed the nerve in question and successfully avoided an amputation.

So, what was the dilemma?

As Begley points out in her article, it came to light in the mid-1980s that the illustrations used in the Pernkopf atlas were based in part on the bodies of people executed by the Nazis in the late 1930s. The moral dilemma for Dr. Mackinnon was therefore:

“…even now, the Pernkopf illustrations are unsurpassed in their accuracy and detail, especially their depiction of peripheral nerves…and although a few journal papers may have an equally good, single illustrations, finding the right paper takes time that Mackinnon did not have as she stood over her patient.”

Dr. Mackinnon had been given the Pernkopf atlas as a graduation gift in 1982 but the Nazi history behind the atlas was not known until the mid-to-late 1980s, the full history of which only became known to her after the surgery. Should she continue to use an atlas that contains illustrations of the bodies of people executed by the Nazis? If used, is there a duty to inform a current patient about the nature of the atlas? Can sufficient good be derived from the atlas given the unspeakable evil required to create it to permit its ongoing use?

She posed her dilemma to Rabbi Joseph Polak, the Chief Justice of the Rabbinical Court of Massachusetts, who consulted Prof. Michael Grodin of the Elie Wiesel Center for Jewish Studies at Boston University. Their opinion became known as the Vienna Protocol, due to the origins of the Pernkopf atlas. Their response may be found in this link, which I believe is better read in the full context of the Vienna Protocol than summarized by your humble blogger. For those of you who must read the opinion before reading the entire protocol, please follow the link and scroll to the 4th to last page at number 12 in section C entitled “The Protocol and Recommendations”.

The evil that created the Pernkopf atlas was the Nazi occupation of and executions that occurred in Austria during World War II. It is no longer occurring. No one in the present is suggesting that we resume executing people to gain more anatomic drawings to complete additional volumes of the atlas. Any good resulting from the current use of the atlas isn’t being offset by any ongoing evil of creating more atlas. The evil of the Pernkopf atlas is contained in the past and, in that sense, finite. Containing the evil seems to be a necessary step in obtaining good from that evil.

I mention this in closing as I believe there are current analogies of activities performed in the name of scientific good where we condone ongoing evil. Studying fertilized ova until sacrificing them on Day 14 (an evil) in the name of learning about human reproduction (a good) is one modern day example. In Vitro Fertilization done to obtain a healthy baby with genetic traits we want (a good) that results in the death(s) of other fertilized eggs we don’t want (an evil) is another. There are other examples we have discussed within this blog. I believe we need to contain and hopefully discontinue these and other practices if we want to claim the information we gain can honestly be called good.

Fertility Fraud

By Neil Skjoldal

Last week, Canadian fertility specialist Dr. Norman Barwin lost his medical license after complaints that he had used his own sperm to artificially inseminate his patients without permission. Bionews.org reports that there were understandably strong reactions from the families affected by his horrific actions.  And now it has come to light that he had done this at least 11 other times.

This case brought to mind a case that came to prominence last year.  Dr. Donald Cline, an Indiana fertility specialist, used his sperm to artificially inseminate his patients and is said now to have more than 50 biological children.  Apparently, up until recently, there were no laws stating that it was illegal for a physician to do so. In light of the Cline scandal, Indiana passed a fertility fraud law which singles out fertility doctors who use their own sperm.  Theindychannel reports:  “The law, which takes effect July 1, makes it a level 6 felony if someone makes a misrepresentation involving a medical procedure, medical device or drug and human reproductive material.”  

It is truly sad that it takes a law to ensure that doctors will not artificially inseminate patients without their consent.  However, I am glad that Indiana did so.  (California has a more general law). If individuals are unable to regulate their behavior based on their own personal morality and ethics, it becomes incumbent upon society to investigate the matter to determine whether a law is needed or not.  This is what happened in this case.

Bonnie Steinbock takes an interesting perspective on the Cline case.  While acknowledging that the doctor was unethical, Steinbock questions whether or not the children born from this unethical behavior were actually harmed by him:  “What makes the lawsuits of the children Cline sired problematic is the fact that, but for Cline’s use of his own sperm, none of these children would have existed.”  She concludes, “If there are to be any medical malpractice suits against Cline, these should be limited to the parents, not the children.”

These unethical acts demand our attention. What can be done to stop them? And what of those who were victimized by this behavior? At the very least, they deserve answers. I hope that Indiana’s law might make a difference. Hopefully other states are taking notice.

Ending well

By Steve Phillips

This past week I attended the CBHD summer conference. This year’s theme was “Taking Care: Perspectives for the End of Life.” As usual, the conference was filled with thought-provoking sessions and many good personal interactions. While I have much to think about from many of the sessions the one that impacted me the most was the concluding plenary session by John Kilner titled “Dignity and Life on the Line: Ending Well.” This session impacted me in a number of ways. Not the least was remembering how much Dr. Kilner has impacted my life as I listened to him talk about the end of life from the perspective of one going through his own end-of-life journey. It also came at a significant time for me as my wife and I have been grieving the recent death of her father.

However, even without those very personal things, what Dr. Kilner had to say about the end of life was significant. He reminded us that the dignity of human life that exists because every human being has been created in the image of God applies as much or more at the end of life as any other time. Since God has intended in our creation for us to be an internal reflection of him, death is truly an enemy. However, death is an enemy that has been defeated by Jesus in his resurrection. Our approach to death can be wrong if we fail to recognize either of these things. If we do not recognize death as an enemy, we may not pursue appropriate treatment, or we may pursue intentional killing as a means of avoiding suffering. Either of those is wrong. We should intend life and not death. If we fail to recognize that the enemy death has been defeated, we may try to avoid death at all costs and pursue over treatment that increases suffering because we have made life on this earth into an idol.

He also reminded us that the process of dying can include things that are positive. All human life is worth living. The life that we are living as we are in the process of dying can be of benefit to God, others, and ourselves. As we in our weakness put our lives in God’s hands and allow his body, the church, to care for us, we bring glory to God. We allow others to be blessed by serving as they care for us. In the weakness of dying we can find the hope and joy that come from God whose strength is manifested in us in our weakness. I pray that when the time comes God will help me to end my life well in this way. I also pray that I will be able to help others end their lives well.

Thank you Dr. Kilner for all that I have learned from you by your teaching, your encouragement, and the example of your life.

Technical steps to gene-edited babies

This blog has carried several comments about the prospect of heritable human gene editing.  While nearly no one currently supports bringing such babies to birth—and condemns those who would rush ahead to do so—it appears a distinct minority think that we the human race should, if we could, agree never to do such a thing.  The most cautious perspective is to advocate a moratorium.  Others in favor of proceeding argue that, in essence, with the technologic genie (my term, not necessarily theirs) out of the box, a moratorium, much less a ban, is futile; the “rogues” will press ahead, casting off restraint. 

Advocates of research in this area have argued that a clear, careful, regulated pathway is needed to guide the work through necessary laboratory experiments that should be done first, before making a woman pregnant with a gene-edited embryo, in an attempt to be sure that the process is safe and highly likely to yield the intended result.  Even a moratorium would be, by definition, temporary, leaving the question, “when we will know to remove the moratorium?” to be answered.

A feature article in Nature, accessible without a paid subscription, asks “When will the world be ready” for gene-edited babies.  It walks through scientists’ understanding of what the technical issues are.  It is longer than a blog post, so I can only list key points here.  It is worth a reading by anyone interested, and it is written in sufficiently non-technical language that it’s accessible to the general, non-scientist public.

Key concerns are:

  • How would we be sure that genes that were NOT intended to be edited, in fact were not?
  • How would we be sure that genes that ARE intended to be edited are edited correctly?

These two matters have been addressed to some degree, or could be, in animals, but that would be faster and easier than in human egg cells or human embryos, and the results in animals may be different from what is found in the embryos.  (A further question is how many embryos, observed for how long, would need to be studied to support confidence.)

  • Even if the intended gene edit is made, is it clear that doing so is safe and does not induce other health risks? 

This blog recently reported the UK study that suggested that changes in the gene edited in the twin girls born in China last year might eventually reduce life span.  A criterion promulgated in 2017 by the National Academies of Sciences, Engineering, and Medicine was that the edited gene should be common in the population and carry no known risk (including, presumably, no increased risk) of disease.  Such knowledge is lacking for human populations, and what is believed known about the association of genes with risk of future disease has often been developed in Western populations, and may not apply to, for example, Africans.

  • At least some embryos would include some edited and some non-edited cells.  It would not easily be possible, if possible at all, to tell how many of which were present, or needed to be for the editing to work and not cause risks to the embryo’s development into a baby and beyond.  And what answers were obtained would require manipulating healthy embryos after in vitro fertilization.  The outcomes could not be predicted from first principles.
  • What should a clinical trial look like?  How many edited children would have to be born, and their health (and, most likely, the health of their progeny) observed for how long to get provisional answers before practicing the technique more widely?  Or, would the work proceed as IVF did—with dissemination in the general public, and no regulated research?

A US and UK committee is planned to address these questions, with the intent of proposing guidelines in 2020.  This will be important to follow, but with no chance to affect.  Most of us will just be watching, which leads to the last concern:

  • Is the world ready?

If that means, is there an international, or even a national, consensus, then the answer is clearly “no.”  That almost certainly remains “no” if one asks whether there is a future prospect for consensus.  It’s hard to envision something other than different groups and nations holding different judgments, and, most likely, remaining in some degree of irresolvable conflict.

Defense of Abortion as Killing

It is rare to hear a defender of abortion plainly admit that the act of abortion is killing. So, I was curious as to how such an individual would defend that killing. Dr. Sophie Lewis has recently done so in her new book, Full Surrogacy Now: Feminism Against Family. The publisher, Versa Books, has put out a short YouTube video interview, where she outlines her “abortion as killing” defense. The video is just over 2 minutes and she articulates her point clearly. While I have not read her new book, summaries from the publisher suggest the overarching theme is that pregnancy is “gestational work” done by women without appropriate compensation (permission, time, money, recognition…), resulting in their exploitation. Pregnancy (and procreation in general) ought best be done by willing “gestational workers” with clearly defined contractual obligations and recompense. Surrogacy is the answer. There is much to unpack here so I want to focus the remaining blog entry on her defense of abortion as killing as stated in her linked video above.

Her central defense of abortion as killing is as follows:

…looking at the biology of the hemochorial placentation helps me think about the violence that, innocently, a fetus meets out vis-a-vis a gestator. That violence is an unacceptable violence for someone who doesn’t want to do gestational work. The violence that the gestator meets out to essentially go on strike or exit that workplace is an acceptable violence.

The gestator going on strike or exiting the gestational workplace is the act of abortion. In her view, pregnancy is gestational work that can result in workplace violence or, at least, unacceptable work conditions that exceed those previously agreed upon. At that point, Dr. Lewis believes it should be permissible for any woman to leave the workplace, even though that exit causes an ultimate violence to the fetus – the killing of that fetus. She holds the placental attachment to the uterus as a sufficiently biologically violent condition that should permit a biologically violent defensive reponse with the abortion.

It is hard to make these acts either biologically or morally equivalent. Biologically, there is nothing violent about a placenta developing an attachment to a uterus. In fact, using Dr. Lewis’s workplace metaphor, it is the job of the placenta to attach to the lining of the uterus and it is the job of the uterus to receive such an attachment – it is what both were designed or evolved to do. Even if we accept her workplace violence metaphor, it is rare for the violence of the placental attachment to the uterus to result in the death of the mother just as it is equally rare for the violence of the abortion NOT to result in the death of the fetus. These are hardly biologically equivalent events.

Morally, it is hard to argue, even in her terms, that the mother’s choice to terminate gestational work is equivalent to the baby’s placental attachment, even if we grant her claim that both are equally violent. The mother always has the choice in deciding to terminate the pregnancy – the fetus never has a choice or intentional control of the placental attachment process at any point during the pregnancy. After all, intentional choices are made by persons not fetuses. I doubt that Dr. Lewis wishes to cede further moral ground by granting personhood to a fetus.

Maybe that is why Dr. Lewis stipulates that the baby’s violence is innocent. Frankly, the obvious innocence of the baby makes it even harder, if not impossible, to morally justify the violence she desires us to find acceptable.

More gene-edited babies on the way

It is reported this week that a Russian scientist plans to edit the genes of more human embryos intending to bring gene-edited babies to birth.  As with the case in China last year, the intent is to edit a gene called CCR5 that is responsible for a receptor that facilitates initiation of HIV infection.  The stated reason is to prevent transmission of infection from the mother, not the father, as in the Chinese case.  Maternal transmission of HIV is a real risk, but there are other ways to prevent it, with medications.  And, as recently reported on this blog, the risks of editing this gene are not understood, nor are the long-term risks of heritable genome editing.

The science press is saying that someone should put a stop, now, to bringing edited embryos to pregnancy and birth.  But it is unlikely that effective action can be taken.  The public will has not been engaged, necessary medical research controls are not in place, and no one can say just who would have the authority to take what sort of action.

So for the moment there is little else to say.  We will hear of more cases.  We will find out later how we will respond.  Clarity and consistency of that response seem unlikely. https:/

Pragmatism and principle regarding human gene editing

You may have seen in the general press that the gene-edited twin girls born in China last year may have had their life expectancies shortened in the bargain.  The doctor who edited the babies’ genes specifically edited one gene, that is associated with susceptibility to HIV infection.  Their father is HIV positive, but that does not put the babies at any health risk.  Further, the gene editing potentially could have increased their future risk for other infections.  Now, a group in the United Kingdom have analyzed mortality data for about 400,000 people who volunteered to have their genetic information placed in a data bank.  They reported that people who have a gene mutation similar—but apparently not identical—to the change made in the Chinese babies had a 21% lower chance of living to age 76 than people without the mutation.  Now, the average age of the people who volunteered their information for the data bank is said to be 56.5 years, so the implication is that there is a shortening of life expectancy after middle age, for people who have lived at least that long. 

One should interpret the U.K. analysis with caution, but the argument seems to be, “see, we don’t know the risks of human gene editing, so we shouldn’t be doing it.”  And indeed we do not know the risks.  But the argument in fact is, “…we shoudn’t be doing this—at least not yet.”  As Joy Riley pointed out on this blog a few days ago, the goal of a moratorium on human genome editing appears to be to allow the scientists working on the technology to take time to build public trust and consensus for it.  “We shouldn’t be doing this, ever” does not appear to be an option.  Long-term readers of this blog may recall numerous posts over the last few years describing this process of gradual acceptance in the scientific community.  The scientists draw an analogy to the 1975 Asilomar conference on recombinant DNA work, which established guard rails around that work.  But the analogy is flawed.  The risks of the work addressed at Asilomar were more readily defined, with shorter time frames to results, than can be addressed with genome editing.  400,000 middle-aged people’s mortality due to any (unspecified) cause over the ensuing quarter-century?  How many edited people, studied for how long, over how many generations, with what consent process, to determine the risks?  There can be no acceptable definition of the risks prior to actually assuming them.  “The babies are the experiment.”

The correct conceptual framework for human genome editing is not benefit-risk analysis, it is deeper reflection on where we should not let engineering encroach on the human organism.  “Keep your ambition off our bodies,” I suppose.  And when we think in those terms, we should quickly recognize territory where we fear to tread at all, not just slow down.

Oh, Those Darned Terms (Part 3)

It is hard to keep a good theme down as terminology is back in the news. It seems National Public Radio (NPR) is concerned about proper terminology as a recent “Guidance Reminder: On Abortion Procedures, Terminology & Rights” post by NPR Standards and Practices Editor Mark Memmott on NPR.com suggests. This link is one of periodic commentaries by Memmott on standards expected by journalists at NPR based upon their Ethics Handbook, which is also available on their website. The stated goal of the Ethics Handbook and the periodic commentaries is to be as accurate and unbiased as possible with reporting at NPR, which is obviously an appropriate goal in reporting the news, particularly potentially controversial topics. Read Memmott’s commentary link and see if you think NPR is meeting that goal.

I think there is room for improvement.

For one thing, while there is an appropriate “We-They” throughout the article describing NPR’s word choice versus the word choice of groups favoring “anti-abortion rights” (approved term), I failed to find a similar “We-They” within the article describing NPR’s word choice versus the word choice of groups favoring “pro-abortion rights” (not approved term). Perhaps I missed it?

Additionally, NPR favors the term “fetus” over the term “unborn”, despite the fact that fetus means “unborn offspring of an animal” per Wikipedia or “unborn or unhatched vertebrate” per Merriam-Webster. The Latin sounds more accurate but fewer people are speaking Latin these days. Nonetheless, NPR believes that “[i]ncorrectly calling a fetus a ‘baby’ or ‘the unborn’ is part of the strategy used by antiabortion groups to shift language/legality/public opinion.” I wonder if the Mayo Clinic realizes their interchangeable use of the terms “fetus” and “baby” on their fetal ultrasound web page is not only incorrect but places them squarely in the antiabortion movement trying to shift language/legality/public opinion?

Finally, NPR does not like to use the term “abortion clinics” but rather “medical or heath clinics that perform abortions”. That may indeed be more accurate but why stop there? Why not list all the procedures that a specified medical clinic performs, including the total number of each of the procedures performed, and let the reader decide how he or she wishes to categorize that particular clinic?

It is wrong to purposely select terms feigning accuracy so as to appear unbiased, particularly if the goal is to bias by use of those very same terms.

Proposed moratorium on human germline: Asilomar analogue?

The Editorial Board of The Washington Post (WaPo) recently published their opinion  on regulation of heritable genetic changes in human eggs, sperm, and embryos. The authors expressed some measure of relief that organizations such as the National Academies in the U.S., the Royal Society in Britain, and the World Health Organization are beginning to consider the daunting topic of human heritable genetic changes. The board advised, “The goal must be a framework that will enable genuine scientific advancement but avoid reckless fiddling with the source code of life.”

The WaPo editorial board further recommended “something of similar scope and power” to that of the Asilomar Conference on Recombinant DNA Molecules, held in February 1975. Asilomar, as that conference came to be called, was convened to evaluate the risks posed by the novel technology of genetically modifying organisms. The public perception of Asilomar has been primarily one of scientists shouldering the “social responsibility of science.”

Further, the WaPo article pointed out that one of the authors of the March 2019 Nature commentary calling for a “global, temporary moratorium on clinical uses of human germline editing” was Paul Berg, a Nobel laureate, and one of the organizers of the Asilomar conference. The Nature commentary, authored by Eric Lander, Françoise Baylis, Feng Zhang, Emmanuelle Charpentier, and Paul Berg, described the consensus for a moratorium thusly:

The 18 signatories of this call include scientists and ethicists who are citizens of 7 countries. Many of us have been involved in the gene-editing field by developing and applying the technology, organizing and speaking at international summits, serving on national advisory committees and studying the ethical issues raised.

This description appears to differ substantively from one Berg gave of the Asilomar analogue. In an 18 June 2011 video interview by Larry Goldstein, Berg had this to say about the success of Asilomar:

We made some decisions that were smart in retrospect. For example, one of the things we did not do – and did not include in any way in the agenda was the ethics. We didn’t talk about genetic testing… we talked about real experiments, and what the impact of those experiments would be in the field (10:40-10:58)

Of the five authors calling for a moratorium on human heritable genetic changes, only Françoise Baylis is an ethicist. A 2004 article penned by Baylis and Jason Scott Robert, “The Inevitability of Genetic Enhancement Technologies,” gives insight to her views. The paper concludes with

. . . we maintain that accepting the inevitability of genetic enhancement technologies is an important and necessary step forward in the ethical debate about the development and use of such technologies. We need to change the lens through which we perceive, and therefore approach, the prospect of enhancing humans genetically. In recognising the futility of trying to stop these technologies, we can usefully direct our energies to a systematic analysis of the appropriate scope of their use. The goal of such a project would be to influence how the technologies will be developed, and the individual, social, cultural, political, economic, ecological, and evolutionary ends the technologies should serve. It is to these tasks that bioethical attention must now fully turn.

It appears that 1) Paul Berg’s previous concerns about “ethics” being involved is not a problem to date in this enterprise; and 2) the called-for moratorium is truly only a “speed bump” on the road to converting future generations into our own laboratory experiments. The “individual” ends such experiments will serve are likely to be the individuals who are paid handsomely to do such experiments or who hold the patents to the processes utilized – not the individuals formed. Despite the extensive embrace of heritable human genome editing by the principals cited here, we need to remember that this is not a road that we must travel. Future generations are not our playground. We need to rethink this “moratorium”:  It should be an outright ban.