The death and resurrection of Jesus and how we view death

This is the week when we who are Christians particularly focus on the death and resurrection of Jesus. As I have been reflecting on this I have been thinking about how Jesus’ death and resurrection impact how I think about bioethics. I think that the largest impact is on how I think about death.

Whether we realize it or not, much of bioethics is impacted by how we view death. This is most clear when we are thinking about end-of-life issues. Some of the most difficult medical decisions that people must make are related to how aggressively we should try to prevent death and when we should accept the inevitability of death and focus on palliative care. However, it also impacts beginning of life and reproductive issues, because many times those issues are significantly impacted by our understanding of who has the type of moral status that says we should not cause the death of that person. It is also the foundation of transhumanist desires to go beyond the limitations of human mortality.

How does Jesus’ death impact how I think about death? It reminds me that death is the result of evil and may involve deep suffering. It was not a part of God’s original good creation but is a part of the brokenness of that creation caused by human sin. It reminds me that we have a God who understands what it means to suffer and die and can truly love us with a compassionate love. Jesus’ resurrection reminds me that he not on the understands death but has defeated it. We who follow him can know that death is not the end. We have a hope that goes beyond death that changes how we think about it.

Understanding God’s compassionate love for us can help us live with a deeper compassion for those around us. Having a hope that goes beyond death and an understanding that there can be meaning in suffering allows us to face the reality of our own deaths without fear. When we are at peace with our own death we can better help others, who are dying. We can understand that death itself is evil and that it is good for us to develop medical treatments and administer them to people in order to prevent death, but also understand that preventing death is not our ultimate goal because we can have a relationship with God that is eternal.

Resources regarding ethics of gene editing

Recently, two resources have become available regarding gene editing and the issues raised by it.

First, the National Academies of Science, Engineering, and Medicine have made available an archive of its February 22 webinar about human gene editing.  The home page for the Academies’ human gene-editing initiative is here.  A link to the archived webinar is here.  The slides can also just be viewed here.

Second, Issue 1 of Volume 24 of the journal The New Bioethics is dedicated to human gene editing.  The entire issue, or individual articles from it, are available online for purchase, or for viewing if you have access through an academic institution.  Article titles deal with, for example, differentiating gene editing from mitochondrial transfer, comparing ethical issues with gene editing vs embryo selection, and “selecting versus modifying” to deal with disabilities.

I have not been through these materials in any detail, yet.  The webinar looks a smidge promotional, co-sponsored as it was by the Biotechnology Industry Organization (BIO).  But it also recommends the Academies’ report on the status of human gene editing, and summarizes key recommendations, which include limiting efforts (at least for the present!) to editing “somatic,” or, if you will, “adult” cells to make them into cellular therapies for recognized diseases.  This is well within the existing ethical and regulatory regime governing clinical research and treatment development, as opposed to the deeply problematic prospect of heritable gene editing, or attempts to edit genes for human enhancement, both of which the report and the webinar (at least the slides) counsel that we NOT rush into.  The New Bioethics articles look thoughtful and worth reviewing, which I hope to do (and comment on) in the near future.

The Bioethics of a Modern Death Mask

By the time you read this, a company called Nectome will have pitched its business plan to investors at Y Combinator as a company who has designed a technology called Aldehyde-Stabilized Cryopreservation to preserve all of your connectome, which is all of your brain’s interconnected synapses. Doing this, they argue, can preserve your memories, allowing the company to effectively “upload your mind”. One problem with the technology is that the process is 100% fatal as you have to die during the cryopreservation process to make an accurate connectome.

Oddly, the fact that you have to die for the process to be successful is not considered a deal breaker. Twenty-five individuals have already plunked down the $10,000 deposit to be first on the list to eventually have their brains perfectly preserved in this manner. The process also depends upon future scientists being able to figure out a way to use these perfectly embalmed brains to “reboot” their consciousness. Never mind that no one presently knows how that rebooting process might work or whether the present process captures everything that will be necessary some 100 years in the future when the complete technology will hopefully actually exist. Presumably, smarter people will have all of that detail eventually worked out. What is important at present, particularly if you have a terminal disease, is to preserve your brain so you can be rebooted in the future. A new state law in California called the “End of Life Option Act” makes the application of this novel technology legal for terminal patients (at least as best as can be determined as the legal details have yet to be tested in court). A very nice overview of this new technology and the new company itself may be found in the latest Technology Review article by Antonio Regalado.

There are scientists, such as neuroscientist Ken Hayworth, president of the Brain Preservation Foundation, who believe that a connectome map could provide the basis for reconstituting a person’s consciousness. At its base, this theory assumes that the physical brain is not only the necessary but presumably the sufficient source of consciousness. Capturing the synapse pattern would certainly be essential for recreating the hardware (and perhaps the software) of the brain to restart one’s electrical pattern leading presumably to rebooting one’s consciousness.

I have a couple of ethical problems with this technology, though I am sure there are more. The most obvious is that the process hastens the death of the individual, regardless of their terminal illness. The person will not be dying from their illness but from the cryopreservation process. This technology would not be legally possible without the new California law that will ascribe the death to the terminal illness rather than Nectome’s cryopreservation process, presumably shielding Nectome from product liability suits. Only in California could a terminal patient’s family sue the manufacturer of their vehicle for a malfunction in the brakes that resulted in their loved one’s premature death as they were in the process of driving their loved one to a Nectome facility to die by brain cryopreservation with the hope that the loved one could live again.

Another ethical problem is the transhumanist lure of a brain being rebooted, effectively allowing immortality of one’s consciousness. Aside from the presently unproven science of the rebooting process, who would be the recipient of the successful rebooted consciousness? By that I mean “who” (or what) is regaining consciousness? If the physical brain is the basis for consciousness, and recreating a new but exactly reproduced connectome is the thing that becomes conscious, would it really be you becoming conscious, or someone or something else entirely? Who really enjoys the rebooted memories? What if it is not really you that is being rebooted but someone or something else with your life’s memories? This would be the worst “bait and switch” advertising scam ever devised! What till the FTC begins filling suit. But seriously, are we just our consciousness or a necessary combination of physical mind and body, or a necessary combination of spiritual soul and physical mind/body? What exactly are we? Why do we think we can achieve immortality in the first place? If we can, is the Nectome method the right way of going about this process?

The Christian faith argues for a different process, but uses language such as “dying to self” and being “born again”, which sound similar to Nectome but are indeed very different. Per Nectome, if you die, using our cryopreservation technology, you can live again by regaining your consciousness in the future. The biblical concepts of being born again and dying to self reflects a believer having faith in the salvation offered by Christ’s death on the cross and subsequently humbly subjecting oneself to God’s will rather than one’s own will for the future, both temporally on earth and eternally in heaven.

I recommend the Christian process of being born again rather than the modern death mask soon to be offered by Nectome.

Doctor-assisted death: resisting the slippery slope

The New England Journal of Medicine has two new “op-ed”-style pieces raising concerns about extending physician-assisted suicide (PAS) from people with end-stage terminal illness to people who may express a desire to die because of (non-terminal) mental illness.  (Regrettably, both require subscription access.)  PAS in these cases is being exercised in Belgium and the Netherlands, and is being considered in Canada

In one article, the authors label PAS for psychiatric patients “misguided public policy,”   Although patients may be suffering terribly from, say, severe depression, they may be victims of “distorted cognition” that leads them to see their lives as worthless.  This, the authors argue, is a manifestation of the mental disease—so, in a sense, it’s not “healthy” or “real” (my words, not theirs).  In essence, the patient is not somehow mistaken about his suffering—rather, it’s potentially treatable.  Unless in some cases it’s not, I suppose, in which case it’s not clear how the authors would resolve that.  Oh, and in the absence of universal health insurance (a problem that the Dutch and Belgians and Canadians all avoid, they allow), some miser might see PAS as a convenient way to save a few bucks—or quite a few, for that matter.

Some suicidal psychiatric patients may indeed make “rational and autonomous” (the authors’ phrase, not mine) decisions for PAS, but doctors might make diagnostic mistakes and “let other patients slip through.”  Must such mistakes be accepted, as a sort of “collateral damage” for an otherwise desirable policy?  No, the authors say; to allow PAS for psychiatric patients contradicts “physicians’ commitment to preserving life and preventing suicide.”  To this last point, I might offer an “Amen.”

In the other article, a Dutch doctor argues that there, and in Belgium, the PAS regime is simply too lax.  For PAS to be ethical, he argues, it must be a last resort.  But no such safeguards are in place there, and, indeed, eligibility for one form of treatment—deep brain stimulation—requires a more stringent evaluation than PAS does.  The author of this article would permit PAS for psychiatric patients not only if all treatment options had been considered, but “only if the patient had not refused a reasonable treatment option” (emphasis mine).

So much for autonomy, I guess.  Back to a (welcome?) paternalism that recognizes the doctor’s calling is first to care for and preserve life?

The second author concludes that PAS should be considered only in parallel with “recovery-oriented care,” to ensure “that there is a treatment advocate involved, [that PAS is not] used as an escape for an overwhelmed physician, and [that] the focus of care [is not] narrowed down to death.”


Belgian Euthanasia: Volunteers No Longer Necessary?

A recent resignation letter by one member of Belgium’s Euthanasia Commission suggests the slippery slope of who meets the criteria for legal euthanasia is becoming even more slippery. Dr. Ledo Vanopdenbosch sent his resignation letter to members of the Belgian Parliament who oversee the commission. His concern was with one of the main requirements of the law, which demands that the individual patient formally request euthanasia. Vanopdenbosch claims euthanasia occurred on a psychiatric patient without his or her request. His resignation has generated substantial concern not only because Vanopdenbosch is a committee member but also because he is considered a strong advocate of euthanasia. Here is the AP article in Voice of America with the details.

One of the main tasks of the Belgium Euthanasia Commission is to review every euthanasia case to make sure each case meets the legal criteria necessary for euthanasia. Any case in doubt is referred to the public prosecutor’s office. It is perhaps telling that in the last 15 years since legalization of euthanasia in Belgium, over 10,000 individuals have been euthanized but only one case has been referred to prosecutors by the commission with the concern that it may have been performed illegally. Vanopdenbosch argues that the commission is acting in place of the courts, a potential conflict of interest given that those on the commission are generally considered strong supporters of euthanasia. In addition to the slippery slope metaphor used earlier, one might also add that the foxes are guarding the henhouse.

An internal review of this particular case resulted in the committee claiming that what really happened was an accidental death related to palliative care rather than actual involuntary or non-voluntary euthanasia, as is claimed by Vanopdenbosch. The general population will never know, as commission protocol and privacy concerns prevent the details of the case from ever reaching the light of day. In absence of further details, one wonders whether the alleged palliative care for the unknown psychiatric condition was formally requested by an otherwise competent patient or just provided absent his or her formal consent but “in his or her best interest” by the patient’s physician or caregivers.

It is presently unknown whether or not Dr. Vanopdenbosch’s resignation will result in any changes in the structure, function or transparancy of Belgium’s Euthanasia Committee. At the very least, one would expect to see an increase in referrals to the public prosecutor’s office for legal oversight. It is simply unbelievable that the committee has only encountered one case out of 10,000 cases that they found sufficiently suspect to refer to prosecutors for legal review. Perhaps more importantly, I want to believe that even those supporting euthanasia would be against all forms of non-voluntary euthanasia, particularly involuntary euthanasia. Sadly, I am naive. In our post-modern world, how can any death be a “good death” unless, at the very least, the competent patient in question so stipulates?

(For an excellent recent YouTube interview containing a brief history of euthanasia, please see this link of an interview with Dr. Richard Weikart, Professor of History at California State University, Stanislaus. Some highlights: at 10:40 where he touches on Belgium and psychiatric euthanasia, at 19:00 where he discusses the slippery slope argument, and at 21:30 regarding non-voluntary euthanasia)

Parkland & Bioethics

I have lived in South Florida over 20 years now, and I do not remember anything grabbing and holding our community’s consciousness more than the February 14 shooting at the Stoneman Douglas High School in Parkland, Florida (in Broward County).  In its aftermath, the more we hear about the events of that day, the more alarming it becomes.  This is the sort of tragedy that haunts children in profound ways.  I have had conversations with my two teenage daughters about the relative safety of their schools, and what would happen if the formerly unthinkable occurred.

It’s hard to keep track of all the news coverage.  Certainly, there are many on all sides of the gun issue that engage in sensationalism and scare tactics.  Sadly, the voice of the so-called “reasonable middle” often is silenced by the loud voices on the fringes.  I sincerely, but mistakenly, thought that after the horrific shooting at Newtown, Connecticut in 2012 (with the deaths of 20 first graders and 6 adults) leaders would take meaningful action.

Is gun violence a bioethics issue? A research letter published in JAMA in early 2017 says as much.  After citing several powerful statistics, the authors write: “Compared with other leading causes of death, gun violence was associated with less funding and fewer publications than predicted based on mortality rate.”  The debate is over the impact of the Dickey Amendment, passed in 1996, which states that “none of the funds made available for injury prevention and control at the Centers for Disease Control and Prevention [CDC] may be used to advocate or promote gun control.”

Some Republicans in Congress say that the CDC is allowed to do research into gun violence even under the Dickey Amendment, but the evidence presented by Stark and Shah suggests that it is not being done.   Other Republicans have stated that the Dickey Amendment should be revisited. According to, Rep. Bob Goodlatte from Virginia said that it would be appropriate for lawmakers to review the policy. He is quoted as saying, “I don’t think it’s inappropriate — particularly if the original author of that says it should be examined — to take a look at it . . . to see if there is a way to do that, to promote the cause, the core pursuit of the Centers for Disease Control, which is to prevent disease, not to address issues related to things that happen because someone has a disease like mental illness.”

Clearly, the subject of guns is controversial. Would CDC research into gun violence help affirm human dignity? Or, would the research be too politically biased to be of any value?   Might there be some valuable data gathered that could help address this most tragic of issues? This is a conversation worth having.


Psychiatric advance directives

Even though I teach bioethics and teach about advance directives, I was not aware that there was such a thing as a psychiatric advance directive until I read this article in the online magazine STAT, which I found while browsing the articles listed on

The concept of a psychiatric advance directive makes so much sense that I am amazed that I hadn’t thought about it or read about it before now. Psychiatric advance directives allow people with a psychiatric illness that causes them at times to be incapable of making decisions about medical care to make and record decisions about treatment during times in which their disease is under control and they have capacity to make those decisions. This allows them to consent in advance to much needed treatment which they might refuse during times of incapacity and give direction on what treatments they would not consent to during those times of incapacity. It allows people with psychiatric illness to have control over their own lives that they commonly lose when the illness takes away their decision-making capacity. It can also help assure that they receive treatment from those that they know and trust.

This is something that many of us who are not psychiatrists need to be aware of so that we can encourage patients to take control of their own care in a positive way. When I investigated this, I discovered that my own state, Indiana, has a law regarding psychiatric advanced directives that makes them legally recognized and outlines the proper way to make such a directive. The National Resource Center on Psychiatric Advance Directives is an excellent resource on this issue.

This is something people need to know about.

Reviewing the ethics of paying human research subjects

Sometimes it is both necessary and proper to pay a person to participate in a clinical trial, of a drug or some other medical intervention, or a data-collection study, or something else that involves people.  An article in this week’s New England Journal of Medicine reviews many of the relevant ethical issues.

A link to the article is here.  Correction to initial post:  subscription or purchase does appear required.

Why pay somebody to be in a trial?  The main reasons are to reimburse them for unavoidable expenses, to compensate them for time that would not otherwise be required in the course of standard medical care or normal life, and, indeed, to get them to participate in the first place.  In cancer medicine, where I’ve worked, the subjects are cancer patients who are generally not paid to participate; they usually are willing to do so in the hope of possible benefit, plus, often, a sense of altruism.  But most drugs have their first human testing in healthy volunteers, to begin to identify potential safety concerns and understand how, and how rapidly, the drug is eliminated from the body.  In those cases, the research subjects are almost always paid, sometimes substantially.

Such payments are not necessarily unethical, as long as they are not too big.  If they are, then they could create an undue influence to participate.  That would upset the balance of benefits and risks and compromise true informed consent.  By well-accepted ethical standards for research on human subjects—many of which are codified in regulation—the risks to human subjects must not be excessive, must be avoided or mitigated to the extent reasonably possible and commensurate with the goals of the research, and must not exceed the foreseeable benefits of the research, either to the individual subject or to society overall (e.g., in the form of important medical knowledge), or both.

Payment to a subject is not considered a benefit in and of itself, but should be “neutral” to the benefit/risk assessment.

There’s no hard and fast rule about paying subjects—no single standard “fee schedule,” so to speak.  Rather, each ethics board reviewing a study must also review and approve the amount and timing of payments to subjects.  Again, such payments should be high enough to respect the subject’s contribution to the research, but not too high so as to give them incentive to participate when maybe they should not.  Also, it’s a general principle that payment should be in installments; generally, no more than 10-15% of the total should be held back to the very end of the study.  Why this last point?  Because it’s also a principle that subjects can opt out of a study at any time, but if they think “I have to stay in to the bitter end to get paid,” that could pressure them too much.

Note, BTW, that such pressure is not the same as coercion, which by definition involves a threat, and does not apply to this payment question.

Also, payments must be appropriate so that subjects don’t get a wrong idea about the potential value or efficacy of an experimental drug, or that they might be induced to try to be in more than one study at once.  You might be surprised how significant that last risk is.  In my past IRB work, we just to worry about “professional subjects” who make some level of living by going from one research study to another.  More than one at once means getting two or more drugs at once that probably ought not to be combined, willy-nilly.

And of course, the potential for economic exploitation of low-income individuals must also be considered and respected.

The NEJM article really doesn’t break new ground but is a helpful review for those interested in essential research ethics.  The FDA has also provided guidance, which can be reviewed here.

DIY CRISPR Kits – Gene Editing for the Rest of Us

One might think with the amazing advance of technology and easy access to nearly infinite data via the Internet that we, as a society, would see a reduction in false claims of benefit for novel medical procedures and untested medications. Sadly, it seems to be just the opposite. I seem to be spending gradually more time with my patients reviewing the results of their internet research for new solutions for their chronic back pain. Their efforts are laudable even though the “hoped for” benefits claimed in their researched solutions are woefully lacking. Unfortunately, often this exercise in reviewing the outside data takes valuable time away from the remainder of the office visit.

Reviewing false or confusing information is one thing but preventing patients from self-experimentation with untested medications or unproven treatments is another. Enter the biohacker and companies offering do-it-yourself (DIY) kits claiming to allow anyone to experiment with CRISPR (a method of genetic editing) for self-administration. Emily Mullin covers biohacking and DIY CRISPR very nicely in her recent article in the December Technology Review. To me, this has the feel of the 1980s when a curious kid with some basic programming knowledge, an inexpensive computer and a modem can access previously forbidden government systems, potentially unleashing havoc on the rest of us (WarGames, anyone?) After all, now that we know the human genetic code, all we need is for someone to just provide the instructions and tools for editing that code, then anyone could tweak their own DNA. Easy peasy lemon squeezy, right?

Recently, the FDA has been busy trying to prevent medical clinics from administering untested stem cell treatments (see Neil Skjoldal’s recent November blog entry on (Stem Cell Clinics & the FDA). Imagine the significant increase in the scope of the regulatory problem if individuals can order a DIY CRISPR kit off the Internet!

While we might chagrin at the naiveté required to believe the street-side pitch of the Old West Carter’s Little Liver Pill salesman, that same pitch via a modern tech savvy YouTube video (complete with separate internet links) somehow offers a new level of legitimacy. The Technology Review article speculated that one of the featured companies was preparing not a vaccine but a treatment for herpes. In less than 8 weeks from the article’s publication, Aaron Traywick, CEO of Ascendance Biomedical, publically self-injected himself with his firm’s untested and non-FDA approved “treatment” for herpes. The linked article by Reegan Von Wildenradt in the popular magazine Men’sHealth offered an excellent counter as to why this type of “science” might be suspect, including quotes from ethicist Arthur L. Caplan at NYU in support of the standard FDA process for screening medical treatments.

We often lament in this blog that technology is advancing so rapidly that we fail to have a fair public hearing and discussion of the ethics involved in a particular biomedical advance. Now it seems our time may be better spent speaking out first about the basic risks of the new technology and doing our best to support the FDA in their massive task of policing the Internet to prevent a DIY CRISPR kit from falling into the wrong hands – ours.

P.S. – I’m accepting names for the title of the future Hollywood blockbuster where the son of Matthew Broderick and Ally Sheedy injects himself with his own DIY CRISPR-modified DNA and …

Citizenship, Surrogacy and the Power of ART

A recent LA Times article by Alene Tchekmedyian explores a complicated case involving birthright citizenship, surrogacy and same-sex marriage. Briefly, a California man, Andrew Banks, married an Israeli man, Elad Dvash, in 2010. At the time, same-sex marriage was not legal in the US leaving Elad unable to acquire a green card for residency (via the marriage) so the couple moved to Canada where Andrew has dual citizenship. While in Canada, the couple conceived twin boys, Aiden and Ethan, using assisted reproduction technology (ART) whereby eggs from an anonymous donor were fertilized by sperm from Elad and Andrew and then implanted within the womb of a female surrogate and carried to term. When the US Supreme Court struck down the federal law that denied benefits to legally married gay couples in 2013, Elad applied for and was granted his greed card. The present controversy occurred when Andrew and Elad applied for US passports for the twins. US State Department officials required detailed explanation of the boys’ conception, eventually requiring DNA tests which confirmed Aiden to be the biological son of Andrew and Ethan to be the biological son of Elad. Aiden was granted a US passport while Ethan was denied. The family has since traveled to the US (Elad with his green card and Ethan with his Canadian passport and temporary 6 month visa) where they are now suing the State Department for Ethan’s US birthright citizenship. They are arguing that the current applicable statute places them wrongly in the category of children born out of wedlock rather than recognizing their marriage, thus discriminating against them as a binational LGBTQ couple.

Birthright citizenship is a complicated legal arena and I am no lawyer. The US is even more complicated because we allow birthright citizenship to be conferred jus soli (right of the soil) in addition to jus sanguinis (right of blood). The twins were not born in the US so establishing “bloodline” is needed. The law specifies conditions where one parent is a US citizen and one is not a US citizen, and there is further differentiation depending on whether the children of the US citizen were born in or out of wedlock. They also vary depending on whether the US citizen is male or female, with the law more lenient (easier to acquire citizenship) for the child of a woman than of a man.

While the legal challenge here will almost certainly involve potential issues of discrimination of LGBTQ binational couples, the problem is really with the current legal definitions of parent as it relates to surrogacy in general. The State Department actually has a website dedicated answering questions related to foreign surrogacy and citizenship. The real issue is that the State Department relies upon genetic proof of parentage for foreign surrogacy births. In the present case, the surrogacy occurred outside the US, Elad is the genetic father of Ethan and Elad is not a US citizen; therefore Ethan is not a US citizen. While I’m deep in the weeds here, technically, Aiden and Ethan are not fraternal twins in the usual sense but rather half siblings (and this assumes that the donor eggs are from the same woman; otherwise the boys would be unrelated despite sharing the same pregnant womb through the magic of ART). Had Ethan been physically born via surrogacy in the US, he would have acquired his citizenship via jus soli (see US map for surrogacy friendly states near you).

This problem is just as confounding for heterosexual couples using foreign surrogates, and the problem is global. A more detailed technical legal discussion may be found here. A heterosexual couple using donor eggs and donor sperm and using a foreign third party surrogate would have exactly the same problem establishing US citizenship for “their” child. A similar problem would exist for an adopted embryo gestated in a foreign country by a foreign surrogate. If either the egg or the sperm of the US citizen is used for the surrogate birth, the child would be granted birthright citizenship.

The main difference for homosexual couples is that only one spouse can presently be the biological parent. I say “presently” because with ART it is theoretically possible (and may become actually possible in the future) to convert a human somatic cell into either a male sperm or a female egg. At that point, both spouses within a same-sex marriage could be the biological parents of their child. The present legal issue is not the result of a cultural prejudice against anyone’s sexuality but with the biological prejudice of sex itself. ART has the potential ability to blur the categories of sex as culture is now blurring the categories of gender. Should we consider this a good thing?

Given the present technological limits of ART, the simple issue of US citizenship could be resolved in all these cases if the US citizen parent simply adopted the child. Elad correctly points out that while adoption of Ethan by Andrew would grant Ethan US citizenship, it would not grant Ethan birthright citizenship, a necessary requirement for Ethan to someday run for US president. ART may be forcing us to look at changing our definition of parent but should it change our definition of biology? Ethan is the biological son of Elad. He is able to be the legally adopted son of Andrew and enjoy the benefits of US citizenship as currently does his half brother Aiden. He is not able to become the biological son of Andrew and enjoy the additional benefit of birthright citizenship via jus sanguinis.

Should we change the definition of birthright citizenship because ART is changing our definition of parent?