Bioethics and the COVID-19 National Emergency

What a difference a couple of days can make. In the last blog entry, Steve Phillips discussed the problems that fear and panic are causing as we deal the many unknowns of the COVID-19 pandemic. While the current incidence, prevalence, and mortality of COVID-19 lags behind that of seasonal influenza (as well as past influenza pandemics caused by novel influenza strains), the eventual morbidity and mortality remain unknown. This uncertainty has caused public panic, which has lead to significant disruption of life, as we know it. A national emergency was declared in the US last Friday, calming some fears but reinforcing others. Using the four Principles of Bioethics as a simple outline, the following are some of the bioethical implications of the current COVID-19 pandemic I have recently considered – there is certainly space to add others.

Autonomy: The highly infectious nature of the new virus and the risks for the population as a whole place severe restrictions on individual autonomy. An individual is really not free to do whatever he or she wishes to do at this time. Measures to blunt the rate of infection spread have limited travel and will eventually cause some to be quarantined, perhaps against their will. Necessary public health measures will conflict with individual health decisions and desires. Do all individuals have a right to be tested for COVID-19 (particularly now that the test will shortly be free of charge) because they have a right to know or demand to know, or will we defer to protocols of best practice in the face of currently limited test availability, all of which are admittedly our best statistical utilitarian “guesstimates” for the benefit of the population as a whole?

Justice: The details of the pending National Emergency legislation are still not well known as of this writing but will apparently provide financial support to individuals and businesses affected by COVID-19 and this is certainly good, given the considerable disruption already caused by the fear and panic related to the disease, and the projected future impact of the actual illness itself. It is interesting to me that one result of this legislation may be that, with accurate testing, an individual or business will get federal benefits for having COVID-19 related problems but may not for similar influenza related problems. This is despite the fact that from an individual morbidity and mortality standpoint, particularly on a global basis, both COVID-19 and influenza both can end up causing severe health and secondary financial consequences. Asked differently, does justice require federalizing other viruses (or diseases) that, on a case-by-case basis, cause similar individual financial disruption as we will see from COVID-19?

Beneficence: I believe most people want to be helpful to others and do the right thing. Any desire to help others is somewhat counter balanced by lack of knowledge of exactly how infectious is the COVID-19 and therefore what risks do we assume for ourselves and for our immediate family in any benevolent activity in which we engage. Deciding how to help others without harming oneself will become clearer as the public health data grows.

Non-maleficence: Our natural tendency for self-preservation in uncertain times has resulted in a rush to hoard food and supplies, causing a severe strain on supply of these resources. Supply chains in a global “just-in-time” inventory structure are much more fragile as a result of COVID-19 than many had anticipated. Important medications, medical supplies, standard foodstuffs and infant needs are suddenly in short supply and are concerning; recent news videos of fights at your local Cosco over the last role of toilet paper are concerning for other reasons. Calls have gone out asking citizens to “hoard less”; hopefully these pleas will not fall on deaf and selfish ears.

For the Christian, wisely loving our neighbors may be the best ethical guideline and will look different in various regions and will likely change over time as we get a better understanding of COVID-19. I echo the many prayers for the health and safety of all affected by this pandemic and an extra measure of the Lord’s wisdom and strength for those in public health rising to meet and resolve this national (and worldwide) emergency.

A principalist argument against heritable genome editing

In May of 2019 The New Bioethics carried a paper (purchase or subscription required) by Jennifer Gumer of Columbia and Loyola Marymount Universities, summarizing an argument against heritable genome editing (the kind in which an embryo’s genes are edited so that the change will be passed down to the subject’s descendants), based on Belmont principalism.  A brief outline of the argument:

  • Uncertainties about the safety of the procedure make it highly unlikely at best that the principle of nonmaleficence (“first, do no harm”) will be satisfied.  Even if the technique substantially eliminates unintended, “off target” gene changes or mosaicism (some cells have the change, others do not), uncertainty will remain about whether interactions between genes may be altered, potentially beneficial positive effects of the “bad” genes may be lost, or the edited gene may have different effects in different environments.  Further, the edited gene will persist in the human population. 
    • At least, this concern would appear greatly to limit the number of genetic conditions that would be appropriate for heritable editing, to a few where a very discreet genetic abnormality that causes a devastating disease is well understood.  Such limits would almost certainly be unenforceable, as efforts to edit genes that clearly cause disease would be expanded to edit genes that predispose to or increase risks of disease, or event to insert or add genes thought to protect from disease.  The additional complexity of the tasks would further confound attempts to calculate risks.
  • The justice of heritable genome editing could well be limited by:
    • The costs, either in the individual case or more broadly on the health care system because in vitro fertilization would almost certainly be required to carry out the heritable editing;
    • Diversion of resources from dealing with environmental or socioeconomic conditions with greater overall impact on the health of the human population;
    • A bias against people with disabilities may be fostered.
  • If heritable gene editing included efforts to enhance traits perceived desirable, harms could arise from miscalculations about whether such enhancement truly yields a better life (e.g., if one could be genetically altered to require less sleep), or pressures on the offspring to perform up to enhanced expectations, again violating the principle of nonmaleficence.
  • Efforts at enhancement would create eugenic pressure to extend the enhancement widely through the population, and/or create a split-class society of (presumably wealthy) genetically enhanced “haves” and unenhanced “have nots,” violating the principle of justice.
  • Limiting heritable genetic editing to the few cases of single-gene-caused serious diseases would benefit only a few affected individuals and their parents, by helping the latter to have genetically-related, unaffected offspring, while risks such as those outlined above could affect many, either by creating direct risks in the population or indirect risks of lost opportunities from deferral of attention to other health and societal problems.
  • Likewise, an appeal to autonomy fails.  Procreative freedom has not yet been held to include a right to bear a genetically-related child, much less one free of undesired traits, and even if such a right were recognized, it would not be unbounded, but would be subject to limits set by concerns such as well-being of the resulting child and societal concerns.  Moreover, parental exercise of autonomy for heritable gene editing would limit the autonomy of society by potentially exposing others to unintended risks without their consent, and would limit the autonomy of gene-edited descendants, whose genomes would be determined at least in part by the decisions of their ancestors.

Thus, in brief, runs the argument.  Like the utilitarian argument summarized in my February 6 post, these contemporary discussions are important to review from time to time.  Further perspectives and analysis to follow in future posts.

The Advancing Slippery Slope of Organ Donation and Euthanasia

The timing of organ donation relative to death of the donor is critical to the survivability and future functioning of the donated organs in the transplant recipient. With cardiovascular death, circulation ceases in the donor causing his or her death, making it legally and ethically permissible to retrieve the organs for donation. Unfortunately, cardiovascular death also means that the donated organs have also lost circulation at the moment of death and begin to suffer local tissue destruction, affecting the very health of the donor organs and success of transplantation. If the donor has sustained severe brain damage but without cardiovascular death, he or she may be considered dead secondary to whole brain death criteria. This allows transplant surgeons to begin harvesting the organs from the donor while the organs are still enjoying a normal oxygen supply, maximizing their survivability for the future transplant recipient. These organs are far more viable than those from donors who had cardiovascular death, similar to the situation of a healthy living organ donor voluntarily donating one of her two kidneys. Crudely, the less dead you are when you donate your organs, the better chance of success of the organ transplantation for the recipient. Knowing the exact moment when the donor dies maximizes the timing and therefore the success of the transplant process.

Enter euthanasia, in particular the growing acceptance of medical aid in dying (MAID) or physician assisted suicide (PAS), where a physician is directly controlling the dying process. The union of MAID/PAS and organ donation would seem to be a marriage made in transplant heaven. By controlling the time of death of the donor, the subsequent immediate harvesting of the donated organs would theoretically maximize their viability. What could be better?

Euthanasia via organ donation, of course.

The NEJM offered a recent Perspective entitled “Altruism in Extremis – The Evolving Ethics of Organ Donation” by Dr. Lisa Rosenbaum. The article is behind a subscription firewall that does offer limited free access with registration. In short, Dr. Rosenbaum explores many of these ethical issues in organ transplantation as she describes the case of a man who was dying of amyotrophic lateral sclerosis (ALS or Lou Gehrig’s Disease) and wanted to donate his organs in the process of his MAID/PAS (hence her title “Altruism in Extremis“). In his case, the plan was to donate one kidney, then be taken back to the intensive care unit and extubated, technically allowing the ALS respiratory muscle weakness to cause his death, and the remainder of his organs harvested immediately thereafter. The hospital ethics committee approved the plan but the hospital attorneys warned the doctors they might be “charged with murder or acceleration of the patient’s death” (facts not apparently obvious to the doctors). In the end, the patient died in hospice care, unable to donate his organs.

An interesting sidebar discussion of a similar case involving “live donation prior to planned withdrawal” (LD-PPW – that is, removing the organs before withdrawal of life support – what I have labelled Euthanasia via Organ Donation) was considered ethically permissible but politically problematic, the concern being LD-PPW might reduce the number of willing donors who saw the “surgeons as ‘vultures’ stealing organs from those not quite dead”.

What struck me was the obvious slippery slope on which we find ourselves. The question as to whether the patient in Dr. Rosenbaum’s article should proceed with MAID/PAS given his terminal ALS was NOT the ethical debate but rather how to ethically marry MAID/PAS (perhaps ideally with LD-PPW) with his desire for organ transplantation. Labeling this type of organ donation as obviously altruistic will undoubtedly place further pressure on some presently terminally-ill patients to get on with their deaths to make their organs available for the rest of us who apparently have an unspecified ethically superior claim to their use. Organ donation from a living donor is itself a supererogatory act – additionally encouraging the donor’s suicide (and labelling it altruistic) just to improve the success of the transplant is calling evil good. Why is one more minute of life-giving use of my heart or liver by me necessarily less ethical than 1 year of life-giving use of those organs in another?

P.S. Frankly, I thought the vulture metaphor failed as even vultures normally wait for their prey to be dead before enjoying their harvest.

Twenty-first Century Divorce: Who Gets Custody of the Embryos?

A recent CBS news story provides yet another example of the technology and legal cart pulling the ethical horse.

In short, in 2014, an Arizona couple used in vitro fertilization (IVF) to preserve her eggs after she learned she had breast cancer and would require chemotherapy. The woman’s then boyfriend originally declined to be the sperm donor but later agreed when the woman, perhaps desperate to preserve her eggs, considered using a former boyfriend as the donor (fertilized eggs survive cryogenic preservation far better than unfertilized eggs). The couple executed a contractual agreement, provided by the clinic, as to the disposition of the frozen embryos (“their joint property”) should their relationship divorce or dissolve prior to implantation. They married several days later, underwent IVF yielding 7 embryos, which were cryogenically preserved and the woman underwent successful chemotherapy.

Unfortunately, after 2 years of marriage but prior to implantation, the husband filed for divorce. The pre-IVF contract stipulated that both husband and wife had to mutually agree on the disposition of the embryos – if not, they agreed a court could decide the embryos’ fate. Recently, the Arizona Supreme Court determined that the embryos should be put up for adoption, siding in one sense with the ex-husband to prevent the ex-wife from “using” the embryos. The decision upset many in Arizona to the point where the Arizona Legislature enacted a law to award the frozen embryos, in the future cases of divorce, to the spouse who “intends to use them to have a baby.” The new law will not benefit the ex-wife so, at the time of this blog entry, she was considering whether or not to appeal her case to the US Supreme Court.

There is a lot here to consider. I want to focus on just a few issues. First, I left scare quotes around several of the terms used in this case. The frozen embryos are indeed legally “joint property”, much like children in other cases of divorce. The couple could have just as easily checked the box on the contract to select “Destroy the Embryos” in case of their divorce. This same choice is one that many married (and unmarried) couples make regularly in IVF absent divorce when deciding the fate of unwanted or unused embryos following successful pregnancy and birth from prior IVF cycles. So asking a court to decide the fate of the frozen embryos is similar to children of divorced couples (though their “destruction” is not currently an option.)

“Using the embryos” is terminology that further emphasizes the commodification of frozen embryos as we consider them as a convenience for, or, for the sole benefit of, the parent(s). While I can empathize with the ex-wife’s desire to preserve her ability to have future children in the face of cancer treatment, her choice of an ambivalent (then) boyfriend over an ex-boyfriend as the father of her future children has proven disappointing, if not disastrous, for her in the present. It is harder for me to grasp the rationale of the ex-husband, who, though previously agreeing to father his ex-wife’s children, now (vindictively?) refuses to allow her to mother them, particularly since (continuing with my horse analogy) that fatherhood horse left the barn years ago.

As we allegedly advance our technical and scientific skills by increasing the various situations in which women can become pregnant, we are demanding more legal decisions when these new situations cause conflict rather than discussing and agreeing beforehand whether or not to permit these situations from occurring in the first place.

Is personhood a biased term?

In ethics it is very important to communicate with clearly defined terms. This becomes especially important when dealing with a very divisive topic such as abortion. Fifty years ago, in the ethical debates about abortion, some expressed concern about how the term human being was used by those who claimed that abortion was wrong. The basic argument for the position that abortion was wrong went like this: It is wrong to kill an innocent human being. A human fetus is an innocent human being. Abortion involves killing a human fetus. Therefore, abortion is wrong. It was claimed that this was not a proper argument because the term human being meant different things in two of the premises. In the first premise human being means an individual with full moral status, but in the second premise human being is used in its biological sense. The claim was made that not everyone believes that every member of the human species has full moral status, so we should not use the term human being in this argument. It was proposed that everyone involved in the discussion abortion use the term person to represent those individuals who have full moral status. Since this discussion in the 1970s the term person has been used in the ethics literature as a technical term which is defined as those individuals who have full moral status.

However, it seems to me that the term person has the same problem as the term human being. In common usage it means other things than individuals with full moral status. It is commonly used to refer to adult human beings although children are sometimes included in who we think of as persons. It many times means those with whom we communicate and have a relationship. In legal terms it means something different. It refers to those who have certain rights and responsibilities under the law. It involves those who can be held accountable for their actions and those who can do such things as owning property and entering into contracts. The legal definition a person can include entities that are not human beings such as corporations. This becomes a problem when we look at how we define who is a person. Instead of looking at how we should understand who has full moral status, we tend to look at who fits with how we commonly use the term person. The Supreme Court in Roe v. Wade stated that “the unborn have never been recognized in the law as persons in the whole sense,” but that does not necessarily mean that the unborn do not have full moral status. Mary Ann Warren asserted that it is those who we consider to be persons rather than those who are genetic human beings who make up the “set of beings with full and equal moral rights.” However, she defined personhood based on cognitive capacities that are characteristic of fully healthy adult human beings who are moral agents and leaves out many, such as infants and those with cognitive disabilities, who we would commonly consider to have full moral status.

Using the terms human or human being to represent those who have full moral status assumes that all biological human beings have full moral status. Using the term person to represent those who have full moral status assumes that having full moral status is based on something other than being a biological human being. But that is the question. What we are trying to decide is whether it is correct to decide who has full moral status based on being a member of the biological category of beings we call human beings or based on having certain cognitive attributes or capacities. Since both terms essentially beg the question, it would be better to use neither. In discussing whether a fetus or some other individual has full moral status we need to focus on how we decide who has full moral status and recognize that using the terms human being or person in a moral sense represent positions on that issue.

Autonomy of Access vs. Autonomy of Decision Making in Opioid Addiction

A recent Perspective in The NEJM by Dr. Amy Caruso Brown discussed the ethics consultation involved in treating addiction as a terminal disease. Since the article is behind a subscription firewall, I will briefly summarize the case and some of the ethical problems outlined by Dr. Brown. The focus of this blog is to ask the limited question as to whether or not there is sufficient patient autonomy to make decisions in an addiction situation described as terminal if, as Dr. Brown claims, society has failed to provide sufficient access to and services for patients with chronic addiction and/or mental health problems associated with similar levels of addiction.

Dr. Brown’s patient, Ms. A, was an unemployed, homeless woman who had a history of chronic opioid use/abuse and had failed multiple impatient rehabilitation, methadone maintenance and buprenorphine treatment programs. She was hospitalized for septic shock secondary to endocarditis, which had damaged two heart valves to such a degree that she was not considered healthy enough to survive surgery to correct the problem. Her only relative, a brother, who had recently finally cut ties with his sister to protect exposing his children to her illness and habits, agreed to a do-not-resuscitate order. To the surprise of her treating staff, her condition stabilized to the point where the cardiothoracic surgeon agreed to operate. She declined, wanting to be discharged so she could seek morphine to self-treat the intractable chest pain. She fired her attending physician as he made the ethics consultation referral questioning her decision-making capacity.

Dr. Brown nicely outlines the particular issues of legal capacity requirements required in New York and the limited capacity that surrogates have if they we not previously designated as such. Dr. Brown also discussed whether or not Ms. A met the criteria for terminal illness, specifically whether or not ongoing chronic opioid addiction, in the face of now severe cardiac compromise, would be expected to cause death within 6 months. Dr. Brown maintained that Ms. A was lucid and capable to make informed decisions, which were that she “simply wanted to go home, or to a hospice facility, and die peacefully.” Dr. Brown did not find her depressed or emotionally compromised, though quoted her as saying “I’m done. I’m ready to be done. I’ve fought long enough” and described her as “exhausted and grieving”. Dr. Brown believed Ms. A’s “decisional capacity was clear.”

Finally, Dr. Brown argued that society had failed Ms. A by not facilitating access to a treatment program that “included medication for opioid use disorder (OUD) – preferably initiated in an inpatient setting and coupled with ongoing trauma-informed mental health care and various social supports – [in the absence of which Ms. A] would almost certainly have a relapse”, further making it likely she would die within 6 months. Though the article noted Ms. A had previously failed inpatient rehabilitation, methadone maintenance and buprenorphine, it was not stated how coordinated or integrated the previous programs were. Was the proposed program new or simply a second (or third) chance through a similar program? Thankfully, Ms. A decided to accept palliative terminal care, which resolved her homeless situation, as it would be provided at an inpatient facility.

What if Ms. A had declined inpatient palliative care? Dr. Brown made a strong case that Ms. A’s social situation (poor, homelessness, mental health history of abuse and chronic opioid dependence/abuse) limited access to an appropriate treatment program for her problems, likely the only one with any expectation of success, however limited. Even if we grant that Ms. A was indeed terminal and had clear decision-making ability not compromised by depression, ongoing opioid dependence and other mental health factors, did her social situation really allow her to be autonomous in decision making? Said differently, how can we consider her autonomous for decision-making when she apparently lacks autonomy for access to her treatment? Further, how much support can an individual demand or expect from society and still be considered autonomous? I have touched on a similar issue in this blog previously with regard to serial pregnancy in opioid addicted women, asking when should the risks to the children (and social and financial burden to society) supersede the mother’s autonomy for having more children?

We need to improve access to treatment and support for mental health in general and opioid treatment in particular. This will likely include further discussion regarding the level of autonomy of those needing that treatment and support.

2020, or 20/20?

Near the end of 2018, He Jiankui was on the world’s stage announcing that he had edited the genome of twin girls, in the hope of making them resistant to HIV. On Tuesday, December 31, 2019, the Wall Street Journal (WSJ) printed a report that Dr. He and two others have been convicted of “illegally practicing medicine related to carrying out human-embryo gene-editing intended for reproduction.” (online version here).

A court in Shenzhen concluded that the defendants had acted for “fame and profit,” when they “deliberately violated the relevant national regulations, and crossed the bottom lines of scientific and medical ethics.” For the crime committed, He received the most severe sentence. In addition to the three-year prison sentence, He is banned for life from “working in the field of reproductive life sciences and from applying for related research grants, “ according to the WSJ.

The Xinhua News Agency also noted that a third genome-edited baby had been born, and that this child, along with the previously born twins, “would be monitored by government health departments.” The WSJ did not state for how long the monitoring would continue. Not only were the children experimental subjects as embryos, but they continue to be subjects as well. Further, these genome effects will affect their progeny, potentially into perpetuity. Additionally, the Smithsonian Magazine reports that in the summer of 2019, He met with “investors to discuss a potential commercial genetic modification clinic in Hainan, which aims to become a ‘world-class medical tourism hub’.”  One might reasonably call this “a crime against humanity,” even if it does not include genocide of humans already born. (For further reading, see David Luban, “A Theory of Crimes Against Humanity”)

In the print edition of the WSJ, alongside the article on He is an article about Pastor Wang Yi of the Early Rain Covenant Church. Pastor Wang was sentenced on 30 December to nine years in prison. His crime was “incitement of subversion of state power and illegal business operations” (online article here).

Consider that a pastor receives a nine-year sentence for an offense against the State; and a scientist, a sentence of three years for a crime against multiple generations, and indeed, humanity. In the year 2020, we could use a check of our understanding of what is important in the life of the world. Would that our vision were 20/20 also.

Dementia and the value of human life

Recent public reporting of some cases in Canada of people with dementia whose lives have been ended by euthanasia have caused me to think about the value of human life in those who have dementia. Canadian law requires the person whose life is ended by euthanasia to have mental capacity for informed consent, intolerable suffering, and a foreseeable death. It was initially thought that patients with dementia would not be candidates for euthanasia under the Canadian law because of the requirement for mental capacity, but now there euthanasia providers who have concluded that there are some patients with dementia who have sufficient symptoms from their dementia to qualify as having intolerable suffering but still have adequate decision-making capacity. The discussion there has focused on whether person who is at the stage of dementia that causes intolerable suffering can still have adequate mental capacity. I have a different concern.

When we try to define intolerable suffering in the context of euthanasia it appears to mean that the person who is requesting euthanasia has decided that the effects of an illness have reached the point that the illness has made his or her life not worth living. When we talk about intolerable suffering and euthanasia the first image that comes to mind is a person with excruciating and untreatable pain, but it turns out that pain is not the most common reason for people to request euthanasia. It is more commonly requested due to a loss of control and increased dependency. This is not surprising since we live in a society that places high value on independence and autonomy. However, is independence really what makes human life worth living or is that a widely believed but untrue fiction in our society? Aren’t we all dependent? As children we are dependent upon our parents. As we go through adulthood, we are dependent on spouses and friends. As we age, we become dependent on our children and neighbors. Loss of independence makes us more clearly human, not less human. The impairments of old age, whether they be physical or mental, make it harder for us to deny our dependency, but loss of control (which is what loss of independence is) and increased dependency should not be seen as something that makes life not worth living. It draws us deeper into the relationships that are an essential part of being human.

Living with dementia is difficult for the person with dementia and for those who love and care for persons with dementia, but it does not make the life of a person who has dementia not worth living. The person with dementia is still a person who has relationships that are important, even when the one with dementia can no longer remember who those people are, because the person with this dementia is still the same person. He or she is still the mother or father, sister or brother, or friend. He or she is still a uniquely created child of God. Our response to those who feel that life is no longer worth living because of the loss of cognitive abilities and independence should be to help them understand that their lives are worth living because they are valuable to us.

Sociopaths in Medical School

The NEJM recently had an interesting article calling on medical schools to do a better job identifying students who exhibit “unprofessional behavior” before allowing them to graduate. The link for that article is HERE (subscription required). While admitting that it was difficult to consistently and reliably identify such students, the authors claimed that every medical school staff annually could likely identify one or two students “whom they would not allow to care for their family.” The article goes on to describe the barriers that prevent medical schools from accurately identifying unethical behavior in their students and some of the problems associated with trying to use the limited data that is available to delay or even prevent such a student from graduating medical school.

Going so far as to label students with unethical behavior as sociopaths is admittedly hyperbole on my part for the sake of rhetoric. In my defense, the article does touch upon the fact that there are a few physicians, presumably in every class, who commit “criminal or malicious acts”. The authors then go on to ask how we might identify these individuals before they behave “unprofessionally”, ideally before they graduate medical school. I presently have no doubt that anyone who has ever attended medical school can think of at least one person in their graduating class whom they would prevent from treating their immediate family.

I heard an excellent lecture on this issue more than 15 years ago by Dr. John Patrick, former Associate Professor of Clinical Nutrition at the University of Ottawa, who now speaks worldwide on issues of medical ethics, culture, public policy and the integration of faith and science. In speaking to a group of medical students about the need for transcendence in Hippocratic Medicine in a lecture entitled “Meaning and Purpose in Medicine”, he says about the sociopaths in their midst (beginning at 38:25 in the audio):

“…you can name them in your class already, you know who they are. You could tell me in your class the two or three people who are likely to lose their licenses for immoral or bad behavior in the future. The faculty never have a clue. You know. But you have already left Christian ethics, and loyalty dominates your class, so you don’t tell us. We find out 5 or 6 years later when they lose their license. And nothing on their university transcripts but all the students are not surprised.”

I originally wondered about the veracity of this claim so, for several years, I conducted a simple survey of the first year medical students in our local medical school. For a period of time, I was the very first clinical lecturer the students heard as they prepared for their first exam on the anatomy of the spine, just 10 days after beginning medical school. At the beginning of the lecture, I asked the students to look at me directly and, without speaking or glancing at their fellow classmates, answer the following question in their head: “After being together for the past 10 days, have any of you met at least one person in your first year class to whom you would not trust to care for someone you loved?” Invariably, over half of the class smiled, many while quickly glancing in the direction of the same one or two potential sociopaths in their class.

Why is this bioethically important? Dr. Patrick contends, and I suspect many of the readers of this blog agree, while the study of medicine is a scientific endeavor, focused on the accumulation of scientific knowledge, the practice of medicine is mainly a moral endeavor. Physicians are trying to work with their patients to help them do what they “ought” to do, as agreed upon by both the physician and patient. Such an endeavor demands mutual respect and trust so there is no place for unethical behavior on the part of the physician caring for a vulnerable patient.

Sadly, as both Dr. Patrick and the authors of the recent NEJM point out, while we are fairly adept at selecting medical students who can handle the academic rigor and have sufficient self-discipline to succeed in medical school from a knowledge standpoint, we remain woefully inadequate at assessing the ethical character of those same students to make sure they have the necessary moral integrity to actually practice medicine.

Unless that can be remedied, we should expect the continued gradual replacement of rich, lifelong, covenantal doctor-patient relationships with sterile, limited, contractural provider-client partnerships.

[I encourage readers to follow the link to Dr. Patrick’s website for a wealth of audio lectures on bioethics, culture and the integration of faith and science. Begin with the above link for “Meaning and Purpose in Medicine”]

Experimental Subjects for Life?

More than a year after the birth announcement of genome-edited babies in China, we are only slightly more informed of He Jiankui’s experimentation, the results of which are named “Lulu” and “Nana.” Although apparently approached, neither Nature nor the Journal of the American Medical Association (JAMA) chose to publish He’s work. Antonio Regalado reported on an unpublished manuscript in “China’s CRISPR babies: Read exclusive excerpts from the unseen original research” in Technology Review on 3 December 2019. The Technology Review article includes not only excerpts of the manuscript from He, but also reactions from Stanford law professor Hank Greely; University of California—Berkeley’s gene-editing scientist Fyodor Urnov; the scientific director of Eugin assisted reproduction clinics, Rita Vassena; and reproductive endocrinologist Jeanne O’Brien, from Shady Grove Fertility.

Regalado summarizes some of the problems with Chinese experiment as follows:

 . . . key claims that He and his team made are not supported by the data; the      babies’ parents may have been under pressure to agree to join the experiment; the supposed medical benefits are dubious at best; and the researchers moved forward with creating living human beings before they fully understood the effects of the edits they had made.

Greely points out the lack of “independent evidence” of the claims made in the paper. Urnov labels the paper’s claim of reproducing the usual CCR5 variant “a deliberate falsehood,” and calls the statement about the possibility of millions being helped through embryo editing “equal parts delusional and outrageous.” O’Brien’s concerns include the possibility of coercion of the couples involved, and, noting the social stigma of HIV-positivity in China, she poses the question of whether this was a genetic fix for a social problem. Certainly, the Chinese experiment raises many questions, including how a culture views children. Are children gifts to be received or projects to be completed? Is it appropriate to subject children to experimental research because we can? One of the quotes from the paper reads, “we have made a follow-on plan to monitor the health of the twins for 18 years and hope to then reconsent for continued monitoring through adulthood.”

We would be remiss if we thought that China alone plans to remake humanity. Vassena is quoted regarding He’s study:

Unfortunately, it reads more like an experiment in search of a purpose, an    attempt to find a defensible reason to use CRISPR/Cas9 technology in human embryos at all costs, rather than a conscientious, carefully thought through, stepwise approach to editing the human genome for generations to come.  As the current scientific consensus indicates, the use of CRISPR/Cas9 in human embryos destined to give rise to a pregnancy is, at this stage, unjustified and unnecessary, and should not be pursued.

Vassena, who directs a fertility enterprise, it should be noted, appears comfortable with impacting the human genome for generations to come:  It just needs to be a “reflective” and “mindful” approach. That is chilling. Would she, or the study’s authors, or Greely, or Urnov, or O’Brien sign up to be a science experiment for the rest of their lives? I would not consent—not for myself nor for my children—no matter how “reflective” or “mindful” the researcher happened to be.

Finally, “Lulu” and “Nana” should be known as more than the results of someone’s laboratory experiment. They are human beings, not laboratory rats or cells under a microscope to be studied at the will and convenience of the experimenters.