International commission: go slow with heritable human genome editing

The international commission on heritable human genome editing (HHGE), formed by the US National Academies of Medicine and Science and the Royal Society of Great Britain, has issued it report.  The 224-page report is freely available for reading here, and a summary news report can be accessed here.

The upshot:  not too fast.  The commission’s 11 major recommendations, briefly reworded and rearranged in order, are:

  • Before attempting any pregnancy with a gene-edited human embryo, “a significant cohort” of edited human embryos should be studied in the laboratory to ensure that the desired gene edit(s) “can be performed with sufficiently high efficiency and precision to be clinically useful.”  (No attempt would be made to bring these embryos to birth, and they would exist solely for research purposes, after which they would be destroyed.)
  • This efficiency and precision have not been demonstrated yet, and “no attempt to establish a pregnancy” with an edited human embryo should be made until they have.
  • Even then, the attempt should come only after “extensive societal dialogue” within any country whose leaders are considering endorsing the attempt.  This dialogue would include medical and scientific concerns, which the report addresses, and also “societal and ethical issues that were beyond the Commission’s charge.”  (Your correspondent has just begun reading the report, so cannot say yet whether the Commission considered how to proceed if one country green-lights edited human pregnancies while others do not.)
  • The only conditions that should be considered for editing are those of a serious disease caused by a single gene abnormality, for which the prospective parents have a less than 25% chance of having an unaffected child using current preimplantation genetic diagnosis (PGD).  Further, the resulting edited gene would be common and non-disease causing in the general population, and no embryos without the diseased gene would be edited. (This would seriously limit the use of HHGE—not permitting it for genes that increase the risk of cancer, for example—but, like the first point, would also raise concerns for conservative ethicists who consider all human embryos, from conception, to be human beings with the right to life.  If you’re troubled by PGD in general, this recommendation won’t satisfy you.)
  • The above would need to be followed for every proposed “treatment” of genetic disease—there is no “one-size-fits-all” approach to setting up a regime for heritable gene editing in general.  (This would have the effect of limiting the “industrialization” of HHGE, it appears.)
  • The actual transfer of an edited embryo to a woman’s uterus should be subject to (future) “rigorous” regulatory review and approval—that is, the edited embryo would be checked, in the laboratory, before transfer, to be sure that the edit had succeeded.   After transfer and through pregnancy, birth, and the life of the individual, close medical monitoring would be mandatory to learn what medical problems may have arisen.
  • A potential work-around should be studied in the laboratory: making human eggs and sperm from stem cells, with the intent of being able to use them for in vitro fertilization to give rise to an embryo without the abnormal gene.  However, the Commission recognizes that there are other canned worms, so to speak, to be dealt with here—such as whether this approach to begetting children is ethical at all, apart from any use of gene editing.
  • Any country embarking on HHGE in actual pregnancies should first put in place “mechanisms and competent regulatory bodies” to oversee standards and adherence to them, publication of results, and oversight in general.
  • An International Scientific Advisory Panel should be established in advance to oversee the progress of the science overall, before pregnancies are attempted—essentially, a single point of review to prevent intrepid scientists from “going rogue,” as it were.
  • An international body (presumably a different one from the above) with appropriate expertise should review every new proposed medical application of HHGE before pregnancies with the relevantly-edited embryos are established.  So, presumably, attempts to edit the gene for Huntington’s disease would be assessed separately from attempts to edit the gene for sickle cell anemia, for example.
  • An international mechanism should be established to adjudicate cases of alleged deviation from received guidelines or standards, and its’ results should be transmitted to individual governments and publicly released.

It looks like a careful report, welcome in its caution, although, as noted, those who hold that human life begins at conception will still likely object to the endorsement to continue with laboratory-based research.  “Just say no” to the prospect of HHGE—a position your current correspondent has consistently advocated on this topic—does not appear to be in view.  One might also be forgiven for skepticism over the effectiveness of any international body, given the controversies that arise from our existing international bodies for medicine and health, not to mention other endeavors.  Some such efforts, such as the regulatory harmonization of human clinical trials and drug development that governs the US, the EU, and Japan, work pretty well, but arguably are limited.

It is also worth mention that the California Institute of Regenerative Medicine (CIRM), established with Proposition 71 in 2004, ostensibly to translate embryonic stem cell research into cures (with creation and destruction of human embryos for the purpose), is proposed for renewed public funding in California with Proposition 14 in this November’s election.  Nothing approaching a cure was achieved under the CIRM, and even proponents of human embryonic stem cell research argue a renewal is unnecessary, because there is plenty of private money supporting related work already.  Further, the CIRM came under charges of insider dealing, because it needed to draw its leaders from the small pool of experts who tended to have career or monetary interests in the field to begin with, raising repeated concerns about a conflict of interest.  Would such potential conflicts plague the national and international bodies proposed by the HHGE Commission?  (Full disclosure: your correspondent will eagerly vote “no on 14” on his mail-in ballot this fall.)

Finally, so-called “somatic” gene editing—a fundamentally ethical undertaking by which a person’s cells may be altered to make them into a treatment for disease—is here to stay, as are certain forms of gene therapy that don’t involve heritable changes.  Expect to hear about those more in the future; they are subject to standard human subject research concerns, and to justice concerns like the eventual costs of the treatment.  Those topics for another day.

Pediatric Fertility Preservation for Hormone Suppression in Transgender Youth

Last week, I received an e-mail update on current research and treatment being performed at the institution where I did my residency training. One of the interesting research areas was in the discipline of pediatric fertility preservation. Pediatric patients who undergo cancer treatments often take medications which cause destruction of their testicles or ovaries, not uncommonly resulting in infertility problems when the patient reaches adulthood. Advances in cryopreservation techniques of reproductive tissues are offered as a solution to preserving one’s fertility after pediatric cancer treatment.

The cryopreservation technique in the pediatric population is not limited to cancer treatment. There have been advances in providing fertility to non-cancer medical conditions that previously caused infertility. Two such conditions are Klinefelter syndrome and Turner syndrome which affects sex chromosome anomalies male and female patients, frequently resulting in infertility problems in those patients. By cryopreserving these patient’s testicular or ovarian tissue when they are children, when the number of the reproductive cells are in larger number and/or have the best potential for future reproductive function, in vitro fertilization techniques using these preserved cells when these patients reach adulthood can improve fertility.

The same pediatric fertility preservation treatment is now being offered prior to the hormone medication used to assist pediatric transgender youth transition from their birth sex to the opposite gender. Hormone treatments are used to intentionally suppress the transitioning person’s natural sex hormone production. This causes body habitus transformation to the desired gender. Continuous hormone suppression severely reduces (and can eliminate) baseline anatomic testicular or ovarian function causing permanent infertility in the transitioning patient. There is additional concern that the infertility persists even if that hormone treatment is later discontinued. Limited data exists to make conclusive statements on this subject as studies on long-term physiologic effects of hormone treatment used to transition pediatric patients are lacking; this is true even in the adult population where the number of patients who have transitioned is much larger.

Bioethically, we have moved beyond the question of whether we should be doing hormone suppression to assist in gender transitioning in the pediatric population and begun to discuss whether that child’s fertility ought to be preserved following such hormone administration. A simple Google search for non-hormone treatment of gender dysphoria in the pediatric population shows mostly hormone-based treatments for the first pages of results. With more effort, non-hormone options can be found.

The Mayo Clinic update that I received describes the transgender fertility preservation treatment along with a constellation of other pediatric medical conditions whose treatments potentially cause infertility (i.e. the cancer chemotherapy treatment causing infertility described earlier) as if all of these programs should be considered medically (and ethically) equivalent.

Are they?

If they are not, shouldn’t we be debating the medical and ethical pros and cons of pediatric transgender hormone administration more thoroughly before we consider how (and why) to preserve the very fertility of the pediatric patients we are altering by intentional hormone suppression?

A contemporary reprise of theories of justice

This blog’s being sponsored by an evangelical Christian university means, among other things, that at least some contributors, notably the current writer, tend to adopt a set of basic Christian assumptions (monotheism, tenets of historic Christianity, biblicism) in approaching matters of bioethics, including justice.  In that light, a recent summary of a Christian framework for justice, by the Presbyterian pastor Timothy Keller, is worth a careful read.  It is a concise and erudite summary of the different secular approaches to justice in pluralistic American society, contrasting them with a Christian approach.  (It does not attempt to address frameworks specifically grounded in other religious traditions.)

Drawing on the teachings of the Bible, especially the example of Old Testament Israel as embodying universal, enduring principles of justice intended by God, Keller characterizes biblical justice as encompassing concern for community that entails a moral imperative to generosity; equity in treatment of all human beings; corporate responsibility, meaning that sometimes, people bear responsibility for sins of others; but also individual responsibility, meaning “I am finally responsible for my sins, but not all my outcomes”; and an imperative to advocate for poor and marginalized people.  Of these, the contours of corporate vs individual responsibility will certainly spark debate among Christians, but living out these principals is, Keller argues, the responsibility of the Church in a secular world.

The big contrast is with atheistic, secular approaches to justice, which must and do fail because they neglect, avoid, or despise appreciation for human teleology—what are people for, what is their purpose?  Keller invokes Alastair MacIntyre’s Whose Justice?  Which Rationality? and, with MacIntyre, takes the position that “behind every understanding of justice is a set of philosophical beliefs about (a) human nature and purpose (b) morality, and (c) practical rationality—how we know things and justify true beliefs.”  Disagreement about these, particularly about human nature and purpose, leaves the prospect for secular agreement about justice well-nigh hopeless.  The rationality of the Enlightenment failed in this regard, and the popular current secular default that morality springs from common sense begs the question, assuming a common moral intuition that need not and does not pertain.

The current American secular landscape is dominated by four theories, which lie, progressively, on a spectrum of sorts, from individualist to collectivist, in order:

  • libertarianism, the position that justice is the maximization of individual freedom, which fails to appreciate the importance of community and the depths to which sin distorts human affairs, and which is too grounded in individual self-interest;
  • modern liberalism, which focuses on fairness, most recently following John Rawls’s A Theory of Justice, and emphasizes rights or entitlements, often to be guaranteed by the state.  It fails for reasons that have been well-rehearsed many times elsewhere: an enthronement of individual autonomy, a lack of a standard for adjudicating conflicting rights-claims, and an unwarranted faith in reason (notably in cost-benefit analyses), attempting to exclude religious values, but, in America at least, assuming Judaeo-Christian principals and values to support fairness judgments;
  • utilitarianism—justice is what produces the greatest good for the greatest number—which, for all its usefulness in individual judgments, fails as an overarching approach for many well-known reasons, including incommensurability of goods, potential to embrace mistreatment of minorities, insufficient criteria for what is “good” in the first place, and over-reliance on the language of “harm” to ground judgments;
  • postmodernism, the notion that “a just society subverts the power of dominant groups in favor of the oppressed.”  This may be the loudest current voice, and it draws the lion’s share of Keller’s attention.  This approach, Marxist in its foundations, starts from the presupposition that human affairs are the product of impersonal social or historical forces—the old “scientific theory of history.”  Keller provides an excellent, quick digest and explanation of what the current radicals, articulating Critical Theory (or Critical Race Theory when applied to racial relations), are talking about when they invoke “dominant discourses,” “intersectionality,” and “checking one’s privilege.”

Let us be clear—Critical Theory is rubbish, and Keller hits it hard.  Among its defects: deep incoherence—if everyone is blinded by their circumstances, so are the Critical Theorists; it reduces humans to automatons and fails to account for universal sin, moral agency, and the union of soul and body (I suppose if you deny that people have souls, and think they are just bodies, you just might be a  Marxist materialist); it denies human sinfulness and common humanity and makes forgiveness and reconciliation impossible; it invites extreme self-righteousness on the part of its adherents; and it sets the stage for oppression under the disguise of opposing oppression.  (Memo to the young: we just spent a century battling the various demons of totalitarianism, and you get to decide what you think of the second coming of Mao.  Study well.  Read attentively.  Choose carefully.)

Read the whole thing.

Abortion, Res judicata, Stare decisis and the “Rightness of Things”

Oddly, I enjoy reading Supreme Court decisions, particularly the dissents, even though I am not a lawyer. I gain similar enjoyment watching a good game of chess even though I am not a great chess player. Nerd that I am, I think I become smarter for the effort in both cases. I beg the reader’s indulgence on the legal background before getting to the ethical or theological portion of this blog entry but, after all, the case regards abortion, which usually demands a legal “walk in the weeds”.

Three weeks ago, the New York Times reported on a recent Supreme Court decision (June Medical Services, LLC et al v. Russo) that struck down a Louisiana law that attempted to place restrictions upon physicians who perform abortions by requiring them to have admitting privileges at nearby hospitals in case there were complications. In overturning the law, Judge Breyer, writing for the 5-4 majority opinion, made the case that requiring physicians to have said admitting privileges would reduce the number of physicians performing abortions in Louisiana, creating a burden on access to abortion. He was able to cite precedent with an almost identical Texas law that was struck down by the Court in 2016 (Whole Woman’s Health v. Hellerstedt)

There are many legal and ethical rabbit holes to explore in both cases. For the sake of brevity, I have picked one. Chief Justice Roberts was the fifth and deciding vote for the majority in the present case. What makes this interesting is that he joined the dissent in the earlier Texas decision, a decision he admits that he remains convinced was decided incorrectly, but voted recently with the majority to use the precedent of that prior case to strike down the Louisiana law. He wrote a separate concurring opinion to explain himself. In it, he begins:

“I joined the dissent in Whole Woman’s Health and continue to believe that the case was wrongly decided. The question today however is not whether Whole Woman’s Health was right or wrong, but whether to adhere to it in deciding the present case.”

My translation of this is: “Our first decision was terrible but instead of fixing our error, we should make a second terrible decision based upon the first – that way, at least we are consistent.”

And, legally, consistent they are.

Roberts’ problem with the Supreme Court’s Texas decision rested not with the specific medical or ethical questions as to whether physicians performing abortions should have admitting privileges at local hospitals or whether such requirement truly placed a limiting burden on women seeking abortion but rather the legal technicality of whether or not those questions had been previously and properly adjudicated. Res judicata (claim preclusion) prevents cases from being (potentially repeatedly) re-adjudicated between the same parties. Roberts joined Alito’s dissent, arguing the Texas case was an example of res judicata and should never have been heard. In Alito’s words: “The Court favor[ed the] petitioners with a victory that they did not have the audacity to seek”

With the Texas decision now law, Robert’s recent decision was to give precedent to that previous decision. Stare decisis (“to stand by things decided”) allows us to rely that courts will not change laws erratically. Robert’s sixteen page separate concurring opinion decided the Court’s 5-4 recent decision and was his attempt to justify giving precedent to a previous case he still believes was wrongly decided. Justices Thomas, Alito, Gorsuch and Kavanaugh each wrote dissents effectively having none of his argument.

All this brings me to the bioethics portion of this blog entry regarding this case. If Supreme Court decisions are not concerned with determining right and wrong (per Roberts), then what are they concerned with? Decisions having to do with abortion literally have lives hanging in the judicial balance. Justice Thomas, writing in his dissent in Whole Woman’s Health said:

“Our law is now so riddled with special exceptions for special rights that our decisions deliver neither predictability nor the promise of a judiciary bound by the rule of law.”

He went even further in his dissent in this present case, stating that the Court was unbound by the Constitution itself, when the Court concluded…

“…that Louisiana’s law is unconstitutional under our precedents. But those decisions created the right to abortion out of whole cloth, without a shred of support from the Constitution’s text. Our abortion precedents are grievously wrong and should be overruled.”

Justice Thomas is indirectly talking about the legitimacy of the Court. Theologian Richard John Neuhaus discussed the problems of legitimacy that courts will face when the Law deviates from what he called the “Rightness of Things”. In a speech he delivered at the centennial celebration of the School of Law at Valparaiso University in the late 1970s, he concluded (as do I):

“[W]ith regard to law, there is nothing in store but a continuing and deepening crisis of legitimacy if courts persist in systematically ruling out of order the moral traditions in which western law has developed and which bears, for the overwhelming majority of the American people, this society’s sense of right and wrong. There is in store a continuing and deepening crisis unless a transcendent moral purpose is reasserted by which the state can be brought under critical judgment, unless it is made clear once again that the state is not the source but the servant of the law.

“With apologies to Spinoza, transcendence abhors a vacuum. Today there is such a vacuum in the public space of American law and politics. Unless it is democratically filled by the living moral traditions of the American people, it will surely be filled, as has so tragically happened elsewhere, by the pretensions of the modern state. As the crisis of legitimacy deepens it will lead — not next year, maybe not in twenty, but all too soon —to totalitarianism or to insurrection or to both.”

A new cautionary tale for heritable genome editing

A fundamental concern about applying gene editing to human embryos is how to limit the risk of errors, or “off-target” effects.  One makes an edit to change a bad gene’s defect, and presumably prevent the disease the defective gene would cause.  But the current methods to do that, although apparently highly selective, might still make other, unwanted changes as well—with possible deleterious, even disastrous, consequences.

Heretofore, the attention to these “off-target” effects has largely been directed to changes in genes that are separated from the target gene.  However, a recent news item in Nature describes three recent experiments with human embryos in the laboratory, in which large defects were induced in the chromosomes bearing the target gene—that is, right next door.  The difference is a bit like the difference between damage by shrapnel (distant effect) and blowing a 6-foot hole instead of a pinhole (near effect).  The latter is now the new concern.  Apparently, and, for one who does not live the scientific details daily, amazingly, prior analytic techniques were missing the possibility of these big, close-in errors.  “CRISPR gene editing in human embryos wreaks chromosomal mayhem,” the headline reads.  Geez Louise…

The technical details are still to be worked out, but one possibility is that, after the targeted gene is cut by the editing mechanism, the way that repair of the genes is done by the human embryo creates the possibility of introducing errors by copying or shuffling of a big chunk of the gene.  These processes are not fully understood in human embryos, and may be different from what pertains in mouse or other animal embryos, or in single human cells such as egg cells or newly-fertilized eggs.

The big technical message is that a lot is poorly understood and will take a ton of work to sort out before one can be confident that a pregnancy carrying a gene-edited to-be-born human will birth a healthy baby, in the immediate outcome, never mind consequences later in life.  It further suggests that no amount of animal work may lay the matter to rest.  From that it’s hard to avoid the conclusion that many embryos will need to be created, altered, and destroyed for research purposes if heritable human genome editing is to proceed with some assurance of safety.  How long would those embryos have to be kept alive to test?  Quite possibly longer than the few days currently possible and accepted by the scientific community.

Absent that, trying to birth gene-edited children would mean, as this blog said some time ago, that “the babies are the experiment.” 

And, even if one does not grant moral status to the human embryo from the point of conception, one is compelled to seek an accounting of the compelling unmet medical need that supports a careful benefit-risk analysis.  Risks to human subjects—embryos, fetuses, eventually-born babies, women donating eggs, perhaps even women carrying partial pregnancies (to allow study of results from a later point in utero?)—seem substantial, overall costs of the effort raise questions of spending the money better elsewhere in the overall health care of society, and alternative approaches to the diseases in question must all be considered.

Geez Louise.

One other point: the Nature article cites preprints posted, prior to peer review of the science, on the website bioRxiv.  Operated by the outstanding Cold Spring Harbor Laboratory, the website offers authors the chance “to make their findings immediately available to the scientific community and receive feedback on draft manuscripts before they are submitted to journals.”  Open access and public feed back are good, but the general press often picks up these preprints, whose quality may not have been fully vetted, and runs with headlines—kind of like I am doing here, following Nature.  So we must watch this space to be sure that the research is being accurately described and interpreted.  For the moment, the topic of this post can be taken as another example of “something to watch out for.”

The Problem with Retractions

It is not uncommon, at least in my small town, for our local newspaper to publish, usually on its front page, the news of a malpractice case, complete with the initial accusations of incompetence directed against the physician in question and description of the horrible medical outcome suffered by the patient. The physician’s reputation is at least called into question, if not ruined, by accusations that appear at the time to be accurate reporting of the factual events. In most of these cases, often after one or two years of lengthy court proceedings, the physician is found to be completely innocent of any wrong doing. The newspaper, if they publish a follow-up at all, place a short update article buried in an obscure section in the middle of the paper. That article rarely has the excitement and prominence of the initial article and the physician’s reputation remains tarnished or at least clouded despite the absence of any wrong doing or error on his or her part.

Similarities can be seen with retractions in prominent medical journals, with obviously more national or international impact. Take the recent publications in both the New England Journal of Medicine (NEJM) and the Lancet of reportedly large population studies showing both the lack of efficacy and potential life-threatening side-effects of hydroxychloroquine in treating COVID-19. Both of these studies were reported by all of the national news networks in the US, further fueling the ongoing oddly hyper-political situation that has plagued the COVID-19 pandemic.

This past week, both the NEJM and the Lancet posted retractions of the COVID-19 hydroxychloroquine studies. In similar fashion to the malpractice articles in my local newspaper, the retractions, at least initially, did not receive the secondary reporting enjoyed by the original articles. To their credit, the Lancet stamped “RETRACTED” over the link to the original article and provided an explanation of their retraction. The NEJM only placed a small thin red banner with small text “This article has been retracted” above the article at the original link, which I overlooked when I first viewed the original link.

Lack of fanfare is not the only problem with the retracted medical studies. As reported recently in Science, the data in the flawed Lancet article has affected other ongoing reputable studies:

“But the Lancet paper, despite its retraction, will make it more difficult to continue current trials, [says Nicholas White, who runs one of the largest pre-exposure prophylaxis trials of hydroxychorquine for COVID-19]. Published on 22 May, the [now retracted Lancet] study claimed, supposedly based on data from 96,000 patients around the world, that hydroxychloroquine and chloroquine, whether given alone or in combination with another drug, caused a steep increase in deaths. That led many regulatory agencies to ask scientists to halt their trials and make sure they were not harming their patients. Recovery and Solidarity [other ongoing studies] were temporarily halted but resumed after a safety committee took a look at the data… Many other studies are still on pause.”

The point in today’s blog entry is not to determine whether hydroxychloroquine should be used to treat COVID-19 or to solve the politization of the COVID-19 pandemic. Rather, like the previous blog entry on “Trust and the Pandemic”, it is to point out that retracted studies in reputable medical journals, published for whatever reason, deserve substantially more attention when they are retracted than the follow-up given to small town malpractice headlines. While discovering the truth is important in both cases, failure to correct the latter only affects the reputation of an honest small town physician; failure to correct the former may affect the health and welfare of us all.

Racial justice and being created in the image of God

I have a friend who teaches public health. We share a common faith and a common commitment to living out that faith. However, we have different priorities. In medicine he focuses on the overall health of populations, while I tend to focus more on the needs of individual people and the relationship between the patient and a physician. His career has involved researching the health needs of particular populations, many times in large cities. My career has involved caring for individuals, mostly in small rural communities. Much of his research has involved the health needs of the African-American community. My medical practice has involved people in small rural Midwestern communities where African-Americans make up a very small percentage of the population.

Both of us believe that all human beings have been created in the image of God and deserve our respect. When we talk about ethical issues I tend to remind him that our understanding that all human beings have been created in the image of God means that we need to stand up for the value of human embryos and fetuses who are unable to stand up for themselves and for those with disabilities and those who are dying who may be treated as having less value than other human beings. He reminds me that we need to stand up for those in the African-American community and other minorities who are made in the image of God but suffer many injustices in our society.

Since I retired from practicing medicine my primary way of standing up for the value of every human being is through teaching. I try to help my students understand what it means that human beings have been created in the image of God and how that impacts the moral issues that we face in bioethics. My friend also teaches that to his students, but also expresses his faith and values by living among and worshiping with his African-American neighbors who have become his friends as well as those that he advocates for. He has learned to incorporate what he believes into how he lives. That is what we need in our society to move toward racial justice and reconciliation. The understanding that every human being is created in the image of God needs to become how we live.

Essential Services

Until the pandemic, no one spent much time wondering about whether something was an “essential service”. This designation has granted necessary special exceptions to community mobility access restrictions created by government imposed “shelter-in-place“ orders instituted to slow the spread of the virus. Throughout the pandemic, determining what was and still is considered essential has been an interesting debate not without its bioethical issues .

Merriam-Webster Dictionary says that the adjective essential “implies belonging to the very nature of a thing and therefore being incapable of removal without destroying the thing itself or its character.” With respect to the COVID-19 pandemic, an essential service is one that provides for or protects the life of any person, as life is certainly one thing that everyone seems to agree pertains to the nature of a human being. Therefore, anyone whose job it is to provide for or protect the life of another is providing an essential service. Easily included in that group are those at the front lines of disease management such as doctors, nurses, and first responder EMTs. The list also requires jobs that provide distribution or protection of our daily needs such as grocers (“milk and bread”), pharmacies, utility workers, various government services, firefighters, police, transportation services and nursing home providers. The list then quickly expands to suppliers of those jobs like farmers, medical equipment manufacturers, gas stations, and, well, the list goes on.

In Denver, the list of essential services promulgated by the mayor initially did not contain liquor stores and recreational marijuana shops (though that list did include medical marijuana dispensaries). Within hours of the release of the initial essential services list, after a strong public outcry, those businesses were reclassified as essential. Apparently, a large number of Denver residents believed that services provided by liquor stores and recreational marijuana shops were essential to their lives.

More recently, various religious groups are arguing with their respective governors that their religious services are also essential and therefore churches deserve to be opened sooner rather than later. The variability between the various states as to how each relaxes its own public access restrictions has likely contributed to these disagreements leading to several lawsuits. The Supreme Court just ruled against a California church in a case balancing religious liberty and public health. While public health concerns were indeed cited as the main issue, also at issue was the classification/determination of how essential was the service in question (i.e into what tier was the church service placed compared with other non-religious, non-essential services). In other words, how essential was the non-essential service?

Answers to the questions about the essence of a human being provide the basis for our bioethics. One’s worldview affects those answers. The open debate as to whether human essence transcends death should at least give us pause to reconsider the ranking in our list of essential services.

Justice & George Floyd

When I blogged last month, I thought surely that May would be an improvement over April. I was wrong. Now, with 100k deaths from COVID-19, and after several days of protests across the country in response to the death of George Floyd, I can’t possibly imagine what the summer will be like.

I watched two different documentaries over the past week – one on the life of writer Mark Twain and one on the life of President Ulysses S Grant. Even though they were two distinct individuals, their attitudes toward the horrific treatment of African Americans in the 19th century seemed remarkably similar, at least compared to the surrounding culture. It was especially disheartening to see how quickly the Reconstruction of post-Civil War America faded back into institutionalized racism. It is even more disheartening to see how race remains an issue in so many areas of contemporary life.

I have blogged on this site before on the racial disparities in health care. COVID-19 has exposed these disparities even further. It no longer surprises me when a family of color rejects talk from medical personnel about end of life care for a loved one as nothing more than a suspicious attempt to be rid of an under-resourced patient. (For more insight into this topic, please see the powerful op-ed by Dr Jessica Zitter in The New York Times last year.)

I am a middle-aged white male, born and educated in the United States.

I have never experienced systemic injustice.

I am not an expert on race relations.

However, it seems to me that many people of faith from my generation are committing the same grievous sin that previous generations have committed: we stand quietly by while watching the power structures of this country – both political and economic – systemically eviscerate the most basic of rights, all the while proclaiming that we believe that humans have been created in the image of God. (Dr John Kilner’s book, Dignity and Destiny: Humanity in the image of God [Eerdmans, 2015] carefully explains both the Bible’s teaching on the image of God, as well as the horrific things that happen when it is ignored.)

Justice is one of the foundational principles of bioethics. It is also one of the foundational principles of both the Hebrew Bible and the New Testament. Justice for George Floyd will not be reached simply by trying those responsible for his death. It will be reached when all humans are treated with dignity and respect.  Until that day, let us faithfully work towards that end.  (For a passionate and theological treatment of this issue, please listen to Rev Dr Charlie Date’s sermon from May 31 [sermon begins at minute 43:17].)

Trust and the Pandemic

One of the necessary requirements of a doctor-patient relationship is the establishment of trust in that relationship. A vulnerable patient presents to a physician who theoretically has the skill and knowledge necessary to help resolve the patient’s problem. Ultimately, the patient has to trust the information and treatment recommendations of his or her physician. Even in situations where the initial diagnosis turns out to be incorrect, it is the trust bond between the patient and physician that allows the two to proceed to other diagnostic and treatment options. If trust is lost, it is less likely the patient will have confidence in the information or treatment suggestions by that physician, often resulting in the patient looking elsewhere for treatment.

On a larger scale, the general population must trust the information and recommendations from their Public Health experts before they will be willing to follow treatment protocols, such as those presently in place for the COVID-19 pandemic. Loss of trust in those public health officials, for any reason, will not only lead the public to look for other sources of information and treatment options, it will also make them less likely to follow guidelines and restrictions currently in place, particularly if those guidelines and restrictions are viewed as inconvenient or harmful.

What does the public do when the usual trusted sources of information on the pandemic are shown to provide false information? Take for instance the recent CBS News story on long lines for testing at Cherry Health in Grand Rapids, MI. It turned out the long car lines awaiting virus testing at this particular testing facility were artificially exaggerated, with both the news network and the health system denying responsibility for the falsehood. Purposefully falsifying the data being shown to the public ostensibly being used to determine healthcare policy related to the pandemic does nothing to foster trust by the general population in either the health system or the news media.

What does the public do when two publicly acknowledged experts on the current pandemic claim the data that the CDC has provided them (and the public) are not only inaccurate but the two experts disagree as to whether the actual data represents an overestimation or underestimation of the problem? This link from the Philadelphia Inquirer quotes Dr Deborah Birx as saying “[t[here is nothing from the CDC that I can trust” in expressing her concern that the number of COVID-19 deaths reported by the CDC are inflated. The same article reports Dr Anthony Fauci expressing concern that the same CDC death toll represents an underestimation. It is no wonder that increasing friction is growing in multiple regions of the US as people struggle with the continued personal safety concerns regarding the virus and the growing economic disruption caused by our personal and public responses to the pandemic. Jerry Risser provided a thoughtful blog entry of the bioethical issues of this public health vs economics struggle (absent this present blog entry’s concern of data reliability)

A recent May 14th podcast from the New England Journal of Medicine (NEJM) provided some optimism in an interesting behind the scenes overview of how a respected medical journal like the NEJM determines how to provide reliable information on the current Pandemic. It is approximately 19 minutes of audio and is well worth review. While the NEJM is not perfect, they transparently discuss how they go about providing reliable, trustworthy medical information to the medical doctors on the front lines treating medical problems in general, and this pandemic in particular. They openly discuss several problems that NEJM has with the sheer magnitude of current data juxtaposed with the goal of getting information out to the public in a timely manner (8:15), the question of actual content selected for publication (complications vs clinical trials – 11:00), issues of best evidence (randomized trials vs how to treat the patient in front of the doctor right now- 12:10) and determining strategies to assist in opening up the economy (14:40). One gets the sense after listening to the podcast that smart people are truly trying to get the best data to the front-line people in public health in order to provide the best care possible and that is reassuring.

I suspect (trust?) that many other medical journals, public health authorities, federal, state and local government officials are working to do the same. One of my patients reminded me that even if that is not the case, Proverbs 3:5-6 is reassuring.