Human Fetal Tissue — Considerations

The NIH Human Fetal Tissue Research Ethics Advisory Board met on 31 July 2020 to “make recommendations regarding the ethics of research involving human fetal tissue (HFT) proposed in NIH grant and cooperative agreement applications and R&D contract proposals, as set forth in the NIH Guide Notice NOT-OD-19-128.” The meeting agenda included a brief time set aside for public comment. Additionally, written comment could be submitted within a prescribed time frame prior to the meeting.

It is my hope that the advisory board seriously considered the following comment penned by this writer, on behalf of the educational non-profit Tennessee Center for Bioethics & Culture:

All human beings belong to one another.  Whatever our genetic constitution, our ethnicity, our color, our femaleness or maleness, our geographic location, or stage of life:  we are part of the human family.   That membership is not bounded by a cradle-to-grave timeline.  As human mammals, our beginnings begin before the exodus from our mothers’ wombs.  From the fertilization of the egg by the sperm, a new human being arises (and sometimes, multiples).  How we treat that human zygote, embryo, fetus, newborn, baby, toddler, preschooler, child, adolescent, adult, and elder, has effects on that human being – as well as on ourselves.  How we treat other human beings, especially vulnerable ones, tells future generations and civilizations about what kind of people we are.

In 1993, President Bill Clinton signed into law the NIH Revitalization Act.  That Act charged the NIH to conduct or support research that reduced the number of animals used in research, and that produced less pain and distress in those animals (https://grants.nih.gov/grants/olaw/pl103-43.pdf). Those are laudable goals.  That same 1993 NIH Revitalization Act authorized the use of human fetuses for research, including fetuses from induced abortion (www.hhs.gov/ohrp/regulations-and-policy/guidance/public-law-103-43/index.html).  The same law that sought to reduce pain and suffering in animals opened the door wider to using nascent human beings as research subjects.  Utilizing tissue that becomes available by virtue of spontaneous abortion (miscarriage) does not actively convert living beings into research subjects/objects.  It is not a planned procedure that can be scheduled around tissue procurement firms.  That is not the case, however, with the use of fetal tissue from induced abortion.  The willful taking of tiny, live human beings from their mothers’ wombs, followed by the use of them in whole or in part, as research subjects/objects, sets up a human market.  Abortionists and abortion facilities are paid to render a living being into products or parts.  Then they are paid again to yield up these beings or parts to research.  Money is exchanged for parts or labor, even if said payment is labeled “handling charges.” This is a market, and it is a market in human flesh:  a stain upon our culture and our civilization.

Property rights, payments, and urgent public health needs

Greed is a common concern—a risk, from one perspective, an indictment, from another—raised regarding medical care and the people who profit from providing certain aspects of it.  Nurses don’t get rich.  Doctors, in rich nations, often do.  Public hospitals generally don’t; private, for-profit ones do, and manage their work to make sure they do. 

There’s a much richer ethical tradition than can be recounted here that doctors should not be about profit.  Indeed, key tenets underwriting the understanding of medicine as a learned profession are that the physician enters a covenantal, not transactional, relationship with the patient, and that the physician is duty-bound to efface his self-interest when the patient’s care so requires.  One can argue about the precise boundaries of that, but the principles, even with today’s corporate medicine, still seem generally accepted.   The ancient Christian church gave us the “holy unmercenaries,” saints (generally physicians) who lived in extreme poverty and did not accept payment. 

But the most relevant collective culprit in out time seems to be the Western pharmaceutical industry, which is, to be sure, lucrative, providing high-tech medicines at often high prices.  The principle that the inventor has a right to profit from his invention has led to the standard practice of issuing and protecting patents, which prevent cheap alternatives from becoming available for a number of years.  The idea is that the inventor has those years to make a reasonable profit before the right to praceice the invention becomes more generally available—unless the inventor grants a license to the patent, which of course comes at a price.

The most common remedy for proposed is to limit the price that can be charged.  This is an issue of policy and justice, but not so much one of ethics as of public policy.  The old search for the “just price”—what should something cost—foundered, because the most workable answer turned out to be the market price, assuming that seller and buyer are on equal footing.

A related proposal is that drug companies ought to be non-profit.  The challenges here are that the modern drug industry employs many people, most of whom cannot be considered under the same terms as physicians—they have not taken a covenantal oath to society.  They’re doing jobs, making a living.  Also, being not-for-profit doesn’t eliminate the need for large amounts of money to develop and make drugs.  Countering this is the charge that the prices could or should be lower, that the real costs are not so high to justify pricing, and so on.  These are complex matters that will not be solved on principle but will be the source of ongoing policy disputes that will take on the form of a negotiation, of sorts.

But if one grants that the drug maker is due a reasonable, or even a handsome, profit, then one can still ask, if the medical need is sufficiently acute, when does just, merciful care of suffering people–some rich, many not so much, some from rich countries, many not so much so—demand that the product not be considered a proprietary invention, but a public good?

This question is surfacing as the prospect of one or move COVID-19 vaccines becomes more likely.  The general press has recently reported on various prospective pricing plans from the manufacturers.  Some intend prices that are a bit higher than others, some are discussing charging poor countries less than rich countries, and so on.

A more provocative proposal is to eliminate the property protection from COVID drugs or vaccines.  Recent arguments have held that in no circumstance should patents be enforced, so that inventions would be immediately open on a broad basis, and that one nation should not be able to prefer a product made by a native country be available first to its own citizens; or that, perhaps more simply, that all COVID-related inventions should be placed in an open-access repository for widespread availability.  The fundamental argument is that all such inventions are, and should be, global public goods.

Counter arguments are that people who create new drugs, vaccines, or other products to meet critical needs should be reasonably rewarded, and that not allowing this creates a disincentive to them to make the attempt in the first place.  A government that supports such work has a reason for claiming some consideration when it comes to pricing, and also arguably has a greater moral responsibility to its own citizens than to those of other nations.  Part of that government support arguably includes a duty to provide incentive to the inventors and producers in the first place.

Expect to hear more about this in the general press in the months ahead.

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.”

Surreal Times

Happy Independence Day to all our readers! 

Vacation time for our family means spending some time at a cottage in a northern state, and often includes early July, which is the case this year.  It occasions a simpler life, punctuated with small town activities.  One of those activities has been the 4th of July parade.  Among the parade’s attractions (ostensibly for the children) is the candy thrown out from the emergency vehicles and floats driven by.  A few years ago, a local plumber added a new feature to the parade.  The central feature of their float was a port-a-potty, and the owner and employees threw out to the crowd not candy, but rolls of bathroom tissue.  Now in 2020, there was no small-town parade.  Instead, a flotilla of boats, led by the sheriff’s boat and siren, paraded in a clockwise direction around the lake.  The beautiful vintage wooden boats led the parade, and for the first time, modern boats were allowed to join. It was a bittersweet time:  a time of celebration yet a time of recognizing that much has been lost in our culture in recent months.  It was not mourning simply the fact that no one is dispensing free toilet paper to the gathered masses.

The toll of the novel coronavirus in our midst continues to mount.  Whether by illness or by death of one known to us, many in our nation have been affected.  New York has been particularly hard hit, with some seeds of that tragedy being planted only a few years ago.  I penned an article highlighting the timeline of the COVID-19 pandemic disaster in New York, especially regarding the elderly and it is available here.

In such a surreal time as we find ourselves, it seems fitting that I would receive the following prayer in an email today.  It was sent by an Anglican friend of mine, who has dual citizenship in the U.K. and the U.S.:

Collect for Independence Day

Lord God Almighty, in whose Name
the founders of this country won liberty
for themselves and for us,
and lit the torch of freedom for nations then unborn:
Grant that we and all the people of this land
may have grace to maintain our
liberties in righteousness and peace;
through Jesus Christ our Lord,
who lives and reigns with you and the Holy Spirit,
one God, for ever and ever. Amen.

Pandemic Priorities in the Face of Uncertainty

Last week, this space on this blog addressed concerns about overconfidence in judgments about the COVID pandemic, and intimated that some humility is in order, especially on the part of the experts doing the advising and opining.

Now turn the perspective around—humility is in order on the part of us non-experts, receiving and reacting to the experts’ advice.

At this writing, while precision is ever-elusive, it is clear that the number of infections is increasing at an accelerating rate in several states and localities across the United States.  How many of these infected people will require hospitalization, or will die, remains to be seen, but concerns are raised that hospital systems in some areas will be stressed—perhaps not to the degree that New York City or northern Italy saw earlier this year, we certainly hope not—but stressed nonetheless.

And there is a rush to apportion blame, especially to “the other side” of our current, apparently intractable political split.  But, again, humility is in order.

First, hindsight is 20-20, as the old saw goes, and it’s easy to find misjudgments among various public officials.  Some may prove to have been honest, some less so, but scapegoat-hunting seems of little use, except to try to win the next election.

Second, the public health officials have not been purposefully lying to us.  They have generally made their best efforts.  We might rightly take them to task for letting certain value judgments bleed into their scientific assessments.  But there remains much that we just don’t know. 

Third, wearing masks is not principally an issue of rights.  It’s a matter of prudence and neighborliness.  We should wear them in public.

Fourth, we can’t say exactly why the infection rate is increased.  More contact between people, sure.  But which ones?  That remains to be determined.  My local newspaper says today that in my county (San Diego County, CA), family parties of 10-20 people gathered in households appear to be the source of outbreaks.  And maybe gambling casinos. 

Fifth, what is really “essential?”  People need to be able to work and earn a living.  Perhaps we can grant them that, do everything we can to protect them and the rest of us in the process, and voluntarily limit exposures that really aren’t critical.  Some calls may be contentious, I know—should we limit hip replacements while folks can get their nails done, or buy marijuana of dubious medical need?  In a free society we don’t have a Platonic philosopher-king to walk us through that, but we might be willing to offer some tradeoffs and continue to try to help those who suffer loss because of it.

Sixth, we don’t know what outdoor group gatherings have or have not promoted spread.

Seventh, while there is merit from a civics standpoint in asserting that churches ought to be able to meet, there is also merit from a Christian citizens’ standpoint in bearing delays in meeting patiently, and laboring, as the hymn says, to “preach Christ, as love knows how, with witness true and virtuous life” (emphasis mine).

The above are only the opinions of your correspondent.  And the larger priority questions—of health care disparities, priorities of high-tech vs low-tech ethical issues, of different areas of medical care that are being “rationed” from time to time these days—are for future posts here.

Uncertainty, Arrogance, and Mourning in the time of Pandemic

As I write this I have been fielding messages from a friend and interlocutor who, a knowledgeable health industry professional, seems quite confident that had President Trump been successfully impeached—or, better, never elected—the COVID-19 pandemic would not have been such a trouble for us. 

And there may well be something, more than a little something, to this.  Catalogued charges of missed opportunities and willful neglect are well known.  At the same time, in some quarters anyway, Trump’s adversaries have not escaped criticism.

Of the first 100,000 or so deaths from COVID, about 40% are said to have occurred in nursing homes and assisted-living facilities for elderly people.  Joy Riley discussed the situation in a fine post on June 6.  But how accurate is the count?  We don’t know. The government can’t quite get the data, or its rules block collection of the data, or something. 

All the counts are imprecise.  The self-declared uncertainty in the IHME estimates appears rather narrower now than it did in April—it should, with more data—but it still gets wide after a while.  One doesn’t hear much about that uncertainty, unless you consult a site like five thirty-eight.  Lack of certainty does not mean that the modelers are purposefully misleading us, but, although they are making their best estimates to help guide public decision-making, it does guarantee that their projections will be “wrong.”  (The National Weather Service forecasts thunderstorms for Omaha next Monday night, June 22.  I think they are more likely to be accurate.)

How much of a greater outbreak will there be this fall?  We don’t know.  We can and should be concerned, and prudent, and considerate of our neighbors, but we don’t know.

Right now we’re overrun by people of all political persuasions, not just at one “end of the spectrum,” who are quite certain they are right and the other guys and gals are knee-walking stumblebums of the apocalypse.  Add in a dash of ulterior motive or hastiness and you get a lot of folks who, as President Reagan said, “know so many things that aren’t so.”  And then you get high-profile retractions

The pandemic is a poor topic for a bioethics blog because so much of bioethical discourse is about logical argument rather than decisions under uncertainty, or judgments unencumbered by data, and because there is a temptation to get on rather a high horse about matters.  Your correspondent confesses he is all too familiar with the latter.

When the humble (we hope), uncertain, doing-their-best public health forecasters speak, it would help if they would take care to sort value judgments from judgment calls, if they would stay in their lane and point out where their expertise ends and their opinions begin, and if they would resist expanding their remit to make every social concern, as great as those may be, a “public health” issue, and therefore a matter of science, with the attendant risk of false precision and, indeed, category error.  As readers of this blog have recently been reminded, what is “essential,” or more important than something else, is not subject to measurement and experimental verification.

And the rest of us should give those forecasters some grace.

Gerald Seib of the Wall Street Journal recently wrote that there is no goodwill in America anymore.  Sixty percent of people in each major political party think the opposing party is “a serious threat” to the nation.  Forty percent of each party think that the opposing party is “evil.”  About 15 percent (give or take a little) of each party think that violence would be “somewhat justified” if the other side wins the next presidential election.

I once heard a story—no doubt apocryphal, I can’t find it, but it serves my purpose—that Abraham Lincoln, at a friend’s funeral, listened to several people speak then rose to eulogize his dead friend—and just cried and sat down without uttering a word.

Maybe there’s a lesson there.

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.

Nursing Homes and Rights in New York

During a pandemic, some rights may be set aside for a time. Is that what happened to nursing home residents in New York?

Residents of nursing homes (NH) in the state of New York have specific rights spelled out on the NY Department of Health website. Regarding “Clinical Care and Treatment,” thirteen rights are listed. The webpage listing these rights was last revised in June 2010.

Fast-forward to June 2020.  As of 3 June 2020, there have been 6,068 confirmed or presumed COVID-19+ patients die in NY nursing homes.  Undoubtedly more patients from nursing homes have died of COVID-19 during the pandemic, but New York only includes in their tallies the number of people who die in the nursing home.  If nursing home residents die elsewhere of COVID-19, they are not counted as nursing home deaths.  On 10 May, Governor Cuomo told reporters, “We’ve tried everything to keep it out of a nursing home, but it’s virtually impossible. . .” What happened? 

On 25 March, less than three weeks after Governor Cuomo had declared a State disaster emergency due to the coronavirus pandemic, another statement was issued from the New York administration.  This one was sent from the New York State Department of Health to nursing home administrators, directors of nursing, and hospital discharge planners.  It was an advisory regarding “Hospital Discharges and Admissions to Nursing Homes,” and stated in part

 . . . No resident shall be denied re-admission or admission to the NH solely based on a confirmed or suspected diagnosis of COVID-19. NHs are prohibited from requiring a hospitalized resident who is determined medically stable to be tested for COVID-19 prior to admission or readmission.

Visitors to nursing homes had been locked out as of 12 March.  Then persons who were “medically stable”—including COVID-19+patients—were readmitted or admitted for the first time to the nursing homes.  Nursing homes were not allowed to require a test for coronavirus prior to admission/readmission.

So much for the rights of newly admitted or readmitted NY nursing home residents to

  • adequate and appropriate medical care, including nursing, rehabilitation therapies, social work, dental and other professional services for which you have been assessed to show need;
  • be fully informed by a doctor in a language or a form that you can understand (using an interpreter when necessary) of your total health status, including but not limited to your medical condition including diagnosis, prognosis and treatment plan;
  • ask questions about your medical condition and have the questions answered;

What about the residents in whose midst COVID-19+ patients were admitted or readmitted?  What about their rights to

  • refuse to participate in experimental research;
  • be fully informed in advance about care and treatment and of any changes in that care or treatment that may affect your well-being;
  • participate in planning your care and treatment or changes in your care and treatment

Does re/admitting persons with a virulent infectious disease into a closed environment of vulnerable people  equate to experimental research?  These were certainly changes in their environments that could affect their well-being.  How could nursing home residents “participate” in their care or treatment under such circumstances?

What happened to these rights during the response to the pandemic? Did the State give these rights to the nursing home residents, and therefore, could the State take them away?  No one envies the weight of the burden of the pandemic on the citizens, the health care system, or the elected and appointed governing officials of New York.  Choices made, however, have consequences, and some people live with those consequences.  Others don’t.