Vaccine Distribution and Racial Equity

Most Americans know that African-Americans have a significantly lower life expectancy than White Americans. Most of us don’t think through the implications of that disparity. For example, all working people pay into Social Security, but African-Americans are less likely to live long enough to collect it. In this op-ed, published today in the Allentown, PA Morning Call, my colleague Tom McAndrew and I explore the implications of that racial gap for allocation of the Covid-19 vaccine. We point out that, if we allocate vaccines primarily by age, African-Americans will be seriously underrepresented.

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The Plug

The Plug is a brief video created by Marije de Haas. De Haas and her collaborators call this “design fiction.” The context is European, where euthanasia is legal in some countries, but where advance directives for euthanasia in the case of dementia are rarely honored.

The idea is that the plug is kind of a reverse pacemaker. It is inserted into your body, where it self-activates to end your life when certain conditions obtain. The video doesn’t explain what those conditions might be, but we can imagine them from the stages of Alzheimer Disease. Assuming you would want the plug at all, would you set it to activate when you lost control of your bowels and bladder? When you could no longer live independently? No longer recognize family? Mostly bedbound and with little or no power of speech? Remember, you are making a decision now, as a competent person, for something to happen later when you are not competent. Are you willing to risk the possibility that when the conditions you set up obtain, you might be demented but quite happy? Are you willing to risk now that you might deprive yourself of some demented but pleasant life later? After all, you will be demented then, and you won’t remember you have the plug, or know how to deactivate it.

I found out about the video when Marije got in touch a few years ago, asking permission to use my language from a 2014 article to create a speech for her main character, “Sabrina.” In the end she used it virtually word for word. I was delighted to have my words put into the mouth of such an attractive and fashionable character!

Should Age be a Criterion for Triage during the Pandemic?

Yeah, I know I said in an earlier post that we spend way too much time obsessing about ventilator triage–something that has never happened in America so far–and not enough time obsessing about why our health care system is so broken. Nonetheless, with my friend Felicia Nimue Ackerman, a philosopher at Brown University, I made a brief video on the topic, for the Aging & Society conference. I kind of like my last point, which I have not seen anyone else make. It comes out of an experience my family suffered in 1985, when my thirteen-year-old cousin was killed in a plane crash. That taught me the difference between sadness and tragedy.

Coronavirus Contact Tracing

For three years during the 1960s, I worked for various organizations, all of us trying to end the War in Vietnam.  At one point, I was employed by the Fifth Avenue Peace Parade Committee, while my boyfriend worked for the Student Mobilization to End the War in Vietnam (affectionately known as “The Mobe”).  Both of these groups were coalitions of organizations that came from various perspectives, everything from Trotskyite to pacifist, but all with the common purpose of ending the war.  Or so we thought.

As time went on, we became increasingly frustrated with our inability to work collaboratively; it seemed like we spent more energy squabbling with each other than in fighting against the war.  The sense of guilt and failure dogged me for years.  Had we really been so immature that we let petty differences get in the way of our goal?  Did we really care more about who marched first in a parade, than about saving children from napalm?

It wasn’t until 1986, when the Socialist Workers Party won a tort case against the Dept of Justice and the FBI, that I fully understood how the FBI had used hundreds of informers and agents to not only spy on coalitions, but to actively seek to disrupt them.  They sent obscene letters to set one group against another, tried to foment violence at peaceful demonstrations, and posed as employees of antiwar groups.  From the agency that tried to drive Martin Luther King, Jr. to suicide, I suppose this is no surprise.  But even decades after it happened, I was shaken to discover that colleagues whom I had liked, whom I had eaten lunch with five days a week, were really agents whose purpose was to frustrate every goal for which I was working.  I hadn’t even known them by their real names.

Why am I thinking about that now?  A couple of weeks ago I watched an excellent Hastings Center webinar on digital contact tracing for Covid-19.  There are various ways to do this, but the best seems to be an app on our phones that records where we have been and with whom we have been in close proximity.  If someone reports getting sick with the virus, everyone who has been close to them can be traced and tested.  As Ed Felten explained, “Everyone’s phones keep records, and various companies keep records, of exactly where we’ve been, based on GPS and other location finders.  You could then take people’s location histories and match them against each other and if you see that two people have been in the same place at the same time, you would know there was a possible exposure.”

The presenters are really smart people, and it sounds pretentious and condescending to call them naive.  And yet their faith that we could prevent this information from being misused, was astounding to me. In order to place such an app on my phone, I would have to believe at least the following things: that the promised anonymity would be respected; that the government would not get hold of it; that it would not be used to trace contacts for other reasons, e.g., to discover an immigration lawyer’s clients.  (Do you remember when we discovered that Uber’s passenger app not only traced you to your destination, but continued to trace where you went after you exited the car?)

As the other discussant, Ryan Calo, noted, we would need important safeguards against mission creep, whereby the surveillance app did not de-activate just because the pandemic was over.  Perhaps the government discovers a new use for it; perhaps we kind of get used to it, the way we are used to the idea that our EZPass keeps a record of every toll booth we have gone through, and our grocery store loyalty card keeps a record of the foods we buy.  Calo noted that “clear, explicit rules are critical,” but what point are rules if the government clandestinely subverts them?

There are a lot of things I do to participate in the fight against Covid-19.  I wear a mask faithfully, have not gotten a haircut in months, teach via zoom, and haven’t hugged my own son.  I have volunteered for a vaccine trial.  But for me, this is a bridge too far.  I have noticed speculation that the “boomer” generation wouldn’t adopt this technology because we are less comfortable with tech.  Maybe we won’t adopt this technology because we have long memories.

Running to Tarshish

The New York Times corroborated something I have long thought to be true: no one who has suffered from the novel coronavirus in America has been denied a respirator due to scarcity.  That being said, why has so much energy and rhetoric been spent on the topic of ventilator triage?  Ventilator scarcity and the looming prospect of triage was a leitmotif of almost every Cuomo news conference in the early days.  The Hastings Center Forum, an edited blog on bioethics, had numerous essays on denying people scarce ventilators due to “ageism,” ‘ableism,” racism, and their DNR status.   All this talent and energy focused on something that never happened.  Why?

I think the answer has something to do with a bioethics syndrome my friend and fellow bioethicist Laurie Zoloth called “running to Tarshish”, from the Book of Jonah.  Jonah, we recall, was a biblical figure who was called on by God to go to Nineveh, and tell the people there to repent.  Jonah didn’t want to do that, because he knew that the people would indeed repent and God would spare them.  Jonah thought the Nineveh inhabitants were a bad lot and he had no interest in saving them.  Instead, Jonah turned in the other direction and booked passage on a ship headed for Tarshish.  We know what happened then: God causes a terrible storm, the sailors throw Jonah overboard, and he is swallowed by a giant fish.  Jonah repents, the fish disgorges him, and he takes on the original task.  He goes to Nineveh to warn them of God’s anger if they do not change their ways.  The people do repent and God has mercy on them.  Jonah, meanwhile, is sulking under the meager shade of a gourd vine, which God has caused to grow.  When God kills the vine, Jonah is furious, not to mention in imminent danger of sunstroke, so furious that he asks to die.  God says: “Thou hast had pity on the gourd, for which thou hast not laboured, neither madest it grow, which came up in a night, and perished in a night; and should not I have pity on Nineveh, that great city, wherein are more than sixscore thousand persons that cannot discern between their right hand and their left hand, and also much cattle?”  (I love God’s grasp of the practical–don’t forget to mention the cattle.)

Laurie’s point was that bioethicists “run to Tarshish” by focusing on sexy and speculative issues and turning from the difficult, systemic ones.  As I recall, she was talking about our propensity (herself included) to be fascinated by the pros and cons of advances in genetics, which at that point had helped very few people, while paying too little attention to access to health care, food deserts, poverty and the like, all of which we have the technical ability to fix now.

Obsessing about ventilators is an example of running to Tarshish.  It’s an easy problem to think about, the kind of thing one would put on an ethics exam.   There are 5 ventilators, and 6 people of various ages, occupations, and states of health: how do we choose?  Be sure to defend your choice.  It also suggests that the necessity for triage is a neutral fact, not itself a communal choice to spend less money on healthcare and more on the military.

So instead of running to Tarshish, maybe we should be thinking more about why we don’t have enough ventilators.   Or why such an outsize proportion of virus deaths occur among people of color.  Or the best way of getting universal access to healthcare.



No ventilator, not for me!


We are all obsessed with ventilators.  The Covid-19 pandemic has created an extraordinary focus on the availability of ventilators.  Ventilators seem to feature in every one of New York State Governor Cuomo’s daily briefings.  The Governor of California kindly shipped some ventilators to New York, but faced backlash among some of his own constituents, who fear a future shortage.   DIY engineers are trying to create ventilators and scarce ventilator parts with 3D printers.   Hospitals are trying to figure out how to use one ventilator for two or even four patients.

An especial concern seems to be ventilator rationing that appears to discriminate against older people.  Before we get too focused on this question, shouldn’t we ponder what older people would want, if they get sick enough with Covid-19 to need a ventilator?  As a 73-year-old bioethicist, I have told my son that I do not want to be put on a ventilator even if there are plenty to go around.  Why?

First, the likelihood of survival is poor.  People who get sick enough with the virus to need a ventilator are only twenty percent likely to survive, even with ventilator support.  Perhaps a salutary step toward common sense would be to stop calling ventilators “lifesaving,” as in most media accounts, and substitute “occasionally lifesaving,” or “twenty percent likely to be lifesaving,” instead.  Clunky language, I agree, but a lot more informative.   I assume that, even as a reasonably healthy older person, my chances of being in that twenty percent are not good.

Second, as Dr. Kathryn Dreger pointed out in a recent New York Times essay, even those who survive are likely to face months or years of recovery with significant disability.  “The amount of sedation needed for Covid 19 patients can cause profound complications, damaging muscles and nerves, making it hard for those who survive to walk, move or even think as well as they did before they became ill. Many spend most of their recovery time in a rehabilitation center, and older patients often never go home.”   Further, a quarter of patients who survive time in the ICU end up with post-traumatic stress disorder.  All in all, this is a future many older people would view with horror.

Third, although we have no direct evidence of this yet in the current pandemic, it seems extremely likely that going through the ventilator experience would render one at high risk for dementia.   For example, according to the Society for Critical Care Medicine, about eight percent of ICU patients who are mechanically ventilated experience delirium, a disturbance in consciousness characterized by sudden onset of impaired cognition.    Strategies to prevent delirium include more visits from family, twice-daily occupational therapy, and other interventions impossible to implement for Covid-19 patients.  We know that delirium accelerates cognitive decline in persons with Alzheimer’s Disease and substantially increases the risk for dementia in nondemented patients over sixty-five.  Long periods of heavy sedation, required for all intubated patients, are also an independent risk for dementia.

There will certainly be some older people who would opt for ventilation despite these concerns.  But I suspect that, if our rhetoric were closer to the reality, and if people were asked what they wanted, we would find ourselves with lots of spare respirators and no need to worry about triage.

Other Stuff: A child’s right to an education

Some NYC ultra-Orthodox yeshivas provide little or no secular education to their boys, who leave school illiterate in English and with third-grade math skills.  They have never heard of the American Revolution, written an essay, or entered a science fair.  They cannot pass the GED and are virtually unemployable outside of their community.  Some of them learn to “write” English for the first time while practicing their signature for their marriage licenses.  For the last few years I have been working with YAFFED (Young Americans for Fair Education) to try to force the city and state to do their job, investigate these schools, and make them adhere to state law, which mandates that all private schools deliver a “substantially equivalent” education to what is offered in public schools.

Anyone who follows my work knows that “the child’s right to an open future,” as articulated by philosopher Joel Feinberg, is an ongoing focus.  Feinberg developed the concept in response to the famous 1972 case of Wisconsin v. Yoder, involving Amish who wanted an exemption from the state’s mandatory schooling law.  I’ve applied the concept to reprogenetics, but I’ve never lost touch with the basic idea that every child has the right to an education.

Last week, YAFFED held a press conference to highlight the fact that we have been waiting four years for the state to release a promised report on these yeshivas.  (Two years ago, tired of waiting, we wrote and released our own:  Of course, an opposition group was there, composed of haredim with signs accusing us of antiSemitism and worse; we were amused to see that almost every sign was misspelled.

Here is what I said at the press conference:

People who want to keep yeshivas immune to government oversight often claim to be upholding their right to the free exercise of religion, as guaranteed in our Constitution.  This is completely wrong.  Insisting on the right of every child to an adequate secular education is the essence of free exercise.

People have been coming to America in search of religious freedom since before we were a country. Jews showed up in New Amsterdam in 1654, and despite the objections of Peter Stuyvesant, they remained and flourished.  As George Washington wrote to the Jews of Newport in 1790, “the Government of the United States gives to bigotry no sanction, to persecution no assistance.” Between 1880 and 1914, about two million Jews came from Eastern Europe, fleeing pogroms.  After World War II, the remnants of Hassidic communities found shelter here.

In America, Jews found freedom of religion beyond their wildest dreams, beyond anything available in Europe then or now.  Americans enjoy the freedom to express our religious beliefs in almost all the details of our lives.   But here’s the deal: religious freedom for all. Including children.

The Bill of Rights is a compact between individuals and their government.  The First Amendment guarantees “the free exercise of religion” not to families nor to groups, but to individual persons.   Those persons include kids

This does not mean, of course, that a five-year-old can decide whether to be Catholic, Jewish, Mormon, or Muslim.  But it does mean that adults must preserve for children now, the right to religious freedom when those children become adults.  The state must guarantee to a ten-year-old now, the right to choose later, when he becomes an adult, whether or not to remain in the Hasidic community.   These Hasidic boys, however, are coerced to remain within their religious communities when they grow up, because they enter adulthood functionally illiterate, unable to pass the GED, and virtually unemployable outside their community.

Free exercise is a two-sided coin. In America, the freedom to choose and to practice one’s religion is based on individual human rights.  As Jefferson wrote in the Declaration of Independence, “all men…are endowed by their Creator with certain inalienable rights, among these are Life, Liberty, and the pursuit of Happiness.” But the other side of that coin is the necessity of extending those same rights to our children.   Children may well choose to pursue life, liberty and happiness within their parents’ communities.  But the state must guarantee to children sufficient education to make their own choices. 






Avoiding Dementia, Causing Moral Distress

In “Avoiding Deep Dementia,” an essay in the September/October 2018 issue of the Hastings Center Report, legal scholar Norman Cantor explains why he has an advance directive that calls  for voluntary stopping of eating and drinking as a means of ending his life if he develops dementia and reaches a particular state of decline. Cantor’s essay and three accompanying commentaries bring up many important points. Let me address one of them, in Rebecca Dresser’s response.

Dresser makes much of the undeniable fact that many people with dementia do not suffer, that they experience pleasure and adjust well to their new circumstances.  What is the significance of that fact, for Dresser?

She cannot be arguing that Cantor’s fears for his future are unfounded, because Cantor is quite clear that he is not primarily concerned that he would suffer if he became demented.  Rather, he is concerned about a life he considers “demeaning,” and having others’ memories of him “soiled.”  Thus, Dresser’s point that many people with dementia enjoy their lives brings no solace to Cantor.

Rather, Dresser argues that demented people who are not suffering have interests in continuing their lives, interests that ought to be respected and that should outweigh the interests people have in precedent autonomy.  After all, the person who wrote the directive, who prized independence and autonomy, no longer exists, and her wishes should not be allowed to extinguish the life of the current person, who is enjoying her life. For reasons rehearsed by many people over the years that this debate has progressed, I am not persuaded.   Nancy Rhoden, for example, has argued that Dresser’s stance treats formally competent, now demented, people in the same way as people who were never competent.

However, Dresser’s position points to a different problem, one that is empirical rather than philosophical.  As long as the demented person is enjoying her diminished life, it will be psychologically and emotionally difficult, perhaps impossible, for most people to withhold food or even simple medical interventions. Even if they believe they ought to comply with the advance directive, the moral distress is simply too great. This is especially true for current caregivers who have no experience of the prior person who wrote the directive.

The problem of moral distress is especially salient because Cantor hopes to resort to VSED to have his life cut short should he fall into dementia, and should he not speedily be delivered by pneumonia or some other life-threatening condition. As Jacquelyn Slomka wrote in a 1995 article in Archives of Internal Medicine, providing someone with food keeps them connected to the social system, reaffirms them as persons. Making sure that people are fed feels to many of us like the most basic human interaction. Many people would agree that tube feeding is a medical intervention like any other, and can be withdrawn like any other. But hand feeding feels different. Many caregivers, family members or health professionals, would be willing to withhold even something as simple as an antibiotic for pneumonia, and would also agree to honor a refusal of artificial nutrition and hydration; however, withholding of actual food and water by hand creates too much moral distress. Even if Cantor were willing to be the cause of acute moral distress, I believe that his gamble would not pay off.  Once the “original” Cantor has been displaced by a pleasantly demented Cantor who is enjoying his chocolate ice cream, the likelihood that the advance directive will be followed is pretty slim.

I share Cantor’s values, and his abhorrence of ending his life in dementia. The result of this situation is that the pleasantly demented self potentially lurking in my future is my worst enemy—a counterfeit self who soaks up my resources, burdens my family, and besmirches my memory, and who stands in the way of my most precious goal: to end my life with dignity.   Rather than “mourning” my death, as Daniel Sulmasy suggests in his response to Cantor, my friends and family will heave a deep sigh of relief, knowing that my real self expired many years earlier. Because I do not share Cantor’s confidence that a directive will be followed, I believe that pre-emptive suicide is the only way to be sure that this future self does not come to inhabit my body and frustrate my goals.

In fact, one sadly rational reason for suicide, a reason often given, is that people do not trust that their wishes will be followed as their lives come to a close. Dresser, Sulmasy, and others ought to consider if, by refusing to respect people’s wishes, they may be extending some lives, but cutting others short.



Sign up to be a research subject

A special issue of IRB: Ethics & Human Research (March-April 2018) is all about “Listening to the Voices of Research Participants.”  The main argument for making participants into something more like true “partners,” is that experienced research subjects have a lot to teach researchers.  Rebecca Dresser points out that many developments in political science and philosophy emphasize the importance of personal experience as “a valuable source of knowledge.”  Experienced research subjects can help researchers and IRBs spot problems that can raise ethical issues, or interfere with enrolment and retention.  “Ethical and policy deliberations should include people who know what it is like to participate in research.”  Stephanie Solomon Cargill follows Dresser with a discussion of how to get from the “why” to the “how.”   Two more articles round out the special issue. None of them suggests one obvious piece of the puzzle: researchers themselves, and bioethicists who serve on IRBs and make research decisions, should raise our hands and sign up to be research subjects.


When I speak at bioethics conferences, I often ask my audience who has volunteered to be a research subject, and I am astonished at how few people respond.   Jumping through the looking glass is a fascinating experience.  I have been a volunteer for the REVEAL study, where I was told my APOE status and some approximation of my genetic risk for Alzheimer’s.  I recently ended a five year stint in the VITAL study, where I took some combination of vitamin supplements and placebos daily.  (I would not have believed how sick I got of doing that, nor how annoying those little round pills were when they rolled off the counter and dropped onto the floor.  Only the tremendous esprit de corps generated by the newsletters and thank you notes and little holiday gifts—thanks, guys, for the keychain flashlight—kept me going.)  I tried to volunteer for another Alzheimer’s study; I didn’t survive the initial screening, but I still learned a lot.   Some of that learning made its way into my writing, some of it has helped me enormously as I sit on various IRBs.


Granted, this doesn’t solve the problem by a long shot.  Few of us are likely to be of low income, or have an eighth grade education.  Nonetheless, we can learn a lot from being “participant observers.”  Look at the huge amount of wisdom that we have accrued from illness narratives of doctors who were forced to become patients.  Why shouldn’t we enjoy at least some modicum of that wisdom from having ethicists volunteer to be subjects?


I would also argue that bioethicists, at least those of us who have been relatively unburdened by illness, have an obligation to participate in research. Actually, I believe everyone has a prima facie obligation to participate in research, because we are the beneficiaries of that research.  But as bioethicists we are doubly beneficiaries: not only do we owe our good health to medical research, but many of us make a pretty good living writing about it.  Don’t we have a duty to give back?


Being Poor is a Full-time Job

A new article in The Hastings Center Report, by Nir Eyal, Paul Romain, and Christopher Robertson, asks whether it is ethical to ration healthcare by inconvenience and red tape?  In other words, given that all societies must ration health care in one way or another, is it ever ethical to push people away from an unpreferred healthcare option by making it more inconvenient?  For example, what if physicians had to go through a very long process to prescribe a nongeneric drug, or if ERs had really onerous check-in procedures for patients without medical emergencies? This came at an interesting time for me, because I was recently asked to provide informal support for a low-income woman I will call Millie, who was moving from her home in New York State to my community in Pennsylvania.  Despite my fairly extensive reading on what it means to be poor in America today, I was blown away by the sheer inconvenience of Millie’s daily existence (and awed by the way she navigated bureaucracies that would have reduced me to gibbering idiocy).

Millie is in her 50s, dependent on public assistance, and with a number of health problems (e.g., diabetes, hepatitis C). She had spent her last dollars to hire the truck to move her possessions to her new home; she had moved to live with distant relatives who had been persistent in inviting her, but turned out to be interested only in her disability paycheck.  The household was chaotic and unsafe, and everyone smoked.  Millie’s immediate problems were to find new Section 8 housing and a way to move her stuff; to get her many medical prescriptions transferred to her new state; to find new doctors and get her medical care back on track.  She had to do this with no car, no credit card, and no checking account.

In addition to the hours that Millie spent dealing with those problems, her daily life presented its own inconveniences. Living miles from a decent grocery store, she tended to shop at the local bodega, whose meager offerings were not ideal from the standpoint of her diabetes.   Without a car, or the money to call an Uber, shopping by public transport would have eaten up a big chunk of her day.  Picking up prescriptions presented parallel problems.

In short, what I learned from Millie was how time-consuming and inconvenient it is to be poor.  Being poor is virtually a full-time job.  Being poor with chronic illness is two full-time jobs.

This is especially concerning because of a theory, promulgated by Schilbach, Schofield and Mullainathan at the Wharton School of Business, that poor people are often so preoccupied with the challenges of daily living that they have less “bandwidth” with which to make good choices.   Of course, the authors of the Hastings Center article do not ignore this question.  They are concerned that any rationing process not be regressive, that is, that it not disadvantage those who are poor.  But they believe that rationing through inconvenience is less regressive than, e.g., rationing through cost-sharing.   “[All] people have twenty-four hours in a day, a limited attention span, and a body that can be in only one place at a time.”  The authors do acknowledge that rationing through inconvenience must be used thoughtfully, but some of their solutions seem merely to generate more onerous paperwork:  “In some instances, a hardship waiver would be feasible and appropriate.”  Can you imagine how long it would take to fill out the application for that waiver?  Rationing through money can more easily be made less regressive by exempting people who have already done the paperwork to be eligible for Medicaid, SSI, and so on, and already have the card to prove it.

Eyal, Romain and Robertson are not targeting only patients in their paper; they hypothesize “negative nudges” that operate on all players in the healthcare system.  But because poor people already get poor healthcare, and live in less healthy environments, and because their lives are already burdened by inconvenience, we need to be very sure not to increase that inequality.