Gender & Pain

By Neil Skjoldal

Last week, The Washington Post  published a summary of a recent article in the Journal of Pediatric Psychology entitled “Gender Bias in Pediatric Pain Assessment.”

The participants of the study were shown a video with a child described as a girl or boy enduring pain.  The authors  “then asked adults to rate how much pain the child experienced and displayed, how typical the child was in these respects, and how much they agreed with explicit gender stereotypes concerning pain response in boys versus girls.”  The study found that “the ‘boy’ was rated as experiencing more pain than the ‘girl’ despite identical clinical circumstances and identical pain behavior across conditions.”

Isaac Stanley-Becker, the author of The Post’s article, noted that the authors of this study were surprised that “the downgrading of female pain was driven by female participants, who were more likely than men to say that the pain of the subject was less severe when told she was a girl.”  Stanley-Becker further notes that these results are similar to an earlier study with female nursing and psychology students as participants, suggesting that there is “crossover to the health-care profession.”

It might be difficult for some to imagine anyone purposefully reacting to children’s pain in this way. However, in treating patients in a manner which honors their dignity as humans, it is good to be aware of any possible biases that may exist.  It appears that future research will continue to examine these matters.

Self-Awareness, Personhood and Death

By Mark McQuain

Many philosophers argue that attaining the threshold of self-awareness is more valuable in determining a human’s right-to-life than simply being a living member of the human race. They require a human being attain self-awareness (reaching so-called full “personhood”) before granting unrestricted right-to-life for that particular human being. Lacking observable self-awareness relegates one to non-personhood status, and, though fully human, potentially restricted right-to-life status. The philosophic argument seems to be that only self-aware things suffer harm, or at least, do so to a more meaningfully significant degree than non-self-aware things.

Consider the following thought experiment. I finally designed a computer with sufficient complexity, memory, external sensors and computational power (or whatever) that, at some point subsequent to turning the power on, it becomes self-aware. The memory is volatile, meaning that the memory cannot hold its contents without power. The self-awareness, and any memory of that self-awareness, exists only so long as the power remains on. If subsequently powered off and then powered on again, the computer has no prior memory of being self-aware (because the memory is volatile and is completely erased and unrecoverable with loss of power) so becomes newly self-aware, with new external sensory input and new memory history. The longer the power remains on during any such power cycle, the more memory or history of its current self-awareness the computer accumulates. The computer’s hardware is bulletproof and is essentially unaffected by applying or disconnecting the power.

In this thought experiment, do the acts of turning the computer’s power on, allowing the computer to become self-aware, and then turning the power off harm anything?

By stipulation of the thought experiment, the computer’s hardware is unaffected by these events so no harm has occurred to the physical computer. Also, by stipulation, subsequently turning the computer’s power on again results in the computer becoming newly self-aware, with absolutely no memory of its previous period of self-awareness. The prior self-awareness is neither presently aware nor even in existence – it existed only during the prior power cycle. Perhaps as the designer, I may be harmed if I miss interacting with the computer as it was during its first self-awareness. The same perhaps goes for any other similar self-aware computer that had constant power during the experiment and witnessed the power cycling of the first computer.

But, what about the first computer? Was that computer harmed when I turned the power off? If so, what, exactly, was harmed? Following power-off, the computer has no self-awareness to be self-aware of any harm. The self-awareness no longer exists and that same self-awareness cannot exist in the future. Non-existent things cannot be harmed. Looking for some measure of group harm by assessing any harm experienced by other self-aware computers witnessing the event appears to be a problem of infinite regress (“It’s turtles all the way down”), as their self-awareness of the first computer’s self-awareness is also transient and becomes instantly non-existent when they power off. We will ignore the designer for the purpose of this experiment.

Assume now that the initial computer is a human brain. Some consider the physical brain a single-power-cycle, self-aware computer. For most humans, at some point after conception, we become self-aware, though philosophers disagree and cannot define the exact threshold for self-awareness. We can lose that self-awareness to physical brain injury or disease. Most believe the self-awareness certainly ceases with physical death, that is, it is volatile like the self-aware computer in my thought experiment, since, after death, there is no longer a functioning physical brain to sustain that self-awareness.

But if the thought experiment holds, requiring human beings the threshold of self-awareness before granting so-called personhood privileges such as unrestricted right-to-life is a meaningless threshold with regard to harm if that self-awareness is volatile and therefore not sustained in some manner after death. For self-awareness to be the determinant of harm in a living being, it must be non-volitile, meaning it sustains beyond death. However, if the self-awareness is sustained after death, then it is sustained in a non-physical manner (since the physical brain is obviously dead by definition of death). If self-awareness exists non-physically, might it also exist more fully than we can appreciate in a premature, a diseased, or an injured human brain prior to death?

Cyborg Society

By Mark McQuain

A cybernetic organism, or cyborg, is an organism that is part human and part machine. My favorite TV show in the mid 1970’s was “Six Million Dollar Man”, the story of an injured test pilot who lost both of his legs, his right arm and his left eye. His doctors made him “better than he was” by replacing his injured limbs and eye with artificial parts that actually enhanced his functional ability. Technology in the 1970’s was completely inadequate to accomplish those tasks and even now still lags far behind that TV show.

Perhaps the closest that any single person has come to becoming a cyborg is Steven Mann, an electrical engineering professor at the University of Toronto who, beginning in the 1980’s, literally began attaching various computers and cameras to his body and wearing them regularly to the point where, he argued, the equipment became part of him and he felt somewhat “unplugged” if he wasn’t wearing his equipment. The early equipment was so bulky, that in retrospect, he looked frankly ridiculous. As computers advanced, it became more difficult to recognize the equipment. The following photo shows that progression.

Steven Mann

Now most of the rest of us do not imagine that we are anything like Professor Mann. But I think we are more like him than we realize. Consider this – how many of you have a sense of disconnected-ness if you can’t find your smartphone? I would argue that most of us feel “unplugged” when we are without our phones. That certainly seems to be the case with anyone younger than 30. Your calendar, to-do lists, contact information, credit cards, airline or movie tickets are all stored on your phone. In that sense, part of your identity is in your phone. My wife and I joke that our children would not regularly communicate with us absent the ability to text.

Issues of faulty child-rearing aside, my point is not just our dependence on technology, and not just the nearness and intimacy of that technology. We have become dependent upon other artificial tools and parts such as walkers, hearing aides, prosthetics, pacemakers and insulin pumps, which are not just intimate but, in some cases, actually vital. But none of those machines affects our thinking or changes how we interact with one another.

Consider two new exercise systems popular this Christmas – Peloton and the Mirror (Disclaimer – I am not encouraging another Christmas gift). Both use smartphone technology to augment the exercise experience, allowing an individual to access what appears to be unlimited options in coaches, resources and locations. Notice the ads. They seem to elegantly emphasize both virtual community and individual physical isolation. And, while this technology is not cybernetically attached to us (yet), it, like the smartphone technology upon which it is based, appears to be detaching us from one another.

From a bioethics standpoint, I wonder whether, in augmenting our reality via our cyborg progression, we aren’t also becoming isolated from that reality as we become more dependent on the very technology we use to connect with one another.

Will a cyborg society make us more or less connected within that society?

#HappyNewYear

“The Babies are the Experiment”

By Jon Holmlund

 

The Thursday, Dec 13 edition of the Wall Street Journal carries this headline:  “Doubts Arise Over Gene-Editing Claim.”  The work behind the recent report that the world’s first two gene-edited babies had been born has been publicly discussed, but the details have not yet been published for full scientific review.  Apparently scientists in the gene-editing field are reviewing the public presentation and finding it lacking:

  • Some, but not all, of the cells in the children may have been edited. One would expect changes in all of the cells, and this should be necessary for the overall stated medical goal (protection from HIV infection) to have a chance of having been met.

The edited babies may have variants of the edited gene that have not been fully studied and could have unforeseen health consequences.

The technique used to confirm the gene changes may not be sensitive enough to detect whether other, unintended and potentially undesirable gene changes had been made.

And perhaps most notably, the studies done in mice to demonstrate the feasibility of the technique, before editing the embryos that grew into the full-term babies, involve a different change in the target gene in mice than the change sought in the children. In other words, the animal studies appear not to be representative of the human situation.

This is a common problem for development of new treatments for cancer and other diseases.  Tests are initially done in animals—usually mice—to determine whether the putative new treatment appears to be working.  The animal models used never entirely reflect the human disease.  Some come closer than others.  But the way of handling that uncertainty is to define and limit the risks to people who subsequently have the new treatment tested on them in clinical trials.

In the case of the gene-edited babies, there’s really no way to limit the potential risks, at least not yet, if ever.  Ultimately, one has to strike out and make changes that could backfire for the recipient humans, or be propagated into their descendants with unpredictable effects. 

Accordingly, without good animal models, and appropriately extensive testing in them, then, as professor Sean Ryder of the University of Massachusetts Medical School is quoted as saying, “the babies are the experiment.”  Ultimately, heritable gene editing may just require a leap of biomedical faith.

We should just say, “no, we shall not.”

Sprinting Down the Road on “The Children We Want”

By Mark McQuain

Almost exactly one year ago, this blog asked rhetorically whether your polygenic risk score was a good thing. Jon Holmlund raised this issue again last week, mentioning a company called Genomic Prediction. This company’s claim about the merits of their technology deserves close ethical scrutiny and is my reason for mentioning them yet again.

Genomic Prediction is increasingly calling for IVF clinics to use their version of expanded pre-implantation genetic diagnosis (EPGD), that is using big data analysis to select which embryo to implant – literally choosing the embryo you want based not upon the presence of single point genetic mutations known to be harmful but polygenic sequences (multiple genes, and even multiple upon multiple genes) statistically related to increased risk for complex diseases like heart disease and diabetes. Jon discussed the ethics of selecting “the children we want”, hinting that selecting for eye color or sex was “a step” further down the road.

Genomic Prediction is sprinting down that road.

Just last month, Genomic Prediction entered into discussion with some IVF clinics in the U.S. to screen embryos for “mental disability”. Per the firm’s co-founder Stephen Hsu:

“[EPGD] isn’t accurate enough to predict IQ for each embryo, but it can indicate which ones are genetic outliers, giving prospective parents the option of avoiding embryos with a high chance of an IQ 25 points below average”

This claim is entirely different from a claim that this particular embryo has this particular single point mutation that will cause this particular disease. Rather, the present claim of EPGD is better stated like this: When we saw this same polygenic pattern in some large number of prior embryos, a majority of them had an IQ 25 points below normal. Some questions naturally follow: Did any have above average IQs (and how far above average)? How big is the majority (75%, 85% or 97%)? How many embryos were studied to come up with this statistic?

Gamblers like Las Vegas odds makers are beginning to use big data analysis to better predict the outcome of sports contests. The result is that the Las Vegas odds makers can tell us that when number one ranked University of Alabama plays unranked Citadel in 1000 football games, Alabama will win 999 times. That also means that Citadel will win one of those 1000 games, and, prior to the start of the game, you never know which of those 1000 games you are watching. Last weekend, at halftime, Alabama and Citadel were tied 10-10. At that point, it looked like Citadel was going to win that one game out of 1000 and defy the odds makers.

And that is the point. Many have already decided that it is good to terminate the life of an embryo if he or she has a point mutation for a serious disease. Is it just as good to terminate the life of an embryo if he or she has the mere risk of some non-disease trait we find undesirable like the wrong eye color, sex or intelligence? Do we really have sufficient data to make this decision? How much risk is too much or too little? How do we know if the decision is a good one? Will the decision get us the “Children We Want”? Is it really our decision to make?

It is necessary we answer questions like these if we wish to take on the responsibility to decide who lives and who dies, a decision that we previously relegated, depending on your worldview, to God or Nature.

Abortion by mail, part 2

By Steve Phillips

Last week I wrote about a European organization that has begun providing the medicines used for medical abortions by mail to women seeking abortions in the US following an online consultation. This violates the current restrictions that the FDA has on the prescribing of mifepristone, the primary medicine used for medical abortion. The restrictions exist due to safety concerns with the use of the drug. Those who think that those restrictions should be ended cite FDA statistics that show that serious harm to women who take the drug are quite rare. I concluded that the data indicate that it is hard to support the restrictions based on the risk of harm to a woman who chooses to use mifepristone.

I mentioned that there is another, somewhat perverse, risk that is usually not discussed which enters into the decision about whether the prescribing of should be limited to a certified prescriber dispensing the medicine in a clinical setting. That is the risk to the embryo/fetus. Those who support the use of mifepristone cite an effectiveness rate of 95-97%. That means that over 95% of the time the use of mifepristone in early pregnancy causes the death of the embryo/fetus and along with the use of misoprostol the pregnancy is ended with a medically induced abortion. In the 3 to 5% of cases in which this does not occur, some result in the death of the embryo/fetus, but the products of conception are retained within the uterus and may present some risk to the mother. As noted above, the observed risk to the mother turns out to be quite low. Sometimes when the process of medical abortion fails the embryo/fetus may survive. Mifepristone is an anti-progesterone. We know that medicines which alter the hormonal environment of an embryo can cause congenital anomalies. Therefore, there is a risk that if an embryo does not die and a subsequent surgical abortion is not done an infant may be born who suffers from congenital anomalies due to exposure to the medicines which were intended to cause a medical abortion. To prevent this, it is recommended that women who take the medicines for medical abortion who do not abort within the usual period of time have a surgical abortion. That would be the primary reason to support the FDA’s requirement that these medicines only be dispensed in a clinical setting by a certified prescriber. The role of the certified prescriber is to make sure that no embryo who is exposed to mifepristone survives to be born with the possible congenital anomalies.

Thus, we have a situation in which our society, as represented by the FDA, has decided that it is permissible to give a pregnant woman a medicine that will kill the embryo/fetus living inside her, but only if the medicine is dispensed in such a way that it can be assured that the embryo/fetus will be killed and not survive with an abnormality caused by the medicine. I said this was perverse. It is what we get when we have a society that puts a higher value on avoiding suffering than the value placed on human life.

Wir wussten nicht

By Mark McQuain

It has been said that “the only thing necessary for the triumph of evil is that good men do nothing.” Implied in this statement is that, first and foremost, the good men and women must be aware of the evil before they could be held morally obligated to act against that evil. There are subsequent issues associated with that obligation, such as does one even have the ability to act and, if so, how much personal harm or risk must one endure before being morally absolved of the responsibility to act. Regardless, knowledge of the evil is a requirement before moral culpability to act against that evil can be expected or assigned.

Therefore, a claim of “we did not know” would certainly absolve people of any moral responsibility from failing to act. But only if that denial is true. Challenging the validity of such a denial is reasonable because the denial is the easiest way to escape moral culpability. Consider the following two examples where claims of “not knowing” were possibly used to avoid moral responsibility.

When the Dachau concentration camp was liberated by the U.S. Seventh Army at the end of World War II, it was reported that the local German townspeople denied that they knew what was going on at the camp, claiming “Wir wussten nicht” – “We did not know”. General Walton Walker started the practice of bringing local townspeople to view such camps by ordering the Mayor of the town of Ohrdruf and his wife to visit the Ohrdruf labor camp. After the visit, it was reported the Mayor and his wife returned home and killed themselves.

Did they really not know?

Recently, the movie “Gosnell: The Trial of America’s Biggest Serial Killer” was released with minimal coverage by Hollywood or mass media. Reportedly, the producers had to resort to crowdfunding to initially get the project off the ground. Kermit Gosnell was a physician in Philadelphia who operated the Women’s Medical Society Clinic where he performed late term abortions. He and his clinic had multiple complaints and legal actions related to unsafe office practices as well as several procedure-related deaths prior to eventually being raided on unrelated drug dispensing charges. What the investigating officials found upon raiding the facility would fairly be described as a “House of Horror” for the unsanitary conditions, use of untrained staff, expired medications and multiple fetal remains randomly strewn around the clinic. Dr. Gosnell was convicted of first degree murder in the deaths of three infants, involuntary manslaughter on one female patient and 21 felony counts of performing illegal late-term abortions. During the trial, state and city regulators were repeatedly called out for their failure to act sooner, given the high volume of prior allegations and complaints.

Did they really not know?

Wir wissen nicht. (We do not know.) And, perhaps, we will never know.

Bioethics & “Three Identical Strangers”

By Neil Skjoldal

I recently had the opportunity to watch the 2018 documentary Three Identical Strangers, which tells the story of triplets Bobby Shafran, Eddy Galland, and David Kellman.  They were separated shortly after birth in the 1960s and adopted by three different families through the Louise Wise adoption agency in New York City.  The way they happen to find out about each other in 1980 is fascinating.  It created a media sensation at the time, including an appearance on The Phil Donahue Show.

The documentary starts by sharing their thrill of discovery, which included the many similarities that the brothers have, even though they spent the first 19 years of life apart.  However, it eventually moves to some of the larger and darker questions that lingered for each of the adoptive families—the biggest of which was, “Why weren’t we told that there were siblings?”  And as you might suspect, the agency representatives did not provide many helpful answers.  The parents’ feelings of anger and bewilderment resonated with me as an adoptive parent.

Eventually the brothers came to find out that they were part of a “twins study” conducted by noted psychologist, Peter Neubauer.   The study involved the brothers being interviewed and filmed individually every year through the first few years of their lives, with them not knowing that their brothers even existed.  Their parents were told it was a study of adopted children, not a study of twins.

The documentary leaves little doubt where it stands on the ethics of this matter.  From some of those interviewed, it appears that the purpose of the study was to address the classic “nature vs. nurture” question.  However, the harm done to these brothers (and the others who were unknowingly involved in the study), making them feel like ‘lab rats,’ undermines any positive value that the study may have had.  That Neubauer’s research remains sealed at Yale until 2066 adds fuel to the fire that something unethical was done.

In a blog post on www.psychologytoday.com, Dr. Leon Hoffmann asks whether it is reasonable to expect researchers of previous generations to follow our contemporary standards.  He asserts that both the original researchers and the producers of the documentary are guilty of self-deception.  This is a point worth considering as we look back; however, this case is from the 1960s and those impacted are still very much alive.

It is difficult for me to disagree with the assessment of reviewer Neta Alexander of www.haaretz.com:  “’Three Identical Strangers’ is thus a faithful representation of the spirit of the times. It’s about the way in which the authorities and those with power – headed by a charismatic and respected psychologist – abuse their powers in the name of science.”  Three Identical Strangers stands as a timely reminder that there should be safeguards and limits to research.

Abortion by mail

By Steve Phillips

A recent article on the CNN website reports on a European organization called Aid Access which has recently made the medicines used for medical abortion available to women in the US by mail. The organization utilizes telemedicine in the form of online consultations to prescribe the abortion drugs from a pharmacy in India to be mailed to the woman desiring an abortion in the US. It is clear that this violates FDA regulations. To ensure the safe use of mifepristone the FDA currently requires that the drug, which has no medical indication other than induction of abortion, is only available to be dispensed in clinics, medical offices and hospitals, by or under the supervision of a certified prescriber. At issue is whether those restrictions should be lifted to allow more open prescribing of mifepristone.

The appropriate reason for the FDA to have additional restrictions on certain drugs is safety. Those who advocate lifting the restrictions on mifepristone argue that the safety of this drug has been established and cite FDA statistics that the risk of death from using the drug to induce medical abortion is only one in 155,000. This makes its use much safer than either surgical abortion or continuing a pregnancy to term. Those who oppose lifting the restrictions counter with concerns that the unsupervised use of the drug may also lead to failure to diagnose ectopic pregnancy and can result in situations that require surgical intervention, which may have increased risk in an unsupervised patient.

While there are risks to the use of mifepristone, it is hard to make the case that the risk of harm to the mother is high enough to warrant the additional restrictions that currently are required for this drug. That makes it hard to justify limiting access due to true concern about the risk to the woman whom uses it. This is not the case for another regulation regarding abortion. Laws that require abortion clinics to meet the same standards as outpatient surgery centers have a clear justification. Surgical abortion has similar risks to other outpatient surgeries, so it is reasonable to require the same safety measures for an abortion clinic and an outpatient surgery center.

There is one risk related to the use of mifepristone, which is not usually discussed, which does support the additional restrictions on its distribution, but in a somewhat perverse way. That will be the focus of my next post.

Where do I Store the Name of your Dog?

Following a long office day of wrestling with my current nemesis, our office electronic medical record (EMR), I was pleased to read a lovely article by Dr. Taimur Safder in the current NEJM entitled “The Name of the Dog”. I’ll not summarize it as the link is free and the article is short and makes the point of today’s blog wonderfully.

I realize the EMR is not actually alive and, lacking agency, is unable to act as my archenemy and cause my downfall, or that of my patients. Further, I have a degree in electrical engineering so the technology of the EMR is not the issue either. I will grant that current and future data mining of the EMR may benefit untold numbers of patients. I will also concede that EMRs will (eventually) be bolstered with AI tools that will improve diagnostic accuracy and reduce or eliminate costly unnecessary testing.

My concern is that the EMR causes me to focus so much on the data collection that I spend less time getting to know my data source (my patient) as more than the sum total of discrete data points. There really isn’t any good place in the EMR to put the name of my patient’s dog. If I am going to treat my patient as more than a something, perhaps as a someone, then more than just reductionistic data acquisition and processing will have to take place.

With that in mind, please take a moment to view one of my favorite paintings by Sir Luke Fildes at the Tate Gallery called “The Doctor”. The painting depicts a country doctor sitting at the bedside of a young patient, with the child’s parents in the background. One can imagine the concern of the child’s father and almost feel the anguished prayers of the child’s mother, but both are interestingly relegated to background positions in the painting. The focus of the painting is the focus of the lamp in the painting – the country doctor and his patient.

Medicine in the 19th Century was limited in terms of meaningful data collection and limited further by actual effective treatments. In other words, the EMR of the 19th Century could have been completed in mere minutes and the diagnosis and treatment, such as it was, rendered in a few minutes more.

Given those limitations, perhaps not surprisingly, one gets the sense that the depicted outcome was far from certain and also that the country doctor had been in the home a while – there was at least time for tea at the table. What on earth was he still doing there? Maybe in absence of a definitive diagnosis and immediate cure, what the doctor could provide was his time, his empathy and his focused, loving concern. One gets the sense he would likely remain with his patient and the family as long as he was needed to offer what help and hope he could.

That seems like a reasonable example of how one imago Dei might care for another.

Would that I could consistently convey that level of steadfastness, that empathy and that loving concern to all of my patients without frantically looking for that special place in my EMR to store the name of your dog.