The COVID-19 Crisis: Not Enough Technology to Go Around?

In a modern industrialized society like the U. S., we tend to take certain things for granted.  One of these things is that if someone needs emergency medical care, that care will always be available.  The COVID-19 pandemic is calling that assumption into question.

For a time in late spring, many hospitals in New York State were overwhelmed by COVID-19 patients who needed ventilators to keep from dying.  Even with ventilators, many died anyway, and it took weeks for the healthcare system there to recover to the extent that it could handle its normal emergency traffic along with the extraordinary COVID-19 patient load.  In Texas, where I'm writing this on July 12, we are currently being warned that if the COVID-19 infection rate continues to rise like it has in the last few weeks, we may be in a similar situation with maxed-out hospitals and the need to set up emergency wards in convention centers. 

Broadly speaking, a modern healthcare system is a technology in the same sense that a postal system is a technology.  It involves machinery, to be sure, but it also involves complex human relationships, states of training, and command structures that are just as essential as MRI machines and ventilators.  It takes a huge amount of resources in money, time, and investments of lifetimes of training and practice to develop the capabilities represented in a modern hospital.  So it's not surprising that when demands are placed on it that it wasn't designed for, you run into problems.  But the problems you run into aren't just failures of equipment.  It's things like what happened to Michael Hickson at St. David's South Austin Medical Center in Texas.

Until three years ago, Mr. Hickson was a reasonably healthy husband and father of five children.  In 2017, he had a heart attack while driving his wife to work, and suffered permanent brain damage from lack of oxygen before he received emergency treatment.  The injury left him a quadriplegic and in need of continuous medical care, which he was receiving at an Austin nursing and rehabilitation center when he tested positive for COVID-19 on May 15.  He ended up in St. David's ICU on June 3, and on June 5 the hospital informed Mrs. Hickson that he wasn't doing well. 

That day at the hospital, she had a conversation with an ICU doctor regarding her husband's care.  The situation was complicated by the fact that she had temporarily lost medical power of attorney to a court-appointed agency called Family Eldercare.  Someone recorded this conversation, and it makes for chilling listening and reading (the YouTube version is captioned).

When Mrs. Hickson asks why her husband isn't receiving a medication that can alleviate symptoms of COVID-19 and being considered for intubation, the doctor explains that her husband "doesn't meet certain criteria." 

The doctor explains that doing these things probably wouldn't change his quality of life and  wouldn't change the outcome.  When she asks him why the hospital decided these things, the doctor replies, " 'Cause as of right now, his quality of life . . . he doesn't have much of one." 

Mrs. Hickson asks who gets to make the decision whether another person's quality of life is not good.  The doctor says it's definitely not him, but the answer to the question about whether more treatment would improve his quality of life was no.

She asks, "Being able to live isn't improving the quality of life?"  He counters with the picture of Mr. Hickson being intubated with a bunch of lines and tubes and living that way for more than two weeks, but Mrs. Hickson gets him to admit that he knows of three people who went through that ordeal and survived.  She tells him that her 90-year-old uncle with cancer got COVID-19 and survived. 

His response? "Well, I'm going to go with the data, I don't go with stories, because stories don't help me, OK?"  Toward the end of the conversation, he says, ". . . we are going to do what we feel is best for him along with the state and this is what we decided." 

The next day, Mr. Hickson was moved to hospice care.  According to Mrs. Hickson, there they "withdrew food, fluid, and and any type of medical treatment" from him, and he died on June 11, despite his wife's attempts to gain medical power of attorney back from the court-appointed agency.

There are at least two sides to this story, and in recounting this tragedy I am not saying that the Hicksons were completely in the right in all regards, nor that the hospital, its doctors, or Family Eldercare was completely in the wrong.  But clearly, the hospital was under pressure to allocate its limited resources to those who would benefit from them the most.  And it fell to the unhappy ICU doctor to explain to Mrs. Hickson that her quadriplegic, brain-damaged (and maybe I shouldn't mention this, but he was also Afro-American) husband was going to be left behind in their efforts to help others who had what the hospital and the state determined were higher qualities of life.

It isn't often that conflicting philosophies clash in a way that gets crystallized in a conversation, but that happened when the doctor said, "I'm going to go with the data, I don't go with stories."  In going with the data, he declared his loyalty to the science of medicine and its supposed objective viewpoint that reduces society to statistics and optimized outcomes.  In refusing to go with stories, he rejected the world of subjectivity, in which each of us is the main character in our own mysterious story that comes from we know not where and ends—well, indications are that the Hicksons are Christians, so their conviction is that their stories end in the Beatific Vision of the face of God.

But Mrs. Hickson would have been willing to look into the face of her beloved husband for a little longer.  Unfortunately, the ICU doctor and the state had other ideas.  Mr. Hickson might have died even if he had received the best that St. David's could offer.  But the lesson to engineers in this sad tale is that the best designs at the lowest price mean nothing if the human systems designed to use medical technology fail those that they are intended to help. 

Sources:  I read about this incident at the website of National Review at https://www.nationalreview.com/news/quadriplegic-father-with-coronavirus-died-after-austin-hospital-opted-to-end-treatment/ and https://www.nationalreview.com/corner/national-council-on-disability-decries-hickson-death/.  The recorded conversation between Mrs. Hickson, the ICU doctor, and a friend of Mrs. Hickson's can be heard at https://www.youtube.com/watch?v=jq-_gtjnzZg&feature=youtu.be.

Has Human Gene Editor Been Edited Himself?

Dr. Jiankue He of the Southern University of Science and Technology in Shenzhen, China, claims to have used a gene-editing technology called CRISPR/Cas9 to edit the genes of twin girls in order to make the babies resistant to the AIDS virus carried by their father.  When news of his experiment leaked out, scientists and governments around the world attacked him for doing what is widely viewed as an unethical experiment.  After Dr. He tried to defend himself at a Human Genome Editing Summit in Hong Kong at the end of November, the president of Dr. He's university reportedly collected him and took him back to Shenzhen, and his whereabouts are presently unknown.  He is no longer answering his phone, his lab has been shut down, a company he founded has lost contact with him, and one report says he has been placed under house arrest. 

First, a little background.  It will be very little because biology and bioengineering is not my forte, to say the least.  CRISPR is an acronym for some DNA sequences that are found widely in cells, and these sequences are used with an enzyme in a technology called CRISPR/Cas9 to edit DNA.  So in the last fifteen years or so, we have gone from reading the human genome (the goal of the Human Genome Project, completed in 2003) to editing the genes of human beings—at least if Dr. He has done what he says he's done.

From a scientific point of view, his claims remain unsubstantiated, because he has not yet published anything about this particular experiment in a peer-reviewed journal.  He apparently intended to do so when news of it leaked out, and Dr. He decided to post information about it to forestall rumors.  What he posted did a lot more than that.

There's enough questionable ethical practices in this incident for several columns.  The most prominent one is whether Dr. He did wrong in deliberately manipulating the gene sequence of human embryos and then implanting them back in the mother to be born.  Nothing has been said about how many unsuccessful tries were made along these lines, but if this experiment was like others, the yield rate was probably very small. 

Besides that question, there is the problem of talking about controversial experiments prior to peer review.  We still don't have any verification as to whether Dr. He really did what he said, although he has a good track record in the field of previous genetics research in less controversial areas.  But given the nature of his situation, Dr. He probably did the least bad thing in releasing more information rather than just letting rumors run wild.

What is most interesting to me is the way the government of China has reacted to the firestorm of controversy.  Up to now, Dr. He has been treated like a golden boy, being allowed to study abroad at Rice and Stanford, receiving a coveted Thousand Talents Award to set up his own lab, and founding or being involved in six companies focused on commercializing aspects of his research.  Earlier this year he announced that he was taking a leave from his university position to concentrate on his commercial activities. 

But once news leaked of his alleged CRISPR/Cas9 experiment with the twins and criticisms began to mount, the weather changed fast.  China currently has no inconvenient encumbrances, such as the legal concept of due process, to delay rapid and decisive action on the part of its government.  So when someone high up in the power structure decided that Dr. He was no longer an asset, his fate was sealed.  It may be months or years before we find out exactly what has happened to him, but for now, his high-flying career appears to be at an end.  What the government gave, the government can take away, and apparently has.

There is an odd parallel here between what the Chinese government has done to Dr. He, and what Dr. He has reportedly done to the twins.  For years, he enjoyed the freedom to study at the best universities in the world, to follow his investigations into the secrets of the genome, and to speculate on commercial applications of his ideas.  But in a matter of weeks, it's been taken away, at least for the time being.

At least Dr. He had the opportunity to judge whether his experiment might land him in hot water.  He may have judged wrong, but he was free to refrain as well as to go ahead.  The twins—referred to in news reports only as Lulu and Nana—have had no choice whatsoever.  From the time they were born, they became participants for life in an experiment that was not of their choosing.  If what Dr. He claims to have done is true, they are the first human beings on Earth whose intrinsic genetic makeup came about not only through the volition of their parents, grandparents, and ancestors stretching back before the dawn of human history, but also through the deliberate mechanical technology of CRISPR/Cas9. 

Is this a tragedy?  A lot of people seem to think so.  Judging from the swiftness of the negative reactions heaped on Dr. He's head, most of them arose from what bioethicist Leon Kass calls the "yuck factor."  Some ideas and actions are just intuitively revolting to most people, and fiddling with a human embryo's genes fall into this category.  Given the magnitude of the opprobrium, the government of China saw a threat to their hoped-for reputation as a leader in rapidly advancing scientific fields such as biotechnology, and removed Dr. He from public (and maybe even private) view.  One researcher going a bit too far is disposable.  But China's long-term plans in this area are not known.

The more basic question raised by this research, and one that has not been addressed much so far in news reports on it, is whether human life is really distinct, set apart, or holy compared to other life.  If it is, then a whole array of things that are now legal and even praised in some circles, ranging from mix-and-match in-vitro fertilization to abortion, are highly questionable, to say the least.  If it isn't—if playing with human genes is no more harmful than what the Jesuit priest Gregor Mendel did to his bean plants to figure out the basics of genetics over a century ago—then I would ask, what's the big deal?  Once you've gotten over the shock of novelty, human gene editing will fade into the background and become just another way we mess with ourselves technologically.  I hope that never becomes the case, but unless we use this controversy to open up a wider inquiry into what the limits of biotechnology should be, I'm afraid we'll look back on Dr. He's case and wonder what all the fuss was about.

Sources:  The Australian Broadcasting Company posted a report about Dr. He's disappearance at https://www.abc.net.au/news/2018-12-07/chinese-scientist-who-edited-twins-genes-he-jiankui-missing/10588528.  I also referred to a report of theirs on the experiment itself at https://www.abc.net.au/news/2018-11-27/china-gene-edited-babies/10556676.