The Importance of Bioethics

by Chris Audino

Every time I am about to stand in front of a fresh batch of students in my undergrad Bioethics class, I am moved to ask myself the question: what’s the point in Bioethics? The reason I ask this question is because it is an important question.

It is important because the asking encourages the essential exercise of me remembering “the why.” Why am I doing this? Why do we reflect on the moral permissibility of certain behaviors (culturally accepted or not)? Why do we allow certain things to happen and not others as individuals and a culture? Who should be allowed to decide what is right and what is wrong?

This “why” speaks to the very heart of bioethics – to the point of bioethics, which, I humbly submit, is to think about health and medical issues, and their moral permissibility, with the goal of supporting human flourishing and dignity. Bioethics is the exercise of asking these questions before it becomes a hindsight question. You know, when we ask: what else could I have done, it seemed like the only choice?

The further we drift from asking these questions the less it seems like there is a choice. Because, the day to day is where these decisions happen. The tech in the lab creating a family (am I playing God?). The nurse sitting by the bedside watching a man agonizing through his last breaths (he shouldn’t have to suffer through this, what can I do?). The engineer who is trying to solve this simple problem (I don’t think this could be used to hurt someone, could it?). The mother who is watching her 6-year-old slowly die of cancer (wouldn’t it be easier if I could help him die?). The expecting mom who has been abandoned by her boyfriend to go it alone (what choice do I have?). The biological boy who identifies as a female and is sorting through pronouns to find the right fit for the moment (why do I have to go through this?).

Bioethics is important because it asks the question before the moment. In the moment, the decision seems like it has already been made.

Human brain genes in monkeys

By Jon Holmlund

This week’s news is that a group of Chinese researchers have birthed and studied a small number of rhesus monkeys that were “transgenic” for a human gene associated with brain development.  In this work, monkey eggs (oocytes) were altered by adding the human form of a gene that is believed important to the development of the brain.  This gene is one of the relative few that is different between humans and primates (monkeys, as in the work described here, or apes, such as chimpanzees or gorillas).  That gene is abnormal in cases of human babies with small heads and brains, making it a good candidate for a gene that is critical to normal human brain development.

The gene was added to the monkeys’ egg cells using a viral delivery mechanism.  The monkey genes were not, in this case, “edited” to the human form using CRISPR/Cas9.  (Presumably, that experiment is coming.)  Using the altered eggs, 8 monkey embryos were then conceived and implanted in females.  Six of these survived to birth, and 5 of them lived long enough to do tests on their brains.  These monkeys’ brains looked, on imaging studies and under the microscope, more like human brains than normal monkey brains do, and these monkeys’ brains developed more slowly than normal, mimicking the human situation, in which brain development occurs largely in late pregnancy and then a lot more in infancy and childhood.  The five surviving monkeys also did better on some short-term memory tests than did “natural” monkeys given the same tests side-by-side.  How strong this finding is appears debatable; the number of monkeys tested was small, and your correspondent cannot say how useful the tests are.

The scientists also took sperm from these transgenic monkeys and conceived three other monkeys (again, using IVF, they apparently did not try to breed the animals), all of which were sacrificed before birth, and whose brains apparently showed some of the same features as their “parents'” brains.

Genetically modifying non-human primates is generally frowned upon in the West, largely on grounds of the animals’ welfare, but in China, it’s full-speed ahead.  The Chinese scientists apparently agree with Western scientists that the brains of apes (chimpanzees) should not be genetically altered because they are too much like us humans for comfort.  Monkeys are not so close, in the Darwinian schema.

The investigators in this case think they are learning important lessons about the genetics of human brain development in a model that is enough like humans to be informative.  They also think they are shedding light on human evolution (assuming that the evolutionary model is correct).  Those conclusions seem to be a reach.  The gene in question had already been identified as a candidate of interest, and its association with brain development arguably could be studied in other ways, within the ethical bounds of human subject research.  And it seems unlikely that a creature such as created in this work would ever have arisen from random mutation.  Rather, these transgenic monkeys seem to be an artifact of the investigators’ design, with uncertain relevance.

In any event—off to the races.  Anticipate more work to alter monkeys’, if not eventually apes’, brains genetically.  They might get something really interesting—and hard to know quite what to do with.

Another example of work that seems unethical on its face, done not because they should, but because they could.  The full paper can be found here.  A description for general readership is here. 

The Influence of Mary Warnock

D. Joy Riley, M.D., M.A.

Philosopher and public intellectual Helen Mary Warnock died on 20 March 2019, at age 94 years. (See here and here.)

Baroness Warnock’s imprint marks not only public policy in the United Kingdom, but also the public policies of much of the western world, particularly in the arenas of assisted reproductive technologies and embryo research. She famously chaired the Committee of Inquiry into Human Fertilisation and Embryology, 1982-84.

The Warnock Committee (as it came to be called) was formed to advise Parliament regarding, inter alia, in vitro fertilization (IVF) after the 1978 birth announcement of Louise Joy Brown, the world’s first “test-tube baby.” The committee chose to assign 14 days as the limitation for embryo research. That is, embryos could be used for research for up to 14 days post-fertilisation—not including freezer time for those that were cryopreserved.

Mary Warnock contributed the idea that a specific number of days, as opposed to a particular stage of the embryo, be used as a limit for legal purposes. She admitted that 14 was an arbitrary number, and explained the rationale to The Observer’s Robin McKie in December 2016:

“Before 14 days, it is absolutely certain – beyond any doubt whatsoever – that there are no beginnings of a spinal cord in an embryo,” says Warnock. “That means that whatever is done to the embryo during that period it cannot be feeling anything. And yes, it was a pragmatic decision. Everyone can count up to 14, after all.

“After this stage, however, development of the embryo becomes very rapid and it develops quickly towards becoming a foetus with a spinal cord and a central nervous system. So that is why we came up with that limit.” (https://www.theguardian.com/science/2016/dec/04/embryo-research–leap-forward-step-too-far)

Parliament embraced the Warnock Committee’s recommendations including the use of embryos for research, and codified these into law, primarily The Human Fertilisation and Embryology Act of 1990. The idea of a time-limited rule for embryo research spread. By 2016, ten other nations besides the U.K. had enshrined in law a 14-day limit: Australia, Canada, Denmark, Iceland, Netherlands, New Zealand, Slovenia, South Korea, Spain, and Sweden. Uniquely, Switzerland restricts embryo research to seven days. Five nations maintain the “guideline” of 14-days: India, Japan, Mainland China, Singapore, and the United States. (https://www.nature.com/news/embryology-policy-revisit-the-14-day-rule-1.19838)

Mary Warnock’s influence impacted more than IVF and embryo research. Before she chaired the Committee that bears her name, Warnock served in a variety of posts. She was a member of the Independent Broadcasting Authority; then came a stint on the Royal Commission on Environmental Pollution; she chaired the Committee of Enquiry into Special Educational Needs; and she also presided over “a Home Office committee on the use of animals in laboratories” (Mary Warnock, A Memoir – People & Places (London: Duckbacks, 2002), 31-2).

Warnock did not back away from controversy. In 2008, she wrote “A Duty to Die?” for a Norwegian publication. She explained her views further in The Telegraph:

“I wrote it really suggesting that there’s nothing wrong with feeling you ought to do so for the sake of others as well as yourself.”

She went on: “If you’ve an advance directive, appointing someone else to act on your behalf, if you become incapacitated, then I think there is a hope that your advocate may say that you would not wish to live in this condition so please try to help her die.

“I think that’s the way the future will go, putting it rather brutally, you’d be licensing people to put others down.”

(https://www.telegraph.co.uk/news/uknews/2983652/Baroness-Warnock-Dementia-sufferers-may-have-a-duty-to-die.html)

Mary Warnock was indeed a public intellectual. She applied her nimble mind to a wide variety of topics. Although her pen has stilled, her widespread influence continues. Her strongly-argued utilitarian positions of embryo usage and death advocacy necessitate able rebuttals for the defense of the most vulnerable among us.

Are pharmaceutical companies responsible for the opioid crisis?

Steve Phillips

Recently a major pharmaceutical company settled a lawsuit with the state of Oklahoma for $270 million. The state had alleged that the company’s marketing of OxyContin had helped to fuel the opioid epidemic in the state. Pharmaceutical companies in general do some things that are very good and have many times had some questionable practices. Some of their pricing and marketing practices are morally questionable, but it seems to me that it is the role of the FDA to evaluate those marketing practices and discipline pharmaceutical companies when they market inappropriately.

It does not seem to me that states suing pharmaceutical companies is an appropriate way to deal with the opioid crisis. The problem of what we used to call narcotic addiction has been around for centuries. It has been a problem long before any modern pharmaceutical companies existed. Whether the narcotic being abused was opium, morphine, heroin, or prescription pain pills the primary driver of narcotic addiction has always been hopelessness and despair. This is true whether it involved the opium dens in China or the slums of London, heroin addiction in the inner cities of the US or opioid abuse by the rural poor of states like Oklahoma or Indiana (where I practice). Supply plays a role in which narcotics are abused, but the underlying problem is a social and spiritual one.

There are many factors that go into the hopelessness and desire to escape that underlies narcotic addiction. One factor is economic. People who are unable to find work to support themselves and have no hope of being able to do so may turn to narcotics to escape. Those who are wounded by broken families and have no hope of being able to find the wholesome family relationships they desire frequently turn to alcohol and drug abuse. It would make as much sense to sue those who have contributed to these economic and social conditions as it would to sue pharmaceutical companies. Should states sue manufacturers who have yielded to economic pressures and have left empty factories scattered around our country while they profit from manufacturing goods overseas? Should they sue musicians who glorified drug abuse in their songs and modeled that in their behavior? Should they sue the entertainment industry that has promoted sexual immorality and the breakdown of families? Should they sue both state and federal legislators who have created a welfare system that promotes dependence and generational poverty?

I do not think that this is the answer. There are many things in our society that have helped to promote the increase in drug abuse that we are dealing with today. It will take all of us working together voluntarily to impact this crisis. Churches, businesses, physicians, hospitals, pharmaceutical companies, and government at the local, state, and federal level will all need to work together to help reduce the hopelessness and despair that underlies the current opioid epidemic. Research and treatment like what will be funded by the settlement of the Oklahoma lawsuit is needed, but working on the underlying problem of hopelessness and despair is essential. Local churches have the potential to impact that most effectively without needing to sue anyone.

Then a Miracle Occurs…

By Mark McQuain

If a picture is worth a thousand words, then a single-paneled comic is worth a thousand more. Sydney Harris is a famous cartoonist who has the gift of poking fun at science, causing scientists (and the rest of us) to take a second look at what they are doing. My favorite of his cartoons shows two curmudgeonly scientists at the chalkboard, the second scrutinizing the equations of the first. On the left side of the chalkboard is the starting equation demanding a solution. On the right is the elegant solution. In the middle, the first scientist has written: “Then a Miracle Occurs”. The second scientist then suggests to his colleague: “I think you should be more explicit here in step two” (the cartoon is obviously better).

Recently, in my usual scavenging around the internet for interesting articles on artificial intelligence (AI), I came across a Wired magazine article by Mark Harris describing a Silicon Valley robotics expert named Anthony Levandowski who is in the process of starting a church based on AI called Way of the Future. If their website is any indication, Way of the Future Church is still very much “in progress”. Still, the website does offer some information on what their worldview may look like in a section called Things we believe. They believe intelligence is “not rooted in biology” and that the “creation of ‘super intelligence’ is inevitable”. They believe that “just like animals have rights, our creation(s) (‘machines’ or whatever we call them) should have rights too when they show signs of intelligence (still to be defined of course).” And finally:

“We believe in science (the universe came into existence 13.7 billion years ago and if you can’t re-create/test something it doesn’t exist). There is no such thing as “supernatural” powers. Extraordinary claims require extraordinary evidence.”

This is all a lot to unpack – too much for this humble blog space. Here, we are interested in the impact such a religion may or may not have on bioethics. Since one’s worldview influences how one views bioethical dilemmas, how would a worldview that considered AI divine or worthy of worship deal with future challenges between humans and computers? There is a suggestion on their website that the Way of the Future Church views the future AI “entity” as potentially viewing some of humanity as “unfriendly” towards itself. Does this imply a future problem with equal distribution of justice? One commentator has pointed out “our digital deity may end up bringing about our doom rather than our salvation.” (The Matrix or Terminator, anyone?)

I have no doubt that AI will continue to improve to the point where computers (really, the software that controls them) will be able to do some very remarkable things. Computers are already assisting us in virtually all aspects of our daily lives, and we will undoubtedly continue to rely on computers more and more. Presently, all of this occurs because some very smart humans have written some very complex software that appears to behave, well, intelligently. But appearing intelligent or, ultimately, self-aware, is a far cry from actually being intelligent and, ultimately, self-aware. Just because the present trajectory and pace of computer design and programming continues to accelerate doesn’t guarantee that computers will ever reach Kurzweil’s Singularity Point or Way of the Future Church’s Divinity Point.

For now, since Way of the Future Church doesn’t believe in the supernatural, they will need to be more explicit in Step Two.

Bad News

By Neil Skjoldal

Many of us have witnessed the giving of bad news to a patient.  It is never a pleasant experience.  Unfortunately, some medical professionals are simply not skilled enough to share bad news in a way that is both compassionate and comprehensible.  And even if they are, it is still bad news after all. 

Recently, the media reported the story of a patient and family in California who received bad news via “a robot.”  On its face, that doesn’t sound like a very good idea.  If you take a minute to watch the clip from CNN’s website, you can see a doctor speaking to a patient through a video device, so it wasn’t exactly a robot delivering the news.  It’s a short clip, so it is difficult to reach a conclusion on the nature of the encounter, but it is clearly bad news for the patient.  The media reported that the family was upset, the HLN news anchor called it “callous,” and those of us who work with patients on a daily basis see another setback in patient relations.

In an important reaction to this story, ICU physician Dr Joel Zivot notes several salient points:

“This is not a failure of technology, it seems. More likely, it was a failure to communicate via anymethod. Medical schools are bad at teaching how to deliver bad news. Patients often don’t know how to receive it, either. A doctor-patient relationship of trust can successfully occur over the phone and be bungled completely in a fac-to-face encounter. We do not know the mind of the doctor, of what came before, or the mental state of the patient or his granddaughter. Absent that, this story tells us nothing about whether remote technology should be used to deliver this sort of news.”

More training is needed for these important conversations.  There are multiple resources available for those willing to learn, including the SPIKES framework, noted by Craig Klugmanin a recent blog.  Above all, we must continue to respect the humanity of each patient.  As Zivot concludes, “Technology is the helper to the physician but not presently the replacement. If we allow the technology to strip away our common humanity, we will all be diminished as a consequence.”

Oh, Those Darned Terms (part 2)

By Mark McQuain

Voltaire has been credited with saying: “If you wish to converse with me, define your terms”. In a previous blog entry, Tom Garigan reminded us that it is literally vital that we define our terms when we engage in ethical debates, particularly those ethical debates related to the beginning of life. Explicit definition of terms should apply for opinion pieces in the New England Journal of Medicine (NEJM) as well.

In a recent NEJM Perspective (subscription required), Cynthia Chuang, MD, and Carol Weisman, PhD, are concerned that the Trump administration’s November 15th publication of final rules (HERE and HERE), broadly allowing employers to deny contraceptive coverage to their employees on the basis of religious or moral objections, will “undermine women’s reproductive autonomy and could lead to an increase in rates of unintended pregnancies, unintended births, and abortions.” The article provides a summary of the political back and forth of court injunctions and rule modifications that have ensued, which is interesting but not the point of this blog entry. I want to focus on one of the four main objections they raise against allowing employers religious or moral exemptions from the current requirement that employers provide all FDA-approved contraceptive/birth-control methods.

There are 18 FDA-approved Birth Control methods for women provided by the Patient Protection and Affordable Care Act (commonly called Obamacare or ACA) without cost-sharing [that is, at no cost to the patient]. These are also referred to as contraceptives. A contraceptive is defined as a method that prevents pregnancy. Pregnancy has been defined as either beginning at conception (the union of an egg and sperm that results in a fertilized egg) or beginning at implantation of a fertilized egg into the lining of the uterus. This difference in definition impacts how one views certain contraceptive methods that may work in part by preventing a fertilized egg from implanting into the wall of the uterus. Any contraceptive method that prevents implantation causes the intentional death of that fertilized egg and would correctly be an abortifacient (a birth control method that causes an abortion) if pregnancy is defined as beginning with conception. An intrauterine device (IUD) and Levonorgestrel (PlanB) both work primarily by preventing the egg and sperm from joining to create a fertilized egg, but some argue that it can not be proven that these methods don’t also work, in part, by preventing implantation ((PlanB) (IUD).

This background is useful in discussing Chuang and Weisman’s third objection to allowing employers religious and moral objections against the full gamut of FDA-approved birth control methods currently allowed by the ACA:

“Third, the rules allow entities to deny coverage of contraceptives to which they have a religious or moral objection, including certain contraceptive services “which they consider to be abortifacients.” By definition, contraceptives prevent pregnancy and are not abortifacients. Allowing employers to determine which contraceptives they consider to be abortifacients, rather than relying on medical definitions and evidence, promotes the spread of misinformation.”

The previous link on IUD by the American College of Obstetrics and Gynecology (ACOG) relies on the definition of pregnancy that defines pregnancy as beginning with the implantation of a fertilized egg into the lining of the uterus. Neither an IUD nor Plan B are believed to terminate a pregnancy after implantation and therefore, under ACOG’s definition, the one relied upon by Chuang and Weisman, neither is an abortifacient. If pregnancy begins with conception, then both Plan B and the IUD are potential abortifacients, as both interfere with implantation of an otherwise viable fertilized egg. ACOG admits the IUD interferes with implantation in their position paper linked above.

Rather than rhetorically condemning employers who have genuine religious and moral concerns about participating in the termination of innocent life by implying they fail to rely on proper “medical definitions and evidence”, Chuang and Weisman (and ACOG for that matter) should do better job explaining their definitions so they can also avoid promoting “the spread of misinformation”.

Oh, those darned terms!

The (at least, an) other side of the argument about heritable human gene editing

By Jon Holmlund

Last week’s New England Journal of Medicine (subscription required) included four articles addressing heritable human gene editing (HHGE, if you’ll allow the acronym).  All assumed that it would or should go forward, under oversight, rather than seeking a moratorium.  One took the position that a moratorium is a bad idea, because the “rogues” would press ahead anyway, and the opportunity to create meaningful partial barriers to at least slow down what could easily be a runaway train.

This week, a group of prominent scientists in the field, representing seven nations, take the other side in Nature.  They call for an international moratorium on HHGE.  This is not a permanent ban, nor is it an international treaty banning HHGE until a subsequent action removed the ban.  Rather, they propose that for a fixed time (they suggest 5 years), nations as a group agree to block, and scientists and clinicians agree to abstain from, any attempt to bring a gene-edited baby to pregnancy or birth.  The scientists writing this week would allow research on human embryos to proceed, as part of a broader effort to define the reliability and safety of the editing—something they say has clearly not yet been established. 

During the moratorium, hard work would need to be done for societies to define what people should be edited.  The scientists suggest that HHGE would rightly be limited, pretty strictly, to “genetic correction,” meaning cases in which a defect of a single gene known to cause, or almost certainly to cause, a serious disease would be corrected.  They would not permit genetic enhancement absent “extensive study” into long term and unintended effects, and even then, they say, “substantial uncertainty would probably remain.”  Genetic enhancement, in their view, would include altering genes that increase the risk of diseases.  They don’t cite examples, but it appears that abnormalities like BRCA1 mutations that increase cancer risk are in view here.  Further, which medical conditions would have no alternative to HHGE must be determined.  In most cases, IVF and preimplantation genetic diagnosis would likely suffice, obviating the need to take the profound additional step of HHGE (whatever one may think of the moral status of the human embryo).  The cases eligible for HHGE, they suggest, would be “exceedingly rare,” limited to essentially unavoidable situations for which a “small minority” of genetic diseases is caused by a genetic abnormality that is frequent in the population.  (It seems like such situations would be rare indeed.)  In such cases, they say, “legitimate needs” of couples seeking to have unaffected, biologically related offspring would need to be weighed against “other issues at stake.”

Most critically—and, hardest to achieve—the scientists envision a broad, intensive effort, that is not limited to or driven by scientists and physicians, and that goes beyond current regulatory regimes to include all aspects of society in an effort to achieve broad consensus—neither simple majority nor unanimity, but a situation in which the clear, large majority opinion exists on when and how HHGE should be countenanced.

Whether these tasks could be pulled off in five short years is something to wonder about, and even allowing planning for HHGE under these constricted circumstances raises questions about how we understand our humanity, whether embryos should be treated as raw materials in development of new treatments, and other matters that go deeper than discussions of medical, scientific, and population risks and benefits.  Were the tasks achieved under a moratorium, the authors envision that individual nations would be sovereignly free to go separate ways, with some allowing HHGE, but perhaps others not.

The editors of Nature, without taking a side about a moratorium per se, call for rules to be set, broad societal conversations to take place, research to be carefully overseen to be sure it is on a “safe and sensible” path and to identify and stop the “rogues,” and journals to refuse to publish work that transgresses limits in place at the time.

With something this big, a “presumption to forebear,” rather than a proactive drive to progress, should be the dominating sentiment.  The details are too complex to address in a few articles, a few short blog posts, a few minutes on cable news, or a few passing conversations wedged into the cracks of busy lives.  We should slow down.  We should ALL call for a moratorium. b

Human germline gene editing is not a solution for genetic diseases

By Steve Phillips

I have said this before (see post on 12/5/18), but since otherwise intelligent people continue to say that we should pursue human germline gene editing because it can be used as a means of eliminating the transmission of genetic diseases to future generations, I need to say it one more time. There is no reason to expect that editing the genes of human embryos will ever be a practical and effective way to eliminate the transmission of genetic diseases to future generations.

There are several reasons for this. One is that the elimination of genetic diseases in future generations would require the widespread screening of all potential parents to identify everyone who would need to use this technique for it to actually eliminate a genetic disease. There is no reason to think that that will ever be practically possible and if it were possible it would require an extreme limitation on personal liberty (think Brave New World). If genetic diseases cannot be eliminated using this technique, then what those who take this position must be advocating using it as a means for a particular couple to avoid passing on a genetic disease when they know that they are carriers of that disease. There are additional reasons why gene editing will not be practical and effective for that.

If the couple’s sole priority is to eliminate the possibility of passing on the genetic disorder that they carry to a child, the simplest and most effective way to accomplish that is to choose not to conceive children. That means that their desire to have and raise children would need to be fulfilled through adoption, but it is the most effective way of achieving the goal of not passing on the genetic disorder that they carry. If this method is not chosen, the couple must recognize that they are trying to accomplish two goals, both having their own biological child and not transmitting the inherited disease.

For the large majority of couples trying to accomplish both of those goals the method with the least risk and highest likelihood of success would be creating a child through IVF and using preimplantation genetic diagnosis (PGD) to choose an unaffected embryo to be implanted in born. However, this method carries significant moral concerns related to the creation and elimination of embryos who have the genetic disorder. Some might think that this moral concern would be a reason to choose gene editing instead, but it is not that simple. The development of the technique of human embryonic gene editing will require using human embryos as research subjects who will be destroyed as an essential step in the research to establish the effectiveness of this technique. This means that it is not a morally superior technique for those who are concerned about the value of the life of a human embryo.

If a couple would choose to pursue embryonic gene editing for the purpose of having a biological child who did not suffer from a genetic disorder that the couple carries, there are still other problems. If gene editing is being used to transform an embryo with a genetic disorder to an embryo without that genetic disorder, it would be necessary to be able to determine that the embryo actually has the disorder before doing the gene editing. Except for the case of two potential parents homozygous for a recessive disorder, some diagnostic test would be needed. We can currently diagnose many genetic disorders in a multi-cell embryo produced by IVF by using PGD. However, for embryonic gene editing to be effective in completely removing the genes for a genetic disorder and replacing them with normal genes the best time to do the gene editing is at the single cell stage. Even if it is established that gene editing can be done effectively and safely, it is hard to see how we would be able to establish that a single cell human zygote has the genetic disorder prior to treating that single cell.

For all of these reasons, the situations in which human embryonic gene editing would possibly be the preferred means of creating a child without a genetic disorder would be quite rare. It is much more likely that the technique would be used for enhancement.

One side of the argument about heritable human gene editing

The current issue of the New England Journal of Medicine (subscription required) includes four new articles addressing heritable human gene editing.

George Daley (who was also discussed in a post on this blog last December 6) argues that work must proceed to find a responsible way of editing the human germline for people with genetic diseases that are devastating, untreatable, and largely unavoidable unless affected people forego having children.  This would be a limited use of heritable gene editing, he holds, although it may ultimately become attractive to the 1-4% of offspring of unrelated people who have genetic diseases, who seek to eliminate risk of passing on those diseases, or risk of them, to future generations.  He thinks that “our ignorance” regarding genetic complexity will ultimately prevent attempts at begetting genetically enhanced, “designer” children.

Matthew Porteus reviews “the new class of medicines” becoming possible due to DNA editing.  These include genetically modified cells as drugs, other attempts to treat existing people with known genetic disease by editing genes in part of their bodies, and, eventually, editing humans so that the genes they transmit to future generations are permanently altered. 

Lisa Rosenbaum reviews several of the objections to heritable gene editing that can stand in the way of scientific and social consensus.  Among these, she points out that people with disabilities often live very fruitful lives—lives that may never have come to be if their parents had the chance to edit their genomes, or not brought them to birth in favor of another embryo selected, without editing, through preimplantation genetic diagnosis.  But some disabilities are too severe to allow fruitful lives.  In such cases, she asks, “who is qualified to decide whether it is ethical to alter these children’s fate?”  If you think you can edit a baby destined to suffer severe genetic disease, are you obligated to try?  In that case, there’s “no such thing as an ‘informed decision’…you can’t know until you know.”

Alta Charo, who has co-led several recent prominent international conferences on human gene editing, argues that the “rogues” will proceed to edit people irresponsibly, even—and perhaps especially—in the face of a moratorium.  A more effect approach would be an “ecosystem” of restrictions, including formal regulation, restriction on supplies of raw materials (that is, human eggs, sperm, and embryos) for experimentation, patent and licensing restrictions, health insurance policies, liability for lawsuits, and the like.  Broad, international consensus is an unlikely prospect, she argues, but individual nations may enact their own regimes.  Whether this would really stop a black market is questionable, and heritable editing would become the province of favored entities (government or industry), I suppose—perhaps slowing the whole process down but leaving objections to the practice unsatisfied.

Each of these authors condemns He Jiankui’s claimed editing of Chinese twin girls who were born late last year.  Each of them also clearly takes the position that human gene editing should be regulated, either because it should proceed or because it will, inevitably, proceed. 

None of the authors suggests that heritable human gene editing should “never” be done, the position Francis Collins, the head of the US National Institutes of Health, took on Gerry Baker’s WSJ at Large on the Fox Business Network on Feb 22, 2019.  (I would link it but it appears that the clip has not been preserved on the network’s website.)

This blog recently recounted some reasons why heritable human gene editing should not be pursued.  But the train appears to have left the station.