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

Gene-Edited Animals as Trailblazers

By Jon Holmlund

 

The Chinese researcher who says he edited the genes of two recently-born twin girls is named He.  He’s not a deity, that’s just his name.  (I don’t think it’s pronounced with a long “e,” by the way.)  His motivation appears to have been to be the first, to show that He could really do it. 

While scorn is mostly being heaped on He, this work has been going on in livestock for a long time, in attempts to make animals with leaner meat, or more meat, or ones that are disease-resistant, or more tolerant to hot or cold weather, or ones that have softer or more durable fur for shearing and making into cloth.  Or, cattle could be altered so they don’t have horns, and don’t have to be dehorned after birth.

Proponents consider this work to be just like crossbreeding, only a lot faster.  That’s an oversimplification, of course, since cross-breeding follows naturally occurring processes of genetic modification, not the synthetic editing of specific genes, but for the moment that’s beside the point.  The agriculture industry is keenly interested in it—the potential could be large.  Some governments want to push it.  Which ones?  You guessed it—China—but also the US, as part of the current administration’s efforts to reduce regulation and foster innovation.

Reportedly, some of these animals’ meat has been tested, and found safe.  (No claim, yet, that it’s delicious.)  But nothing commercial, at least not yet in the U.S.

One problem, though:  the animals have unpredicted other abnormalities.  Some pigs edited to be meatier also had an extra vertebra in their spines.  Some rabbits similarly edited had unusually large tongues.  And the edited animals often don’t make it to live birth, or even implant into adult females to cause pregnancy.  The process sometimes uses cloning to create the animal embryos in the first place, and it’s speculated that the cloning process, not the specific gene editing, is causing the problems with pregnancy.  But that’s not for certain.

In recent decades there has been a hue and cry over the safety of genetically modified plant foods, but they appear to be safe for human consumption, and they don’t fundamentally alter the biosphere.  The meat or milk or fur of genetically engineered animals would seem likely to be safe for human use, also, and if the animals really are created just for human use, some bizarre deformities may not be so objectionable.

Of course, that prompts questions of animal use and welfare that require more than a short blog post.  But in the case of humans, we would anticipate living with and caring for gene-edited offspring.  We would not be producing them solely for use or consumption.  Or would we—for example, for organs to transplant?  Probably not.

Proponents of limiting the use of artificial human reproductive techniques sometimes argue that it is good for children to be received as gifts, and that, rather than being “ordered to specification,” their specific characteristics be welcomed as something of a surprise.  I suppose that off-target effects of heritable human gene editing could prove to be surprises, indeed.

One scientist quoted in the general press says that, regarding editing animals, ‘if we don’t try, we will never learn.” Another, an animal advocate, says, again about the animal work, “I think it would be an understatement to say we should be more cautious…I think we’ve already gone over the line with animals, and now humans.”

For sure, and now, with humans, a major question will be, how will we regard and handle the mistakes?

The hope of Christmas

By Steve Phillips

Every year at this time I try to spend some time reflecting on the meaning of Christmas and for this blog I try to reflect on how the meaning of Christmas interacts with bioethics. This year the Christmas musical program presented by the choir that I sing in at our church was focused on the themes of hope, love, joy, and peace represented by the outer candles of the Advent wreath that we light each of the four Sundays of Advent. As I have been thinking about the meaning of Christmas I have been focusing on the hope of Christmas.

One of the reasons that I have been thinking about hope is that I see so much hopelessness in the small rural community where I live and practice. Many of the patients that I care for feel hopeless. It can be seen in how the community is impacted by substance abuse and suicide as I wrote about last year. Many would relate the hopelessness to the poor economic climate of the community, and that does have a significant impact on people’s lives. But being poor does not necessarily entail hopelessness. There are many examples of those who are economically poor but rich in hope and joy. Hopelessness comes from a poverty of the soul that is more than just economic. It comes from a lack of positive relationships and positive social interaction. It comes from a lack of anyone or anything in which people can put their trust. Hopelessness comes from seeing that this world is far from what it ought to be and having no reason to think that will ever change.

The message of Christmas is that, even though we live in a broken world that is not what it ought to be, there is a remedy for the brokenness of this world. The way by which our brokenness can be healed came to earth as a baby born in Bethlehem. Jesus became one of us to be God’s clearest revelation of himself to us. His death provided the answer to our brokenness. His resurrection provided assurance of the hope that we can have in him. That is the hope of Christmas. Jesus is the answer to our own hopelessness, the hopelessness of those in our communities, and the hopelessness of the world.

After God

By Mark McQuain

In the December issue of The Journal of Medicine and Philosophy, editor Dr. Mark Cherry invited reviews of the late Professor H. Tristram Engelhardt, Jr.’s book After God: Morality & Bioethics in a Secular Age. Dr. Engelhardt passed away this past summer and was the co-founding editor of the Journal. The emphasis of this recent edition was to review the themes of After God and offer emphasis as well as counter arguments to these themes. The above link offers some free access to several articles though most require subscription or individual purchase.

I became familiar with Dr. Engelhardt’s theses on the weaknesses and limitations of secular bioethics during my coursework at Trinity by reading his book “Foundations of Bioethics” and hearing one of his guest lectures. One argument against a transcendental basis for morality or bioethics was that not everyone acknowledged a particular transcendental source. Wouldn’t pure logic and rational argument be a better method for grounding our bioethics? Couldn’t we simply develop a universal secular bioethics that everyone would rationally agree with? Engelhardt’s answer was simply – No. In Foundations of Bioethics he said: “The more a moral vision, moral understanding, thin theory of the good, account of right conduct, etc., has content, the more it presupposes particular moral premises, rules of evidence, rules of inference, etc. The more it gains content, the more it will appear parochial and partisan to one among numerous particular moral understandings. Universality is purchased at the price of content. Content is purchased at the price of universality.(p 67)” In other words, “to resolve moral controversies by sound rational argument, one must [already] share fundamental moral premises, rules of moral evidence, and rules of moral inference and/or of who is in moral authority to resolve moral controversies.(p 40)”

In After God, Dr. Cherry argues that Dr. Engelhardt carries his previous theses to their logical conclusions within our present culture “which shuns any transcendent point of orientation, such as an appeal to God or to a God’s eye perspective on reality.” Per Cherry:

“Without reference to God to guarantee that the virtuous are rewarded and the vicious suffer, there is no reason to believe that rationality requires one to be moral, much less why it would be prudent to act in accordance with morality. We are confronted with foundational concerns regarding sexuality, reproduction, suffering, and death, but without any particular guidance regarding how properly to engage and confront such challenges. Instead of content-full moral answers to guide bioethics and healthcare policy, we are left with a diverse set of lifestyles and death-styles among which to choose with no definitive reasons for preferring any particular choice of one over another. If the universe originated out of nothing, and is going nowhere, for no particular reason, then everything is ultimately absurd. Such, Engelhardt argues, are the epistemic and moral implications of a culture that seeks to be fully after God.”

It strikes me as somewhat ironic that this issue of the Journal comes out during the advent season, a time when Christians celebrate the incarnation of God on earth, necessarily asking us to consider how our present culture views its secular bioethics “after the death of God”.

“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.”

Human Embryos as Raw Materials

By Jon Holmlund

 

This past Tuesday, the Presidential Symposium at the 2018 Annual Meeting of the American Society of Hematology (ASH) addressed human gene editing.  The speakers included NIH Director Dr. Francis Collins, who spoke about somatic gene editing.  That’s the attempt to edit disease-causing genes in existing, fully formed individuals who have the disease in question, as treatment.  It’s generally well-addressed by our current ethical principles for human subject research, and it’s easy to agree that it is an appropriate use of gene editing technology, which has become so widespread—and, indeed, largely uncontrollable—because of the recently-discovered, highly efficient, easy-for-scientists-to-use CRISPR-Cas9 system.  The NIH has a specific Somatic Cell Gene Editing program.

Dr. Collins was followed by Dr. George Daley of Harvard, who presented a thoughtful case for proceeding with heritable gene editing—i.e., of germ cells (eggs and sperm) or, more likely, embryos, specifically during in vitro fertilization.  The recent editing of twin babies, announced in Hong Kong, was highly irresponsible, he said—in agreement with the vast majority of expert and general public commentators.  Fundamental principles of human subject research had been disregarded.  We must do what we can to guard against “hubris.”  Nonetheless, he agreed with the U.K.’s Nuffield Council opinion of earlier this year that ethical uses of human gene editing can be imagined.  Specifically, rare, serious genetic diseases untreatable by other means would qualify.  But rarity should not be a rigid requirement; there might be other genetic diseases for which future research would identify heritable gene editing as a viable if not preferred approach.  A “stop sign” or “red light” should be erected at enhancement—e.g., trying to edit genes to get more muscular or smarter people.  But this seems like a distant prospect.  Dr. Daley ended by endorsing a statement of the recently-concluded international symposium on gene editing in Hong Kong:  a “rigorous translational path” should be defined for human gene editing.  In everyday English:  steps to refine the technique in the laboratory should be taken, and steps needed to bring that work to the editing of people should be identified, in much the way that current regulated new drug development follows a series of well-defined steps.

But the actual translation should not go forward until there has been serious consideration of the societal and ethical concerns.  Some such efforts are happening now, he said.  I’ve blogged over the last few years about some of these, but you may not have heard of many, much less had a chance to contribute or had any way of thinking that concerns you might have would be properly represented.  Indeed, as I have said on this blog earlier this year (see my March 29 post, for example), it’s hard to imagine how to conduct social deliberation of the scale required by the utterly revolutionary prospect of human gene editing.  In a Q+A panel session, Dr. Collins asked Dr. Daley whether the answer to such deliberations might be “no”—might there be a decision not to proceed at all with editing human embryos?  Dr. Daley said, “yes, of course,” but I wonder.  For his part, Dr. Collins had sounded a highly cautionary note:  Embryo editing raises serious safety concerns, issues of informed consent, and questions about what it is to be human, he had said.  Perhaps its proper use would be so narrowly circumscribed that it really is not worth the trouble.  “Bad cases make bad law,” as it were, he had said.

After my post of last week, an inquirer had wondered aloud whether someone contributing to this blog might be able to figure out how many embryos had been destroyed in the run-up to the Chinese twins’ birth, or, for that matter, for the other laboratory experiments done so far in human gene editing.  Skeptical that such data exist anywhere, your correspondent nonetheless asked Dr. Daley in the Q+A whether there was any way reliably to estimate the “supply need” (I used that phrase) for human gametes or embryos in the course of the “rigid translational path.”  Dr. Daley of course could not make any more precise estimate than “very many embryos” would have to be destroyed in the process.  I must concur; I cannot see how a quantitative estimate could be made.  He allowed that moral objection to this would be one of the issues with this work, and commented that in the U.K., plans are to issue licenses for the necessary embryo experiments as part of an attempt to regulate them.

But the emerging picture is that human embryos are “raw materials” supporting the “translational” development of heritable gene editing, much as starting chemicals are raw materials for the production of a new drug.  That production process is governed by a panoply of regulations collectively referred to as “Good Manufacturing Practice,” a term that was applied to human gene editing more than once in the aforementioned ASH symposium.

I also asked whether the so-called “14-day rule” that scientists voluntarily follow as a time limit on human embryo research—i.e., don’t let them get more than 14 days old before killing them—would have to be relaxed.  Dr. Daley thought not.  I must say I wonder.  If embryos could be maintained in the lab for more than 14 days—something that still is not technically feasible, but is being actively contemplated by scientists in the field—might someone not insist that their development be followed as long as possible before taking the step of trying to bring them to term—that is, to full pregnancy and birth?

Perhaps not.  Unless more sophisticated “hatcheries” are developed, edited embryos would have to be implanted in a woman’s womb, after which there would be a progressively stronger presumption against aborting them, the older their gestational age.  But such a presumption would not be absolute under current American law and jurisprudence.  To be sure, the later a research abortion—currently prohibited in the U.S.—the greater a risk to a pregnant woman, not just the fetus being aborted.

And other intrepid actors, somewhere in the world, might well try to proceed outside a fully-regulated framework, purposefully setting up assessments at various gestational ages.

I must add that one liability of the line of thinking I have been taking here is that it might promote the misconception that the principal or even only reason to object to heritable human gene editing is a “pro-life, anti-abortion, religious” concern about the moral status of human embryos.  Not so, although the status of the embryo is a critical consideration.  There are lots of other reasons to object to this revolutionary development, and to say, as Dr. Collins suggested that “the answer should be ‘no.'”

About which more, much more, in the coming weeks.

 

Gene editing for genetic enhancement

By Steve Phillips

I appreciate the prior posts by Jon Holmlund and Mark McQuain regarding the recent announcement of the birth of genetically modified twins in China. Much has been written about why this should not have been done, but something very significant has been left out of most of those responses. They have failed to mention that the scientist who created the genetically altered twins was doing a form of genetic enhancement. As I have noted before, the only real reason for anyone to do research on the genetic modification of human embryos is to enable the possibility of human genetic enhancement. The scientist involved in this situation has recognized that and directly pursued it. I suspect that his open pursuit of enhancement is one of the reasons why he has received such a negative response from those who otherwise support the permissibility of using human embryos for experimentation on germline genetic modification.

The primary argument presented for why this was wrong is that he has subjected two healthy human infants to the unknown risks of genetic modification without any corresponding medical benefit to the infants. The modification was disabling the gene that codes for a cell membrane receptor that the HIV virus commonly uses to gain entry into cells it infects. The hope was that these infants would have enhanced resistance to HIV infection, although not complete immunity to such infection. The infants themselves would not have been at increased risk for HIV without the modification, but the parents had a desire to have children with increased resistance because their father has HIV and is aware of the difficulty of living with the disease. Thus, the modification was being done to provide an enhancement desired by the parents and was not being done to infants would have otherwise suffered from a genetic disorder.

Most who support current research to develop effective techniques for human germline genetic modification take the position that the safety of doing this has not been established well enough to use the technique to create infants and that when the research does reach the point that genetically modified human infants are created it should only be in situations in which those infants would otherwise have had serious genetic disorders. They are correct that this technique is currently unsafe but fail to realize that we will probably never be able to establish the safety of this type of genetic modification, because that would require safety data from multiple generations of these infants’ offspring. The idea of restricting this technique to infants who would have been born with serious genetic disorders and the idea that this technique could be used to rid the world of these genetic disorders does not make sense. If a couple desires to have children and know that they are at risk to have a child with a serious genetic disorder and have no moral concerns about the destruction of human embryos involved in such things as genetic modification, they can pursue selection of an unaffected embryo using PGD and have no need to take on the additional risks of genetic modification. Using genetic modification to eliminate genetic diseases would require a Brave New World scenario in which all human beings are artificially conceived and natural conception is prohibited. Therefore, the only reason to pursue the genetic modification of human embryos is for the purpose of human enhancement.

Let me be clear that I agree that what the scientist has done is wrong because he has subjected these two infants to significant risk without any significant medical benefit. That is always wrong. However, the strength of the negative response from those who generally support research to develop human germline genetic modification is likely due to the fact that he has opened up to public scrutiny the real purpose of such research. He has also shown that it is not true that we can ignore ethical concerns about enhancement because we could regulate the use of genetic modification so that would not occur. Enhancement was the goal of the very first use of this technique to produce human infants.

The Genetic Singularity Point has Arrived

By Mark McQuain

November 2018 will go down as one of the most pivotal points in human history. Jon Holmlund covered the facts in his last blog entry. Regardless of what you think about the ethics of He Jiankui’s recent use of CRISPR to alter the human genomes of IVF embryos and his decision to intentionally bring those genetically altered twin girls to full term, one thing is perfectly clear – we humans are in charge now. Whether you believe in God or Nature as the Entity or Force that previously determined the arrangement of our genes, humans now sit at the adult table and will be gradually (rapidly?) making more of those genetic decisions. Like Kurzweil’s upcoming Singularity Point when computers develop sufficient artificial intelligence to design the next computer, humans have now reached the point where we can and are willing to design the next human.

The Genetic Singularity point has arrived.

While there are some scientists who are frustrated that our Institutional Review Boards and ethics committees have held us back this long, most of the rest of us are frankly stunned and uneasy that we have reached this point. But anyone who thinks our stunned uneasiness will prevent a repeat of this experiment or prevent a push to alter increasing portions of our human genome to change other genetic sequences will simply remain more frequently stunned and persistently uneasy, ethical arguments notwithstanding.

My reason for expecting this to be the case is I believe we will hear increasing demands of the form that now that we have the ability to change our genome, we have the responsibility to change our genome. In fact, it would not surprise me to see, in the not-to-distant future, insurance companies paying for the cost of IVF/CRISPR to modify your child’s genome to prevent disease/condition X to avoid paying for the later treatment of disease/condition X. Oh, you won’t be forced to do this. But, if you choose to rely on God or Nature for your baby’s genetic pattern, “we” won’t be responsible for his or her care. And, if big data can eventually be married to IVF/CRISPR to statistically improve one’s chances of having a smart/beautiful/athletic/successful baby, wouldn’t you want the same for your child? Since it will be our responsibility, how could a parent not choose to make their child the best that they could be?

This will be Gattaca writ large.

Being at the Genetic Singularity point, by definition, means we humans choose our next step. We have reached the point where we believe we are ready to select our future direction. It is up to us now to chart our own course. Our genetic trajectory is our responsibility. Our success or failure, or more broadly, our future good or bad, is finally ours to determine – really ours to assign.

So Man created mankind in his own image, in the image of Man he created them…And Man saw everything he had made, and behold, it was very good…

Approaching Immortality?

By Neil Skjoldal

With the death of President George H. W. Bush this past weekend, the country seems united in eulogizing him for, among other things,  having lived “a well-lived life,” because amidst his accomplishments, he was able to reach 94 years of age.  This brought to mind a recent article published in The NY Times, “How Long Can People Live?”  In it, health writer Nicholas Bakalar observes, “There is considerable dispute, however, over how long humans might live under optimal circumstances.”

The brief article discusses the possibility of drug therapies designed to kill old cells, while leaving young cells in place.  Apparently many are working on research projects to see what may be possible.  Even the well-known drug metformin will be tested to see its effectiveness against age-related diseases.   Bakalar is not overly optimistic.  He clearly states, “No serious scientist believes in immortality.”   Rather the goal is to assure a “healthier old age than ever before.”

I find Bakalar to be reasonable in his assessment.  Of course, one can question whether trying to extend life past 100 years is the best use of limited resources when there are so many other health issues with which to contend.  However, perhaps a ‘healthier old age’ could reduce some of those very high medical costs at the end of life which seem to plague our health care system.

I do not anticipate that I will be jumping out of an airplane at an advanced age like President Bush, but I am interested to see if any of the health issues related to old age can be addressed in a meaningful way.

The Genie is Out of the Bottle

By Jon Holmlund

 

Much has already been written and said—mostly in condemnation–about this week’s announcement of the birth of the first gene-edited baby (or, better, babies—there are twins).  A gene was altered in embryos created through in vitro fertilization, and then the embryos were transferred to their mother, who carried them to term and, reportedly, normal delivery.  The babies are said to be in good health.

A couple of good summary articles, written for non-specialists, are online from Science News and the science journal Nature. Follow those links to read more than your correspondent can write here in a short blog post.

The scientist who did this used the CRISPR-Cas9 system to alter a gene called CCR5, which is a receptor, or docking post, for the HIV virus.  Presumably, altering CCR5 would reduce the risk of HIV infection if not prevent it altogether.  The twins’ mother is reportedly not infected with HIV, but the father is.  How much risk this placed the babies at is questionable—usually, babies infected with HIV become infected because of transmission from an infected mother.  HIV can cause infection through other receptors, and altered or disabled CCR5 can increase risk of other infections.  So, overall, the medical need was questionable, there were (actually, are, one needs to see how their health is in the future) potential correlative risks to the babies, and there were likely other means to avoid what appears to have been an unlikely prospect of these babies getting HIV from their father.  Because of concerns like this, ethicists have been arguing that the action violates human research ethics, in which risks to subjects must be minimized, and benefits must outweigh risk.  Any ethics board reviewing a proposal would assess this rigorously, and ask whether there are safer alternatives to the research.

The experiment is said to have worked in this sense—analysis of their DNA shows that the target gene, and no other genes, was altered as intended.  Clearly, the rationale for the editing was to show that it could be done.  George Church, ever the risktaker in the name of “advancing the field,” argued in an interview that because HIV is incurable and there is no vaccine for it, that constituted an unmet medical need in this case.  He also argued that the scientist in question only failed to complete the proper “paperwork,” and that there might be long-term safety issues with heritable gene editing but that would not be dispositive because he is quite confident that those risks will be small, like the risks of diagnostic medical imaging.  To all of which we must respond, “rubbish.”  We do not know what the long-term risks are, ethics boards are rigorous about risk assessment for any and all experimental procedures, and the medical need in this specific case was dubious.

Nature reports that this work “has prompted an outcry from scientists, who are concerned that [the scientist] leap-frogged international discussions on the ethics of such interventions and has put the children at risk of unknown long-term health effects. ‘This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit,’ says bioethicist Julian Savulescu.”  For those who are not formal students of bioethics, Julian Savulescu is hardly a Luddite or a God-fearer who is nervous about new technologies.  He’s right, in this case.

Note the concern about “leapfogging” discussions of the ethics.  This point is also well-taken.  Scientists have been arguing that broad, public discussion of the ethics of human gene editing is urgently needed.  On March 29 of this year, your correspondent—who is scrambling to catch up even to this week’s commentary—posted about two such arguments.

But the genie is out of the bottle, and things are moving faster than most folks can keep up with.  The work reported this week was from China, but was not part of some Chinese government effort—it appears to have been entirely on private, intrepid initiative.  As a writer in the San Diego Union Tribune wrote this week, Pandora’s box has been opened and can’t be closed.

This week’s announcement came at the international conference on gene editing, in Hong Kong.  The two days’-plus of proceedings, including a session with the scientist who did the work discussed here, can be accessed online.  The conference main web page is here.  The proceedings archived on webcast appear to be accessible here.  A summary of the Q+A with the scientist is here.

Oh, BTW—at the end of the Nature summary linked at the top of this post was a chance to vote on whether this application of gene editing was justified.  I voted “no,” as did 82% of respondents at the time I voted.  That left “yes” at 18%.

18%?? For real?