“Nervy” SHEEFs, pain, and moral status

In May of this year, my brief essays (literally, “attempts”) on synthetic human entities with embryo-like features, or SHEEFs for short, sought to ask what sort of human cellular constructs might or might not enjoy full human moral status; to wit, the right to life.  Some experimenters with SHEEFs have suggested that, since they may bypass the early (14 days of life) markers that normal, or (if you will) canonical, human embryos demonstrate, a different moral approach is needed to determine ethical boundaries for these experiments, and the suggestion was that the capacity to feel pain would be a good substitute.

In my May 11 post, I suggested that a SHEEF with even part of a human nervous system must be accorded the right to life.  I made what is, I confess, a breezy connection between said nervous system, however rudimentary, and the identification of a human soul, on the grounds that bodily expression of human capacities commonly is through the effects of the nervous system.  The capability of any such capacities, I wanted to hold, would mark a SHEEF as a “human being” deserving of moral status.  This would distinguish it from, for example, a tissue-engineered trachea, or a kidney, or maybe even a heart, although human heart have, in their automatic conduction systems, a sort of “nervous system” capacity, I suppose.  Still, it didn’t seem to me (Edgar Allan Poe notwithstanding?) that a tissue-engineered heart would be considered a “human being,” the sort of being with “the intrinsic capacity to develop sentience, to ponder the universe, to comprehend the inevitability of mortality, to seek purpose, to yearn for love, and to suffer?”

That last quoted phrase is from a welcome essay by Dr. William Cheshire in the Fall 2017 edition of the journal Ethics & Medicine.  In his essay, “The moral significance of pain for synthetic human entities derived from embryo-like cells,” he argues, to put it all too briefly, that the ability, the realized capacity, to feel pain is an inadequate marker of human moral status.  Why?  Because some humans are incapable of nociception—physical responses to noxious stimuli.  Indeed, local anesthetic makes an otherwise fully-thriving human numb, for a while.  To say that all SHEEF experiments are OK as long as the entity doesn’t feel pain is to reduce meaning to pain, pleasure, and happiness.  Dr. Cheshire muses about a hypothetical creature, designed and bred in the laboratory, that is “sentient…possessing a complete brain composed of human neurons, yet lacking critical genes necessary for the capacity to experience pain…Rather than ask, what does it mean for a human organism to experience pain, a better question is, what does it mean to be the kind of being that experiences pain?  What does it mean to be the kind of being who has “the intrinsic capacity to develop sentience,” etc?

I was surprised when I saw that Dr. Cheshire chose for an epigram to his essay this sentence from my May 11 post:  “A moral boundary is approached when a human nervous system is brought into the plan.”  I read his essay as a criticism of my approach, but I still think the latter has merit.  I still think that some human tissue engineering with some SHEEFs might be ethical.  At the same time, I think that attempts to make too complete, too complex a SHEEF—for example, one with a whole human body except the head—would be monstrous.  I suppose that such a being would have to have a fair amount of human autonomic nervous system to function at all, and so would fall under my criterion.  And I also think that a quest for a “minimal human genome” or a “minimal human” would be frankly unethical.  (I understand synthetic biologists to be interested in the former but nobody to be suggesting the latter.)  To be ethical, experiments would have to observe serious limits from the concept stage.  And a concept of “how far can we go before we truly have the kind of being with the intrinsic capacity…?” would be out of bounds.

Check out this June 15, 2017 cartoon from the New Yorker

Uterine Transplantation – for Men?

Susan Haack began exploring the topic of uterine transplantation in women on this blog back in February 2014. In just under 4 short years, the technology has not only successfully resulted in live births in several women who received the uterine transplants, but outgoing president of the American Society of Reproductive Medicine, Dr. Richard Paulson, is suggesting we consider exploring the technique in men. While there are certainly hurdles to overcome (need for cesarean section for the actual birth, hormone supplementation, complicated nature of the transplant even for cisgender women), Dr. Paulson does not consider these barriers insurmountable for transgender women.

Dr. Julian Savulescu, professor of practical ethics at Oxford, has cautioned that initiating a pregnancy in a transgender woman may be unethical if it poses significant risk to the fetus. The above-linked article misquotes his concern as a concern over “any psychological harm to the child born in this atypical way”. The following is his actual quote from his own blog:

Therefore, although technically possible to perform the procedure, you would need to be very confident the uterus would function normally during pregnancy. The first US transplant had to be removed because of infection. There are concerns about insufficient blood flow in pregnancy and pre-eclampsia. A lot of research would need to be done not just on the transplant procedure but on the effect in pregnancy in non-human animals before it was trialled in humans. Immunosuppressives would be necessary which are risky. A surrogate uterus would be preferable from the future child’s perspective to a transplanted uterus. Uterine transplantation represents a real risk to the fetus, and therefore the future child. We ought to (other things being equal) avoid exposing future children to unnecessary significant risks of harm.

One putative benefit might be the psychological benefit to the future mother of carrying her own pregnancy. This would have to be weighed against any harm to the child of being born in this atypical way.

His concerns are the baseline medical risks involved in using a transplanted uterus to conceive a child regardless of the sex of the recipient. None of his concerns relate to the psychological harm to the child potentially caused by a uterine transplantation in a transgender woman as opposed to a cisgender woman. Savulescu is explicit in the beginning of his blog that “[t]he ethical issues of performing a womb transplant for a [sic] transgender women are substantially the same as the issues facing ciswomen.” Is the only risk to the child “born this atypical way” just the additional need for hormone supplementation in the transgender woman compared to the cisgender woman? Can we really know, a priori, what all of the attendant risks to the child really are with uterine transplantation in a transgender woman?

Regardless, let’s assume Savulescu is correct, that there is indeed no ethical difference between carrying a child to term via uterine transplantation between a cisgender woman and a transgender woman. There certainly can be no ethical difference between carrying a child to term via uterine transplantation between a transgender woman and a cisgender man. If the foregoing is true, can there be any ethical barrier preventing a man via uterine transplantation to use his sperm to fertilize a donor egg and carry his baby to term? After all, per Savulescu, all we need be concerned about from a bioethical standpoint are the technical issues/risks of uterine transplantation regardless of the recipient’s biological sex or self-identified gender.

In Genesis, God created two complimentary sexes and stated this difference was good. We are moving toward eliminating differences between the sexes and arguing that this is good. Both of us cannot be correct.

I wonder if Dr Haack thought that we would get this far down this particular bioethical slippery slope in four short years?

Is Your Polygenic Risk Score a Good Thing?

Back in October, Jon Holmlund wrote a blog entry regarding the popular company 23andMe and their collection of your health-related information along with your genetic material. I missed the significance of that relationship at the time. It took a recent article in Technology Review by my favorite technology writer Antonio Regalado to raise my ethical antennae. In his article, he explains the nexus of big data mining of genetic data and health information (such as is collected by 23andMe) and its future potential use to select embryos for IVF, selecting not only against polygenic diseases such as type 1 diabetes but potentially for non-diseases such as height, weight or even IQ.

Yikes.

Pre-implantation genetic diagnosis (PGD) already is used to select for particular embryos for IVF implantation that do not have genetic patterns such as cystic fibrosis or Down syndrome. Diseases that result from multiple genes (polygenic disorders) presently defy current PGD methods used to detect future diseases. Using Big Data analysis of health information compared against linked genetic data, scientists are getting better at accurate polygenic risk scores, statistical models which may more accurately ‘guess’ at an embryo’s future risk for not only juvenile diabetes but also later-in-life diseases (such as heart disease, ALS or glaucoma) or other less threatening inheritable traits (such as eye color, height or IQ) that result from multiple genes (and perhaps even environmental factors). There is confidence (hubris?) that with enough data and enough computing power, we can indeed accurately predict an embryo’s future health status and all of his or her inheritable traits. Combine that further with all of the marketing data available from Madison Avenue, and we can predict what type and color of car that embryo will buy when he or she is 35.

Ok, maybe not the color…

Seriously, companies such as Genomic Prediction would like to see IVF clinics eventually use their expanded statistical models to assist in PGD, using a proprietary technique they are calling Expanded Pre-implantation Genomic Testing (EPGT). Consider the following two quotes from Regalado’s article:

I remind my partners, “You know, if my parents had this test, I wouldn’t be here,” says [founding Genomic Prediction partner and type 1 diabetic Nathan] Treff, a prize-winning expert on diagnostic technology who is the author of more than 90 scientific papers.

For adults, risk scores [such as calculated by 23andMe] are little more than a novelty or a source of health advice they can ignore. But if the same information is generated about an embryo, it could lead to existential consequences: who will be born, and who stays in a laboratory freezer.

Regalado’s last comment is dead-on – literally. Who will be born and who stays in the freezer is another way of saying “who lives and who dies”.

Technologies such as EPGT are poised to take us further down the bioethical slope of choosing which of our children we want to live and which we choose to die. For the sake of driving this point home, let’s assume that the technology becomes essentially 100% accurate with regard to polygenic risk scoring and we can indeed determine which embryo will have any disease or trait. Since we already permit the use of single gene PGD to prevent certain genetic outcomes, should there be any limit to polygenic PGD? For instance:

(A) Should this technology be used to select against immediate life threatening illnesses only or also against immediate mentally or physically permanently crippling diseases that don’t cause death directly?

(B) Should this technology be used to select against later-in-life diseases that are life threatening at the time or also against mentally or physically crippling diseases that don’t cause death directly? (Would it make a difference if the disease occurred as a child, teenager or adult?)

(C) Should this technology be used to select against non-disease inheritable traits that society finds disadvantageous (use your imagination here)?

(D) Should this technology be used to select for inheritable traits that society finds advantageous (a slightly different question)?

Depending upon your worldview, until recently, answering Questions A through D used to be the purview of God or the random result of chance. Are we ready (and capable) to assume that responsibility? Make your decision as to where you would draw the line then review this short list of famous scientists and see how many on that short list your criteria would permit to be born.

Are you happy with that result? Would you call it good?

It would be nice to get this right since it now appears to be our call to make…

More about gene therapy and human gene editing

To my post of last week, add the case of a 44 year-old man who has received gene therapy for an inherited metabolic disease called Hunter’s syndrome. This is another example of a form of gene editing as true therapy.  That is, an existing individual is given a construct intended to edit his genes to introduce a gene that makes an enzyme that is lacking in the disease, and that causes terrible problems.  In this case, as part of a clinical trial, the construct, using a so-called “zinc finger” technique, is intended to introduce the gene into only about 1% of the patient’s liver cells.   If successful, the damage already done by the disease won’t be affected, but it’s progress may be arrested, with the potential to avoid having to have repeated, costly treatment with the missing enzyme protein itself.

Cool idea–and well within the current regulatory ethical regime.  The edit would not be inherited, and unborn humans don’t have to be sacrificed to develop the technique.  The adult patients are capable of giving informed consent.  Trials in children would come later, controlled by accepted ethical experimentation on children in clinical trials.

In a separate note, on a separate topic, Nature Biotechnology is editorializing that inherited gene editing is way behind mitochondrial replacement therapy (MRT), the “3-parent baby” approach to treating genetic problems, and will likely have limited use in the future.  Why?  Because it is likely that preimplantation genetic diagnosis (PGD) after in vitro fertilization (IVF) will be preferred to identify and give birth to babies unaffected by serious genetic disorders.  The journal editors argue that gene editing would be preferred only in those few cases where PGD cannot avoid passing on a disease–for example, in cases where it is known that all embryos from a fertilizing couple would be affected. Otherwise, the gene editing would not be worth the trouble.

MRT, on the other hand, has been studied more and is closer to being used to treat unborn humans who have diseases that MRT could treat.  Thing is, those diseases are also rare, on the order of 1000 cases per year in the US, and technically, gene editing would probably not be too useful for those.

There is a lot of talk about using a mix of gene editing and PGD to eliminate certain genetic disease from the human prospect.  I recently wrote about the Chinese government working on this.  To achieve the goal absolutely, every born human would have to be a product of IVF.

And the risk of some of the disorders is low enough that the absolute risk in any one “natural” pregnancy would be low.  So why go to the trouble of trying to eliminate the risks utterly?  (I think that’s a rhetorical question.)

The title of the editorial in question is “Humans 2.0.”  Indeed.

There’s gene therapy and there’s gene therapy

I’ve seen a number of different things described in the general press as “gene therapy.” But they are indeed different.  It’s important to be specific.

For one, there’s the situation where a set of mature human cells are obtained from the person to be treated and genetically altered outside the body to make them into a potentially useful treatment, then re-administered (by vein) to the patient.  Such is the case with so-called “CAR-T” therapy, which is well handled by current regulatory structures.  Main ethical issues: common human subject research concerns, regulation of the quality of the cells, and whether the treatment, which can be dramatically effective, is worth the high price.

Then there are situations where a diseased tissue is altered to make it normal, like the recent report of how a mutation in the skin of a boy was altered, and the repaired skin grafted back on, to spread over most of his body and replace the defective skin.  Again, way cool, well dealt with by current ethical and regulatory structures.

Or, similarly, Spark Therapeutics’ LUXTERNA, which is a gene injected into the eye to repair a defective gene causing blindness, literally restoring some sight, recently recommended for approval by an advisory committee to FDA.   Truly a gene made into a therapy.

Where the ethical issues get thorny is when one speaks of possibly editing a gene in a person–likely an unborn person very early in development; i.e., and embryo–in a way that can be inherited over generations.  I and others have discussed this recently on this blog.  See for example my post of last month (October 5).  Adherents say that there are serious diseases demanding cures, and that those who would counsel caution are obstructionists who fret too much about enhanced Olympic athletes.  (Example here, but subscription required.)  But the ethical issues are several: How safe and reliable will the technique be, and how much testing should be required before trying to birth “edited” babies?  How many embryos will have to be destroyed to perfect the approach?  How can we know whether there will be unforeseen long-term effects, after several generations?  How much should we care about that?  How will discrimination be avoided?  What are the implications for control of human reproduction–no more babies from sex? And who will decide and control that?

And–where, short of the Olympics, will it all end?  Should we try to edit genes that are known to increase cancer risk, to eliminate them from the human race?

The Hastings Center recently convened journalists to discuss some of the ethical issues with gene editing.  But even then, they are more concerned about whether there is a parental duty to “edit” the next generation.  Precautionary deliberations appeared to be limited to environmental concerns from the use of “gene drive” to spread genetic modifications rapidly through entire plant or animal species.  (Fair enough, but I’d extend the precautions to humans, where “gene drive” is not an issue.)  And, helpfully, the Hastings symposium did ask, will general press coverage necessarily be biased because reporters’ sources are the very scientists who tend to be enthusiasts?  In any event, the Center should not only do more public education events, but should make much more of the detailed content from such symposia available to the public for free, online, much as the Presidential bioethics commissions do.  As it is, we are left with their brief press releases, usually.  Thin gruel, IMHO.

CRISPR and Identity

Dr. Joel Reynolds, a postdoctoral fellow at The Hastings Center recently wrote a very poignant essay in Time magazine arguing that our increasing ability to edit our own genetic code risks eventually eliminating the very genetic code that results in people like his younger brother Jason, who was born with muscle-eye-brain disease, resulting in muscular dystrophy, hydrocephalus, cerebral palsy, severe nearsightedness and intellectual disability. In answering his question – “What, precisely, are we editing for?” – he makes the case that editing the code that resulted in Jason effectively eliminates Jason. I encourage you to read the short article, as any further summary on my part does not do it justice.

How much change of my genetic code would alter my identity? This is an important ethical question as scientists seek to use our growing genetic knowledge to alter our genetic code. Using preimplantation genetic diagnosis (PGD) to eliminate diseased segments of genetic code also eliminates the rest of the genome since a completely disease-free human embryo is selected for implantation and the disease-carrying embryo is destroyed/killed. Obviously, the identity of the implanted embryo is completely different from the destroyed embryo. No identity preservation here.

CRISPR-Cas9 (CRISPR) is held out as the beginning of future techniques to successfully remove and replace sections of our human genetic code. Diseases that are caused by point mutations would seem to be ideal challenges for CRISPR, where removing a single nucleotide effectively cures the individual of the disease, and, at least on cursory consideration, leaves the identity of the individual intact (after all, we would only be changing one nucleotide in the individual’s 3.2 billion nucleotide sequence in their unique genetic code).

Color blindness is one such example, one that I “suffer” from. If my parents had the ability to change my genetic code just after conception to eliminate my color blindness, it seems that I would be the same man I am today, absent the need to have my wife select my ties and socks. However, other life experiences could have been available were my color vision intact, such as F-14 fighter pilot and/or completion of the NASA astronaut selection program, both requiring normal color vision. Likely, I would have been someone with the same identity but certainly with very different life experiences.

At the more serious end of diseases with point mutations is Tay-Sachs disease, where a defective enzyme fails to prevent the build up of toxic fatty deposits in the brain and spinal cord, and, in the infantile form, results in mental impairment, severe sensory pain and pre-mature death. If I had the infantile form of Tay-Sachs disease and my parents changed my genetic code, is my identity different? Am I just the same “me” experiencing a tremendously different life experience or am I a different “me”? If I am a different “me”, is it just because we hold cognitive ability/behavior/function critical to one’s identity? One can lose the function of the nerves in one’s leg and not consider this a challenge to one’s identity. Sustain an injury to one’s brain and the challenge to one’s identity is stronger. Dr Reynold’s makes a similar case in describing his brother Jason as he actually was, compared to how he could have been had the prayers for healing been answered or genetic editing been available. To paraphrase, a “corrected” Jason is no longer Jason.

None of the forgoing discussion considers the human soul as it relates to identity or whether alterations in the human genome affects the human soul (or vice versa?). Those issues will have to wait for another blog post. For now my question is this: How much of my genetic code can I change and still be me?

The goal of human embryonic gene editing is enhancement

As Jon Holmlund reported in his post last week, research on the editing of genes in human embryos is now being conducted in the United States. The door to doing this research was opened by the consensus report on Human Genome Editing published by the National Academy of Sciences earlier this year. That report encouraged the pursuit of research on gene editing in human embryos and justified that based on the potential benefit of editing human embryos to correct genes for serious human genetic disorders. The report recommended that once basic research could show the reliability of the gene editing techniques it would be reasonable to proceed with human clinical trials as long as those trials involved the correction of genes responsible for serious genetic disorders. They stated that there were significantly more moral concerns about using human genome editing for enhancement and that enhancement should not be pursued until those moral concerns were resolved. Thus, the research currently being done in Portland, Oregon by Shoukhrat Mitalipov (see article in MIT Technology Review) involves creating human embryos with a single gene genetic disorder and then editing the abnormal gene to remove the disorder.

However, the idea that human germline genetic modification should be pursued to correct serious genetic disorders is a flawed concept. The technique used by Mitalipov does not involve treatment of a diseased human embryo, but the creation at the time of conception of a genetically altered embryo. Since the goal of this procedure is not the treatment of a diseased individual, but the creation of a child free of a particular genetic disease for parents who desire such a genetically related child, there is a much simpler and already available means to accomplish that goal. The parents can accomplish that in the large majority of cases by using preimplantation genetic diagnosis (PGD) to select an embryo that does not have the disorder. Since this method is much simpler, involves much less risk, and will undoubtedly be less expensive than gene editing, there would be very little market for embryonic gene editing for parents who are carriers of a serious genetic disorder and desire to have an unaffected child.

Some might suggest that gene editing of embryos with a genetic disorder would be morally preferred to PGD because of the destruction of the embryos who do have a genetic disorder in the process of using PGD. This is based on the human embryo having full moral status which makes the destruction of embryos inherent in the way PGD is used impermissible. However, if human embryos have full moral status, then the research being done to develop human embryonic gene editing is impermissible since it involves destruction of the embryos created for the research.

Since there will be little practical use for human embryonic gene editing in dealing with serious genetic disorders, what will human embryonic gene editing be used for? It will be used for things that cannot be done with PGD. It will be used to create children with genes that the parents do not possess. It will be used for enhancement. Those who promote research on human embryonic gene editing should be honest and admit that it will have little use in the treatment of single gene disorders and that the real reason to develop it is to do enhancement, which they admit is morally problematic.

All we like SHEEFs, Part 2

Carrying on with last week’s musings…

In thinking further, I think my attempt was confused by conflating the moral status of a SHEEF—a synthetic human entity with embryo-like features, something more than a clump of cells of human origin, but less than a human being—with reasons why I might want to hold that nobody should ever make certain sorts of SHEEFs.

Again, SHEEFs are human, not non-human.  But they may not command a “right to life” in every instance.

I would return to a statement I made last week, that any totipotent human entity, that is, any human entity capable of developing into a full human being under the right circumstances, should be accorded a full human right to life from the moment he or she comes into existence.  We other humans ought to give him or her a chance to live, care for him or her as one of us, grant him or her any research protections extended to human research subjects in general, and so on.  So-called human “embryos in a dish” would be in this group.

The same cannot be said for individual human cells, including human gametes formed from cells like induced pluripotent stem cells.  There may be arguments why those ought not to be produced, but that is for another time.

I would not say that a laboratory-created or sustained human heart, for example, ought to be protected from instrumental uses, including destruction for the research enterprise.  I think I would want to argue that we humans ought not make such a thing as part of a human-non-human animal hybrid, but again, that’s a different argument.   Such a hybrid would not make human moral claims on us to be preserved and cared for as humans.

It seems to me that a moral boundary is approached when a human nervous system is brought into the plan.  Long-time readers of this blog may recall that I have written that I believe there is a human, immortal, non-material soul, and that I am most convinced by J.P. Moreland’s position that such a soul should be understood in a broadly “Thomistic” fashion, after Thomas Aquinas, and that such an understanding construes the soul to be the full set of ultimate human capacities, actualization of which can be, and often is, impaired.  Such impairment does not negate, diminish, or compromise the moral privilege of the human being.

That said, the clearest marker of the presence of a human soul is the human apparatus associated with feeling sensation, including pain, progressing ultimately to higher human capacities.  So it seems to me.

So, then, under my line of reasoning, a SHEEF with even a rudimentary human nervous system ought not be solely the subject of experimentation, ought not be created or destroyed solely for research, and would, if created, obligate its creators and caregivers to sustain it as humanely and completely, and for as long, as is reasonably feasible.  I confess that further definition of “rudimentary” in my formulation may still be needed.

Should such a thing be created?  I would say no, but that is a different question.

A “nervy” SHEEF, if you will, would carry its moral status immediately upon being brought into being, something that I think should weigh heavily, by necessity, on its would-be creators at the design phase.  Upon further reflection, we might even say that to draw up the design is to cross a moral boundary.  That is where I was trying to go last week, and I need to think about that further, but it again is a different question, as the comments on last week’s post pointed out.

Finally, what about a would-be SHEEF with human form and organs, but no brain or nervous system—a “headless human,” as it were?  By my reasoning, this would not have a moral claim to life or protection.  The notion of creating such a thing is creepy.  To consider it seriously is to raise, I think, a strong presumption of transgression: “Why on earth would this ever be done?”  To have to ask the question is almost to render a verdict, it seems.

To go further and ask what boundaries ought to be placed on biotechnologists would then seem to require raising the sort of concerns raised by cloning, for example—concerns about altering human procreation fundamentally, committing, as it were, “crimes against the human race.”  (Maybe I shouldn’t use quotation marks there.)

And what if, to go fully sci-fi about it, we were to imagine a full, or nearly full human created synthetically, a “Frankenstein in a lab,” as it were?  I hope everyone would object.  Grounds would seem to follow the line of reasoning C.S. Lewis took when fretting about “conditioners” in The Abolition of Man, or the thoughts of some contemporary ethicists on the European continent, who fret that pushing synthetic biology too far into humanity essentially violates the fundamental equality of human beings by making some the “objects” of technologists who are the “subjects.”

Further comments?

All we like SHEEFs (?)

So, how should we address the moral status of synthetic human entities with embryo-like features (“SHEEFs”)?

First, we should consider that these are human, as opposed to non-human, if they arise entirely from cells of human origin.  Human/non-human hybrid creatures are just that, and partially human, biologically.  But are any of these human beings, as in, in California the crime of murder is described as against a “human being?”  Or as in, a being that natural rights, most fundamentally a right to life?

Scientists make human/non-human hybrids now that clearly do not have the same moral status as a human being, e.g., immune-deficient mice whose immune systems are reconstituted with human blood cells (SCID-hu mice).  And, collections of human tissues that are far from a whole individual are still human, but not human beings.  That’s easy.

Ultimately, the question at the top of this post will be irredeemably tangled if one holds, as many if not most in the West today do, that human life with the right to life begins only sometime after the conception of a new human being; if a human being’s moral status, privilege, or rights vary depending on how much that being is able to exercise common human capacities, like choice or conscious self-reflection; if all moral questions turn on calculi of benefits and harms that must weigh individual human rights against the rights of groups of humans; if there is no natural moral law and all moral principles are fluid depending on the shifting consensus of a community.

If one holds, as I do, that human life begins at conception and that there are at least some foundational moral laws, and that a right to life is not dependent on varying realization of human capacities, then it seems that any human entity that is capable of developing into an entire human organism bears a full right to life from the first moment it comes into existence; i.e., conception, whether in the lab or arising from that process accessible even to educated fleas; or first existence of a totipotent cell, be it cloned, from an extended pluripotent stem cell, from in vitro gametogenesis with induced pluripotent stem cells, or from a future “manufacturing” process.   To name a few.  The right to life of such human beings is more dependent on their ultimate capacities than on the passage through 14 days of embryogenesis, or, for that matter, even on whether it might prove capable of skipping certain day 14 markers like the primitive streak.  In a sense, the “potential” or nascent human enjoys the right to life precisely because of what it (he or she?) is capable of becoming.  Maybe to say this is to extend Louis Pasteur’s comment that when he saw a child he was filled with “compassion for who [s]he is and respect for who [s]he will become.”

This implies that SHEEFs that are engineered to be very like regular embroys—“embryos in a dish”—deserve the same protections that pro-lifers defend for embryos made the old fashioned way, or by the more new-fashioned approach, IVF.  They should not be created or destroyed for research.  If they are created it should be with the intent of bringing them to term after a gestation (still, and one hopes, forever, in utero).  If that cannot be the intent and the extreme likelihood of a normal human being cannot be established, “embryos in a dish” should never be produced.

What about SHEEFs that combine features in novel ways, e.g., a human beating heart and a brain incapable of pain or sensation; or SHEEFs engineered to develop a nervous system without passing through a primitive streak?  My current thought is that insofar as the development of a human nervous system is “morally relevant,” something that likely would enjoy near-universal agreement, then the SHEEF acquires a right to life at the point of conception.  What is the point of conception?  The design on the drawing board, in the laboratory.  This would imply that such SHEEFs also should never be produced solely for research.  It also seems to imply a difficult, counterintuitive conclusion that if produced, any such SHEEF must be brought to “birth,” if possible.  But what would be the purpose of that except to create such SHEEFs solely for the purpose of some level of experimentation?  So SHEEFs like this also ought never be produced—and, I would argue, should not be drawn up.  The experiment should not be designed or pursued.

What about SHEEFs with recognizable human form and a beating heart but no brain?  Here, I would argue that by “conceiving” of such things one intends an entity that is a severely disabled human being.  Moral commitments would be similar to concerns raised by, for example, anencephalic babies.  They should be cared for.  If they are “created,” what is the purpose?  Solely for research or observation?  Why would we need to do this, in this way?  Just to show we can really do it?

What about human/non-human hybrid SHEEFs?  These, like pigs engineered with human hearts, may pose the most difficult cases.  Here, the issues raised by human/non-human hybrids in general seem germane.  I might suggest that prudence, guided by a concern for “where will it lead?” should pertain, rather than the instrumental question of “what benefits might I make of it?” and “how far shall I push the envelope?”  We should decline to participate rather than embrace pieties about how a regime of regulation will “prevent abuses,” when the fundamental premise of the work is to enable said abuses.

I end this post confessing, as I believe I have in the past, that these are musings of a part-time, less-than-eminent bioethicist, offered to provoke reflection.  I admit they are only partially developed, not fully argued, perhaps flawed.  In invite others to offer constructive criticism and rebuttal, and suggest refinements.  That’s what the comments section is for.

 

Six Million Dollar BCI Man

Elon Musk is a very busy billionaire technology entrepreneur. In addition to his previous projects Tesla Motors and SpaceX, he has found time to start a new venture called Neuralink with the goal to connect human brains to computers. Beginning with an initial goal to treat intractable brain disorders such as epilepsy or Parkinson’s disease, he would like to eventually move on to “cosmetic brain surgeries to enhance cognitive function”. The first major hurdle is the actual brain computer interface (BCI).

I was attracted to medicine in the 1970s as a result of watching the TV show “The Six Million Dollar Man” where a fictitious astronaut named Steve Austin is injured in a test flight, losing an eye, both legs and right arm, and military doctors are able to rebuild him in to a human cyborg with better-than-human limb strength and eye sight. We are approaching 2020 and are only just now at the early stages of BCI technology minimally necessary to achieve such a goal.

One such example is Bill Kochevar, a man who sustained a spinal cord injury 8 years ago resulting in quadriplegia. Scientists as Case Western Reserve recently implanted a device in his brain, which decodes his brain waves and sends electrical signals to stimulators in his right arm and hand, allowing him to move his arm and hand simply by “thinking”.

Working on the sensory pathways, scientists at the University of Pittsburgh have implanted a similar BCI in Nathan Copeland, who also sustained a spinal cord injury resulting in quadriplegia, though this BCI was connected in the sensory cortex and allowed Nathan to experience sensory input from a robotic hand touching objects.

Scientists at both universities stress that the technology is at the very early stages and we are nowhere near the practical application of a BCI that would permit a “Six Million Dollar Man”. But we do seem to be knocking on that door. If we can eventually implant a device in our brains that safely and reliably receives sensation to our brains from artificial sensors in a robotic hand or send signals from our brain to our own muscles (or a robotic arm), why stop there? There would be pressure to make the sensory input signals and motor output power “better than human”. I can imagine military applications where there might be pressure for able-bodied individuals to “volunteer” for the “cosmetic brain surgeries” that Elon Musk hopes to develop.

In fact, why bother with arms or legs at all? Once a safe BCI is available for the sensory and motor cortices (and perhaps later the visual and auditory cortices as well), we will be where Elon Musk hopes Neuralink will be in ten short years, not just restoring function but enhancing it.

I went into medicine to help people with quadriplegic injuries regain their lost function, and this technology is at the threshold of a significant breakthrough in that restoration. From a bioethics standpoint, I support it from a restoration standpoint. It is the enhancement aspect that worries me. Do we need an enhanced “Six Million Dollar BCI Man”?