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!

Abortion and viability

By Steve Phillips

There has been considerable reaction to the recent passage of a New York State law a regarding abortion. It has been celebrated by those who support a woman’s choice to have an abortion at any time and for any reason and strongly opposed by those who believe that a human fetus has a life that should be greatly valued because he or she has been created in the image of God. The new law basically changes two things in the previous New York State abortion law which led the way in the legalization of abortion prior to Roe v. Wade. One is that it expanded those who can legally perform and abortion in the state to include nurse practitioners, physician assistants, and midwives in addition to physicians. I will not be discussing that here. The other changes have to do with the circumstances under which an abortion may legally be done after 24 weeks gestation.

The 1970 law stated that an abortion could be done legally for any reason prior to 24 weeks, but only to protect the life of the mother after 24 weeks. Why 24 weeks? 24 weeks gestation was considered to be the limit of viability for a fetus in 1970. Today it would probably be more like 22 weeks, but they didn’t change that. What has changed in the new law is that abortion is considered legal after 24 weeks if there is an absence of fetal viability after 24 weeks or to protect the life or health of the mother. This significantly expands the cases in which abortion after 24 weeks can be considered legal. Roe v. Wade already expanded it in the second way. In that decision the Supreme Court ruled that the state could have an interest in the life of the fetus later in the pregnancy that it did not have early in the pregnancy but limited that interest by saying that a state could not say that an abortion was legal if it was done to protect the life or health of the mother. A companion decision made at the same time stated that the health of the mother should be interpreted very broadly to include the emotional well-being of the mother. That left us with the current situation in which the United States has the broadest definition of a legal abortion in the world.

The thing that I find most interesting about the new law is that it keeps the distinction between abortions done before and after 24 weeks and that it adds the condition that an abortion after 24 weeks can be legal in the absence of fetal viability. If the law is going to say that an abortion can be legal at any time during the pregnancy based on the mother suffering emotional distress, why would those making the law be concerned about fetal viability? I think that what is being said by those who have written and passed this law is that until a fetus is capable of living independently of his or her mother the life of that fetus has absolutely no value other than the value conferred by his or her mother. They want that to be contained in the law even if it actually makes no practical difference regarding the legality of abortion. Why is that so important?

I think it is important because the fundamental underlying issue regarding the permissibility of abortion has to do with how we determine who is a person who we are obligated to treat as we would want to be treated ourselves. It is essential for those who support the moral permissibility of abortion and therefore its legality to say that a fetus is not such a person. The best way to do that is to say that an individual is only a person with full moral status when that individual has certain capabilities that are like ours. One of those capabilities which can be fairly clearly defined is viability. If people can be convinced that they should look at capabilities such as viability to determine who we are obligated to treat like ourselves it will distract them from the alternative way of determining that. The alternative is to say that every human being, or every member of the human family, no matter what their level of development or capabilities is a person that we should treat as we would want to be treated ourselves. That means that every human being who is weak, helpless, and marginalized has equal value with the strongest and most privileged of human beings. That is the position of those of us who believe that every human being is important because we have been made in the image of God. That includes everyone who is dependent including those who are dependent to the point of being unable to survive outside their mother’s womb.

Justice Potter Stewart’s Infanticide Equivalent

By Mark McQuain

Regular readers of this blog will hopefully forgive me for repeating myself but given the recent failure of the “Born Alive Abortion Survivors Protection Act” (BAASPA) in the Senate, the repetition seems warranted.

My concern is not specifically the result of the failure of this particular bill. We indeed already have a “Born-Alive Infants Protection Act of 2002” (BAIPA), which passed by voice vote in the House and Unanimous Consent in the Senate, and accomplishes (as best as I can tell) essentially everything demanded in the BAASPA, including granting 14th Amendment personhood protection of such a baby under federal law. The arguable difference between the existing law, BAIPA, and the failed bill, BAASPA, is that the latter specified legal punishment if certain resuscitative measures were not performed.

Supporters of BAASPA argued that, despite BAIPA, examples continue to exist of babies who are otherwise normal and healthy at their stage of gestation that were born alive post abortion attempt and were subsequently allowed to die without attempts at resuscitation, effectively resulting in infanticide. Pro-choice advocates argued against the passage of BAASPA claiming the legal punishments within the bill would ultimately limit abortion providers from providing the full range of abortion services permitted under current law out of fear of legal recrimination. For the purpose of this particular blog entry, I will concede that both concerns are valid and simply state, given my pro-life position, that the moral weight of the first position infinitely outweighs the second. I want to focus the remainder of this blog on two public comments by prominent lawmakers regarding the status of any baby born post abortion.

The first comment was by Virginia Governor Ralph Northam and covered in my previously linked blog entry above. During a radio interview he described what would happen during a third trimester abortion if the woman went into labor: “The infant would be resuscitated if that’s what the mother and the family desired, and then a discussion would ensue between the physicians and mother…” The second comment was by U.S. Senate Minority Leader Chuck Schumer. He expressed concern that the BAASPA legislation would force doctors to provide care to a baby born alive post abortion attempt even if that care was “ineffective, contradictory to medical evidence, and against the families’ wishes.”

In both cases, what the family “desired” or “wished” prior to the abortion procedure was not a living baby. Current law permits a family with a “desire” or “wish” to terminate the life of a fetus to do so without any legal recrimination. Current BAIPA law grants all babies born alive the 14th Amendment protection of personhood, including life, liberty and the pursuit of happiness, regardless of the “desires’ or “wishes” of others. I believe it is a huge stretch to argue that these comments were meant to only apply to babies born so medically compromised that any attempt at further life-sustaining care would indeed be ineffective and/or contradictory to medical evidence – in short, futile.

I close again with Justice Potter Stewart’s infanticide equivalent from 1972 Roe v. Wade oral argument testimony between Justice Potter Stewart and attorney Sarah Weddington, who represented Roe (see LINK for transcript or audio of the second reargument Oct 11, 1972, approximately one-third of the way through):

Potter Stewart: Well, if it were established that an unborn fetus is a person within the protection of the Fourteenth Amendment, you would have almost an impossible case here, would you not?

Sarah R. Weddington: I would have a very difficult case. [Laughter]

Potter Stewart: You certainly would because you’d have the same kind of thing you’d have to say that this would be the equivalent to after the child was born.

Sarah R. Weddington That’s right.

Potter Stewart: If the mother thought that it bothered her health having the child around, she could have it killed. Isn’t that correct?

Sarah R. Weddington: That’s correct.

Informed Consent and Genetic Germline Engineering

By Mark McQuain

I recently read, with admittedly initial amusement, an article from The Daily Mail that described a young man of Indian decent who was intending to sue his parents for giving birth to him “without his consent.” Raphael Samuel, a 27 year-old who is originally from Mumbai, is part of a growing movement of “anti-natalists”, who claim it “is wrong to put an unwilling child through the ‘rigmarole’ of life for the pleasure of its parents.” While he claims he loves his parents and says they have a “great relationship”, he is bothered by the injustice of putting another person through the struggles of life “when they didn’t ask to exist.”

While I was amused at the absurdity of asking a non-existent entity for permission to do anything, I began to wonder whether my position against germline genetic engineering should continue to include the lack of informed consent by the progeny of the individuals whose germline we are editing.

I have made the claim on this blog previously that one of my arguments against germline genetic engineering is that it fails to obtain the permission of the future individuals directly affected by the genetic engineering. Ethical human experimentation always requires obtaining permission (informed consent) of the subject prior to the experiment. This goes beyond any legal issue as many would consider Autonomy the most important principle of Beauchamp and Childress’s “Principles of Biomedical Ethics”. Informed consent is obviously not possible for germline genetic engineering as the future subjects of the current experiment are presently non-existent at the time of the experiment. While I believe there are many other valid reasons not to experiment on the human genetic germline, should the lack of informed consent continue to be one of them?

In short, if I am amused at the absurdity of Mr. Samuel’s demand that parents first obtain their children’s permission to be conceived prior to their conception, is it not equally absurd to use the lack of informed consent by the progeny of individuals whose germline we are editing as an additional reason to argue against genetic germline engineering?

Summarizing ethical issues with heritable human gene editing

By Jon Holmlund

A brief recap of reasons why we should not pursue heritable human gene editing:

It seems unlikely that risks to immediately-treated generations can be predicted with the accuracy we currently and reasonably expect from human subject research and medical practice.

Risks to later generations, that is, to the descendants of edited people, would be incalculable, and the informed consent of those later generations would be unobtainable.

To allow heritable gene editing even in the uncommon cases of untreatable, devastating genetic illness is to place too much faith in the ability of human providence to identify, and human behavior to observe, firm boundaries on its eventual use. 

Eventual use will become unavoidably subject to a eugenic approach in which the key decision will be what sort of people do we want, what sort of people should be allowed to receive life.

There will be no end to the disagreement over what edits should be permitted, and to the vilification of those considered to have been illegitimately edited, from those who object to their existence, perceived unfair advantage, or other characteristic.

Human populations will become stratified into the “edited” and the natural, introducing deep new justice concerns.  The main issue will be not will humans be gene-edited, but what should be the social status of those who are. 

To reduce heritable human gene editing to a reliable practice requires submitting it to the paradigm of manufacturing, as in drug development, with children seen as quality-controlled products of choice, not gifts of procreation.   To develop the practice, a “translational model,” again analogous to drug development, is necessary, with human embryos serving as raw materials, and, of necessity, a large, indeterminate number created and destroyed solely for development purposes, for the benefit of other humans yet to be born, and of those who would raise them.

Quite possibly, the translational model will demand great license on the extent to which embryos and fetuses may be experimented on; to wit, longer and longer gestations, followed by abortion of later and later stage, to further verify the success of the editing process.

In the extreme situation, the degree of editing may change the human organism in ways that will create a “successor” species to homo sapiens whose nature and desirability cannot be reasonably envisioned at this time.  In the extreme situation.

Even granting that this last scenario may never really arrive in ways that fiction writers can easily imagine, the other reasons should be enough that we simply don’t move heritable gene editing forward.

National Public Radio recently reported on the gene editing of human embryos—one day old—in the laboratory, in an attempt to correct and eliminate the inherited cause of blindness, retinitis pigmentosa.  The end is laudable.  The means is not.  We should not race ahead without considering why, first.  Then, we should not move ahead, but seek alternate means to the medical ends.

Edited embryos should not be created and brought to term—certainly not now, and I would say, not ever.  To be outraged over the former but not the laboratory creation of edited embryos is insufficient.  Both are outrages, although outrage over the recently-claimed birthing of edited babies in China is real, not “faux,” as one reaction held.  Still, the authors of that reaction are correct that one’s condemnation of the China event somehow justifies the laboratory work.  It does not. One last point: The Economist carried an essay decrying the birth of the edited twins in China as a case of “ethical dumping,” the practice of carrying out human subject research that would be disallowed in the West in other, perhaps less advanced (although China is certainly not backward), nations with fewer ethical scruples.  A valid point—but not one to cloak oneself in, while trying to justify the efforts to edit humans in ways that can be passed on from generation to generation.

Abortion, at any time, for any reason?

By Mark McQuain

Last week, Virginia delegate Kathy Tran introduced a bill to eliminate some current restrictions on late term abortions in the Commonwealth. During the committee hearing on the bill, she answered a question by one of the other committee members to the effect that her bill would permit a third trimester abortion up to and including the point of birth. That exchange may be heard here. She later “walked back” that particular comment as outlined here. Virginia Governor Ralph Northam, who is a pediatric neurologist by training, added his comments to the discussion on a call-in WTOP radio show, where he implied that the bill would additionally permit parent(s) and physician(s) to terminate the life of a “severely deformed”, “non-viable” infant after the birth of the infant, which may be heard here (the entire 50+ minute WTPO interview may be heard here). That particular bill is currently tabled (the actual bill may be read here).

These events deserve far more reflection and discussion than can be afforded in the small space of this blog. I want to discuss two comments by Governor Northam and then comment on expanding abortion to include the extreme limit of birth.

First, during his radio interview, the Governor added qualifiers to the status of the infant that are not only not in the bill submitted by Delegate Tran, they are specifically contrary to it. Section 18.2-74(c) of the Code of Virginia is amended by Tran’s House Bill No. 2491 to read ([w]hen abortion or termination of pregnancy lawful after second trimester of pregnancy):

“Measures for life support for the product of such abortion or miscarriage must shall be available and utilized if there is any clearly visible evidence of viability. “(markup/emphasis in the bill)

To be generous to the Governor, it is unclear why he qualified his comments the way he did, given that the bill is explicitly discussing a potentially viable infant. Options include that the Governor was simply ignorant of the specifics of Tran’s Bill (possibly), was actually purposefully advocating for infanticide (unlikely), or wanted to defend the loosening of restrictions on very late term abortions, clearly intended by her bill, by introducing at least one conditional situation that a number of people might initially consider reasonable (most likely). The firestorm caused by his so-called “post-birth-abortion” comment completely obscured any attention to the equally tragic portion of Tran’s Bill that eliminates a huge portion of the Code of Virginia section 18.2-76, which currently requires a much more specific informed consent process, inclusive of a pre-abortion fetal ultrasound to attempt to educate the woman on the nature of the human being she is desiring to abort.

The second comment by Governor Northam was made parenthetically while expressing his opinion that the abortion decision should be kept between a physician and the pregnant woman, and out of the hands of the legislature, “who are mostly men”. Does this imply all men be excluded from the abortion discussion or just male legislators? Should male obstetricians likewise be excluded from this discussion? Following the Governor’s comment to its logical conclusion, shouldn’t he refrain from similar comments/opinions regarding abortion since he is also a man? This is absurd. Representative government specifically, and civil discourse more generally, is not possible if ideas cannot be debated unless the particular people involved in the debate are all the same sex, same race, same ethnicity, same height, same weight, same age, etc…

Aborting a healthy, viable baby just prior to, or, at the very moment of, birth seems to me to be the least likely example of the type of abortion that anyone on the pro-choice side of the abortion debate would use to make the case that abortion is a good and necessary right. Presently, immediately after birth, the baby (finally) has the protection as a person under the Fourteenth Amendment. Eerily, as I have shared in this blog before, almost identical concepts were discussed during the 1972 oral arguments of Roe v. Wade, such as the following exchange between Justice Potter Stewart and attorney Sarah Weddington, who represented Roe. (see LINK for transcript or audio of the second reargument Oct 11, 1972, approximately one-third of the way through):

Potter Stewart: Well, if it were established that an unborn fetus is a person within the protection of the Fourteenth Amendment, you would have almost an impossible case here, would you not?

Sarah R. Weddington: I would have a very difficult case. [Laughter]

Potter Stewart: You certainly would because you’d have the same kind of thing you’d have to say that this would be the equivalent to after the child was born.

Sarah R. Weddington That’s right.

Potter Stewart: If the mother thought that it bothered her health having the child around, she could have it killed. Isn’t that correct?

Sarah R. Weddington: That’s correct.

I am one blogger who is praying that Governor Northam’s “post-birth-abortion” misunderstanding of Delegate Kathy Tran’s Bill liberalizing abortions through the end of the third trimester never causes Justice Potter’s 1972 infanticide equivalent to become a reality.

Gender & Pain

By Neil Skjoldal

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

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

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

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

Self-Awareness, Personhood and Death

By Mark McQuain

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

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

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

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

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

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

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

Cyborg Society

By Mark McQuain

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

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

Steven Mann

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

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

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

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

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

#HappyNewYear

“The Babies are the Experiment”

By Jon Holmlund

 

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

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

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

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

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

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

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

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

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