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.

The Abuse of DNA Technology

By Neil Skjoldal

In a provocative article entitled, “China Uses DNA to Track its People, With the Help of American Expertise,” The New York Times tells the story of how the Chinese government is using DNA information in part to make the Uyghurs, “a predominantly Muslim ethnic group, more subservient to the Communist Party.”

To accomplish this task, The Times states that the Chinese government used technology made by Thermo Fisher and “genetic material from people around the world” provided by Dr. Kenneth Kidd, a Yale University geneticist.  Apparently, the assumption was that the Chinese would follow the ethical norms followed around the world.  Ethicist Dr. Arthur Caplan is quoted in the piece:  “Honestly, there’s been a kind of naiveté on the part of American scientists presuming that other people will follow the same rules and standards wherever they come from.”  Recently, under heightened scrutiny, Thermo Fisher stopped its sales of genetic sequencing equipment in Xinjiang.

The abuse of technology for autocratic purposes was strongly condemned by Senator Marco Rubio of Florida:     “The use of this technology allows the Chinese government to commit truly  egregious invasions of privacy and other human rights abuses, including the internment of over a million ethnic Uyghurs and other Muslim minorities. The sale of DNA sequencers to agents of Chinese state security should never have been approved in the first place and I believe the Commerce Department needs to establish clearer licensing requirements on technology and other items used by the Chinese government to censor, detain, and surveil.”

The ability to do DNA research is an incredible scientific and technological achievement.  But this case raises a question that must be answered, specifically, What is the ethical responsibility of the corporate world with regard to the abuse of the technology?  If they naively continue to follow these practices in similar cases, we must ask who will defend the voiceless against governments that want to make them “more compliant.”

The new WHO advisory panel on human gene editing

By Jon Holmlund

The World Health Organization (WHO) has empaneled an expert advisory committee to propose standards for governance and oversight of human gene editing.

This group is to meet in Geneva on March 18 and 19 to review the state of the field, broadly, and formulate a plan for its work, over the ensuing 12-18 months.  Sounds like your basic organizational meeting. 

The WHO website does not specify a more detailed charge for the committee, which no doubt will determine its goals.  It is said to have been formed “after an open call for members,” implying, I suppose, that the members volunteered, as opposed to being invited or otherwise prevailed upon.

The co-chairs are Edwin Cameron, former Justice of South Africa’s Constitutional Court, and Margaret Hamburg, who, among her other positions, was FDA Commissioner under Barack Obama.

A review of the full list of biographical sketches for the members shows that they are a truly international group, representing nations from the developed and developing world, and from all continents (except Antarctica, of course).  They are a mix of physicians, biologists, and ethicists.  None appears immediately recognizable from the recent media coverage of human gene editing.  If there are members with a specific interest in promoting technology, that is not obvious from the list, which WHO further says was limited to people screened carefully for conflicts of interest.

One can tell but little from such bio sketches, but in this case it at least appears that a broad range of cultural perspectives will be represented.

There is no clear representation for a theistic or religious perspective.  Also, because the work of such a group naturally draws and involves scientific specialists, the broader, non-scientific, “lay” public is not represented.

Past work by these members addressing gene editing will be of interest to review, which your present correspondent has not, yet.

One hopes that this group will offer wise counsel that, as discussed in prior posts to this blog and elsewhere, goes beyond the usual, limited “benefit-risk” estimates that characterize Western bioethics.

But it will unavoidably not constitute the broad, cosmopolitan, multinational and multiethnic, naturalistic and theistic dialogue that is hoped for—probably too much to hope for, too much to ask of a group of 18 people—in advance of broad adoption of heritable human gene editing, which appears inexorable.

Godspeed and best of success to this group—follow its work as closely as possible. ity51 \lsdl

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.

The expansion of euthanasia in the Netherlands

Dr. Steve Phillips

Ever since advocates for euthanasia began making arguments that euthanasia was morally permissible and should be legal, their arguments have begun by picturing a person who is near death from a disease that is causing severe pain. Then they argue that out of respect for the autonomy of and compassion for that person we should conclude that it is permissible for her or him to request and receive euthanasia as a means of ending suffering. Those who take the opposing position frequently counter with arguments about the value of human life in the midst of suffering, the importance of never saying that a human life is not worth living, and an understanding that compassion means coming alongside a person to help them live the life that they have the best that they can rather than destroying that life.

In addition to those arguments related to ethical principles, some raise concerns about what will happen if we make the decision that euthanasia is permissible and should be legal. One of those concerns is that euthanasia will spread to a much wider range of situations if it is accepted in an initially limited way. When we examine the arguments favoring the permissibility of euthanasia, the argument from respect for autonomy is actually arguing for euthanasia in any situation in which a person would choose to request it. The argument from compassion actually argues for euthanasia even in situations in which the person is not able to request it. Can euthanasia remain limited or will acceptance lead to much broader use?

Frequently people look to the Netherlands because of its long history with euthanasia to answer that question. A recent detailed report on the Netherlands’ experience with euthanasia by Christopher de Bellaigue in The Guardian adds some insight to this question. He looks at how the situations addressed by euthanasia in the Netherlands have expanded. He focuses on cases in which the person is not in the process of dying and cases in which an advance decision results in euthanasia of a person who is not requesting it at the time it is done. These have been areas of concern that have caused some who supported euthanasia in the past in the Netherlands to have second thoughts.

Bellaigue reports that the indications for euthanasia have expanded to include those with psychiatric illness who have no life-threatening condition and the elderly who are not dying but have become tired of living. He shares the story of a physician who once performed euthanasia but has stopped because patients were expecting him to provide euthanasia in situations in which he saw no need for it. They simply wanted him to do it because they requested it. He also reports on the problems that have arisen when a person with progressive dementia makes an advance directive requesting euthanasia when a certain level of intellectual and functional decline has occurred. The problem is that many times when the conditions stipulated to trigger the use of euthanasia occur the person who has requested it in the past no longer has a desire for euthanasia and may actively resist it, but no longer has the capacity to refuse it.

The experience in the Netherlands makes it clear that moral and legal acceptance of limited euthanasia leads to expansion of the indications for euthanasia beyond those who are terminally ill and beyond voluntary to at least nonvoluntary euthanasia.

Human organ harvest

By Jon Holmlund

The ethical practice of human organ transplantation entails consent from a donor to donate an organ while still living (e.g., one of the donor’s two kidneys), or after dying (e.g., the heart).  In the latter case, it is still generally accepted that the donor must be dead first, and that the harvesting of the vital organ to be transplanted not be the cause of the donor’s death.  This is referred to as the “dead donor rule,” the interpretation of which is open to some controversy (about which more in a future post).  But it is still generally followed.

Periodically, one reads of suggestions or practice that violates this.  In 2006, the bioethics observer Wesley Smith posted comments about proposals in the medical ethics literature to the effect that some had said that patients permanently comatose but not dead, in what is known as a “permanent vegetative state” (PVS), could ethically not only have their organs harvested for transplant, but be human subjects for experimentation involving the transplant of animal organs into them, to try to learn how to improve that practice, called “xenotransplantation.”  Presumably, these “donors” would have previously “consented” to have their organs harvested—essentially, to be killed—if they became persistently comatose.  The validity of such “consent” is of course questionable, and the prospect of the practice should be seen as abominable.  An argument in favor seems to rely on the notion that it’s too risky to transplant animal organs into humans who have full brain function and seem to be more clearly alive than PVS patients (suggesting they be seen as dead), or that there is some envisioned state where a PVS patient could potentially benefit from the animal organ and give consent in advance.  The former is disturbing, and the latter implausible.  A link to one proposal that appears to be in favor is here, and to arguments raising concerns, here and here.

(More to follow in a future post on comments about xenotransplantation from the recent Hastings Center conference on the 50th anniversary of the development of brain death criteria.)

More recently (again with the blogger’s “HT” to Smith), not only is organ harvesting after euthanasia apparently performed, on occasion, in countries that permit euthanasia, but a transplantation medical journal has carried an article arguing for “organ donation euthanasia,” wherein someone who had previously requested euthanasia could also “request” organ donation while still alive—essentially, authorizing the removal of the heart as the means of active euthanasia.  Now, what is first in view is harvesting a kidney, which would not cause death, but if someone is in a state where euthanasia is perceived as a preferred option, why would someone want to undergo invasive surgery first? 

If euthanasia is accepted, then this troubling stance on organ donation will be difficult to resist.

At least the above pay lip service to “advance, informed consent.”  This week, an article in the Wall Street Journal calls attention to the covert but well-attested practice in China to accommodate demand for organ transplantation without the encumbrance of a waiting list, by harvesting organs from prisoners of conscience, such as political dissidents, who are given a mortal but not immediately fatal wound, then have their organs removed before they are dead—satisfying the “need” for a donated organ while finishing the prisoner off.  Because of this practice, several countries have prohibited their citizens to travel to China for “transplant tourism,” just going there to get their transplant.  What the Chinese seem clearly to be doing should not be supported, by anyone.

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.

Gene-editing public discussions: looking ahead

By Jon Holmlund

Passing along word that the National Academies of Medicine and Science are planning an international commission on human gene editing, the editorial board of the New York Times has issued a welcome call to make the public discussion of the issues as broad as possible.  Read the whole thing, but this key graph is particularly important (emphases mine):

“As gene-editing technology advances toward the clinic, scientists will need to do more than listen to the concerns of bioethicists, legal scholars and social scientists. They will have to let these other voices help set priorities — decide what questions and issues need to be resolved — before theory becomes practice. That may mean allowing questions over societal risks and benefits to trump ones about scientific feasibility.”

See the 29 March 2018 post on this blog regarding two calls—the Times linked to one, and quoted from the author of the other—for broader discourse.  This discourse is urgently needed, but must go beyond risk-benefit discussions to the broader meaning of, and issues raised by, heritable human gene editing in particular.  (Somatic human gene editing, to treat a known disease in an existing individual in a way that cannot be passed on to the next generation, is less troublesome ethically, except insofar as it enables the heritable version of gene editing.)

The challenges to effective public deliberation of heritable human gene editing are formidable: getting truly wide participation; getting the scientists to inform and educate non-scientists without trying to lead them to a set of preferred conclusions; engaging the developing, as well as the developed, world; obtaining “religious input” that is more than token; and sustaining the conversation as long as necessary to hold attention in our short-attention world.

It seems that to execute on that will take a pretty large group of dedicated people engaged in a focused, full-time effort to make it happen.  Existing science and ethics groups, like the National Academies, may be the default nominees, but it also seems like a broader group of facilitating entities is needed.  The “global observatory” mentioned by the Times editorial would, as proposed, be established by an “international network of scholars and organizations…dedicated to gathering information from dispersed sources, bringing to the fore perspectives that are often overlooked, and promoting exchange across disciplinary and cultural divides.”

Hear, hear.  One hopes that this happens—and that individuals can find a way to help make it happen.  Spread the word—people should be encouraged to set aside time, energy, and mental space to consider this revolution for the human race.