Dear Colorado: No on 106

The next battle in the war on physician-assisted suicide is up in Colorado on Election Day, next Tuesday.  Voters there will vote on Proposition 106, the Colorado “End of Life Options Act,” which would provide access to medical aid in dying medication.  The link takes one to the text of the proposed law, including revisions; apparently it was previously referred to as “Initiative 145.”  It appears to be modeled after current laws in Oregon and California.

I hope and pray that Coloradans will vote “No” on this.  As outlined previously on this blog, I believe there are 5 main arguments against doctor/nurse/medical professional-assisted suicide:

·       It destroys the soul of medicine by making the one covenantally pledged to healing into a killer who takes deliberate action to cause death;

·       It diverts energy from emphasizing and improving excellent, compassionate palliative care that cherishes the dignity of a suffering individual without killing;

·       If construed as a “right to choose to die,” it creates a corresponding duty to help kill, and recent developments have shown frank hostility to the notion that a medical professional should be permitted to avoid that “duty” on grounds of conscience;

·       The “slippery slope” argument—that it will not be limited to the terminally ill, nor to those who freely request death, and may in fact be pushed on dying people for financial reasons;

·       The notion of a “right to die” is ultimately incoherent.

If you are reading this and are voting in Colorado, please vote “no,” and encourage others to do likewise.  If you are not a Colorado voter but know one, please contact that voter to urge a “no” vote.

Another Ethical Slippery Slope for A.R.T.?

Medical business opportunities usually seem to make for interesting ethical discussions these days. Forbes recently published an article showcasing Prelude Fertility, an assisted reproduction technology (ART) start-up seeking to combine all the technologies of egg harvesting, cryopreservation and IVF under one umbrella for the purpose of controlling one’s biological clock. Aside from the business issues, the article does a fair job of discussing the medical risks and even some of the ethical concerns. I would like to focus on some of the ethical concerns.

The ethical concerns of standard embryo cryopreservation and IVF fall under two main areas. The first is that IVF often does not use all the embryos created by the process. The frozen embryos not used are human beings not commodities and should not be discarded (i.e. killed) or stored indefinitely (see Steve Phillip’s previous blog entry). The second issue is that although cryopreservation of embryos and IVF have now produced individuals who are beginning their third decade of life, we still do not know for certain what are the long-term health effects of this process (e.g. intelligence, aging, germline, etc.)

Prelude is focusing on an emerging technique of oocyte cryopreservation, which, if successful, will sidestep the first ethical concern – no embryos will be frozen, just the precursor eggs and sperm. Oocytes are very fragile and previous techniques used to cryopreserve them caused their destruction. The newer vitrification process of flash-freezing has significantly improved the preservation success for oocytes. The success rate has sufficiently improved such that the American Society for Reproductive Medicine (ASRM) removed their experimental label from the vitrification procedure. Still ASRM warned: “Marketing this technology for the purpose of deferring childbearing may give women false hope and encourage women to delay childbearing.” They further warn:” There are not yet sufficient data to recommend oocyte cryopreservation for the sole purpose of circumventing reproductive aging”

This is exactly what Prelude is doing. One of the marketing points is that this process allows women to delay pregnancy to when it is more convenient for their career advancement. The long-term health concerns listed above for embryo cryopreservation are equally valid for oocyte cryopreservation – we simply do not yet know all the long-term human health consequences.

The CEO of Prelude, Martin Varsavsky, is putting his entrepreneurial money where is his mouth is, so to speak. He and his wife are expecting the first Prelude baby this January.

Marketing bravado aside, is career or lifestyle convenience really a good reason to go where ART has not ethically gone before?*

*apologies to Gene Roddenberry

A Canadian physician’s defense of rights of conscience

A friend who teaches at the University of Toronto recently made me aware of what Ewan Goligher has written about rights of conscience in the context of the legalization of physician assisted death in Canada and the push by many there to require physicians provide effective referral for physician assisted death. Dr. Goligher is an academic physician who specializes in internal medicine and intensive care medicine in Toronto. He has expressed quite well the reasons why he is unable in good conscience to participate in or make referrals for physician assisted death in a letter to members of the Canadian Parliament and in an article in the National Post which I would recommend that you read.

Among the points that Dr. Goligher makes two strike me as being most significant. One is that a physician should only do those things that are both legal and morally right. Being legal is not sufficient reason to believe that something that a patient requests is the right thing to do. Physicians owe a duty to their patients not to do something that the patient requests if what is requested would be harmful to the patient. We should respect patients’ ability to make decisions about their own lives and should not force patients to do something they do not want to do, be we should not cause harm to patients even if they request it. Our duty is to the good of the people we treat and not just a duty to do what they request.

The second is his explanation for why making an effective referral for physician assisted death is wrong in the same way that prescribing the means of death is wrong. He makes his point by making an analogy to making a referral for female genital mutilation. Like all analogies it cannot be taken too far since physician assisted death under the Canadian law is presumed to be based on the free decision of the one making the request to die and genital mutilation is being requested by someone who has surrogate decision making authority for the one being acted upon, but the analogy holds well in showing that in such a case making a referral can easily be seen as being wrong in the same way as doing the act.

My thanks goes to Dr Goligher for his well-written expression of why physicians should have the freedom to refuse to participate in or refer for procedures they understand to be immoral. If you are reading this and happen to be in the Toronto area, Dr. Goligher will be speaking on this issue in a talk at Wycliffe College on October 27 at 7 PM sponsored by the deVeber Institute for Bioethics and Social Research.

More on Gene Editing

One version of the headline of a news item in Nature this week is, “UK bioethicists eye designer babies and CRISPR cows.” The UK’s Nuffield Council on Bioethics has just released a report, “Genome editing: an ethical review.”  The full report and a short summary are available for download here.

I must say that my understanding of recent bioethical reflection in the UK leads me to believe that the Nuffield Council’s position will, eventually, tend toward “let’s press ahead with any use of this as long as we can convince ourselves that the benefits are worth pursuing.”  The approach will likely be a focus on near-term benefit-risk assessments that sideline larger ethical concerns about the implications of certain applications—e.g., edits of human genes that can be passed on from generation to generation—that seem abstract or “religiously motivated” (my term here, not theirs).

But I have not been through the full report.  The short form does provide a quick listing of many salient ethical concerns, such as:

  • ·       Relative ethical merits of editing genes to treat a specific disease in an existing individual vs more momentous steps like editing human embryos (along with the resultant issues of the inherent ethics of the necessary experiments, and a potential “demand” for embryos for research), or future attempts at genetic enhancement of humans;
  • ·       Ecologic risks of using “gene drives” to alter pest populations in the wild, or even using genetic editing in an attempt to re-introduce extinct species;
  • ·       Potential for creative recklessness by amateurs or creative malevolence for military use;
  • ·       The potential for using gene editing to make plants or animals for food hardier, e.g., by making pigs or cows disease-resistant.

The Council says some of the above would be of concern to at least “some people.”  The short report says that the Council concludes, “When we think about how genome editing should be used, it is important to also think about how it should be governed. Given the public interest in the use of genome editing, an approach will need to be found that acknowledges that people arrive at these questions with different values, priorities and expectations. “

Of the many issues, the Council counsels addressing two urgently:

1.       Livestock—research into gene editing of animals for food is relatively well advanced, but the regulatory regime needs to catch up, to address issues of economics, international trade, and food security.  Concerns also include animal welfare and how to label “edited” meat at the supermarket.  This is worth further, more detailed discussion, perhaps on future posts, but somehow I sense a bit more than a post-Brexit fight between the UK and the Continent over GMO foods is in view here.

 

2.       Human reproduction— One member of the Council’s Working Group said, “Human reproductive applications are perhaps the most talked about or controversial area.”  (Gee, ya think?)  From the short report:  “Of all the potential applications of genome editing that have been discussed, the one that has consistently generated most controversy is the genetic alteration of human embryos in vitro. Research undoubtedly has a very long way to go before any application of this sort could be contemplated [but never mind that it has already been at least attempted in “non-viable” human embryos] and, in the UK at least, the transfer of an edited embryo to a woman is currently prohibited by law. Nevertheless, such applications are theoretically possible and there are strong moral arguments for them, at least for limited purposes, as well as against. The principal challenges are the very difficult questions of what would be required to demonstrate safety and efficacy, and of resolving the ethical arguments for and against attempting it. It is therefore appropriate to consider carefully how to respond to this possibility before it becomes a practical choice. Addressing these difficult questions now will help to meet concerns that technology is rushing ahead of public debate and allow such debate to influence the development of the technology, distinguish acceptable from unacceptable aims, and reduce the uncertainty and ambiguity for researchers and potential recipients of the technology.”

I agree with the urgency, but the Council’s statement sounds to me a bit too sanguine, too “proactive” or “progressive,” too favorable to the prospect of altering individual human genomes fundamentally.  As I have said previously on this blog, I believe that editing of human embryos or germ cells should simply not be done, at least for now, and probably not ever.  Ethical discussions should not be informed by a “proactive” stance, but rather by a “presumption to forbear.”  And I suspect, that like “three parent babies” (see Mark McQuain’s September 29 post), and like IVF, we will be presented with a fait accompli from somewhere before the ethical arguments are “resolved.”

 

Does Mitochondrial Transfer Really Save Lives?

This blog has discussed Mitochondrial Transfer, also referred to as Mitochondrial Replacement Techniques (MRTs), several times in the past (HERE and HERE to link a few.). The reason for further comment is that Dr. John Zhang, a New York-based fertility specialist admitted that he assisted in the successful fertilization and healthy delivery of a now 5 month old baby boy using the technique of Mitochondrial Transfer called Spindle Nuclear Transfer. The parents were from Jordan and the procedure was performed in Mexico, “where rules don’t exist [that legally prevent performance of the procedure].” Both Dr. Zhang and Sean Murray, an executive of the Australian Mitochondrial Disease Foundation have ethically justified the decision to perform the procedure in Mexico (to get around bans in other countries such as the US) with the claim that the procedure saves lives (Zhang: “To save lives is the ethical thing to do” and Murray: “This is about saving lives and offering hope to a community.”)

Saving lives is certainly a laudable endeavor. But does the technique really save lives?

The goal of the technique is to remove the diseased maternal mitochondria and replace the mitochondria with healthy donor mitochondria. In this particular case, five donated eggs from an otherwise healthy woman had the cell bodies removed and replaced with the nuclei of eggs from the mother, and these altered eggs were subsequently fertilized by with the father’s sperm. It is unclear whether all of these fertilized eggs were all used in the implantation or if some were destroyed by failure of the technique or purposefully destroyed after genetic testing showed mitochondrial abnormalities. Obviously one egg successfully survived the process to become the (presumably) healthy baby boy. But what about the other four?

More generally, whose life was being saved by the technique? The technique does not cure an individual who already has the disease. It prevents such an individual from being conceived in the first place, creating and selecting another individual conceived in a manner that does not have the diseased mitochondria.

So, it is likely that individuals are destroyed in the process of “creating” the mitochondrial diease-free individual, and, no actual specific individual is being “saved” by this technique.

It is very important to correctly define our terms before we have the ethical discussion to determine the right thing to do.

The cost-effectiveness of prenatal screening for Down syndrome

Because the British National Health Service is a governmental single-payer system decisions about what is covered in that system involve public discussion. That leads to public discussion of ethical issues that frequently manage to avoid the public eye in the US. A recent article in the Daily Mail talks about an issue that is being debated by the British NHS. They are currently deciding whether noninvasive prenatal testing, also known as prenatal cell-free DNA screening should be covered by their health system and whether it should be covered only for those at high risk for chromosomal abnormalities or as a general screening test. This test identifies chromosomal abnormalities in a fetus more accurately than previously available screening tests, but is more expensive. The most common abnormality identified by this test is Down syndrome.

Some of those involved in this discussion have suggested, according to the Daily Mail article, that an analysis of the lifetime costs of caring for children with Down syndrome should be included in a cost-effectiveness analysis of whether this test should be provided for general screening. That suggestion has raised significant concern among parents who have children with Down syndrome. Their concern is based on a significant ethical issue. For the cost of caring for children with Down syndrome to be considered as a part of the cost-effectiveness of this screening test one would need to be balancing the cost of using this screening test for general screening against the costs of care that would be saved by the system not having to pay for the care of those fetuses with Down syndrome who were aborted. That means that a child with Down syndrome who is allowed to live is being seen as a financial liability to the system and that the cost of medical care for that child is being used to justify the cost of screening. What would be left out of such a cost effectiveness analysis would be the value of the lives of those children with Down syndrome. That is why the parents of children with Down syndrome are justifiably upset.

Cost-effectiveness analysis can be appropriate when we are comparing alternate ways to treat a disease or save a person’s life, but we need to be careful that what we are analyzing is the comparative costs of treatments that provide benefit to the person being treated. We should not do a cost-effectiveness analysis based on saving costs by ending the lives of those for whom we should be caring. This applies whether those lives are lost by abortion or by euthanasia.

Late Term Zika Abortions: Thankfully not Euthanasia

If I were the editor of a recent Newsweek article by Cornell Law Professor Sherry F. Colb, the above title would have been my choice for her article. I must encourage you to read the actual article, lest you believe that the summary that follows is somehow taken grossly out of context. Her concern is that a late term abortion to terminate the life of a Zika-infected baby might be morally problematic because it might be misconstrued as euthanasia rather than simply a late term abortion.

She begins factually with her concern for the increasing prevalence of Zika, a virus causing severe microcephaly of babies born to parents with the infection. Further complicating the matter is that the birth defects are not apparent until well into the third trimester. Thus, per Professor Colb, Zika pregnancies require us to answer two moral questions. The first question is whether it is “…right to end a pregnancy because the baby would be severely disabled if brought to term?” The second wonders whether it is “right to take the life of a fetus late in pregnancy, regardless of the reason?” (I was encouraged at this point that she conceded both that the fetus was alive and that a baby was a direct result – my optimism did not last long.)

She was quick to point out that she considers “…the reasons for a woman’s choice to terminate her pregnancy to be irrelevant to the question of whether she should be legally permitted to do so…” as she is “…entitled to be free of the bodily intrusion that is pregnancy, even if her reason for wanting to assert her bodily integrity is an offensive one.” Her reason for even bothering to discuss the moral issues is because she anticipates that large numbers of women may be wanting to terminate their pregnancies so the discussion is worth having, “…even if our answer will not affect the legal conclusion that the woman should be free to terminate.”

In answering her first question in the affirmative, she effectively equates routine abortion to contraception and considers the fetus to be a “potential” life, arguing that even in Down Syndrome, parents choose abortion, and since Zika is a worse condition (her stipulation), “…it may be that an abortion will spare not only the parents but their child a life that is, in some sense, not worth living.” (I have always wondered what it is we are sparing a specific child by not having it live – a non-entity cannot be spared anything – the concept seems incoherent)

The second question is more troubling for her. Her “no-go” line for abortion and moral significance is sentience but she admits that others have different criteria. However she further concedes that the later one goes in the third trimester, “…the more likely that people will have the moral intuition that we are no longer talking about a ‘potential’ child but are instead talking about either an existing child or at least someone worthy of nearly as much moral consideration as a newborn baby.” For her, the moral calculus has changed. Bodily image abortion arguments fail (simply birth the child alive, “…thereby ending the internal occupation…”). Terminating the pregnancy at this point does not need to terminate the life of the fetus or baby, and “…the choice to have an abortion (one that kills the fetus or baby) is really a choice to take the life of the fetus or baby because it is not considered a life worth living.” She is equating late term abortion to euthanasia. (Correctly in my mind, and, since I have different criteria for abortion, specifically, nothing post conception, therefore, all abortion is euthanasia)

She solves her moral dilemma by hiding inside a legal loophole. “If one nonetheless concludes that because of the potentially catastrophic nature of the birth defects, children with Zika are better off not existing than living severely compromised lives that they would otherwise live, the fact that they live inside a pregnant woman may give people a legal –if not a moral—loophole through which they can achieve their desired end, though it is really euthanasia.” The pregnant woman can do all this “…without beginning the slide down the euthanasia slippery slope, because we can fit what she has done under the heading of “abortion” instead of “euthanasia.”

Let that last bit of mental gymnastics sink in.

From what vantage point does one judge the slippery slope of one moral issue whilst sliding down the slope of another?

Observations from a recent discussion of doctor-assisted suicide

Early this past June, the Annual Meeting of the American Society of Clinical Oncology (ASCO) included an ethics session featuring a point-counterpoint discussion, with audience Q+A, of “physician aid in dying,” or, as I think more accurate, “physician-assisted suicide (PAS).”  Discussants were Dr. Timothy Quill, a palliative care specialist who is a past plaintiff in court cases seeking legal approval of PAS, and Dr. Daniel Sulmasy, an oncologist who is an outspoken opponent of PAS.   Both have written extensively on the subject.

I missed the session but only now was able to review it on ASCO’s “Virtual Meeting,” available only to subscribers.  I cannot summarize it fully but will just relay some observations from my listening.  I will say that the session lived up to its billing as a “thoughtful discussion,” one that demonstrates just how far our thinking has come (wandered?) on this matter.

I think it important to say that, although I consider Dr. Quill an adversary, his presentation clearly demonstrated concern for his patients.  Some of his noteworthy points:

  • ·       Although he calls PAS a “last resort,” he includes it in the umbrella of palliative care measures, and claims that the same issues of potential harms arise with all of them.  I’m not so sure; one can heavily sedate someone, not intending to kill him but accepting that risk (by the rule of “double effect”), and that is different from purposely helping that person kill himself.
  • ·       He emphasized that more patients ask about PAS than actually go through with it.  But he showed data from Washington state in which the numbers of the two were nearly identical.
  • ·       Because of that, he is concerned that a refusal to discuss PAS with a patient could compromise the care of the patient by turning a deaf ear to the patient’s concerns—which, as well recognized, are typically around loss of control, not pain, at the end of life.
  • ·       He voiced support for a conscience-based “opt out” by doctors opposed to PAS but said “that doesn’t take [the doctor] off the hook,” meaning not that the doctor must refer to a “PAS doctor,” if you will, but that the challenging task of caring for the patient remains.
  • ·       Similarly, he commented that in about half of PAS cases in the US, the lethal prescription is written by a doctor with less than 6 months’ acquaintance with the patient.  I understood Dr. Quill to say this is not a good thing, suggesting breakdown of longer-term physician-patient relationships precisely when those relationships are most critical.
  • ·       He said that the legally-approved method of taking the prescription in Washington State is not easy.  Recall the patient, not someone else, administered the prescribed drug, which is 100 capsules of secobarbital, opened by the patient one by one and dumped into applesause (or something similar), making a distasteful concoction.  I couldn’t help being saddened just imagining someone following through on the grim task.
  • ·       He said that, although we might want to get clean resolutions in all cases, the fact is that care of some patients is genuinely so hard that true relief of symptoms is not possible.

Dr. Sulmasy countered with a strong and classic argument against PAS as bad medicine and bad policy, following reasoning like what has been written previously on this blog by me and others, so I will not try to rehearse it fully here.   He drew the distinction between providing medical care and actively helping someone kill herself.  Further:

  • ·       People looking at the Oregon or Washington experience to argue that the “slippery slope” is not real are ignoring the contrary data from the Netherlands and Belgium, where the practice has been in place longer, and where people are offered PAS for depression.
  • ·       To those who object that “depression” does not apply to terminally ill patients who request PAS, Dr. Sulmasy countered that all too often treatable depression is not even sought by the physician, much less treated.
  • ·       The logic and experience with PAS will eventually demand that it be offered to people who are not terminally ill.
  • ·       Similarly, arguments based on autonomous choice will unavoidably be used to argue for actively killing people who can’t take a lethal prescription themselves, such as people with dementia or neurodegenerative disease, or children.
  • ·       “Opt outs” are being forcefully opposed in Belgium and Canada.
  • ·       He argued that symptoms are treatable in nearly all cases.
  • ·       Perhaps most notably, to the point that “existential suffering” about loss of dignity or loss of control is paramount, Dr. Sulmasy argued for caring for the patient in the face of this, and not succumbing to PAS.  In so saying, he commented that it is not part of the doctor’s calling to “relieve the human condition.”

Three questioners stood out:

One said that his main local hospice has announced it will NOT participate in PAS.  He supported this, but worried it will “affect his ability to refer” patients who may want to explore PAS to that hospice.  (Dr. Sulmasy commented that institutions as well as individuals should be free to opt out of PAS based on conscience.)

A second questioner, who said he consults and accepts PAS referrals in Oregon—aessentially arguing “somebody’s got to do it”—said that in his experience, many, many times the physician (oncologist) has not only failed to discuss end of life care at all with the patient, but has not even told the patient that the diagnosis is terminal.  This was part of a longer comment saying that we should not condemn the short-term relationships between patients and doctors who write lethal prescriptions.  This made Dr. Quill uneasy.  He objected that “specializing” in PAS was deeply suspect ethically because “it would make [PAS] too easy, and this [palliative care] is not easy”

A third questioner suggested revising the Hippocratic Oath to remove any indication that doctors should not participate in PAS.   After all, we don’t appeal to Apollo anymore, do we?  (And, unspoken at the session, many medical schools have dropped the Hippocratic proscription of abortion.) But no, we should not!  That’s the point!  The Hippocratic tradition confirms the essential role of the physician as healer, not killer, and doctors in the 21st century should likewise affirm that principle robustly.

Evil on its Face

In June of this year, a group of ethicists—should I say that I use that term loosely?—issued a “consensus statement” to guide legislation and institutional policy regarding conscientious objection in medicine.  Conscientious objection, they explained, “is the refusal to provide a certain medical service, for example an abortion or medical assistance in dying, because it conflicts with the practitioner’s moral views.”  Their words, not mine.

They went on to aver that the general medical principle that the care of the patient is paramount, taking priority over the practitioner’s “moral or religious views.”  Not that the practitioner must efface his or her self-interest for the sake of the patient’s best interest, pace Dr. Pellegrino, but that moral arguments must take a back seat to “a patient’s desire for a legal, professionally sanctioned medical service.”  So, in other words, if the law and the powers that be determine that something is permitted within the bounds of medical practice, all practitioners must submit to that.  If they object to, for example, participating in euthanasia when the legislature has deemed this permissible, they must state their reasons—including going before a “tribunal,” if necessary—and refer for the service or perform it themselves if no referral is available.  Punishments are in order: “Healthcare practitioners who are exempted from performing certain medical procedures on conscientious grounds should be required to compensate society and the health system for their failure to fulfill their professional obligations by providing public-benefitting services.”  I’m not sure whether “by providing public-benefitting services” is intended to modify “compensate” here—that is, the punishment should be community service of some unspecified sort—or to modify “obligations”—that is, construing doctor-assisted suicide and abortion as primary public goods and medical duties.

Further, medical students “should not be exempted” from learning how to perform these acts, because they might need to do so “in an emergency situation.”  Well—emergency doctor-assisted suicide?  Emergency abortion?  In the latter case, certainly procedures to protect a woman’s life in situations that do arise, such as heavy bleeding or the presence of an already-dead fetus should be included, but performance of elective abortions, or of late-term abortions?  Rare cases in this last instance may arise, but not to warrant “practice” in elective cases.  And, as anyone who went to medical school knows, “see one, do one, teach one.”  Learning means doing.

Finally, the tenth and last “principle” is “Healthcare practitioners should also be educated to reflect on the influence of cognitive bias in their objections.”  Really, now.  Follow the link above and read not just the statement but the often-salty comments that follow, and ask just whose “consensus” this is, and note one commenter’s point about the last principle, related to “cognitive bias,” that “mutatis mutandis, the same principle might be enforced on philosophers.”

Sometimes, civility is the enemy of truth, so I must say here that this is calling evil good, a naked attempt to ram abortion, doctor-assisted suicide, and, by extension, numerous other objectionable practices down the throats of Hippocratic-thinking physicians.  There is nothing good to say about this “consensus statement.”  It represents no “consensus” at all and should be condemned in the strongest possible terms and resisted steadfastly.

“Hat tip” to Wesley Smith, who flagged it in a blog post, calling it an example of “medical martyrdom,” an attempt to drive people who revere human life and dignity out of the medical professions.  See here and here.  (Note: National Review Online has folded Smith’s blogging into its “Corner” blog, closing down the separate “Human Exceptionalism” blog, which I, for one, will miss.)

Public discussions on human gene editing

On August 3, the National Academies of Science, Engineering, and Medicine posted online the slides and talks from its July 12 meeting to discuss public implications of the Human Gene-Editing Initiative.  A total of four meetings plus a related workshop were held: an introductory discussion in December 2015, followed by three more substantial meetings plus the related workshop in February, April, and now July of 2016. 

I’m still working through the materials, notably Francis Collins’ slide set from the July 12, 2016 meeting, addressing regulatory processes, in utero gene editing, and other topics.  But what first caught my eye was a brief written statement from the same meeting, from Ron Cole-Turner of Pittsburgh Theological Seminary.  In it, he states that Christian opinions on human gene editing are not monolithic; that, far from being reflexively in opposition, those opinions are quite open to editing even of the human germline as long as safety concerns are addressed, embryos are not sacrificed in the process of research, and therapy rather than enhancement are in view.

I must say the statement disappointed me.  The “safety argument” is the most prominent ethical concern raised in discussions of whether editing human genes in heritable ways is ethically permissible.  We certainly want assurances that we would not put the “edited” individuals at risk, and we really would want some level of certainty that the downstream effects would not be disastrous.  But of course, the latter may be impossible to assess, since adverse consequences could be subtle and might become apparent over many generations.

Beyond that, I thought Cole-Turner’s statement was too limited, with no mention of questions of informed consent, and with no deeper reflection on how human germline editing might (I would say, would) alter the way we look at ourselves, each other, our children, and the human race in general.  The push would be further toward seeing humans as plastic, alterable entities without limit, and, beyond questions of “simple” justice (how would we keep from making benefits available only to the rich?), would create a class of, as C.S. Lewis suggested, “conditioners,” or as contemporary European thinkers have put it, a class of engineering humans who work on other, engineered humans.  Finally, Cole-Turner did not really engage the concern that there is a constant eugenic temptation in humanity that would likely re-assert itself with force.

Cole-Turner’s statement was not proud; he opened by admitting that no one person could speak for all Christians.  And maybe brevity was necessary on the occasion of the committee meeting.  But I still would hope for more robust “religious” inputs at sessions like this.  Otherwise, one gets the feeling that all that is sought is a token religious imprimatur on the most cutting-edge biotechnologies of the “brave new world.”

Follow the link in the first sentence of this post, and the statement by Cole-Turner, as well as other materials from all the meetings, may be reviewed in detail.  It is good that these are posted, because, although it’s easy to say that a thorough public discussion of transformative biotechnology should be held with all stakeholder groups, only so much is generally done to achieve that.  Even interested parties, like your humble correspondent, have limited time to devote to the details.  But more of us in the general public should labor to make time to dig in deeper.

ADDENDUM: After posting the above I went back to the link (top of this post) and read through the slides from Dr. Collins.  Readers of this blog should by all means do so as well.  At the end, he muses about the level of acceptability of 28 current or possibly future interventions, placing them on a grid of when they will be in practice vs. level of ethical concern they prompt.  The slides are self explanatory and worth musing over.–JTH