Withdrawing life-sustaining treatment from an infant and rights of conscience

The is currently a legal (and ethical) debate in Texas over the treatment of a one-year-old infant, Tinslee Lewis (see articles in the Hastings Center Bioethics Forum and the Fort Worth Star-Telegram). Tinslee was born prematurely with a congenital heart defect and subsequent severe lung disease. She has had multiple surgeries and is on a ventilator in ICU. In October Cook Children’s Hospital, physicians, and ethics committee made a decision to remove her from the ventilator in spite of her mother’s desire to have the ventilator continued. This was done in accord with Texas law which allows a hospital to stop life-sustaining treatment of a child against the wishes of the child’s parents if the treatment is futile. Tinslee’s mother went to court and obtained an injunction to keep the hospital from withdrawing the treatment. In January the court decided in favor of the hospital that the treatment could be withdrawn, but that decision was appealed and is now being heard in a Court of Appeals. There are two issues at stake. One is who should be the final decision-making authority for Tinslee. The other is whether the current Texas law is constitutional.

The hospital says that treating Tinslee with the ventilator is causing suffering without medical benefit and that her physicians have a right to decline to participate in such treatment. They support the current Texas law which would allow the hospital to stop the treatment. Tinslee’s mother says that her daughter is not suffering and has actually recently improved. Her lawyers say that the current Texas law is unconstitutional. The two sides have been joined by interesting supporters. The hospital has been joined by the Texas Catholic Conference of Bishops and several other groups including a pro-life group and a disability rights group who argue that the current law provides protection for patients and protects rights of conscience for physicians. Tinslee’s mother has been joined by the Texas Solicitor General and the Texas Attorney General who are seeking to overturn the current Texas law.

The basic ethical question is whether rights of conscience apply in this situation. The physicians and hospital say that they believe that continuing the ventilator is wrong because it is causing suffering without medical benefit and they should be able to refuse to provide a treatment they believe to be wrong because of a right of conscience.

I think that rights of conscience for physicians and other medical providers are very important. However, there is a significant moral difference between the usual understanding of rights of conscience in which physicians refuse to engage in actions they believe to be inherently morally wrong. A physician who refuses to be involved in abortion or euthanasia does so because he or she believes that such actions are inherently wrong. The physicians in this case do not believe that treating an infant with a ventilator is an inherently wrong action. It is quite likely that these same physicians recommended the use of the ventilator and encouraged Tinslee’s mother to see this a treatment that was good for Tinslee and which they could make as painless and comfortable for her as possible. The decision to stop the treatment which they once recommended is a judgment based on their values that the burden of the treatment has become more than the benefit of the treatment. That is significantly different from a refusal to participate in a treatment which the physician believes to be inherently wrong. The burden of being on the ventilator is no different than it was when it was started. The ventilator continues to be effective in performing its function of supporting respiration. What has changed in the physicians’ minds is whether the benefit of extending this child’s life is worthwhile. That is a decision that should be made based on the values of her mother, not the values of the physicians.

An argument for heritable genome editing

Some weeks ago, a utilitarian perspective in favor of heritable genome editing was published (purchase or subscription required to read).  In it, the author, Kevin Smith of Abertay University in the United Kingdom, begins with a general defense of utilitarianism, the ethical philosophy that what is morally good is what produces the greatest good for the greatest number, as opposed to alternative ways of judging that invoke duty, principles, God’s law, or virtues.  In the process, he comments that ethicists who do not consider themselves utilitarian often employ risk-benefit or cost-benefit analyses in making particular judgments.  “We’re all utilitarians now,” as it were.   Smith then proceeds to make a case by a utilitarian, for utilitarians, in favor of pursuing heritable genome editing.  Key points:

  • Genetic editing will technically improve, reducing if not eliminating risks and broadening the ability not only to eliminate genetic disease but also to enhance complex genetic traits and correct mutations that increase risk for disease.  He envisions a day when correcting gene editing errors will readily be reversible by further editing (an “undo” function, as it were).  Consequently, we should anticipate that heritable genome editing will provide many benefits but few harms.
  • Early adoption of technologies is generally beneficial in the end, as, he argues, was the case with IVF, because to delay is to put off the benefits.  In the case of heritable genome editing, we won’t know how well it works without forging ahead.  Nonetheless, the editing of embryos leading to the birth of the edited twins in China in late 2018 was a bit reckless, and the reaction threatens to regrettably and unnecessarily retard progress.
  • Preimplantation genetic diagnosis (PGD) is not a preferable option because some genetic diseases cannot be avoided with PGD (i.e., if all IVF embryos are affected, so there is no unaffected embryo to select) and, more importantly, any additional risk from heritable genome editing is likely to be limited to a relatively few cases in the relative short term, while ultimately yielding much larger benefits to a larger number, justifying the greater risk to some.  (This, I suppose, could be considered crudely analogous to the accepted human research principle that risks to subjects may be acceptable if potential benefits to society—e.g., in development of a candidate new medicine—are possibly greater.  It’s OK for some people to get sick from too high a dose of an experimental drug, for example.)
  • Heritable genome editing should be used soon, because doing so will hasten the first celebrated successes, which will supercharge public support to expand the use of the technology.
  • Adoption is an important alternative, because it increases the happiness of an existing individual, the adoptee, instead of the more speculative prospect of a healthy new person without disease from a mishap from the gene editing.  But if a couple chooses not to adopt, preferring to have a genetically-related offspring, they should not be denied the opportunity if one is possibly available.
  • In general, more new people means more overall happiness for the human race in general, because the new people are more likely to be happy and not, and at least not diminish the happiness of other existing people in the progress.  (This seems to take for granted that heritable genome editing will not cause a detrimental population explosion—which, indeed, seems pretty unlikely.)
  • Having a child produces more happiness for all involved than not having one.
  • Having a genetically related child is better than having one that is partly unrelated, as would be the case with a child conceived using sperm or egg donation from a donor without a genetic disease to be avoided.
  • In cases where a couple simply could not avoid their naturally-conceived child having a bad genetic disease, to go ahead and conceive such a child would entail suffering for the child and parents, and the moral benefits of suffering are overrated.
  • The upside of heritable genome editing—i.e., the potential for human enhancement—is huge.

Many of these points are reasonable as far as they go.  Where this sort of argument leaves one unsatisfied is in the high optimism for technical success without unintended consequences; conceiving the risk-benefit relationship as if it can readily be calculated with confidence; disregard for broad consequences for how we understand ourselves, our begetting, and how we should receive fellow humans who are less than fully whole, physically; and, in some cases, the potential for alternative treatments.

Smith rejects a “precautionary” approach as too timid, but still concludes that maybe we should wait a bit, for the reaction to the Chinese twins’ birth to wear off and for scientist to be able to marshal further their technical case. 

Discussion to follow in future posts.

Twenty-first Century Divorce: Who Gets Custody of the Embryos?

A recent CBS news story provides yet another example of the technology and legal cart pulling the ethical horse.

In short, in 2014, an Arizona couple used in vitro fertilization (IVF) to preserve her eggs after she learned she had breast cancer and would require chemotherapy. The woman’s then boyfriend originally declined to be the sperm donor but later agreed when the woman, perhaps desperate to preserve her eggs, considered using a former boyfriend as the donor (fertilized eggs survive cryogenic preservation far better than unfertilized eggs). The couple executed a contractual agreement, provided by the clinic, as to the disposition of the frozen embryos (“their joint property”) should their relationship divorce or dissolve prior to implantation. They married several days later, underwent IVF yielding 7 embryos, which were cryogenically preserved and the woman underwent successful chemotherapy.

Unfortunately, after 2 years of marriage but prior to implantation, the husband filed for divorce. The pre-IVF contract stipulated that both husband and wife had to mutually agree on the disposition of the embryos – if not, they agreed a court could decide the embryos’ fate. Recently, the Arizona Supreme Court determined that the embryos should be put up for adoption, siding in one sense with the ex-husband to prevent the ex-wife from “using” the embryos. The decision upset many in Arizona to the point where the Arizona Legislature enacted a law to award the frozen embryos, in the future cases of divorce, to the spouse who “intends to use them to have a baby.” The new law will not benefit the ex-wife so, at the time of this blog entry, she was considering whether or not to appeal her case to the US Supreme Court.

There is a lot here to consider. I want to focus on just a few issues. First, I left scare quotes around several of the terms used in this case. The frozen embryos are indeed legally “joint property”, much like children in other cases of divorce. The couple could have just as easily checked the box on the contract to select “Destroy the Embryos” in case of their divorce. This same choice is one that many married (and unmarried) couples make regularly in IVF absent divorce when deciding the fate of unwanted or unused embryos following successful pregnancy and birth from prior IVF cycles. So asking a court to decide the fate of the frozen embryos is similar to children of divorced couples (though their “destruction” is not currently an option.)

“Using the embryos” is terminology that further emphasizes the commodification of frozen embryos as we consider them as a convenience for, or, for the sole benefit of, the parent(s). While I can empathize with the ex-wife’s desire to preserve her ability to have future children in the face of cancer treatment, her choice of an ambivalent (then) boyfriend over an ex-boyfriend as the father of her future children has proven disappointing, if not disastrous, for her in the present. It is harder for me to grasp the rationale of the ex-husband, who, though previously agreeing to father his ex-wife’s children, now (vindictively?) refuses to allow her to mother them, particularly since (continuing with my horse analogy) that fatherhood horse left the barn years ago.

As we allegedly advance our technical and scientific skills by increasing the various situations in which women can become pregnant, we are demanding more legal decisions when these new situations cause conflict rather than discussing and agreeing beforehand whether or not to permit these situations from occurring in the first place.

On Justice & Healthcare

At a bioethics conference two years ago, I heard the Surgeon General of the state of Florida say that one’s zip code was a more accurate determinant of one’s health than one’s DNA.  It took a while for that statement to sink in, but when it finally did, it was nothing short of shocking. Her comment significantly raised my awareness of some of the disparities in our healthcare system.

I was reminded of this experience when reading a recent editorial by Dr. Audiey C. Kao, editor-in-chief of the AMA Journal of Ethics, entitled, “Motivating Health Equity”. He addresses the issue of justice in healthcare by starting with an account of an interaction he had with a man sitting on a park bench with a sign asking for money.vvKao then cites a study of his city (Chicago) that compared two neighborhoods, one primarily black and the other primarily white, finding that they “had a life expectancy gap of 30 years.”  “This,” he concludes, “is a justice problem and cannot be fixed without tackling social, political, and economic root causes that advantage some of us and disadvantage some of us.”

As the 2020 election cycle is now in full swing and candidates are once again addressing the healthcare concerns of the electorate, there will undoubtedly be much talk about justice.  What does a more just healthcare system look like? Despite the promises of the candidates, it seems that the divisiveness of the current political climate does not give great hope that a solution for these concerns is easily within reach.

I think it would be a mistake, however, simply to give up on justice.  The divide between the “haves” and the “have nots” is too great to completely ignore it.  I appreciate Kao’s affirmation of the Journal’s commitment “to catalyzing greater appreciation for and understanding of health equity and to motivating ‘assurance of the conditions for optimal health of all people.”  

Kao gives us a good reminder to examine our first principles and to consider those who have been overlooked by our current system.

Justified Quarantine?

The 2019 novel coronavirus (2019-nCoV) is a force to be reckoned with, despite its unclear origins (see here and here).  From Wuhan, China, the virus has spread to all of the Chinese provinces, and, by 31 January, eighteen other countries.  By 30 January, the World Health Organization (WHO) had declared the situation a public health emergency of international concern (PHEIC).  

The Centers for Disease Control and Prevention (CDC) reported on 31 January that four states—Arizona, California, Illinois, and Washington—have a total of six known cases of persons infected with corona virus. In addition, 36 states have patients under investigation for the infection.  Citing the approximately 10,000 confirmed cases of the virus in China, and evidence of person-to-person spread of the infection, the White House announced on 31 January the suspension of entry into the U.S. of persons posing a risk of transmitting the virus. One point of that announcement concerned quarantine: 

Sec. 4.  Orderly Medical Screening and Quarantine.   The Secretary of Homeland Security shall take all necessary and appropriate steps to regulate  the travel of persons and aircraft to the United States to facilitate the orderly  medical screening and, where appropriate, quarantine of persons who enter   the United States and who may have been exposed to the virus.  Such steps may include directing air carriers to restrict and regulate the boarding of     such passengers on flights to the United States.

The U.S. is not the only nation planning or implementing quarantine. China has already moved to at least partially quarantine persons in Wuhan.  According to the BBC, the UK, South Korea, Singapore, and New Zealand will quarantine evacuees from Wuhan for two weeks. Australia will similarly quarantine their evacuees on Christmas Island.  

In light of the evolving situation with 2019-nCoV, it is a good time to review some definitions and recommendations from the public health arena:  

Isolation separates sick people with a contagious disease from people who are not sick.

Quarantine separates and restricts the movement of people who were exposed to a contagious disease to see if they become sick.

The essence of quarantine is the restriction of movement of individuals, imposed by an authority, for some length of time. “Quarantine” has been attributed to the Venetians, who, in their effort to stem the spread of the Black Death, required ships “to lay at anchor for forty days” prior to landing.  In the U.S., the National Quarantine Act was passed in 1878 in an attempt to avert the spread of Yellow Fever. A national quarantine system was enacted by Congress in 1893. Fast-forward to 1983, when Executive Order 12452 was issued by President Reagan:

Section 1. Based upon the recommendation of the National Advisory Health   Council and the Assistant Secretary for Health of the Department of Health and Human Services, and for the purposes of specifying certain communicable diseases for regulations providing for the apprehension, detention, or conditional release of individuals to prevent the introduction, transmission, or spread of communicable diseases, the following named communicable diseases are hereby specified pursuant to Section 264(b) of   Title 42 of the United States Code: Cholera or suspected Cholera, Diphtheria, infectious Tuberculosis, Plague, suspected Smallpox, Yellow Fever, and           suspected Viral Hemorrhagic Fevers (Lassa, Marburg, Ebola, Congo-Crimean,   and others not yet isolated or named).

Does quarantine constitute “an unwarranted diminution of personal liberty”? Ross Upshur, M.D., M.A., M.Sc, who is also a Hastings Center Fellow, deals with this question and more in a 2003 article in the AMA Journal of Ethics.  He cites two goals achieved by quarantine: stopping the chain of transmission of infection, and allowing “individuals under surveillance to be identified and directed toward appropriate care if they become symptomatic.”  Additionally, Upshur describes four principles that must be met for quarantine (or other autonomy-limiting steps) to be considered:

  1. The general principle of preventing harm: particularly, this would include prevention of person-to-person spread of the infection
  2. The “proportionality, or least-restrictive-means principle”: quarantine should          be voluntary “before mandatory orders or surveillance devices, home cameras, bracelets, or incarceration are contemplated”
  3. Reciprocity: if persons are quarantined, they should be provided with “adequate food and shelter and psychological support . . . They should suffer no penalty on account of discharging their obligations to society.”
  4. Transparency: “(P)ublic health authorities have an obligation to communicate clearly the justification for their actions and allow for a process of appeal. (See full article here.)

If all of these criteria can be met—no small order—Upshur writes that quarantine is justified.

Is personhood a biased term?

In ethics it is very important to communicate with clearly defined terms. This becomes especially important when dealing with a very divisive topic such as abortion. Fifty years ago, in the ethical debates about abortion, some expressed concern about how the term human being was used by those who claimed that abortion was wrong. The basic argument for the position that abortion was wrong went like this: It is wrong to kill an innocent human being. A human fetus is an innocent human being. Abortion involves killing a human fetus. Therefore, abortion is wrong. It was claimed that this was not a proper argument because the term human being meant different things in two of the premises. In the first premise human being means an individual with full moral status, but in the second premise human being is used in its biological sense. The claim was made that not everyone believes that every member of the human species has full moral status, so we should not use the term human being in this argument. It was proposed that everyone involved in the discussion abortion use the term person to represent those individuals who have full moral status. Since this discussion in the 1970s the term person has been used in the ethics literature as a technical term which is defined as those individuals who have full moral status.

However, it seems to me that the term person has the same problem as the term human being. In common usage it means other things than individuals with full moral status. It is commonly used to refer to adult human beings although children are sometimes included in who we think of as persons. It many times means those with whom we communicate and have a relationship. In legal terms it means something different. It refers to those who have certain rights and responsibilities under the law. It involves those who can be held accountable for their actions and those who can do such things as owning property and entering into contracts. The legal definition a person can include entities that are not human beings such as corporations. This becomes a problem when we look at how we define who is a person. Instead of looking at how we should understand who has full moral status, we tend to look at who fits with how we commonly use the term person. The Supreme Court in Roe v. Wade stated that “the unborn have never been recognized in the law as persons in the whole sense,” but that does not necessarily mean that the unborn do not have full moral status. Mary Ann Warren asserted that it is those who we consider to be persons rather than those who are genetic human beings who make up the “set of beings with full and equal moral rights.” However, she defined personhood based on cognitive capacities that are characteristic of fully healthy adult human beings who are moral agents and leaves out many, such as infants and those with cognitive disabilities, who we would commonly consider to have full moral status.

Using the terms human or human being to represent those who have full moral status assumes that all biological human beings have full moral status. Using the term person to represent those who have full moral status assumes that having full moral status is based on something other than being a biological human being. But that is the question. What we are trying to decide is whether it is correct to decide who has full moral status based on being a member of the biological category of beings we call human beings or based on having certain cognitive attributes or capacities. Since both terms essentially beg the question, it would be better to use neither. In discussing whether a fetus or some other individual has full moral status we need to focus on how we decide who has full moral status and recognize that using the terms human being or person in a moral sense represent positions on that issue.

New technology, old moral problem

Many of our discussions in bioethics are about whether the things that are possible to do with advances in medical technology are things that we ought to do. However, some of the moral concerns in medicine are much more basic. They have to do with the idea that dates back at least to the Hippocratic oath that physicians should use their knowledge for the benefit of the people they treat. Patients should not be used by physicians in ways that are harmful to the patient in order to increase physicians’ income.

Medscape recently reported on a study presented at the American Society for Reproductive Medicine 2019 Scientific Congress which looked at how well fertility clinics across the US complied with the Society’s online advertising policy. They found that many clinics were not following the policy. The major concern was that there were a significant number of clinics that were advertising success rates without revealing the additional information needed to make that rate meaningful. The most serious concerns had to do with clinics that advertised high success rates without revealing that they also had higher than recommended rates of transferring more than one embryo per cycle and had significantly higher than expected rates of twin pregnancies. It is well known that twin pregnancies have a higher risk of complications for both the mother and the babies. Transferring more than one embryo increases the chance of achieving pregnancy and live birth with a cycle of IVF but also increases the likelihood of twin or other multiple gestation pregnancies and the risk to the mother and babies. By transferring more than one embryo in situations in which it is not generally considered justified, these clinics are increasing the success rate that they advertise to obtain patients by doing something which causes harm to their patients.

When the physicians at a fertility clinic prioritize their income above doing what is best for the people they are treating, they have gone beyond unethical business practices. They have abandoned one of the main things that makes the practice of medicine a moral profession.

Autonomy of Access vs. Autonomy of Decision Making in Opioid Addiction

A recent Perspective in The NEJM by Dr. Amy Caruso Brown discussed the ethics consultation involved in treating addiction as a terminal disease. Since the article is behind a subscription firewall, I will briefly summarize the case and some of the ethical problems outlined by Dr. Brown. The focus of this blog is to ask the limited question as to whether or not there is sufficient patient autonomy to make decisions in an addiction situation described as terminal if, as Dr. Brown claims, society has failed to provide sufficient access to and services for patients with chronic addiction and/or mental health problems associated with similar levels of addiction.

Dr. Brown’s patient, Ms. A, was an unemployed, homeless woman who had a history of chronic opioid use/abuse and had failed multiple impatient rehabilitation, methadone maintenance and buprenorphine treatment programs. She was hospitalized for septic shock secondary to endocarditis, which had damaged two heart valves to such a degree that she was not considered healthy enough to survive surgery to correct the problem. Her only relative, a brother, who had recently finally cut ties with his sister to protect exposing his children to her illness and habits, agreed to a do-not-resuscitate order. To the surprise of her treating staff, her condition stabilized to the point where the cardiothoracic surgeon agreed to operate. She declined, wanting to be discharged so she could seek morphine to self-treat the intractable chest pain. She fired her attending physician as he made the ethics consultation referral questioning her decision-making capacity.

Dr. Brown nicely outlines the particular issues of legal capacity requirements required in New York and the limited capacity that surrogates have if they we not previously designated as such. Dr. Brown also discussed whether or not Ms. A met the criteria for terminal illness, specifically whether or not ongoing chronic opioid addiction, in the face of now severe cardiac compromise, would be expected to cause death within 6 months. Dr. Brown maintained that Ms. A was lucid and capable to make informed decisions, which were that she “simply wanted to go home, or to a hospice facility, and die peacefully.” Dr. Brown did not find her depressed or emotionally compromised, though quoted her as saying “I’m done. I’m ready to be done. I’ve fought long enough” and described her as “exhausted and grieving”. Dr. Brown believed Ms. A’s “decisional capacity was clear.”

Finally, Dr. Brown argued that society had failed Ms. A by not facilitating access to a treatment program that “included medication for opioid use disorder (OUD) – preferably initiated in an inpatient setting and coupled with ongoing trauma-informed mental health care and various social supports – [in the absence of which Ms. A] would almost certainly have a relapse”, further making it likely she would die within 6 months. Though the article noted Ms. A had previously failed inpatient rehabilitation, methadone maintenance and buprenorphine, it was not stated how coordinated or integrated the previous programs were. Was the proposed program new or simply a second (or third) chance through a similar program? Thankfully, Ms. A decided to accept palliative terminal care, which resolved her homeless situation, as it would be provided at an inpatient facility.

What if Ms. A had declined inpatient palliative care? Dr. Brown made a strong case that Ms. A’s social situation (poor, homelessness, mental health history of abuse and chronic opioid dependence/abuse) limited access to an appropriate treatment program for her problems, likely the only one with any expectation of success, however limited. Even if we grant that Ms. A was indeed terminal and had clear decision-making ability not compromised by depression, ongoing opioid dependence and other mental health factors, did her social situation really allow her to be autonomous in decision making? Said differently, how can we consider her autonomous for decision-making when she apparently lacks autonomy for access to her treatment? Further, how much support can an individual demand or expect from society and still be considered autonomous? I have touched on a similar issue in this blog previously with regard to serial pregnancy in opioid addicted women, asking when should the risks to the children (and social and financial burden to society) supersede the mother’s autonomy for having more children?

We need to improve access to treatment and support for mental health in general and opioid treatment in particular. This will likely include further discussion regarding the level of autonomy of those needing that treatment and support.

Controlling gene editing

The title does not mean societal or legal control of gene editing technology.  Rather, it speaks of controlling, or shutting off, a specific gene editing process.  In retrospect, it had to be the case that there is a resistance, or control, mechanism for the CRISPR system, the gene-editing machinery that functions as a way for bacteria to resist invasion by viruses.  An engaging essay in Nature this week discusses this on a level accessible to one who, like me, is not a technical specialist in the field.  Briefly, a few years ago a grad student at UC/San Francisco discovered cases in which the CRISPR system was ineffective in certain bacteria.  Following up led to the discovery of some 50 proteins that can act as “kill switches” for CRISPR.

On a surface level, the implications are clear—learn how to deploy these proteins and one can monitor one’s gene editing efforts for unwanted effects, or for spinning out of control, and if things haven’t gotten too far out of hand, one could turn things off—have an antidote, as it were.

Suppose at some future date that someone were being treated with a gene editing approach for a genetic disease, and things start happening suggesting that other genes than were intended to be the target were being altered.  Presumably one could intervene to treat or prevent the consequences.  Or suppose that genes were being edited to control a certain pest, like malaria-causing mosquitoes.  Presumably there could be an intervention to try to stop the process.

That’s a pretty superficial discussion, but technical experts in the field are trying to learn how to use these “kill switches” to control their gene-editing efforts. 

The also-superficial implication seems clear: these efforts should be understood, and applied in laboratory systems, then perhaps in “somatic” gene editing (treating an existing person for a genetic disease) BEFORE attempts are made to edit human embryos, whether the embryos are intended for gestation or birth or not.  Until things are MUCH more fully understood, there should be no direct work on heritable genome editing.

Chastening and enthusiasm about genome editing

A writer in Nature says that China sent a “strong signal” by punishing He Jiankui and two colleagues with fines, jail times, and bans against working again in human reproductive technology or applying for research funding.  (They lost their jobs as well and may not be able to do research work, presumably in any field, in a Chinese institution again.)  It is encouraging, this writer says, that China took this action demonstrating a commitment to human research ethics.  He and other researchers doing gene-editing work that is not ethically objectionable worry that there may be collateral damage, so to speak, against ANY gene-editing research in China.

Another writer in Nature says cites progress under “appropriate caution” for using gene editing techniques for so-called “somatic” gene editing; that is, editing disease genes in an existing person with that disease, to treat it.  This is, in essence, a form of gene therapy and is ethically permissible under proper research ethical guidelines.  Some clinical trials in progress involve injecting the gene-editing apparatus into a person, while most such trials remove the person’s blood cells, edit them in the laboratory, then re-introduce them into the bloodstream, after which the edited cells are left to mature normally.  The latter approach is particularly attractive to treat genetic blood diseases such as sickle cell anemia.

Both perspectives seem correct, as far as they go—never mind whether Dr. He’s jail sentence fits the crime, as Joy Riley asked on this blog last weekend.  Never mind also whether Dr. He’s research should be published; as Mark McQuain commented, it’s a bit incongruous to want to assess the technical merits of work that should not have been done in the first place.  He linked an opinion in Technology Review that argued, briefly, that because the ethics of editing genes in human embryos is under societal debate, people trying to decide on the ethical merits should be able to assess for themselves whether Dr. He succeeded, technically at what he set out to do.  (The consensus to date seems to be, no, he did not.)   But the role of technical success in assessing the ethical merits of a medical intervention—or, better, an intervention made in the name of medicine—depends on the degree to which the ethical judgment is a matter of making a reasonably reliable of risk and benefit, and the degree to which risk-benefit is a criterion for judging the ethical merits.  And therein, as they say, lies the rub—which I hope to revisit in coming posts.