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.

Revisiting the definition of death

By Jon Holmlund

The Hastings Center shows Christmas Day 2018 as the date of publication of its report, “Defining Death: Organ Transplantation and the Fifty-Year Legacy of the Harvard Report on Brain Death,” arising from a 2018 conference of the same title at Harvard Medical School.  The full contents are freely available at the link above.  The occasion for the conference was the 50th anniversary of the 1968 report that defined brain death as one way to determine, alongside the more traditional use of cessation of the heartbeat and breathing, whether a person had died.  Report contributor Robert Truog puts it this way: brain death can be thought of as “permanent apneic [absence of breathing] unconsciousness.”

Subsequent to the 1968 report, the Uniform Determination of Death Act, formulated in 1981, stated that a human has died if there is either irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain, including the brain stem.

Initially, according to one retrospective, the 1968 report was motivated mostly by a desire to determine when intensive medical care of a comatose person could be stopped and still be consistent with the aims of medicine, and, indeed, avoid a murder charge.  Nowadays, we often associate the use of the brain death criteria with the decision to harvest the decedent’s organs for transplantation, but that is said to have been a secondary concern in 1968, probably reflecting the state of organ transplantation at the time, as opposed to after the ensuing 50 years of development.

One reviewer in the report worries that concern about the use of brain death criteria has become “too philosophical,” as it were; the 1968 conferees were not trying to define death analytically, but prudentially, to guide the practice of medicine.  So contemporary critics shouldn’t be too harsh in their hindsight.  However, Robert Veatch counters that to ask whether the brain has irreversibly stopped functioning is not the same as to ask whether we should treat individuals with dead brains and beating hearts as dead humans.  He further comments that, since the brain also acts in some sense as a gland, secreting hormones, the current ways of determining brain death may not take that into account.  He identifies three broad approaches to defining death:  circulatory/somatic, whole-brain, and higher brain.  He lists at least six current significant disputes about brain death: whether patients and families should have the right to refuse treatment; which criteria to use to determine brain death; whether those criteria actually assess all the functions of the brain; whether doctors apply the criteria accurately and consistently, without excessive error; whether brain death as currently determined is truly irreversible; and whether whole-brain criteria should be favored over criteria around blood circulation or criteria that focus, more narrowly than whole-brain death, on higher-brain functions including loss of consciousness and associated loss of integrated function of body and mind.

Sections of the new report include essays reviewing and offering a contemporary critique of the concept of brain death, a discussion of whether “donation after [brief] circulatory determination of death” (DCDD) is an acceptable approach to obtaining vital organs for transplantation, whether the “dead donor rule”—briefly, the idea that one’s organs should not be removed from one’s body for transplantation into another person until that one (the proposed donor) has died—should be followed, using brain death to inform law and public policy, the future of xenotransplantation (specifically, transplanting animal organs into humans, known as xenotransplantation), and reflections on the case of Jahi McMath, the girl who was declared brain dead in 2013 after complications of a tonsillectomy, but whose body was subsequently kept alive at her parent’s behest until bodily functions finally failed to the point where she was declared dead to the agreement of all concerned in mid-2018.

There is much to consider here—particularly alongside the 2008 report, “Controversies in the Determination of Death” by the then-President’s Council on Bioethics.  Candor requires that your correspondent has in the past argued on this blog for the dead donor rule and has expressed concern about potential overzealous use of the “DCDD” approach by transplant surgeons in a hurry to procure organs for transplant to a needy, waiting recipient.  But a revisiting of the matter is in order, and a matter for future posts.  In the meantime, the cited reports are readily available on the internet for review by all interested parties.

Self-Awareness, Personhood and Death

By Mark McQuain

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

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

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

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

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

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

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

Facebook & Ethics

Most of us probably know that Facebook keeps track of its users.  Its programmers have created algorithms that can guess our preferences in all sorts of areas, even in politics.  Most of us probably also know that Facebook has come under scrutiny for its actions (or non-actions) during the previous election cycle. Its founder, Mark Zuckerberg, has made appearances before Congress in order to try to explain his company’s behavior.  At first he denied there was any problem, and then as evidence mounted, he began to acknowledge that Facebook should have done better in exercising oversight.

Recently, both The New York Times and The Washington Post have reported on Facebook’s approach to mental health, specifically as it relates to its users’ potential risk of committing suicide.  Facebook programmers have created algorithms that have been used to monitor its users for potential suicide risks.  In some situations, they have called authorities in order to address users whose online postings made them seem like they were in immediate danger.

Understandably, Facebook has resisted regulation.  With a motto like “Move fast and break things,” it is easy to comprehend why it would not want any regulatory activity at all.  However, mental health is a serious matter and the suicide rate in the United States is alarmingly high.  This seems to be qualitatively different than Facebook knowing what kind of vacations I prefer or what kind of automobile I drive.

In his Washington Post op-ed, attorney Mason Marks writes:” Facebook is losing the trust of consumers and governments around the world, and if it mismanages suicide predictions, that trend could spiral out of control. Perhaps its predictions are accurate and effective. In that case, it has no reason to hide the algorithms from the medical community, which is also working hard to accurately predict suicide. Yes, the companies have a financial interest in protecting their intellectual property. But in a case as sensitive as suicide prediction, protecting your IP should not outweigh the public good that could be gained through transparency.”

There are several ethical issues at play here.  Do Facebook users have any idea of what the company is doing with their information?  Can a non-medical company be involved in the “practice of medicine” (Marks’ term) without any meaningful regulation?  What should Facebook be allowed to do with the very personal mental health information that it gathers from its users?

Every generation wrestles with doing ethics in light of rapidly developing technology. In 2019 that conversation continues at even a quicker speed.