The 14 day rule – A brief update

In early December, this blog commented upon the 7 December 2016 conference at University College London, which debated rethinking the ethics whether or not to increase the UK’s restriction on experimentation on human embryos from 14 to 28 days. One result of that conference is that the Progress Educational Trust (the sponsor of the original conference) has since submitted a request to the House of Commons Science and Technology Committee to open a new Parliamentary inquiry. That Committee’s response (in typical bureaucratic fashion) was to table the request until their current inquiry of genomics and genome editing was complete (see number 6 in their report).

In my Internet stalking of this issue, I came across a mid-January 2017 BBC Radio 4 two-part telecast coverage of the issue by Matthew Hill, which I commend to you. Each is approximately 30 minutes. Part 1 provides background information primarily regarding the general history of IVF in the UK in general and the history of the 14 day rule in particular, all done via present day interviews of the actual historical figures (or recorded interviews done at the time the events were transpiring). Note that the first 2 minutes are unrelated to the topic. Part 2 is similar, though concentrates upon the key persons in the current debate of moving from the present 14 day limit to a proposed new 28 day limit for embryo experimentation. If you don’t have time or inclination to listen to the whole series, consider the following snippets (time in minutes from start of each recording):

  • Part 1 – 12:00 – 15:00 – Baroness Mary Warnock discusses why she and the Warnock Committee settled on 14 days (arbritary, but a fixed number of days made more sense than a point in embryologic development that varied slightly from embryo to embryo). She also discusses why she pushed toward making research on embryos a criminal offense beyond 14 days rather than simply leaving the 14-day limit a guideline (Civil servants wanted it to be a guideline but she felt that making experimentation beyond 14 days a criminal offense would reassure the public in general and the opposition in particular)
  • Part 1 – 26:00 – 29:30 – Discussion of the Human Fertilisation and Embryology Authority. One interesting comment by Juliet Tizzard, director of strategy for the HFEA was that allowing public comment seemed to soften public opposition to IVF generally (she later comments in Part 2 that she wants to use the same strategy to push for increasing to the 28 day limit). Dr. Simon Fishel, pioneer in-vitro specialist, noted that the ethical debates decreased dramatically after the law was passed (now that it was legal, it must be ethically OK?).
  • Part 2 – 4:45 – 9:30 – Interview with Professor Magdalena Zernicka-Goetz, the scientist who recently developed the technique where embryos are chemically tricked into thinking they have implanted in the womb, which allows the embryos to grow beyond day 6 until day 13. Around the 7-minute mark, she comments on how beautiful the embryo is and describes the different parts of the embryo including the cells that will become the fetus. Narrator Matthew Hill explains that the embryos used are “surplus” embryos donated by “would-be mums” undergoing IVF (N.B. if there are would-be mums, there are likely also would-be babies about – see 7:55 onward)
  • Part 2 – 13:05 – 15:20 – Professor David Jones, Director of the Anscombe Bioethics Centre argues against extending the limit beyond 14 days, and makes the case that it should be more restrictive than the present 14 day limit.

While listening to the radio telecast, I learned that Nuffield Council on Bioethics met in London on 16 December with “experts from a range of fields” to further discuss many of the issues discussed at the original conference. The radio interviewer described his invitation to observe the one day conference as “exclusive access” which makes me think this was a closed door session (see Part 2 – minute 16:40). They indicate their report is forthcoming.

Finally, a recent YouGov poll in the UK indicated that almost half of those surveyed favored extending the limit up to 28 days. Which means that more than half did not.

I will keep this blog posted on any future developments

Autonomy and Time Travel

Autonomy, at the very least, means that no other human has more say in my decisions about my life than I do. By convention, autonomy requires an independent, uncoerced actor who has the cognitive capacity to make informed decisions. While I may have autonomy now, I can lose autonomy at a point in the future if I lose my cognitive capacity for making informed decisions. At that future point, it would be nice to be able to “time travel” back to an earlier point in my life when I had that autonomy and link that capacity, so to speak, into that future period and resume making autonomous decisions.

Absent time travel, Advance Directives are a present method whereby I have authority now (via my present capacity) to make informed decisions for some future time period in my life when I may not be capable of making those same decisions. It is an interesting concept really. I not only have authority over myself now but I have authority over myself in the future. If I have capacity in the future, I can overrule my past Advance Directives. Since time (or at least my experience of it) only moves forward [1], if I lose my capacity in the future, my last Advance Directive rules my day.

This got me wondering – What if time is bidirectional? The bioethical reason for wondering this is the mirror of the benefits with the Advance Directive. There are clearly earlier portions of my life in which I lacked capacity for making autonomous decisions (as did everyone reading this blog). That period begins at the moment of conception and extends in an indeterminate manner to a point when I suddenly have that capacity. In a universe where time is bidirectional, autonomy would permit (demand?) both Advance and “Recede” Directives. Having capacity for autonomy is the trump card in modern bioethical debates so it certainly seems in my best interest to extend my autonomous decision-making over as much of my life as I am able, ideally from conception to death.

Theoretically, time travel into the past is not impossible in our universe but it is loaded with problems too complicated to discuss in detail in a bioethics blog. But an intriguing thought about today’s blog topic is the possibility that one of you dear blog readers is actually a time traveler from our collective futures and can comment with some authority on the subject.

I am going to start working on my Recede Directives the moment you respond. Though if time travel in either direction is possible, I can wait and do it earlier.

[1] For some excellent though by no means light reading, I recommend “Time and Eternity” by William Lane Craig and “God & Time”, essays on the same subject, edited by Gregory Ganssle.

AI and the Trolley Car Dilemma

I have always hated the Trolley Car dilemma. The god of that dilemma universe has decreed that either one person or five people will die as a result of an energetic trolley car and a track switch position that only you control. Leave the switch in place and five people are run over by the trolley. Pulling the switch veers the trolley onto an alternate track, successfully saving the original five people but causing the death of a different lone person on the alternate track. Your action or inaction in this horrific Rube Goldberg contraption contributes to the death of either one or five people. Most people I know feel some sort of angst at making their decision. MIT has a website that allows you to pull the switch, so to speak, on several different variations of this dilemma and see how you compare with others who have played this game, if you enjoy that sort of thing.

Kris Hammond, Professor of Computer Science and Journalism at Northwestern, believes a robot would handle the trolley car problem far better than a human since they can just “run the numbers and do the right thing”. Moreover, says Professor Hammond, though we “will need them to be able to explain themselves in all aspects of their reasoning and action…[,his] guess is that they will be able to explain themselves better than we do.” Later in the article he claims that it is the very lack of angst regarding the decision-making process that makes the robot superior, not to mention the fact that the robot, as in the case of self-driving cars, would avoid placing us in the dilemma in the first place by collectively being better drivers.

For the sake of today’s blog, I am willing to grant that second claim to focus on the first: Is there really lack of angst and, if so, does that lack contribute to making the robot’s decision right and therefore superior?

Currently, no robot has sufficient artificial intelligence that might allow for self-awareness sufficient to create angst. Essentially, a robot lacks independent agency and as such cannot be held morally accountable for any actions resulting from its programming. The robot’s programmer certainly does and can. Presumably (hopefully) the programmer would feel some angst, at least eventually, when he or she reviews the results of the robot’s behavior that resulted directly from his or her program. Is the displaced decision-making really advantageous? Is the calculus inherent in the encoded binary utilitarian logic really that simple?

Watson, IBM’s artificial intelligence system, can finally best some human chess grand masters. Chess is a rule-based game with a large but not infinite set of possible moves. Could a robot really be programmed to handle every single variation of the trolley car dilemma? Are the five individuals on the first track or the single individual on the second track pastors, thieves, or some weird combination of both, one of whom recently saved your life? Should any of that matter? Who gets to decide?

Trolley car dilemmas seem to demand utilitarian reasoning. Robots are arguably great at making fast binary decisions so if the utilitarian reasoning can be broken down into binary logic, a robot can make utilitarian decisions faster than humans, and certainly without experiencing human angst. Prof Hammond claims the robots will simply “run the numbers and do the right thing”. But the decisions are only right or superior if we say they are.

Utilitarian decision-making is great if everyone agrees on the utility assigned to every decision.  But this is clearly not the case, as the summary results on the MIT website clearly show.  Further, I think that most normal people have angst over their own decisions in situations like these, even inconsequential decisions offered on MIT’s harmless website.  So in the case of the robot, the angst doesn’t occur when the robot is actualizing its program – it occurred months or years ago when the programmer assigned values to his or her utilitarian decision matrix.

Were those the right values? (hint: there is angst here)
Who gets to decide? (hint: even more angst here)

Secular Bioethical Mumblings of The Supreme Court

In the blog yesterday, Neil Skjoldal reminded us that bioethics will likely again play a role in the upcoming nomination process of Judge Neil Gorsuch to be an Associate Justice on the Supreme Court of the United States (SCOTUS). Why is this the case? To paraphrase Professor H. Tristram Engelhardt, I believe it is due in part to the inability of moral strangers to resolve bioethical and moral controversies. Consider the following:

While it is often said that one cannot legislate morality on an individual level, SCOTUS clearly has the final say on whether a particular law is deemed either constitutional, and therefore permitted to stand, or unconstitutional and therefore struck down. This is important because laws permit or proscribe activity and behaviors that naturally reflect our individual and group morality. Laws pertaining to abortion, assisted suicide and euthanasia are a few bioethical examples. Since we live in a secular, multicultural nation, rulings of constitutionality by SCOTUS are effectively stipulations of or rulings on morality, and so long as “We the People” agree to follow the Constitution, we agree to be bound by the Court’s judgment.

I find support for this concept in the legal writings of the late Arthur Leff, former professor of law at Yale Law School. He held that normative law or morality cannot exist without a transcendent, unimpeachable source, namely God. Who decides what is right and wrong in His absence? Leff responded as follows in Unspeakable Ethics, Unnatural Law:

As long as the Constitution is accepted, or at least not overthrown, it successfully functions as a God would in a valid ethical system: its restrictions and accommodations govern. They could be other than they are, but they are what they are, and that is that. There will be, as with all divine pronouncements, a continuous controversy over what God says, but whatever the practical importance of the power to determine those questions, they are theoretically unthreatening. It is only when the Constitution ceases to be seen as fulfilling God’s normative role, ceases, that is, to be outside the normative system it normally constitutes, or when, as is impossible with a real God, it is seen to have “gaps,” that a crisis comes to exist. What “wins” when the Constitution will not say, or says two things at the same time? … [Or, put another way], much of the time one can act as if there is, for constitutional determinations, a God, though He may occasionally mumble.

This is crucial because the justices of the Supreme Court are the only ones in privileged positions to interpret those mumblings for the rest of us. What is more troublesome though not surprising is they often understand those mumblings very differently, always settling conflict over their varying interpretations by a simple majority vote. The fact that five individuals can overrule four others and set the legal environment for our nation’s bioethical landscape for their 324 million neighbors is reason enough to desire, if not demand, bioethical acuity in applicants for those positions.

In his book, The Foundations of Bioethics, Engelhardt repeatedly makes the case that moral strangers are not able to resolve moral controversies through “sound rational argument or an appeal to moral authority”¹ , but added later that “…the decisions of limited democracies can create structures of moral authority…[but that authority]…will provide no substantive, nonprocedural moral instruction.”² In the future, SCOTUS may determine a constitutional right to assisted suicide, so long as proper informed consent is obtained. The determination of the rightness or wrongness of the decision will be argued in procedural rather than moral terms. Per Engelhardt, there can be no other secular bioethical determination.

To restate the obvious: it matters who is interpreting our constitutional mumblings as they are grounding our secular bioethics.

 

¹ H. Tristram Engelhardt, Jr., The Foundations of Bioethics 2d ed. (New York: Oxford Uiversity Press, 1996), p. 8.
² Ibid., p. 13.

Ethics of Coordinating Organ Transplantation with Ventilator Cessation in Terminal ALS

The decision not to receive further medical care in the face of a terminal disease is one that is generally honored if made by a fully informed, competent adult in the absence of outside coercion. Decisions to discontinue life-assisting devices already in place with that terminal disease, such as ventilators, feeding tubes and cardiac pacemakers, begin to complicate the decision as the process moves beyond a single autonomous negative decision by the patient to refuse further care to one that often requires other individuals to positively act to accomplish the wishes of the patient in question. In addition, honest disagreements can result in determining whether removing life-assisting devices simply allows death to occur naturally or causes death directly. The timing of the decision to remove a life-assisting device can become more ethically complicated when the individual with the terminal disease wishes to donate his or her organs.

Such was the case with Dave Adox, when at age 42, he was diagnosed with ALS or Lou Gehrig’s disease, a terminal neuromuscular disease that causes progressive muscular weakness resulting in death, usually by respiratory failure, in 2 to 5 years. Within 6 months he was quadriplegic and completely dependent upon his family for all care. He eventually required a ventilator and was able to communicate only by eye movements. By age 44, his eye movements were becoming limited, making it difficult to communicate. He decided that he did not wish to continue to use the ventilator to prolong his life if he could no longer communicate. He had the support of his family and physicians. He had one other goal prior to his death – He wanted to donate his organs.

The problem was that Dave Adox would have to be admitted to a hospital to be able to donate his organs immediately after he turned off his ventilator. He received the support of his treating physician, the local hospital’s palliative care team and the local hospital’s ethics committee. He ran into a roadblock with the hospital’s attorneys, who argued that the process was uncomfortably close to assisted suicide. Within weeks, Mr. Adox was able to find another hospital that permitted his admission to their palliative care floor, assisted with the organ donation process, and allowed him to turn off his ventilator.

Ignoring the organ donation issue for the moment, Mr. Adox’s decision to turn off his ventilator in the face of his irreversibly deteriorating neuromuscular condition seems reasonable to me. He was making an informed, uncoerced decision to remove his ventilator as his worsening eye movements threatened his ability to communicate, a situation he considered too burdensome to warrant continued use of the ventilator. The use of a ventilator in the treatment of ALS is never mandatory. Elective use of a ventilator should always include the option to discontinue its use when an individual determines that its further use creates a burden they no longer wish to bear. Continued use of the ventilator in Mr. Adox’s case would not have prevented further deterioration of his ALS. In fact, continued use of the ventilator would likely have allowed him to live long enough to become “locked-in”, a condition where a person is alive, alert and aware, but unable to meaningfully communicate that awareness or one’s future needs to the outside world. With the impending loss of eye movements, Mr. Adox was approaching the “locked-in” state. Discontinuing the ventilator allowed the ALS-induced muscular weakness to cause his natural death via respiratory failure.

I believe the foregoing to be a distinctly different category from assisted suicide where the individual requires the addition of medication to suppress his breathing or terminate his heart rhythm to cause death rather than the death resulting from the disease process directly. That is, the process of the assisted suicide is the proximate cause of death, not the background disease. I appreciate that others may view having ALS at any stage as a burden too much to bear but I am unwilling to act to cause their death prematurely distinct from the disease process itself (See LINK for current study of ALS physicians and their views on assisted suicide – article requires subscription).

If you agree with me that Mr. Adox ought to be able to decide that he had reached a point that he wished to turn off his ventilator, does his decision to donate his organs change this situation to assisted suicide, as was the concern of the local hospital’s legal team? I do not believe it does. He was not turning off his ventilator “just so” he could donate his organs but rather because he had reached a point where continued ventilator use was a burden he no longer wished to bear. The organ donation was not the primary intent of discontinuing the ventilator. I view this in a manner similar to the intention of using pain medication in terminal cancer care: the intention of palliative medication is to provide pain relief during the dying process not cause the dying process, though it can. The intention of discontinuing the ventilator is to allow ALS to cause death naturally not provide organs for transplantation, though it can.

Should it?

CGI Turing Test

[Star Wars fans spoiler alert: The following contains potential story information from “Rogue One: A Star Wars Story”, the Star Wars Episode IV prequel]

I confess that I am a Stars Wars geek in particular and a science fiction movie buff in general. Like many, I am old enough to have seen the first Star Wars movie at its 1977 release, before it was re-indexed as “Episode IV: A New Hope”. The computer generated imagery or CGI special effects in that movie revolutionized the science fiction genre. It is now commonplace to use CGI to accomplish all manner of special effects, transporting moviegoers into all sorts of fantastic virtual worlds and virtual characters that appear, frankly, real. Rogue One has taken CGI up to the next level with one particular character such that I would argue that Rogue One has passed what I am calling the CGI Turing Test.

The original Turing test was described by Alan Turing, a famous British mathematician who designed and built a mechanical computer in the 1940s that successfully decoded the Nazi Enigma machine, a previous unbreakable encoding device that had thwarted Allied efforts to eavesdrop on the Nazi military communications. The Turing test is commonly misconstrued as a test of a computer’s (artificial) intelligence, which it is not. It is actually a test to determine whether a computer can imitate a human well enough to convince an actual human that it (the computer) is human. This test was a variant of a party game known as the “Imitation Game” in which a man (person A) and a woman (person B) would try to convince a third party, called the interrogator (person C) who was in a separate room, that each was the other. The Turing test substitutes a computer for person A.

Rogue One plays a similar game. There is a character in the Star Wars films named Grand Moff Tarkin, a very evil general in the Empire played by British actor Peter Cushing. Cushing debuted his Grand Moff Tarkin character in the original 1977 Star Wars movie. He is again seen reprising this role in the new 2016 Rogue One installment. I thought he was as awesome as ever. Except that he wasn’t. Peter Cushing died 22 years ago in 1994. I promise if you watch Rogue One and put yourself in the role of person C, the interrogator, you will be convinced that the CGI Peter Cushing (person A) is the real Peter Cushing (person B). So, the Academy Award® for Best Actor in a supporting role goes to…a computer at Industrial Light & Magic?

What has this to do with bioethics in general or artificial intelligence in particular? Perhaps not much. The futurist Ray Kurzweil argued in his book “The Singularity is near” that a machine will pass the Turing test in 2029 and perhaps this will come true, though his previous predictions have been called into question. In keeping with this AI/Turing Test theme, I gave the gift of “Google Home” and “Alexa” to different family members this Christmas. I was pleasantly amazed by the speech recognition of both systems and fully expect the technology to rapidly improve. Despite this, the forgoing discussion, and the knowledge that Turing and Kurzweil both disagree with me, I remain convinced that our ability to create a computer to imitate a human, the Imago Hominis, so to speak, will always fall far short of His ability to create a human to reflect Himself, the Imago Dei.

As the interrogator, what do you think?

The 14-day rule: Time to double down?

The “world’s leading scientists” gathered at University College London on 7 December 2016 to explore extending the 14-day limit on embryo experimentation from 14 days to 28 days. Presently the consensus of that meeting is not known. The Guardian has published a nice summary of the background and future implications of the issue (link HERE). Jon Holmlund offered his comments in this blog back in May when researchers artificially grew human embryos to 13 days gestation. Since this issue is back in the news, a few additional thoughts are offered below.

Space does not permit a detailed history of the details of the discussion behind the original 14-day rule endorsed by the Warnock Committee in the UK (see HERE for one such extended summary). The original limit was arbitrary but coincided with the development in the embryo of the primitive streak, a precursor to the nervous system, such that experimentation on an embryo before this stage was believed to eliminate the possibility of that embryo experiencing pain. The implementation of the 14-day rule essentially permitted experimentation to proceed resulting in the successful development of IVF.

Regardless of the ethics, the 14-day rule has been a hard barrier scientifically until just recently. Just because we can breach the 14-day barrier, why go beyond? Allowing experimentation on the embryo out to 28 days would allow scientists to learn about the process of gastrulation, the process that lays down the body plan and where the three tissue layers (ectoderm, mesoderm and endoderm) begin to subspecialize. If we have ethically permitted experimentation on embryos up to 14 days gestation, shouldn’t we just nudge it out a little further?

To quote Jon Holmlund: “In the name of God, forbear!” Interestingly, for different reasons, Mary Warnock agrees with him. Per the Guardian article, she worries:” If we raise the limit, objectors could argue that the 14-day rule has remained intact simply because no researcher had the technique to keep an embryo alive for so long, and that now one has been discovered the rush down the slippery slope will follow. They will say: ‘We always knew that the slippery slope would prove itself.’”

Experimentation on a human embryo at 14 days of gestation is still experimentation on a human being made in the image of God. Perhaps the upcoming debate on extending the 14-day rule will actually result in Warnock’s fear, that we agree that the original 14-day limit was indeed too long to be slipping and sliding?

Pre-Existing Conditions 2.0

Back in 2005, Dr. Ezekiel Emanuel co-wrote an article with Dr. Victor Fuchs entitled “Getting Covered”, where the authors described three factors necessary for major healthcare reform: the problem attracts political attention; major players agree upon a refined and feasible solution; and a transforming political event occurs. Their criteria were met with the election of Barack Obama and a Democrat-controlled Congress in 2008, resulting in Obamacare. Their criteria have been met again with the election of Donald Trump and what will be a Republican-controlled Congress (and perhaps future right-leaning Supreme Court). The result is yet to be determined.

Dr. Emanuel has lately been making the rounds on the various networks performing what some might consider the Sisyphean task of defending large portions of Obamacare against the Republican future. In doing so, he points out that several facets of Obamacare are popular with the public and therefore difficult to repeal. The most interesting is the elimination of pre-existing conditions as a pretext for denying insurance coverage, a necessary requirement for universal coverage. Interestingly, Mr. Trump has stated that he wants to keep the Obamacare pre-existing condition reforms.

Pre-existing conditions are the anathema of insurance risk pools. Including individuals with pre-existing conditions in any risk pool necessarily increases the medical costs in that pool. Increasing the size of the pool(s) by encouraging other healthy, low-risk people to join the risk pool relatively reduces the costs by distributing medical costs more broadly. Obamacare included a mandate/tax/fine for those that would not heed the encouragement. Despite this, most people have seen their insurance costs increase significantly. Mr. Trump claims he does not like the mandate and can eliminate it and still reduce costs by making the insurance market more competitive (such as allowing insurers to compete across state borders). Others argue for a consumption tax to increase revenue (see the Emanuel article above). The success of such plans in mitigating costs are yet to be determined.

The other major way to reduce the medical expenditures of a riskier pool is to begin to reduce the services and conditions that will be covered in that pool; that is, to ration care. This is an emotional topic as many of us have already had personal experience with being denied a service we expected to be covered. But it is a necessary topic to examine given finite financial resources, what Dr. Emanuel described in his article as a Rawlsian sense of justice, as “health care is not the only vital service”. A person with a Christian worldview may come to a different conclusion of justice from Professor Rawls. Deciding the appropriate ethical calculus to use to make these decisions is a topic for many other blog entries.

Politically, on both sides of the aisle, we seem resigned to answering the ethical question of whether healthcare should be a right by answering in the affirmative. The hard work is now determining what medical care obligations we are willing to require to actually meet that right. The ethics of those decisions are yet to be determined.

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

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.