The Prognosis for Whole Brain Death is…

Recent court proceedings bring the case of Jahi McMath back into the bioethical news. As you will recall, she had medical complications following a surgical procedure in 2013 and was declared brain dead. The family argued for continued life support, which the hospital denied (since she met the criteria for whole brain death). After much legal wrangling, she was transferred to New Jersey, where she remains alive on ventilator and nutritional support. This case has been reviewed in this blog (here and here). Professor Thaddeus Pope has followed this case from a medicolegalethical standpoint on his Medical Futility Blog, which is generally where I keep up with the case. His catalogue of the legal proceedings is complete, and while I disagree with many of his bioethical positions, I appreciate his rational discussion of those issues. For the remainder of this blog, I wish to focus upon the issue of brain death in the case of Jahi McMath and specifically our ability to accurately determine it.

No one, and as far as I can tell I mean absolutely no one, denies that Jahi met the criteria for whole brain death by late 2013. Her EEG was isoelectric (flatline – no brain electrical activity), radioisotope cranial blood flow studies showed no cortical blood flow (which normally results in cell ischemia, and, if not immediately corrected, brain cell death), brainstem auditory evoked responses (BAERs) were absent (usually indicating future inability to receive auditory input even if there were an otherwise healthy brain ready to receive that input) and somatosensory evoked potentials (SSEPs) were absent above the neck (usually indicating inability to receive sensory input from the body). As a result, she met the criteria for whole brain death in California and was issued a death certificate. Since that declaration, she has shown signs of entering puberty (which requires a minimally functioning portion of the brain called the hypothalamus), her heart rate has been noted to change when she hears her mother’s voice (which should not be possible given her BAER results) and she has moved her right arm to verbal command (an act that would require the ability to receive the auditory input, left hemisphere cortical brain processing of that input, signal transfer within the left hemisphere of the brain to the motor area that controls the right arm, and finally signal transfer down through the brainstem to the portion of the spinal cord that controls the right arm). If any of those are true, Jahi McMath fails to satisfy the criteria for whole brain death. Here is the testimony of Dr D.Alan Shewmon, emeritus professor of pediatric neurology at UCLA and an expert in pediatric brain death. His 26-page testimony provides an excellent discussion of the problems of determining whole brain death, particularly in the case of Jahi McMath.

The problem of potential reversibility after a determination of whole brain death hits home professionally for me. I have cared for patients in an inpatient rehabilitation hospital setting who suffered severe head injuries, as well as consulted on several more who never made it our rehabilitation hospital because of brain death. This included assisting in the discussion of whether to discontinue ventilator, nutrition and hydration support following a proper determination of whole brain death. And, while I think similar discussions are reasonable in individuals sustaining injuries leaving them in a persistent vegetative state (PVS, i.e. having brain function that only acts reflexively without awareness or capability for any cognition, perhaps a better description of Jahi McMath’s current status), no such discussion should happen until brain recovery has reached its maximal endpoint. With whole brain death, those discussions can happen immediately because that endpoint has been reached. Dead brains, by definition, do not recover.

Until now?

The initial determination of whole brain death in Jahi McMath appeared proper.

If the reports of her responsiveness are true, Jahi McMath clearly no longer meets the criterion for whole brain death. The very fact that she has remained alive over three years after the determination of whole brain death argues against whole brain death. Artificial life support has advanced but not to the degree that we can mimic all of the routine vegetative functions controlled by the brain necessary to keep the body alive. It is “easier” to keep an individual in PVS alive because the brain is still doing a large part of its bodily maintenance/regulation work.

At the very least, even if none of the above observations of Jahi McMath are true, the prognosis for whole brain death, while still very, very, very poor, is no longer zero.

Healthcare Insurance vs. Healthcare coverage?

Kimberly Strassel wrote an interesting piece in the WSJ entitled “The Simplicity of a Health Deal” (Link here – subscription required). I don’t think she was saying that crafting legislation to resolve all of America’a healthcare issues was easy, she was making the political point to Senate Republicans that, like it or not, no future legislation will be possible unless they agree to continue the ObamaCare provision of eliminating insurance proscriptions for pre-existing conditions. She cited a YouGov poll that showed 77% supported protections for those with pre-existing conditions as an example of the public support for this provision.

The problem with pre-existing conditions is that they cost more money to insure than not-yet-existing conditions. This fact is the primary reason for the unpopular provision of Obamacare – The Mandate (or tax, if you like). If you delay buying insurance until your not-yet-existing condition becomes an exiting condition, what exactly are you insuring? This “gaming the system” is illegal and for good reason. Without the mandate (that everyone buy some minimal level of insurance), insuring pre-existing conditions is very expensive. Insuring pre-existing conditions has turned out to be more expensive than anticipated, even with the weak mandate/tax, and insurance providers have been and are continuing to leave Obamacare, further reducing insurance options in many states. Failure to make significant changes in the present law (i.e. leaving Obamacare as is) would likely result in further reduction in the number of insurers and the cost of their products.

I find it odd that we continue to refer to ObamaCare or whatever the new Republican iteration will be as health insurance. Wikipedia describes insurance as a form of risk management primarily used to hedge against the risk of a contingent, uncertain loss. Life insurance and car insurance are good examples. Premiums charged for these types of insurance policies are based upon one’s risk or lack thereof, as well as how much risk an individual wished to mitigate. Essentially, these are catastrophic risks we are taking about. Healthcare insurance has morphed into healthcare coverage. We expect our health insurance to pay for everything that has to do with accessing a healthcare provider: routine office visits, medications, emergency/trauma care and end-of-life support, to name but a few. That would akin to asking our car insurance to not only handle major accidents but also gas and oil purchases.Of course, taking the car insurance analogy to its logical conclusion suggests that just as there are some people that have such a terrible driving history that they simply are not insurable, there are similar people who are not insurable based upon their terrible health history. Eliminating pre-existing condition proscriptions effectively turns the insurance model on its head as a means for risk mitigation.

If we are going to eliminate pre-existing conditions, we are essentially agreeing healthcare insurance isn’t the way to pay for healthcare, at least the essential aspects, whatever those are. We are also agreeing that those essential aspects are basic rights, without an open and honest agreement on exactly how to pay for those rights. We need to have the discussion of what exactly constitutes basic or minimal healthcare rights and then we need to have the discussion about how to obligate those providing those rights (required as part of licensure, reforming malpractice, adjusting reimbursement, etc..).

My “Happy Fourth of July” daydream is that Congress would have such a debate, aided perhaps by many bioethicists from many persuasions. Tomorrow, I will wake up and go back to work.

Voltaire and Alternative Definitions

“If you wish to converse with me,” said Voltaire, “define your terms.” How many a debate would have been deflated into a paragraph if the disputants had dared to define their terms! This is the alpha and omega of logic, the heart and soul of it, that every important term in serious discourse shall be subjected to strictest scrutiny and definition. It is difficult, and ruthlessly tests the mind; but once done it is half of any task. (Will Durant, The Story of Philosophy, New York, Garden City Publishing Co., Inc., 1926, page 67)

My reach for Voltaire was caused by a June 14, 2017 Perspective in the New England Journal of Medicine by R. Alta Charo, JD, Professor of Law and Bioethics at the University of Wisconsin Law School. In the article, she is concerned that many new executive branch appointees are purveyors of alternative science, “rife with alternative definitions of well-understood medical conditions and characterized by rejection of the scientific method as the standard for generating and evaluating the evidence.” For the remainder of the blog, I wish to focus on the latter half of her article regarding pregnancy, contraception, and abortion (and abortifacients). I will make the case that Professor Charo is wounded by her own sword.

Her concern is that those physicians, nurses and pharmacists claiming “conscious clause” refusals to “prescribe or provide hormonal contraceptives, emergency contraceptives, and IUDs because they oppose abortion” are wrong because, according to her, none of these can cause an abortion. Per Charo, a pregnancy is defined as the time from implantation of the zygote in the uterus until birth. Abortion is the termination of a pregnancy. Therefore, the term “abortion” can only be used to discuss the time from zygote implantation until birth, and, though conceding that IUDs “can also prevent implantation”, states these methods “do not interrupt pregnancy, and a drug or device that prevents fertilization or implantation is a contraceptive, not an abortifacient.”

There are several problems with her choice of definitions and her consistency of definition within the article itself. Pregnancy can be defined in several ways. Most healthcare providers still use the last menstrual period (LMP) to begin the count for the determination of gestation age. In Vitro Fertilization (IVF) and Assisted Reproduction Technologies (ART) can obviously pinpoint the exact timing of fertilization, thus providing an accurate fertilization age; gestational age is then calculated as fertilization age + 14 days. Lastly, pregnancy can be defined beginning at the time of implantation of the zygote to the lining of the uterus, roughly 7-10 days after fertilization. Under this definition, according to trusty Wikipedia, “during the time between conception and implantation, the future fetus exists, but the woman is not considered pregnant.” It is this last definition that Professor Charo clings to in her argument in the latter half of her article. The problem is that she relies upon the first definition only two paragraphs earlier in arguing: “the fetus does not have the physiological (let alone the psychological) capacity to experience pain until at least 24 weeks gestation (as properly estimated from last menses).”(emphasis mine)

The problem in this particular case is what do we believe to be the moral status of the zygote between conception until implantation (during the time frame outlined in this diagram)? Professor Charo is not ignorant of this time period as she parenthetically comments: “Roughly half of all blastocysts naturally fail to implant, but getting one’s menstrual period is not having a miscarriage.” Fine, but is it something else entirely to intentionally, knowingly cause the blastocyst to unnaturally fail to implant? Does she have a definition for that?

The mechanism by which levonorgestrel (LNG, the active ingredient in Plan B) is successful when used as an emergency contraceptive (“morning after pill”) is that it prevents ovulation (release of a potentially fertilizable egg), though it was originally thought to also prevent implantation. Professor Charo cited a 2001 study that observed no change in the endometrium of surgically sterilized women who took LNG. A summary of more recent studies has continued to argue that implantation is likely not effected by LNG, but summarized that “it is not scientifically possible to definitively rule out [that mechanism]”. From the same summary paper regarding IUDs: its “very high effectiveness implies that emergency insertion of a copper IUD must be able to prevent pregnancy after fertilization” (that is before implantation).

The union of a human egg and a human sperm, whether in utero or in vitro, results in a unique new human being. That is a scientific fact regardless of one’s definition of pregnancy. As such, I believe this new human being deserves the same moral safeguards as anyone reading this blog. The fact that this unique human being does not implant in the womb for up to 9 days post conception ought not alter these moral protections. In castigating physicians, nurses and pharmacists who raise moral objections to the intentional termination of the life of any human being prior to implantation by accusing them of using “alternative definitions of well-understood medical conditions”, I believe Professor Charo is guilty of the same crime. Her definitions do nothing to improve the environment for an open and honest discussion of the moral question at hand, namely: Is it right to intentionally terminate the life of a human being after fertilization but before implantation?

Tom Garigan covered this general topic very nicely in a previous post on this blog back in September 2015, which I encourage you to (re)read. He offered a similar soft nod to Voltaire in his title.

Also, extrapolating from the definition in Wikipedia, any “future fetus” is a “right now” human being. And “right now” is the time to start defining our terms more clearly so we can have the type of conversation that Voltaire had in mind.

Bioethical Jets and Sharks

Recently, Professor Craig Klugman called on the President to set up his Presidential Bioethics Commission. He provides a nice history of Presidential Bioethics Commissions dating back to President Ford. The link to that article is HERE. Other than the usual implication that the President may not be intellectually up to the challenge, I agree with Professor Klugman that there are many pressing bioethical issues that will or ought to affect policy in the not-too-distant future, so I also join the chorus to call for the President to set up his bioethics commission.

Professor Klugman’s plea for such a commission followed an earlier one by Wesley Smith, who called for a “populist” bioethics commission. He admits to desiring a less intellectual or less philosophical commission so we are not limited to receiving only “arcane advice”, preferring instead to have “the verbal equivalent of West Side Story’s knife fight between the Jets and the Sharks.” I admit that a commission with that type of energy would be fun to follow and certainly generate more public awareness of bioethics.

This got me to wondering: What do the readers of this blog consider to be the most pressing bioethics issue? Specifically, if the President listens to Wesley Smith and appoints you to the populist Presidential Commission on Bioethics, what is the one issue you want to make sure makes the list for 2017-2020?

For me, I favor a robust re-examination of what we as a country will permit or proscribe in embryological research, particularly within the first 28 days of the life of the embryo. Within this blog, Jon Holmlund has outlined nicely the technological advances outpacing bioethical consensus in the area of Synthetic Human Entities with Embryo-like Features (see SHEEFs Part 1 and Part 2) and Steve Phillips recently highlighted similar issues in the field of IVF (HERE) just to name a few.

So what is the number one bioethical issue on your list?

And remember, if Wesley Smith’s description of the potential energy in those future debates is accurate: You may want to bring more than a knife to the fight (verbal equivalently speaking, of course…)

Inner Sense and Gender Dysphoria

Steve Phillips posted on “Caring for people with gender dysphoria” almost one year ago. In his post, he referenced a talk at a previous CBHD Summer Conference by Prof. Robert George, where Dr. George posited that the concept that the belief that one’s gender is based one’s innate or inner sense rather than one’s biological/physical sex is rooted in the Gnostic idea that human beings consist of a personal mind that lives in a non-personal body and that this stands in contrast to the longstanding Christian understanding of unity of non-material soul/spirit and material body making up the whole person. I did not attend that talk but offer a recent paper by Dr. George which covers the same ground as backdrop to this post.

The reason for the discussion of Gnosticism related to an earlier point in that same blog referencing the opinion of Dr. Paul McHugh, retired psychiatrist at Johns Hopkins University, who has over the past few years published comments arguing that gender dysphoria is a result of disordered thinking, that is, a mental disorder, requiring treatment, not surgery to complete a gender transition. Dr. McHugh has made much of the fact that Johns Hopkins, despite being an early leader in gender transition surgery, decided very early on that gender transition surgery was not sufficiently efficacious and discontinued the practice.

What a difference a year can make. Johns Hopkins has recently decided to resume what they are calling gender-affirming surgery and specifically point out that when “individuals associated with Johns Hopkins exercise the right of expression, they do not speak on behalf of the institution.”

Johns Hopkins is not alone. A very recent Perspective in the New England Journal of Medicine called “The Future of Transgender Coverage” by Kellan Baker commented that there has been “a rapid increase in insurance coverage for health care services related to gender transition.” Baker offered three reasons to account for this increase: “a growing expert consensus on the medical necessity of gender transition, new legal interpretations prohibiting insurance discrimination against transgender people, and mounting evidence that transgender-inclusive coverage is cost-effective.”

For the sake of the remainder of this blog entry, I want to focus on the first claim: Is there a growing expert consensus on the medical necessity of gender transition?

Gender dysphoria is the term used in the Diagnostic and Statistical Manual of Mental Disorders to describe the clinically significant stress that can occur in a transgender person, one who experiences a discrepancy between one’s innate sense of gender identity and one’s birth sex. Baker says the current standard of care for treating gender dysphoria is gender transition, “which may include mental health counseling, hormone therapy, and reconstructive surgeries affecting primary and secondary sex characteristics.” The source provided for the standard of care claim is a 2012 article in the International Journal of Transgenderism (see here for abstract link – full article requires subscription). Baker supported the growing expert consensus claim by providing a list maintained by Lambda Legal of several major US medical associations consensus statements insisting on health insurance coverage in general for treatment of gender dysphoria, a smaller portion specifically stipulating that coverage include gender transition.

What data is being used to determine whether gender transition is medically necessary to treat gender dysphoria? Available research articles or meta-analyses of these research articles on the long-term outcomes of gender transition is actually less definitive. Most studies are too small to have statistical power, not surprising given the small number of transgender people. Another problem with most studies is lack of a control group. The ideal control group would be a group of transgender people who requested but did not receive gender transition. A third problem is the lack of bias-limiting randomization (though how could one ever ethically design a study where sex-reassignment was done randomly to some patients but not to others?) A summary of the recent research and meta-analysis may be found in a 2016 review article by Lawrence Mayer and Paul McHugh in “Sexuality and Gender” in The New Atlantis (see pages 108-113). Mayer and McHugh conclude their summary by stating they remain skeptical of the efficacy of gender transition in treating gender dysphoria, which has resulted in largely negative and some frankly ad hominem attacks. I was surprised by that response, as the summary includes the meta-analysis by Mayo Clinic researchers Murad et. al., which was arguably pro gender transition regarding self-reported measures reporting some improvement in gender dysphoria, and the large study by Dhejne and colleagues at the Karolinska Institute and Gothenburg University, though showing high suicide rates in sex-reassigned persons (though not suggesting the high suicide rate was caused by the gender transition surgery), went so far as to comment that “things might have been even worse without sex reassignment”. Their study specifically did not address the question of whether gender reassignment alters gender dysphoria.

After conducting my own non-scientific survey of readily available scholarly articles related to gender transition for adult gender dysphoria published since 2016, most of which consisted of small sample, non-randomized, mostly non-controlled studies, I am willing to concede that the majority do state that gender transition reduces gender dysphoria.

But if the gold standard for gender is an individual’s inner sense regardless of that individual’s biological sex (or any other physical/material trait), what objective measure may a researcher reliably use to determine the effect of physical gender transition on gender and gender dysphoria? Per Dr. George (emphasis his):

What is a pre-operative “male-to-female” transgender individual saying when he says he’s “really a woman” and desires surgery to confirm that fact? He’s not saying his sex is female; that’s obviously false. Nor is he saying that his gender is “woman” or “feminine,” even if we grant that gender is partly or wholly a matter of self-presentation and social presence. It is clearly false to say that this biological male is already perceived as a woman. He wants to be perceived this way. Yet the pre-operative claim that he is “really a woman” is the premise of his plea for surgery. So it has to be prior. What, then, does it refer to? The answer cannot be his inner sense. For that would still have to be an inner sense of something—but there seems to be no “something” for it to be the sense of.

It takes a Village to…make… a Child?

Depending upon your political persuasion, Hillary Clinton is either famous or infamous for popularizing the concept that it takes a village to raise a child. Taking the village’s influence back to the point of conception, Assisted Reproductive Technologies (ART), specifically a potential novel combination of human Induced Pluripotential Stem Cells (hiPSCs) and in vitro gametogenesis (IVG), just might make it possible for that same village (that is, more than two parents) to actually make the child.

Jon Holmlund has written extensively in this blog regarding both the technique and ethical considerations of hiPSC and more recently human extended pluripotential stem cells (hESCs) (e.g. see here for a recent example). Roughly, hiPSCs/hESCs create stem cells (cells that have the potential to become any other cell in the human body) from common cells such as adult skin cells. IVG is the process that has the potential to change the hiPSCs/hESCs into gametes (eggs and sperm) which then can be combined via in vitro fertilization (IVF) to make a baby. If the process can be reliably perfected in humans, there would be no physical barrier for a single individual, non-fertile heterosexual couple, homosexual couple, or frankly any number of people to have a baby that is his/her/their genetic offspring (see summary here for ethical arguments fully supportive of these techniques and here for legal arguments both pro and con). We have already crossed into the concept of group parenting with maternal spindle cell transfer used to prevent mitochondrial disease (the so-called three parent babies). With IVG, we needn’t stop at just three parents (from the Palacios-Gonzalez et. al. link):

“IVG could permit instead a much more substantive sharing of genetic kinship, through what is in essence a generational shortcut. Imagine that four people in a relationship want to parent a child while being all genetically related to her. IVG would enable the following scenario: first, two embryos would be generated from either couple through IVF with either naturally or in vitro generated gametes. hESC lines would be then established from both embryos and differentiated into IVG to be used in a second round of IVF. The resulting embryo would be genetically related to all four prospective parents, who would technically be the child’s genetic grandparents.”

There is a huge amount of ethical ground to consider with these technologies and most will be left to future blog-space. Let’s just consider one aspect. Traditionally, a heterosexual couple wasn’t really a family until they had a baby. ART is allowing (and perhaps will soon further allow) our culture’s expanding definition of what constitutes a family to have a baby that is his/her/their genetic offspring. So is ART driving an expanded definition of family, or is our expanded definition of family, in some sense, driving ART? Should we be asking a village to make a child?

The Forgotten Woman of Socialized Medicine [1]

In Sweden, there is an ongoing battle in midwifery between conscience rights and abortion rights and abortion rights are presently winning. A recent Wall Street Journal article provides an excellent background and summary of the situation of one Ellinor Grimmarck, a 40-year-old Christian, mother of two, who quit her job in 2007 to return to school to become a midwife. In Sweden, there is an ongoing shortage of midwives and she received a stipend from a local county government to assist in her school expenses. Just prior to graduating in 2013, she asked her future hospital supervisors if they would accommodate her conscience rights not to perform abortions. Her stipend was terminated. Several others hospitals declined to hire her. She and her family ended up moving to nearby Norway where her conscience rights were accommodated in her new career as a midwife.

We may never had ever heard of Ms. Grimmarck had she not decided to sue the local county council in 2014 for religious discrimination and violation of her freedom of conscience. The WSJ article documents public characterizations against Ms. Grimmarck as an “‘extreme religious practitioner’ not unlike jihadists” and someone who is part of “a global wave of oppression against women”. One opponent offered “Those who are against abortion now, can’t we abort them-retroactively?”

Ms. Grimmarck lost her trial court case in November 2015. She appealed to the Swedish Labour Court of Appeals and just last Wednesday lost her appeal. Her attorney is considering whether to appeal to the European Court of Human Rights, where a ruling would have major implications for conscience rights across Europe. Support for that appeal is found in Article 9 of the European Convention on Human Rights (adopted as Swedish law in 1995), which gives everyone the right to freedom of conscience.

Given the critical shortage of midwives in Sweden, it strike me as more than odd that the government would reject anyone willing to assume any portion of the midwife skill set necessary to offload the current workload of midwifery in general.  Bringing on midwives wishing to limit their practice to the performance of live-births and unwilling to perform abortions would necessarily reduce the live-birth demands of midwifery in general, allowing more elective time for those wishing to focus on performing more abortions. As the WSJ article reported, the requirement any midwife perform abortions should be moot anyway because the 1974 Swedish abortion law limits the performance of abortions to physicians (though obviously this requirement has been modified given the results of Ms. Grimmarck’s recent appeal).

Given this example, we should remain ever vigilant regarding conscience protection laws here in the USA. This becomes even more critical if abortion rights move from a negative right (others must abstain from interfering with the abortion) to a positive right (others are required to provide the abortion). Conscience protection laws may not prevent abortion from becoming a positive right but it will clearly protect midwives and obstetricians who find abortion morally repugnant by allowing them to continue their practice of medicine in such a legal setting.

[1] Weak apologies to Ayn Rand (her character Dr. Hendricks in the 1957 novel Atlas Shrugged)

Six Million Dollar BCI Man

Elon Musk is a very busy billionaire technology entrepreneur. In addition to his previous projects Tesla Motors and SpaceX, he has found time to start a new venture called Neuralink with the goal to connect human brains to computers. Beginning with an initial goal to treat intractable brain disorders such as epilepsy or Parkinson’s disease, he would like to eventually move on to “cosmetic brain surgeries to enhance cognitive function”. The first major hurdle is the actual brain computer interface (BCI).

I was attracted to medicine in the 1970s as a result of watching the TV show “The Six Million Dollar Man” where a fictitious astronaut named Steve Austin is injured in a test flight, losing an eye, both legs and right arm, and military doctors are able to rebuild him in to a human cyborg with better-than-human limb strength and eye sight. We are approaching 2020 and are only just now at the early stages of BCI technology minimally necessary to achieve such a goal.

One such example is Bill Kochevar, a man who sustained a spinal cord injury 8 years ago resulting in quadriplegia. Scientists as Case Western Reserve recently implanted a device in his brain, which decodes his brain waves and sends electrical signals to stimulators in his right arm and hand, allowing him to move his arm and hand simply by “thinking”.

Working on the sensory pathways, scientists at the University of Pittsburgh have implanted a similar BCI in Nathan Copeland, who also sustained a spinal cord injury resulting in quadriplegia, though this BCI was connected in the sensory cortex and allowed Nathan to experience sensory input from a robotic hand touching objects.

Scientists at both universities stress that the technology is at the very early stages and we are nowhere near the practical application of a BCI that would permit a “Six Million Dollar Man”. But we do seem to be knocking on that door. If we can eventually implant a device in our brains that safely and reliably receives sensation to our brains from artificial sensors in a robotic hand or send signals from our brain to our own muscles (or a robotic arm), why stop there? There would be pressure to make the sensory input signals and motor output power “better than human”. I can imagine military applications where there might be pressure for able-bodied individuals to “volunteer” for the “cosmetic brain surgeries” that Elon Musk hopes to develop.

In fact, why bother with arms or legs at all? Once a safe BCI is available for the sensory and motor cortices (and perhaps later the visual and auditory cortices as well), we will be where Elon Musk hopes Neuralink will be in ten short years, not just restoring function but enhancing it.

I went into medicine to help people with quadriplegic injuries regain their lost function, and this technology is at the threshold of a significant breakthrough in that restoration. From a bioethics standpoint, I support it from a restoration standpoint. It is the enhancement aspect that worries me. Do we need an enhanced “Six Million Dollar BCI Man”?

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.