A(nother?) tangled surrogacy story

I must be candid.  I am grateful that my two sons, who please me immensely, cannot be called products of an “industry.”

That is, my wife and I never faced the pressure that some must feel, for a variety of reasons, to become ensnared in that tangled-web-we-have-woven called gestational surrogacy.

A writer named Michelle Goldberg has written a thoughtful article for the online magazine Slate describing the mess that one surrogacy case has become.  A woman chose to become a commercial surrogate to augment her income.  She has four kids of her own—including triplets—and had carried one prior surrogate pregnancy.  She agreed to carry a pregnancy for a deaf, single postal worker “who lives with his parents.”  There was a separate egg donor.  They signed a contract.  Three embryos were transferred, and all implanted.  Gender selection was done at the man’s request.  (Ms. Goldberg says the doctor who did the implantation has marketed embryo selection for desired characteristics—hair and eye color, and the like.)  Because of complications, there is pressure on the woman to abort (at least?) one.  There are disputes about who—or whose insurance—pays for the woman’s care.  The intended “father” (forgive me, I feel compelled to use the quotation marks) is running out of money, wants to limit her prenatal care, and worries he can’t afford three babies.   Jennifer Lahl, of the Center for Bioethics and Culture, has gotten involved.  (Follow this link to a page for her video Breeders: A Subclass of Women?)  The story has been reported in the New York Post.  (It’s a couple months old.  I’m just learning about it now.)

This is all going on in California, where the law requires that both parties to these arrangements have their own attorneys, and that, in the presence of a contract, the gestational surrogate surrenders all parental rights.  (Courts cannot consider the best interests of the children in deciding legal challenges to this, Ms. Goldberg writes.)  There is no screening of intended parents.  Adoption it ain’t.  The law is described as friendly to the fertility “industry.”  There is baby selling.  There is corruption.  Surrogates get shafted, financially, when the counterparties to the contract (that phrase sounds so much more apt) can’t afford to pay them.

And this is only one example.  “There are 8 million stories in the naked city,” as the line went.

In her article, Ms. Goldberg argues for greater care in establishing surrogacy arrangements, and greater regulation over the whole practice.  Read the whole thing.

Again, I found this article thoughtful.  And I am sure that most people who enter into gestational surrogacy arrangements do so with good motives.  Why would you do it otherwise?  And I understand that some of these stories end at least apparently happily.

And yet, I cannot resist saying “Hello!  McFly!”  When we rend family and kinship and the begetting of children so radically, dare we be surprised when things go awry?  Dare we pretend we weren’t asking for it?  Dare we be so proud as to believe we can create a happy new human framework in common law, in a thicket of regulations, out of whole cloth?

I am in IMHO territory here.  Yes, I know about Abram and Sarai and Hagar.  I don’t read Genesis, or any other part of the Bible, as condoning such a thing.  Yes, I know that the Christian Medical and Dental Associations countenances gestational surrogacy in limited circumstances.  But I believe I must respectfully dissent.  Yes, I know that childlessness is an affliction, that the desire for children is so strong (I really know that), and that people have a right to their own choices.  But there are limits.

I do not seek to condemn anyone.  But IMHO, gestational surrogacy is wrong.  Period.

UK approves gene editing

This week, UK regulators gave approval to a group of scientists in London to genetically modify human embryos. Dr. Kathy Niakan, the researcher who will be performing the experiments, said, “We would really like to understand the genes needed for a human embryo to develop successfully into a healthy baby. The reason why it is so important is because miscarriages and infertility are extremely common, but they’re not very well understood.” Researchers will alter the genes in donated embryos, then destroy them at age seven days.

The story was reported, among other places, on the BBC news website. Reading the story there, I was arrested by the author’s description, in which he writes, “The experiments will take place in the first seven days after fertilisation. During this time we go from a fertilised egg to a structure called a blastocyst, containing 200-300 cells.”

The word in the description that captured my attention is “We.” We go. The author writes “We” — he, me, you — go from a fertilised egg to a blastocyst. I don’t know if the author had this implication in mind when he wrote “We,” but he is right: that little, profoundly inclusive word means that the human embryo, even at the blastocyst change, is one of us. One of our tribe, our group, our species. Human, like we are. All of us were at one time blastocysts; blastocysts, given the right conditions, will grow to be like we are. These are our own young.

Lest there be any confusion: the UK fertility regulator has approved experimentation on some of “us” — our fellow human beings. The experiments will involve genetic editing, following which researchers will “destroy” some of us. (Why does “destroy” sound less reprehensible than “kill” in this case?) The main difference between those of us performing the experiments and those of us being experimented upon is that the latter are smaller, younger, weaker — and have no voice.

 

Can there be a “Right to Die?”

I generally give 5 reasons for opposing physician-assisted suicide (PAS), which is commonly recommended by its advocates by invoking the notion of a “right to die”:  it destroys the soul of medicine as the profession dedicated to healing; it deflects attention from palliative care; it rests on a very slippery slope; a right to die implies a reciprocal duty to kill; and the notion of a right to die itself is problematic if not incoherent.

I want to focus a bit on this last argument here.  I am most familiar with it from the work of Leon Kass, who expanded the argument in chapter 7 of his 2002 book Life, Liberty, and the Defense of Dignity.  Kass holds that a “right to die” is groundless, philosophically and legally.  I turn to his philosophic argument in this post.  I’ll address the legal argument next week.

In rejecting a right to die, Kass is not referring to the right to refuse treatment, which he regards indisputable, or a right to commit suicide “all by oneself,” which he regards debatable at best.  Rather, he construes a right to die “in its most radical intention as a right to become dead, by active means and if necessary with the assistance of others.”  He writes that a claim to a right to die is best understood as asserted not as a “liberty right” against those who would deny it, nor as a “welfare right” against people unwilling to provide the means, but as a demand against the ill fate of suffering or a debilitating condition—a sort of “tort claim against nature,” as it were.

A right to die cannot be a natural right, of the sort that Hobbes and Locke wrote about, because such rights are given by nature, and the most fundamental natural right is the right to life, presupposing a “self-interested attachment to our own lives.”  All other natural rights rest on the right to life, and a “right to become dead” cannot be an exercise of a faculty, necessity, or aspiration of life.

A right to die cannot be of the sort that Kant envisioned, grounded not in nature but in reason, because Kant held a willful act of self-destruction to be self-contradictory.  “Autonomy” for Kant meant something like “self-legislation,” requiring “acting in accordance with…one’s rational will determined by a universalizable, that is, rational maxim…not being a slave to instinct, impulse, or whim, but rather doing as one ought, as a rational being.”  And as Kant himself wrote (quoted by Kass), “To destroy the subject of morality in his own person is tantamount to obliterating from the world, as far as he can, the very existence of morality itself; but morality is, nevertheless, an end in itself.  Accordingly, to dispose of oneself as a mere means to an end of one’s own liking is to degrade the humanity in one’s person (homo noumenon), which, after all, was entrusted to man (homo phaenomenon) to preserve.”  That is: humans have a rational duty to preserve humanity, which entails living in accordance with rational moral precepts enacted by autonomous rational beings.  Kill the autonomous rational being and poof: you vaporize the foundation of ethics itself.

Not that this isn’t where contemporary humanity is headed anyway, and on purpose at that.  To claim a right to die, Kass argues, requires that it be understood in the “willful modern meaning” in which the autonomous, Nietzschean self finds true meaning in “unconditioned acts of pure creative will.”  But this approach also fails, because at most it can be an expression, a cry, of wanting to be done with this life—a legitimate emotion in some cases, it must be admitted.  The “willful modern” approach cannot support a right to have someone else’s assistance in dying (implying a limit on the other person’s autonomy), and my autonomy cannot support another person’s right to kill me or help me die.  Here, Kass’s argument seems to revert to the concern that a right entails someone else’s duty.

The “willful modern” approach requires one to be mentally competent (as, to be sure, PAS laws attempt to ensure), but cannot support proxies or “advance directives” of the sort that Courtney Thiele cautioned about this week.  And should that proxy not be chosen by the person, it is self-contradictory to think that proxy could exercise the patient’s right of autonomy.  And, finally, it is “at least paradoxical to say that our autonomy licenses an act that puts our autonomy completely out of business.”

If a “right” is just the unbridled will of the creative self, then Kass, quoting Harvey Mansfield, says that self is “open-ended…[and} cannot have interests; for who can say what is in the interest of a being that is becoming something unknown?   [The result is a society] characterized by a loss of predictability and normality; no one knows what to expect, even from his closest companions.”

In a word:  chaos.

A Book for Anyone Interested in Bioethics

Being Human: Core Readings in the Humanities, edited by Leon Kass, is one book worth a spot on the shelf of anyone interested in bioethics or concerns about human dignity.  A series of excerpts from things that we read—or should have read—in high school or college, it was selected by the members of President George W. Bush’s President’s Council on Bioethics in 2003.  The readings are sorted into ten chapters, organized into three major sections:  “natural imperfection and human longing,” “the human being and the life cycle,” and “living well.”  Each chapter’s group of readings is preceded by a brief introduction that appears intended to guide your typical undergraduate seminar discussion—or your neighborhood book club.  The short bite-sized selections can easily be used for discussion groups, without burdening group members with too heavy a reading assignment.  Or they can be read and meditated on, individually, at leisure.  Or they can be goads to go back and read more fully that novel that you never got to in college.  This is a collection of and from literature, a needed respite from the all-too-often robotic thinking of daily business or the relatively sterile exercise of analytic argument, not to mention the mindless rhetoric of television, the internet, and social media that militates against reflection and discourse.  Don’t hesitate to get it.

Religious Liberty and Human Dignity

A December 30th AP article relates the results of a poll that asked respondents about their views of religious liberty. The lead paragraph reads, “Americans place a higher priority on preserving the religious freedom of Christians than for other faith groups, ranking Muslims as the least deserving of the protections, according to a new survey.” The article goes on to detail the percentages of people who thought it was important to protect Christians’ religious liberty vs. the percentages who thought it important to protect Muslims’ religious liberty, etc.

Of course, the results of all such surveys are suspect, because the way the questions are worded determines the outcomes. Given that caveat, the questions this survey asks are fundamentally self-contradictory. To speak of religious liberty for one religion but not another is an absurdity. If “religious liberty” does not apply to all religions, then it is not religious liberty, but religious hegemony. On this understanding “Religious liberty” is a Hobson’s choice: “You have the liberty to practice your religion, as long as it is the one I approve.”

Christians should be particularly keen on this issue, for at least three reasons. First, since we desire the freedom to practice our faith according to our consciences, to disallow the same freedom to those of other faiths is flagrantly hypocritical (and whom did Jesus castigate more harshly than the hypocrites?). Second, Christians have often been (and still are in many parts of the world) subject to religious persecution; if we do not defend the religious liberty rights of others, we have no reason to expect our religious liberties to be defended when someone decides it is the practitioners of our faith who should be persecuted. Finally, religious liberty is closely intertwined with human dignity; denying religious liberty to a certain group entails the denial of their human dignity, and as Nigel Cameron once said, “Human dignity is indivisible; any assault on anyone’s dignity around the world is an assault upon mine.”

 

(Also see Steve Phillips’ post from December 9th.)

(Incidentally, the Cameron quote is from a Frontline interview from about sixteen years ago on assisted reproduction; the whole interview makes fascinating reading, considering all that has transpired since then.)

 

(I could not find the actual questions asked in the survey; this post is based on the reporting of the survey results.)

“Shrinking” IRBs and Cutting-Edge Bioethics

A recent conversation from my IRB work—for several reasons, I must limit the details of the case:

An IRB had received, for review and approval, a research protocol for gene editing of human embryos obtained from an IVF clinic.  The embryos would be at about the 150-cell stage—an early stage at which some (incorrectly, as I understand the science) believe a fertilized, dividing-and-differentiating zygote has not yet attained sufficient maturity to be called an embryo.  These embryos would have been “donated,” in compliance with current law and regulation, including informed consent from the relevant party or parties.  Further, the embryos would have been found to have a “life-threatening” mutation by preimplantation genetic diagnosis (PGD).

The first impression of the IRB’s primary reviewer (a scientific member for you readers familiar with regulations about the makeup of an IRB) was that the study was approvable on an expedited basis—that is, without a discussion at a full IRB meeting.  Current regulations identify nine categories of research eligible for expedited review.  The study in question arguably fits criterion #3:  “Prospective collection of biological specimens for research purposes by noninvasive means.”

Under current law and regulation, this is a reasonable view.  The Code of Federal Regulations (45 CFR 46.204) includes requirements for the protection of live human fetuses who are subjects of research.  The regulations define “fetus” as “the product of conception from implantation until delivery.”  Research involving dead fetuses, in whole or in part, including those obtained as a result of elective abortion, is to “be conducted only in accord with any applicable federal, state, or local laws and regulations regarding such activities.”  As the Congressional Research Service points out in a general reader-friendly FAQ document (go to https://www.fas.org/sgp/crs/misc/R44129.pdf), any research involving human subjects must be approved by an IRB in advance, but the dead fetus is not considered to be a human subject.

It’s logical to apply the same considerations to embryos used in research, and PGD, and, to be sure, IVF itself.  Of course, these embryos are usually destroyed in the process, and all the related issues of embryo or fetal tissue donation are raised in the process.  In the present case, were the research to be done on embryos intended for implantation and bearing in pregnancy, the embryos would be human subjects as well, and all the related issues—consent and others—that I and others have discussed on this blog in the past would apply as well.  It’s arguable that, to be sure all regulations are met, an IRB should send research like the proposal in this case to full review. (One question I would have is how strict is the definition of “life threatening” mutation.)

For those who, like me, argue that human life begins at conception and might like to see the current regulations changed, that probably would require a new statute—a law passed by Congress and signed by the president.

But none of those thoughts is my main concern here.  Rather, I think of the recent discussions of whether it is wise to edit the genes of human embryos or germline cells (eggs or sperm).  Scientists meeting in Washington DC recently issued a statement that it would be “irresponsible” to proceed with such editing in embryos intended for pregnancy.  There appeared to be at least a cautious embrace of basic research on editing genes in these cases, however, implying support for proposals like the one crudely outlined here.  But some leading scientists in the gene editing field disagree, arguing for a broader societal discussion first.

And, in that light, consider the shrinking role of the IRB.  I think the standard understanding of the IRB’s jurisdiction, in the early 21st century, is narrow—it is empowered only to address whether current regulations are being met.  Whatever the individual members of an IRB may think about the broader questions of the wisdom of forging ahead with human embryo or germline gene editing, I bet most IRBs would not think that it is not their business to weigh in on whether studies like the one described here should be done at all.  In other words, whatever societal discussion of these ethical issues is needed, the IRB is walled off from it.  Am I the only one who finds it ironic that IRBs, which had their genesis in the effort to prevent mistreatment of human research subjects, and whose members are required to have varying backgrounds, are considered unqualified to weigh in on matters like this?

A Tale of Two Friends

I am thinking of two friends from church with advanced cancer, both men about my age, 60-ish.

One has a high-grade brain tumor, persistent after standard therapy and more than one experimental new treatment.  He’s a fighter, looking for something new to try.  He’s an ex-Marine, famously fit at baseline, willing and able to tolerate some toxicity.  He also tells me that he is trusting Christ more than ever, and his devotional life is stronger than ever.  Although he’s pretty stoic, his tears up easily, in part because of the effects of his disease on his emotional processing, in part because having the illness seems to have brought him low.  In his younger days, he published some papers on bioethics—on end-of-life issues.

The other one has colon cancer, metastatic to his liver.  After the disease grew despite multiple tries at chemotherapy that, frankly, just made him sicker, he stopped active treatment of his tumor and started home hospice with the best current palliative care available.  On that, his condition has improved, and he’s done well for the better part of a year.  But he is in pain, some days worse than others.  He’s candid but reserved about his experience, also stoic.  He tells me to “keep working on miracles.”  (I work in clinical development of experimental drugs for cancer.)  I tell him there is only One miracle worker.  And, to his and my shock and outrage, some people have actually gone to him and asked him whether he would consider assisted suicide.

By the way, both of their wives are stalwarts, even heroic, IMHO.

Of course, none of knows how many more Christmases we will see, how many more times we will turn the calendar.  But the question is more acute for these two men.

I expect that both of them, when they leave this earth, will enter into the eternal joy of the Lord Jesus Christ.  I am sure that each of them holds fast to that assurance.  Still, I can see in their faces and hear in their voices real trepidation at the prospect of passing “through the veil.”  I think of a third friend from church, who has endured multiple myeloma for 14 years and counting, saying that he does not fear death but he is not looking forward to the point of dying.  I think of Woody Allen’s quip, “I’m not afraid of death.  I just don’t want to be there when it happens.”  I think of Christian, in The Pilgrim’s Progress,, fearful that he will not endure the passage through the river to the Celestial City, and his fellow traveler telling him that “Jesus Christ will make you whole.”

It’s one thing for an amateur bioethicist like me to press confidently my arguments about what should or should not be our actions, our perspective, in the end stages of life.  And, of course, whether one believes in the prospect of a happy afterlife must drive one’s view of the end of this one.  I am watching these two men as carefully as I can for lessons on how I should behave, at the time, if my latter days afford some advance warning about the end.  They are models of dignity.  I am reminded that, in my time, my ethical convictions may be tested.

And so, yet without irresolution, I am humbled in this season, when Christians like me celebrate the advent of Life Abundant and Eternal, Who, in His sacrifice and resurrection, defeated death and secured everlasting hope for His people.

Bioethics and Donald Trump

Sometimes people say things in public that just need a response. Donald Trump did that recently when he said that the US should deny entry into the country for all Muslims due to the risks to the US from radical Islamic jihadists. Just about everyone has responded with statements of why this is utterly wrong including Republicans, Democrats, Jews, Muslims and Christians. Permit me to respond from the viewpoint of Christian bioethics.

Christian bioethics is grounded in an understanding of who we are as human beings. We believe that every human being has an inherent dignity because we are one of the family of beings that God has created in his image. We believe that every human being should be treated with respect because of that inherent dignity. That dignity does not depend on what an individual has or can accomplish or even what that individual believes. A human being has dignity and deserves our respect even if he or she denies the grounds we have for granting that respect.

We also believe in religious freedom and that does not mean that only those who agree with what we believe to be true about God and what he has revealed to us about how we should live should have freedom. Religious freedom means that we support people being able to live in accordance with their best understanding of ultimate truth even if what they believe turns out to be false. Religious freedom is a part of how we treat human beings because of their inherent dignity.

Religious freedom does not mean that a person should be allowed to do anything in the name of religion. Killing innocent people is wrong because of that same understanding of the value and dignity of human life. Radical Islamic jihadists who kill innocent people should be stopped, but that does not mean we should deny religious freedom to anyone who follows Islam. As a nation we have a responsibility to the protect safety of all people within our borders and should properly screen both visitors to our country and those desiring to come as immigrants to weed out those who threaten that safety. Denying entrance to all Muslims would not accomplish that goal and violates our understanding of religious freedom.


With regard to immigrants we should remember that many of the victims of the violence of radical Islamic jihadists such as ISIS are Muslims. We should be open to caring for them just as we would care for any other victims of injustice. One of the strengths of Christian bioethics is our concern for those who are the weakest and at the fringes of society, including the unborn, the disabled and the dying. We must not forget to include all victims of violence and injustice no matter what religion they profess.

Refusing to Acknowledge the Human Dignity of Refugees

One useful method to try to deny the fact that someone possesses basic human dignity is to cultivate an “us vs. them” mindset. To do this we must ignore the individual in front of us and instead see only the class of people they represent to us. This helps us to forget that the other person possesses the same human dignity that we have, and allows us to place the other person in a category of “bad people” who are inferior to and opposed to us “good people.”

I made a friend several years back, a Syrian man who was in the States for some higher education. He used to tell me over lunch about the glories of Damascus, and he looked forward to going back there. After he finished his education he did return to Damascus, where he set up his own business. We maintained a regular e-mail correspondence.

Then the Syrian civil war broke out. I became worried for my friend and expressed as much to him, but he reassured me that he wasn’t in much danger. He was apolitical and kept a low profile. But one day he stopped answering my e-mails. I wrote several times with no response. I assumed the worst.

However, about a year and a half later, I heard from him again. He had been arrested for doing business with “the wrong kind of people,” and thrown into a jail. There he had been tortured, seen people killed in front of him, and experienced horrors that he refused to write to me about. Somehow he had gotten out, and he is now establishing a new life in Europe, learning a new language and finding new work.

My friend is a refugee, fleeing monstrous evil. There are some politicians and government leaders, even in this country, who would lump my friend in with his persecutors, placing him in the category of “doesn’t deserve our help.” In so doing they would categorically deny the human dignity that he inherently possesses. They would do this by relegating my friend and all other Syrian refugees to the “them bad guys” category — those people, who are fundamentally different from and pose a danger to “us.” Unlike someone with full human dignity status, they are not worthy of our help.

I don’t know much about public policy. There may be perfectly sound reasons to keep out Syrian refugees which don’t involve the outright denial of their full human dignity. If so, I haven’t heard any yet. And to practice this blatant denial of an individual’s human dignity harms not only those whom we would keep out; even more, it damages the character and soul of the people who practice it.