An IVF Keepsake?

As a father of two teenagers (and one who will join that esteemed company in a month), I am fluent in “sarcasm,” the native tongue of this group. Mine only use English sparingly, to do business. So, I often read headlines of stories in newspapers (remember those?) and online as sarcastic, and the articles they lead as spoofs. This one, in the “Parenting” section of an Australian web journal called “Kidspot,” immediately led me there. It speaks of a company that will take embryos from in vitro fertilization (IVF) that have not been implanted, and for which the biological parents have no plans of implanting, and turn them into keepsake jewelry. But this is no spoof.

The couple interviewed in the piece, having completed a 6-year journey through infertility and IVF, has a 4-year old son and twin toddlers. With seven remaining embryos, they had a decision to make. For them, “Donation wasn’t an option, the annual storage fee was an added financial strain, and disposing of them unimaginable.” Enter a company called “Baby Bee Hummingbirds,” who placed the embryos in a heart-shaped pendant.

My first impulse, not without some merit, was to find this all a rather ghastly business. Each of these embryos is a unique genetic human created in the image of God. I find myself critical of parents who don’t seem to have fully thought out the ramifications of fertilizing ten or more eggs. If these are genuinely human beings, then the creation (if that’s the right word) of “leftovers” is itself deeply problematic. It takes a great deal of restraint for a mother, who must have eggs harvested after a somewhat risky hyperovulatory cycle, and the physician, who will be judged on the success rates of achieving pregnancy, to fertilize only enough embryos to be implanted once. That is understood. But the ethical choice usually follows the more difficult path of restraint, and that includes the decision on how many embryos are to be made.

On another level, one which is a bit more gracious, perhaps, I try to see some redemptive value in this. Presumably “donation” was for medical research, for which I would commend the parents’ avoidance. It does not mention embryo adoption, which could fall under “donation” and would be ethically the best decision. But, with hundreds of thousands of human embryos in liquid nitrogen in fertility clinics across the United States alone, this is no full solution to the problem, and shouldn’t be seen as an easy “out” ethically. In the parents, there is a reflection that these are more than just unwanted clumps of cells, as something beautiful is being attempted to serve as a kind of memorial to the lives that could have fully developed. Maybe this is some effort to take something, quite literally ashes, and redeem it. Maybe it is a message to the world that we should all think a lot harder about what assisted reproduction fully means, and to what it speaks of human life. We sometimes carry the cremated ashes of loved ones with us as a reminder of their significance, after all. Perhaps this helps affirm the humanity of these embryonic humans?

Yet…this ultimately shows us what kind of a mess we have created. We feel better about children that we never gave the opportunity to breathe and walk and talk because we have made something pretty to carry them around “close to our hearts.” That the parents made the choice that these embryos will not live on can’t be lost here.

From the mother interviewed:

“Finding this has brought me so much comfort and joy.
I [am] finally at peace and my journey complete.
My embryos were my babies – frozen in time.
When we completed our family, it wasn’t in my heart to destroy them.
Now they are forever with me in a beautiful keepsake.”

Assisted reproduction has been described as the “wild, wild West” ethically…there is little regulation of the industry worldwide, it exists in (to use another metaphor) “uncharted waters,” and it has offered hope to people who desperately dream of loving a child…and may spare no expense or physical burden to achieve it. I can speak to the difficult journey of infertility because my wife and I traveled it. We set our boundaries early and held to them, but could easily see how each step leads to the next, and how gut-wrenching it is to say, “done.” This is not a critique of IVF per se. It is a reminder that anyone who undertakes the process (or, indeed, makes the decision to bring children into the world) should reflect on the motives behind and consequences associated with it.

This industry, this process, at its worst, instrumentalizes children. It takes a beautiful desire that has been met with profound pain and somehow convinces us that we have a right to children…children who look like us, will give us an ideal-sized family, and (ultimately and chillingly) will be the best that science can make. It is when children become a means, maybe the means to our fulfillment, that we lose sight of the sacrificial love that parenting represents. In a world of idols, this is another, and it is one that is consequential.

Medical errors and more medical errors

Last week the BMJ reported that annually, there are 251,000 hospital deaths due to preventable medical errors in the US. There’s some debate about the calculations that they used to arrive at that number, and about what exactly constitutes a medical error. However, rather than quibble over the fine points, let’s acknowledge that medical errors are an ethical problem that must be addressed. In this post I would like to widen the conversation beyond the hospital walls. Below is a sample of some deaths due to preventable medical errors that weren’t included in the BMJ calculations (most of these ones happen outside of hospitals); nevertheless, they too affect thousands of people annually. I will also attempt to provide a taxonomy of the relevant errors.

Deaths due to the inability of the patient to obtain medical care because they couldn’t afford the care or the insurance — unknown number. The medical error here is a systemic one, the rationing of health care on the basis of who can pay for it.

Deaths of patients due to their being the subjects of human research — unknown number. This is peculiarly prevalent among embryonic patients (as Jon Holmlund wrote about last week). The medical errors include the failure to extend to embryonic research subjects the protections enumerated in the Declaration of Helsinki. There is also a category error: classifying embryonic patients as something other than human beings.

Deaths of embryonic or fetal patients through elective induced abortion — 977,000 (2014 data). The same category error as previous comes into play here: the failure to recognize the humanity of the unborn human.

Deaths of patients from drugs prescribed by their physician for the purpose of suicide — the numbers data is incomplete. The number is relatively low but projected to grow as more jurisdictions legalize physician-assisted suicide. The errors here include a professionalism lapse (forgetting that the professional status of medicine was established, among other things, on the dictum that doctors do not give deadly drugs, even if asked to do so). There is also the error of hubris: the belief that doctors can decide that someone should be allowed to kill themselves.

Preventable medical errors, all.

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.

 

Oh, Those Darned Terms!

In a recent post Jon Holmlund cited Thomas B. Edsall’s op-ed in the New York Times, “The Republican Conception of Conception.” Edsall was referring to the concept that life begins at conception. It is his hope that Republicans either stake a consistent position regarding the morality of post-conception “contraception” and incur the disfavor of the electorate, or abandon their “moral purity” in favor of “pragmatism” and agree that post-conceptional interventions are acceptable.

Edsall’s states it thus:

By this logic, a presidential candidate seeking to live up to the standards set by Sedlak and others in the anti-abortion community must then agree that the IUD and morning after pill cause abortions.

The problem is that Edsall challenges GOP candidates to take an informed and consistent position, while depending on the electorate not to. His strategy relies on manipulative use of terms to produce the opposite of clarity in moral reasoning. First, he speaks of medical interventions described as “contraceptives” that act in ways beyond merely preventing conception. But he does not give them the label “abortifacient” (the proper term for an IUD should be “contraceptive-abortifacient”); the term is simply omitted. That is the best way, of course, to ensure that users of devices such as the IUD are unaware that it may act after creation of an embryonic being.

Such a position is facilitated by ACOG’s definition of pregnancy as beginning at implantation, which Edsall also hangs his hat on. This is a willful dodge. “Pregnancy” refers to the state of the woman. To claim that pregnancy doesn’t begin until implantation fails to refute the notion that an embryonic human being is in existence before then. So the woman isn’t “pregnant”….the human being is still alive, moving toward implantation. And, if the woman isn’t “pregnant” during the time after the embryo is fertilized and before it is implanted, what is her state? Is it not different than before she conceived? Does that not deserve a name? The absence of a name for such a condition is no accident, because the unnamed state is far more difficult to assign a moral status to.

This same “reasoning” behind the proposed bill in the California State Legislature  also recently mentioned in this blog by Jon Holmlund:

“The bill would provide that nothing in its provisions is to be construed to authorize ending a patient’s life by lethal injection, mercy killing, or active euthanasia, and would provide that action taken in accordance with the act shall not constitute, among other things, suicide or homicide.”

So, according to this draft bill, one can take one’s own life and not commit suicide. The attempt to separate the actions that this bill would legalize from the term “suicide” is to attempt to prevent citizens from properly interpreting those actions using the moral values they have already acquired.

Are moral discussions about conception, contraception, abortion, and assisted suicide too painful for our electorate, having what Edsall describes as “its complex views and…pragmatism”? For many, yes, as proven by our unwillingness to clarify the terms needed to elucidate the moral issues regarding medical interventions blocking implantation. However, such discussions are not unwanted by all, but simply unknown to them. Remaining uninformed by the medical profession of the mechanisms of action of “contraceptives,” they are never given a chance to make an informed moral decision. Edsall (to achieve his desired virtue of consistency) would more properly make his challenge to all of us, to demand that each voter take a stance on the morality of embryocidal interventions. It is only then that they could properly interpret the candidates’ responses that Edsall so fervently desires.

Technique and Eugenics: my response to the question Jon Holmlund asks about gene editing

Jon Holmlund has asked in this blog whether germ-line modification for the purpose of eliminating genetic diseases (NOT for enhancement), if it could be done safely and equitably, would be ethically acceptable. I argue no, for at least three reasons: we humans are virtually incapable of limiting our use of technology, the technology of gene editing is inescapably eugenic, and we humans are incorrigibly eugenic. Following is an extremely abbreviated explanation of my argument.

First, there is no chance that this technology could be limited to the narrow usage Jon describes. We like to think that technology is value-neutral, that it’s just tools; so maybe we could just choose to use this tool for a particular good purpose without using it to create a Gattaca or a Brave New World in which we witness the Abolition of Man. But as Jacques Ellul has pointed out, “It is useless to think that a distinction can be made between [a] technique and its use, for techniques have specific social and psychological consequences independent of our desires. There can be no room for moral considerations in their use…” (Fasching, The Thought of Jacues Ellul, 18). Ellul called this characteristic of technique monism: a technique is inevitably applied everywhere it can be applied.

Second, as Neil Postman has written in Technopoly, every new technique carries within itself an idea, an ideology; the idea in the technique of germ-line modification, as in all genetic technologies, is eugenics. In medicine especially, we see again and again that technology is used “as defined by the capabilities of the technology . . . even contrary to the best interests of the sick person.” (Eric Cassell, “The sorcerer’s broom: medicine’s rampant technology.” Hastings Center Report, 1993;23:32-39.). One need not look far in medicine to see examples of technology employed in a manner defined not by patients’ best interests but by the technology itself: robotic surgery, CPR, or all of the permutations of infertility treatment.

Third, we humans seem to be incurably eugenic. From Plato’s Republic to Nazi Germany to today’s prenatal clinics, we pursue eugenics despite all warnings from history about what the inevitable conclusion of such policy is.

To recapitulate: In a technology-worshipping society such as ours, the “choice” to use a technique is virtually automatic. The idea at the heart of gene editing is eugenics. Our species, for whatever reason, possesses strong eugenic tendencies. Thus, since this technology could be used for eugenic purposes to edit genes to create “designer babies,” it will be used for those purposes. Therefore, I do not believe that it is ethical to pursue research in this area for the ostensibly good purposes that Jon postulates.

The implications of uncertainty about personhood

Many times the different parts of my life conflict with each other, but sometimes they come together in interesting ways. Susan Haack’s recent post on the article “The Fetus, the “Potential Child,” and the Ethical Obligations of Obstetricians” from the journal Obstetrics and Gynecology contained a quote that connected with a reference to an article by Christopher Tollefson by one of my students in a recent paper. The authors of the Obstetrics and Gynecology article stated that the issue of whether a fetus has full moral status is “irresolvably disputable” and from that drew the conclusion that the fetus has no independent moral status and subsequently reached the conclusion that abortion is permissible. Tollefson, however, has argued that an inability to decide whether a human being at a certain point in development has full moral status should actually lead to the opposite conclusion.

In his article “Embryos, Individuals, and Persons: An Argument Against Embryo Creation and Research” in the Journal of Applied Philosophy in 2001, Tollefson argued that in order to conclude that destructive research on human embryos is permissible it would be necessary to establish conclusively that the human embryo is not a person. His argument is that if it is uncertain whether an entity is a person or not it would be wrong to intentionally kill it. Therefore, it is wrong to conclude that it is permissible to do destructive research on early human embryos because we don’t know or can’t know whether those embryos have full moral status. The uncertainty about their moral status means that we should avoid the possibility of killing a person if those embryos would happen to be persons. That same idea can be applied to the “irresolvably disputable” issue of whether a fetus has full moral status. If the issue is unresolved then there exists the possibility that a fetus is a person with full moral status and we should not kill a fetus if that possibility exists.

An example that would be readily understandable to many of my rural Midwestern patients and neighbors can illustrate this point. Assume you are a deer hunter in the woods of rural Indiana and you see something move in the underbrush. You are not sure whether it is a person or a deer. It would be morally wrong to shoot at whatever was moving without determining with certainty that it was not a person. In the same way doing embryo destructive research or an abortion is wrong unless you are able to determine with certainty that what is being killed is not a person. Uncertainty about the personhood of the embryo or fetus means that it would be morally irresponsible to kill it.

It would be sad to think that the typical deer hunter has more moral responsibility than a medical researcher or physician.

PGD, BRCA, and the difference between Diseases and Risk Factors: “The lamps are going out . . .”

It is currently estimated that up to 65% of women with the BRCA gene mutation will develop breast cancer. Monday’s Wall Street Journal (WSJ) reported on the growing number of women with the BRCA gene mutation who are undergoing in-vitro fertilization, having the resultant embryos tested for the presence of the mutation via preimplantation genetic diagnosis (PGD), and choosing to implant only those free of the mutation.

PGD has been used for years, typically for parents to selectively implant embryos free of certain genetic diseases — the kind where if you have the gene, you have the disease. It has been occasionally used to select embryos of a certain sex, or embryos with a characteristic such as deafness to match parental characteristics. In other words, it has been used to select out embryos who actually have a disease or characteristic.

The use of PGD mentioned in the WSJ article is something subtly but altogether different. Whereas other uses of PGD select out embryos with a certain disease, screening based on the BRCA gene is used to select out healthy embryos. These are embryos who do not have a particular disease, but who have risk factors for a particular disease.

This is a fundamental distinction. People who have the BRCA mutation are not sick! They don’t have any disease! If they develop cancer, then they will have a disease. But “Having the BRCA mutation” is not a disease! Approximately 35% of people with the mutation will never have the disease associated with the mutation. For the others, preventive measures and treatments are available. (I am not here pretending that the preventive measures and treatments are fun and easy. But they available and mainstream, not experimental.)

The rationale of one person in the article is, “I thought, if I could have a healthy baby who doesn’t have to worry about the same thing I did, why wouldn’t I?” And, “. . . doing PGD to avoid passing on the BRCA mutation seemed like an obvious precaution.” In other words, the decision was a no-brainer.

But if it’s a no-brainer to select out embryos with the BRCA mutation, then it’s equally a no-brainer to select out embryos with genetic predispositions to all kinds of things: heart disease, diabetes, social anxiety disorder, baldness, ingrown toenails, erectile dysfunction . . .

It was at the moment that it became acceptable to profile embryos and weed out those who didn’t meet our arbitrary criteria that we started down this road. I am afraid we will not be able to stop before it reaches its inevitable, logical conclusion. (Seen Gattaca lately?)

 

 

Euthanasia, pediatric and adult, and the underlying concept of a life not worth living

Jon Holmlund’s recent post about pediatric euthanasia in Belgium made me think about what I had posted a couple of weeks ago about PGD and lives not worth living. There is a way in which the concept of a life not worth living underlies a whole spectrum of ethical issues from PGD and selective abortion to pediatric and adult euthanasia. There is a basic conflict between those who take different ethical positions on these issues over whether there are certain quality of life issues that can allow one person to decide that another person’s life not worth living.

For those who take the position that it is permissible for couples who are at risk to have a child with a serious genetic disorder to use PGD or prenatal diagnosis with selective abortion to try to insure that any child that is born is free from the genetic disorder, a part of the argument for their position is that it is permissible to discard the embryos found to have the disorder or abort the fetuses found to have the disorder due to the poor quality of life that would be experienced by those children if they were born. That is saying that the lives of those children would not be worth living. That decision is being made by the parents for their children and being confirmed by the physicians and others who participate in the process.

Those who support the permissibility of active infant euthanasia as practiced in the Netherlands under the Groningen protocol are also saying that the infants whose lives are being ended have lives that are not worth living. Again this decision is being made by the parents and confirmed by the physicians involved that the infant’s life is not worth living.

The situation with voluntary euthanasia of children as it has recently been allowed in Belgium is more complex. If the child does not actually have full decision making capacity or is being overtly or covertly coerced, it is again someone other than the child who is making the decision that the child’s life is not worth living and the situation is similar to infant euthanasia. If the child has full decision making capacity then it could be reasonable to consider the situation to be the same as adult voluntary euthanasia.

With adult voluntary euthanasia some would argue that the concern about one person deciding that another person’s life is not worth living is not an issue because it is the one whose life is being ended who is making that decision. However, whether what is being done is voluntary active euthanasia in which a physician is administering a lethal drug or physician assisted suicide in which the physician prescribes the drug with the intent that the patient will self-administer it, the physician who is involved must make the decision that the act of ending that patient’s life is warranted. Few would be willing to take respect for autonomy so far as to say that anyone who requested assistance to end his or her life should be provided the means to do so without a judgment by the physician that the decision to do so was an appropriate one. Assisting someone to commit suicide who is despondent over a break-up of a relationship is irresponsible. Thus physician participation in voluntary active euthanasia or assisted suicide requires an independent decision by the physician that the decision to request assistance in ending life is reasonable. The only way a physician can make the decision to participate is to decide independently that the patient’s life is not worth living.

The only situation in which ending a life to avoid a poor quality of life could be done without one person deciding that another person’s life is not worth living would be unassisted suicide. There are Christian and Kantian arguments for why that is not morally permissible, but that lies outside the realm of these thoughts.

Since all of these actions, from PGD to adult voluntary assisted suicide involve one person making a decision that another person’s life is not worth living, a crucial issue is whether it is morally permissible for us to make such a decision about another person’s life. For those of us who have an understanding that every human life has value simply because of being human, we must answer that it is not permissible to make that decision. We understand that no matter how difficult a life may be that person still has value and our response to those whose quality of life is poor and who are having to endure more suffering than it would seem that they ought to is to affirm the value of that person’s life by caring for the person’s needs. We cannot say that another’s life is not worth living.

On forced procreation and the right not to be a father

Wednesday’s Chicago Tribune ran a story on the top of the front page: “Couple battle over frozen embryos.” It is a tale that has been told many times in many places, with slight variations in the details: woman finds she has cancer; chemotherapy will end her fertility; boyfriend donates “genetic material” and, using her eggs and IVF, they make embryos; boyfriend and girlfriend split up; now she wants to implant embryos, but he wants embryos destroyed; Illinois Supreme Court to weigh in.

The boyfriend claims that “he never agreed to give up a say in whether he becomes a parent, that forced procreation would violate his constitutional rights” (italics mine). The Tribune story quotes him as saying, “I have the right not to be a father.”

Whoa, wait a minute. Forced procreation? The way I read the story, nobody was holding a gun to his head when he made his donation.

Nobody is denying that he has a right not to be a father. But it seems to me that he relinquished that right the moment his “genetic material” met her egg, and made a third party, a separate embryonic human. In other words, it’s too late — He already is a father.

If there is a “right” not be a father, it is the right to avoid fatherhood by avoiding going around fertilizing ova, not the right to avoid fatherhood by killing one’s offspring.

 

German debate about PGD

A recent article from Spiegel Online which is on the ABC News website discusses the debate about pre-implantation genetic diagnosis in Germany. Pre-implantation genetic diagnosis (commonly abbreviated PGD, but abbreviated PID in the article) is a technique in which one or a few cells are removed from a developing embryo produced by IVF and tested for genetic abnormalities. In the context of the discussion in Germany it is being used to allow parents who are known to be carriers of a serious genetic disorder to choose to give birth to a child without that disorder by choosing an embryo to implant who does not have the disorder from among the ones produced. Unlike the US, Germany carefully regulates reproductive technology and until 2010 PGD was illegal. A court ruling in 2010 led to a parliamentary amendment to Germany’s Embryo Protection Act to allow PGD to be used legally in exceptional cases in which parents are at high risk to have a child with a serious genetic disorder that can be detected by PGD.

Not everyone in Germany thinks this is a good idea. The arguments against PGD reported in the article come from medical ethicist Axel Bauer who wrote that he fears “that the possibilities PID offers will significantly reduce the range of ‘normality’ that will still be tolerated in our society in the future.” Hubert Hüppe, the German government’s commissioner for the disabled, says critically: “In the future, human life will only exist after quality control.”

Elke Holinski-Feder founder of the Medical Genetics Center in Munich that provides the genetic services for PGD says “I have a feeling that many of those who pass judgment on PID don’t know what we are doing here.” She says that those who oppose PGD are concerned about what it might lead to in the future, but she is concerned about parents who want to have a child but know through the experience of having a child who has died from or is living a very difficult life with a serious genetic disorder. She wants to be able to offer them the ability to have another child who is free of that disorder. Her argument is essentially that as long as PGD is limited to allowing those parents who are at high risk to have a child with a serious disorder to have a child without that disorder it should be allowed. That limitation removes the fear of reducing the range of acceptable normality in society since those detectable genetic disorders are only a small fraction of congenital abnormalities and would not allow the use of PGD as quality control. She says that going beyond that limited use, as is done in the US, would be wrong, saying “making a little sibling to be a donor for a child with leukemia, that’s not okay.” She adds that there are other ways to help those children.

What seems to be missing in this discussion is concern about the value of the life of the embryos that are discarded in the process of PGD when they are found to have a genetic abnormality. In her comments in the article Holinski-Feder does express concern about using prenatal diagnosis and abortion as a method for screening for the same genetic disorders. She says “Do you know what advice these families are usually given? Try it, and if it goes wrong, terminate the pregnancy!” She explains that is not the advice she wants to give her patients and sees PGD as a better solution. The only reference to the value of human embryos in the article is when Holinski-Feder says that when her students ask her: “When does human life begin?” she responds with a series of questions: “Imagine you were asked to place a picture of yourself as a child on the shelf. Which picture would you use? The zygote? The embryo? The baby?”

While concerns about the morally problematic things to which PGD opens the door are legitimate concerns, the most significant ethical concern about the use of PGD is the embryos that are discarded. For those who believe that human embryos have full moral status, destroying them for any reason is wrong. Even for those who do not think that human embryos have full moral status, a human embryo is a living human organism whose unique identity is continuous with the human person that the embryo will be after gestation and birth. To discard an embryo is to say that the life of that unique human being has no value or that his or her life is not worth living. That is something that the German people should be especially sensitive to avoiding since it was the concept of a life not worth living as expressed by German philosophers in the early 20th century that was the foundation for the elimination of mentally disabled children early in the Nazi regime and the springboard for more extensive atrocities.