Sometimes ethicists and philosophers seem to be overly concerned about the definitions of the words we use, but how we define words can make a significant difference in ethics. This has recently been illustrated by a ruling of the Inter-American Court of Human Rights (as reported in Nature News Blog) which struck down the prohibition of IVF by the Costa Rican constitutional court. It is interesting that the Inter-American Court of Human Rights was created by the American Convention on Human Rights which was adopted in 1969 in San Jose, Costa Rica.
Article 4.1 of that document states “Every person has the right to have his life respected. This right shall be protected by law and, in general, from the moment of conception. No one shall be arbitrarily deprived of his life.” The Costa Rican court had based its prohibition of IVF on the fact that IVF denies that right to life of many fertilized eggs that are not implanted. The Inter-American Court of Human Rights struck down Costa Rica’s prohibition of IVF by redefining the term conception in its foundational document to mean the time after implantation and not the time after fertilization.
This serves as a reminder that we live in a time when people in power not only believe in ethical relativism, but in post-modern relativism of language as well in which words can be redefined to fit their purpose. We must remember that our stand for truth involves not just the truth of objective moral values, but also the truth of the meaning of the words we use to express those values.
“Woe to you, scribes and Pharisees, hypocrites! For you are like whitewashed tombs, which outwardly appear beautiful, but within are full of dead people’s bones and all uncleanness.”– Matthew 23:27
I received several comments on last week’s post about Hubertus Strughold, so I thought I’d follow up with another post. The fact that Strughold has been well-respected in American medical circles despite his leadership in medical experimentation in Nazi Germany may shed light on deep-seated philosophical problems that undergird America’s healthcare crisis. It is no secret that the Allies marveled at the technological and scientific capabilities of the Germans as they marched through that country in the final days of World War II. Though it used the scientists of the Third Reich to the ultimate success of putting a man on the moon, American medicine may also have adopted harmful philosophical ideas that cripple U.S. medicine to this day. The technological and scientific accomplishments of American medicine may be the whitewash that hides the philosophical problems that are the dead people’s bones that affect patient care and make us incapable of solving systemic healthcare problems.
Several writers on this blog have commented on the failures of the “business model” of medicine. Joe Gibes has written several posts on the subject (see his “Black Friday” post), and Steve Phillips has recently mentioned the “manufacturing efficiency” that has been brought to human reproduction. It is well-known that many Americans sided with the National Socialists in Germany in the 1920s and 30s because they saw them as a bulwark against the tide of communism that seemed to be sweeping over Europe (Russia fell to the Communists in 1917). In the culture wars in America the last two decades, it appears the right-wing has propelled the “business model” of medicine to the fore as a bulwark against the Left’s move to bring government-run healthcare to America. It is a classic case of the end justifies the means. Why Christians allied themselves with the right-wing to form the “Religious Right” in the 1980s I’ll never know. But it looks like a deal with the Devil.
An infertility clinic in California has come up with a new marketing strategy for IVF. The Los Angeles Times reports that the clinic offers up to three rounds of IVF using embryos produced in batches from paid sperm and egg donors and uses the embryos to implant in multiple women to reduce the cost of having an IVF baby to $12,500 with a guarantee that if the recipient is not able to achieve a pregnancy after three tries the fee will be refunded. The lower than usual cost is achieved by splitting the cost of obtaining the eggs and sperm between 3 or 4 recipients for each batch of embryos, and the success rate of 95% with half of the recipients having twins makes the money back guarantee feasible. The high success rate is due to the use of eggs and sperm from healthy young adults without known fertility problems. It appears that mass production and industrial efficiency has found its way to the IVF clinic.
The ethical concerns are legion. The embryos are created as a product to be sold by the clinic and belong to the clinic, not to parents until they are implanted. The selling of eggs and sperm is concerning because it commodifies a part of a human being. This process commodifies the embryos themselves. The recipients are given profiles on the sperm and egg donors and it does not take much imagination to see how this process could be used to order the child that a couple desires from a catalogue. At this point the money back guarantee is for a successful pregnancy, but it opens the door to a guarantee of an acceptable child. Can you take the child back in adolescence if he or she is not what you expected? Some parents may already be tempted to think about that.
The use of eggs or sperm that are not those of the parents who will be raising the child causes confusion of family relationships for the child. One wonders if the clinic should be considered a fifth parent for the child in addition to the two biological donor parents, the gestating mother and her partner (assuming she has one). How is the child supposed to react to the knowledge that he or she has multiple fraternal twins (octuplets or more) in existence being raised by unknown families who he or she may run into in the future?
As long as the production of babies is seen as an industry it is inevitable that manufacturing efficiency will play a role and human lives will be sold as commodities. And the value of all of us as human beings is diminished.
In a recent article in the Australian media Julian Savulescu, a noted Oxford ethicist who is a visiting professor at Monash University in Melbourne, makes the contention that selecting which babies are born by doing genetic testing on embryos or fetuses and only allowing those that are desired to live to birth in the way that it is allowed in Australia shares the moral problems of past eugenics programs that we have rejected. His point is that the current practice in Australia allows selection of embryos by preimplantation genetic diagnosis and fetal testing with selective abortion only for diseases and not for sex selection or other non-disease characteristics. By allowing selection based only on diseases the society is saying that “lives with disability are less deserving of respect, or have lower moral status.” That is why we rejected the eugenics programs of the past.
Savulescu points out that “If either the embryo or the fetus has a moral status – then it would be wrong to kill either, whether or not a disability is present. If the embryo or fetus does not have a moral status, it should be permissible to destroy an embryo or abort a fetus for any reason. In this way, paradoxically, allowing testing for diseases, but not for other genes, is eugenic in objectionable ways.”
It would be easy to go from there to saying that genetic testing of embryos and fetuses for the purpose of selecting who will be allowed to be born should not be done based on the principle of the value of all human lives underlies our rejection of eugenics, but he does not go that direction. Instead he moves toward the permissibility of all embryonic and fetal testing by saying that lifting the restrictions on personal liberty imposed by limiting genetic testing of embryos and fetuses to testing for disease would resolve the moral objection that the current policy involves morally impermissible eugenics. He gets there by saying that since most people already accept the testing of embryos and fetuses for diseases, we should not say that all such selective testing is wrong based on the moral status of embryos and fetuses and the way to validate people’s acceptance of testing for diseases is to allow testing for non-disease characteristics.
Savulescu’s means of getting to his conclusion is an interesting and commonly used one to justify things that have previously been understood to be wrong. Rather than giving arguments for why we should believe that a human embryo or fetus does or does not have full moral status, he says we have already accepted a limited practice that would otherwise have been considered immoral, so we should accept a broader version of the same sort of practice. This is the process by which immoral behavior takes over a society, and also the process by which an individual falls into immorality. First justify a very limited violation of morality, and then once that is accepted use that to justify further immorality.
That is why we need to stand firm on basic moral values such as the dignity and value of every human life. Defending the moral status of the weakest and most defenseless human beings is essential to avoid the acceptance of things like aborting fetuses because they are female that currently seem obviously wrong, but may become accepted by a gradual breakdown of moral values.
A recent post about the personhood of human embryos made me think about the distinction between moral status and moral agency. Moral status relates to how we should treat an individual who has it or does not have it. Moral agency has to do with whether the individual is capable of making decisions or doing actions for which the individual is morally responsible. Both are characteristics that an individual being or type of being may or may not have. Most would say that any being that is a moral agent should be considered to have full moral status. That means that any being who is able to be held morally responsible for its choices and actions should be treated as having the same moral value as myself. However, there may be some individuals who have full moral status, but are not moral agents. That would mean that such an individual is a person who should be treated by me as having the same moral worth that I have even though that person is not morally responsible for his or her own actions. Some examples of those who we commonly understand to have full moral status, but who are not moral agents, include young children, those who have a mental disability that makes them unable to understand the difference between right and wrong, and those who have dementia or even temporary incapacity to make moral decisions.
When we as Christians take the position that a human embryo has full moral status because that embryo is a member of the human family who has been made in the image of God, we take that position understanding that an embryo is not a moral agent. I think that one of the reasons for the problems with capacity definitions of moral status like the one used by May Ann Warren is that it confuses moral status and moral agency. Being a moral agent is totally dependent on the capabilities of the individual. It depends on having the ability to understand the concept of right and wrong, the reasoning capacity to determine what actions are right, and the ability to control his or her actions. If one assumes that moral status is similar to moral agency then it makes sense for there to be similar capacities that determine who has moral status. But moral status is a totally different type of thing. It has to do with the nature of a being not its capabilities. How we treat something morally has to do with what kind or category of being that the individual is and that is not dependent on its capabilities. That is why we treat children and the disabled as full human beings even though they are not moral agents. That is why we should treat human embryos the same way.
Researchers have now developed a technique for doing genetic testing of a fetus by using cells circulating in maternal blood, avoiding the more invasive and dangerous technique of amniocentesis. These new technical capabilities hail the dawn of a new age of eugenics, or the pursuit of “good (eu) genes.” With these new technical achievements, physicians can gain knowledge of the child’s genetic makeup as early as 7 weeks after conception. This can mean a new opportunity for interventions earlier in the pregnancy for the sake of the health of the child or it may provide doctors with more information to inform a decision to abort the child.
Arthur Caplan helped develop guidelines for organ transplants in the 1980s and has for some time pressed for similar oversight of the “wild west” of reproductive medicine, largely because of its eugenics implications. He is very aware that genetic testing could be used for selecting athletic ability, eye color, or gender. Sex selection using abortion is already something practiced in countries like India and China, and genetic testing using maternal blood would only make it easier. However, Caplan is firmly pro-choice, saying that there are good and bad reasons for an abortion. As Caplan puts it,“Sexism is not a good reason for ending a pregnancy.”
What is missing in this discussion is our response to those with diseases and abnormalities. To many, a chromosomal defect like Down Syndrome or a physical abnormality like malformed limbs is a good reason for ending a pregnancy. Too often our attitude to those with abnormalities and diseases is to consider them as unfortunate mistakes rather than opportunities to live in fellowship with another human being. We think getting rid of the mistake solves the problem, especially when it involves fetal tissue out of our line of sight. If our drive for perfection bumps into human autonomy, we back off. If it does not, we proceed in getting rid of the patient if we can’t get rid of the disease. This is a serious misunderstanding of the ethos of medicine. An improvement in our ethical strategies will not come from a new set of protocols to use in the clinic. It will only come about if physicians adopt a new value system concerning the purpose of medicine and develop their character accordingly.
Henri Nouwen, well-known for living in the L’Arche community for adults with disabilities, articulated a vision of such an ethic when he said, “When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.”
Click here for a video of Art Caplan discussing gender selection.
In last week’s blog I mentioned that once an ethical barrier is broken we tend to pursue the breach as far as we can. I was trying to say that our nature as fallen human beings requires ethical boundaries to keep us from doing things we should not. Another example of that comes from Israel where a person is undergoing sex reassignment surgery to be changed from being female to being male. This person has requested the preservation of ovarian tissue for future reproductive use. Since this was denied by the Israeli Ministry of Health it has been appealed to the Israeli Supreme Court.
Ravitsky and Heyd argue in a commentary in Bionews that the reproductive rights of transgender individuals and their reproductive autonomy through the use of available fertility preservation techniques should be acknowledged. They base their argument on this case not being significantly different from things that have already been ethically accepted. They note that the Israeli Ministry of Health already considers sex reassignment surgery to be a legitimate medical procedure and that they allow IVF with donor gametes and surrogate mothers. They argue that having the social father of a child be the genetic mother of the child would not be ethically different than those situations that have already been accepted. They do express concern that there could be some psychological impact on the child, but suggest that having your social father be your genetic mother is no more confusing than having two male or two female parents. The door has been opened, so why not go through as far as possible?
It is interesting to think about what ethical boundaries have been broken to get to this place. One has to do with the acceptance of gender reassignment. If we see ourselves as people who have been created by God who has known us before we were born and loves us just as we are, it is hard to justify surgically altering our sexual identity. If the sexual reassignment is not permissible then the rest of this does not come up. Another has to do with our concept of procreation. If we see children as a gift from God, intended to be given to a husband and wife as a result of the physical expression of their love, rather than the result of a person’s presumed reproductive rights, then the use of third party gametes and surrogate mothers are outside of the permissible ways if creating children and the rest is not an issue as well. If we clearly draw the ethical lines on more basic issues then it is not hard to see that it is wrong to create a child whose father is also the child’s mother.
This month’s issue of Sexuality, Reproduction & Menopause, the journal of the American Society for Reproductive Medicine (ASRM), carries an article entitled “’Last-chance kids’: A good deal for older parents – but what about the children?” The article discusses the growing number of older, post-menopausal women giving birth through assisted reproductive technology (ART), and gives a thoughtful analysis of the ethical points surrounding the use of assisted reproduction in women past childbearing age.
As my clinical ethics professor always said, good ethics begins with good facts. The authors of the article provide good, pertinent facts: data not just on life expectancy at various ages, but – just as important when considering the energy needed for parenting – actuarial data on how many of those years are likely to be spent in good or excellent health. (Should we use ART to give a child to a woman who statistically has very little chance of staying healthy enough to raise the child through high school?)
The article continues by asking, “Is reproduction a right?” Remarkably, instead of invoking the free-for-all autonomy that plagues attempts at ethical analysis of reproductive rights, the authors quote an ASRM Ethics Committee’s report that “Reproductive rights protected under the United States and state constitutions are rights against state interference, not rights to have physicians or the state provide requested services … It is also important to recognize that constitutional rights to reproduce are, like all rights, not absolute and they can be restricted or limited for good cause.” Refreshing, to say the least.
The authors continue with a surprisingly candid evaluation of the consequences for the children of these older parents. They conclude with strong cautions about the use of of ART in the elderly which, while falling short of prohibiting the practice, nonetheless give the overzealous practitioner of such techniques reason to pause and consider.
I can understand why a woman might desire to have a child in her older years. However, the inability to conceive a child in one’s 6th or 7th decade of life can hardly be regarded as a disease, and I cannot see any compelling reason why medical technology should be used to treat it. As Dr. R. Landau wrote, “Childlessness is a complex concept, and children are neither medicine nor therapy. They should not be used as means to other people’s ends.” (Quoted in the linked article.)
Sometimes we need to remember the past. Of course that is what historians try to teach us. The recent translation into Italian of the 1920 German book Allowing the Destruction of Life Unworthy of Living by Karl Binding and Alfred Hoche prompted a reminder by Italian historian Lucetta Scaraffia about how the central idea of the book played out over the next few decades in Germany (see Washington Post article).
She suggests that the history of that idea is relevant to current bioethical issues. Some of those have been discussed recently on this blog. A few days ago Joe Gibes wrote about decisions to abort fetuses found to have major abnormalities such as Down syndrome. Back in December Jon Holmlund wrote about the use of PGD to diagnose embryos with major genetic disorders so that parents at risk for having a child with such a disorder could choose to give birth to a child without the disorder and not bring embryos with the disorder to birth.
Both the practice of aborting fetuses with a major disorder and doing PGD to choose which embryos should be brought to birth to avoid giving birth to a child with a genetic disorder involve the concept of a life unworthy of living that Binding and Hoche wrote about. If we make a decision to abort a fetus with Down syndrome or even one with a more serious disorder we are making a decision that the life of the person who that fetus will be is not worth living. If we choose to create multiple embryos and choose to implant those who do not have a serious genetic disorder so that they can live, but choose not to implant those who have the disorder so that they will not live we are saying that the lives that would be lived by those embryos who are discarded are not worth living. Whether one believes that and embryo or a fetus has full moral status or not they are unique individuals who have live that they would live if they are allowed to. Not allowing them to live those lives due to the presence of a disorder is saying that those lives are not worth living.
Remembering what happened in Germany helps us remember what a serious thing it is to say that a person’s life is not worth living. The idea that Binding and Hoche wrote about began as a philosophical concept, but it was embraced by the German government under Hitler as a reason for German physicians to put to death mentally deficient children whose lives were thought to be not worth living. Later that was expanded to large numbers of Jews and others whose lives were not thought to be worth living. The experience in Germany helps us to see that the idea that there are people whose lives are not worth living depends on a negation of the fundamental idea that every human life has inherent value. As Christians we understand that this value is due to our being created in the image of God. Even for those who do not have that understanding the inherent value of every human being underlies the concept of universal human rights that has become the foundation for global justice.
The German experience reminds us that there are some lines that we must not cross. One of those is saying that another human being has a life that is not worth living and using that as the justification for ending the life of an embryo or fetus.
The London newspaper The Independent recently reported that a researcher at Edinburgh University is ready to seek permission to try to produce human embryos by the fertilization of mature egg cells that have been produced from ovarian stem cells in the laboratory. The research team has taken immature human egg cells produced from ovarian stem cells by as researcher at Harvard and transformed them in the laboratory into cells that appear to be mature human eggs. The proof that they are mature eggs will be obtained by showing that they can be fertilized to produce human embryos. The embryos will then be frozen or destroyed since they are being produced for research and English law requires that they not be allowed to develop past 14 days.
The obvious ethical question is “Should we do this?”
Those who support doing this see the ability to develop fully functional human eggs from the stem cells found in the ovary as a way to provide the ability to have children for women who are past the time that their ovaries naturally produce eggs. They also express hope that the ability to produce new egg cells might be a way around the loss of ovulatory function that is associated with the development of menopause and its attendant problems. It would also be a way of producing a much less limited supply of eggs to use in research including cloning.
But should we do it?
Ethical concerns abound. Is it worthwhile to create and destroy human embryos to prove that a scientific technique is doing what it was designed to do? Is there any way to determine whether children born with the use of eggs developed from stem cells in the lab are at increased risk for defects without subjecting some children to those risks? How could you justify doing safety studies on children produced by this technique who could not give their consent? Would attempting to delay menopause by inducing the production of new eggs within aging ovaries be a good thing to do? Is it really good to make it easier to do things like human cloning?
For those of us who conclude that human embryos have full moral status it is clear that producing human embryos in the laboratory to confirm that this technique is successful and then destroying those embryos is wrong. Even those who do not think that human embryos have full moral status have reason to think that this is not a good path to start down from concern about the safety of the people who could be born using this technique.