Gene editing for genetic enhancement

By Steve Phillips

I appreciate the prior posts by Jon Holmlund and Mark McQuain regarding the recent announcement of the birth of genetically modified twins in China. Much has been written about why this should not have been done, but something very significant has been left out of most of those responses. They have failed to mention that the scientist who created the genetically altered twins was doing a form of genetic enhancement. As I have noted before, the only real reason for anyone to do research on the genetic modification of human embryos is to enable the possibility of human genetic enhancement. The scientist involved in this situation has recognized that and directly pursued it. I suspect that his open pursuit of enhancement is one of the reasons why he has received such a negative response from those who otherwise support the permissibility of using human embryos for experimentation on germline genetic modification.

The primary argument presented for why this was wrong is that he has subjected two healthy human infants to the unknown risks of genetic modification without any corresponding medical benefit to the infants. The modification was disabling the gene that codes for a cell membrane receptor that the HIV virus commonly uses to gain entry into cells it infects. The hope was that these infants would have enhanced resistance to HIV infection, although not complete immunity to such infection. The infants themselves would not have been at increased risk for HIV without the modification, but the parents had a desire to have children with increased resistance because their father has HIV and is aware of the difficulty of living with the disease. Thus, the modification was being done to provide an enhancement desired by the parents and was not being done to infants would have otherwise suffered from a genetic disorder.

Most who support current research to develop effective techniques for human germline genetic modification take the position that the safety of doing this has not been established well enough to use the technique to create infants and that when the research does reach the point that genetically modified human infants are created it should only be in situations in which those infants would otherwise have had serious genetic disorders. They are correct that this technique is currently unsafe but fail to realize that we will probably never be able to establish the safety of this type of genetic modification, because that would require safety data from multiple generations of these infants’ offspring. The idea of restricting this technique to infants who would have been born with serious genetic disorders and the idea that this technique could be used to rid the world of these genetic disorders does not make sense. If a couple desires to have children and know that they are at risk to have a child with a serious genetic disorder and have no moral concerns about the destruction of human embryos involved in such things as genetic modification, they can pursue selection of an unaffected embryo using PGD and have no need to take on the additional risks of genetic modification. Using genetic modification to eliminate genetic diseases would require a Brave New World scenario in which all human beings are artificially conceived and natural conception is prohibited. Therefore, the only reason to pursue the genetic modification of human embryos is for the purpose of human enhancement.

Let me be clear that I agree that what the scientist has done is wrong because he has subjected these two infants to significant risk without any significant medical benefit. That is always wrong. However, the strength of the negative response from those who generally support research to develop human germline genetic modification is likely due to the fact that he has opened up to public scrutiny the real purpose of such research. He has also shown that it is not true that we can ignore ethical concerns about enhancement because we could regulate the use of genetic modification so that would not occur. Enhancement was the goal of the very first use of this technique to produce human infants.

Thanksgiving and ethics

By Steve Phillips

It is good at times for us to stop and think about why we do the things that we do and what they mean. Tomorrow is Thanksgiving Day, a holiday that our society enthusiastically celebrates with lots of food, the gathering of families, and sporting events, followed by intense shopping. Historically Thanksgiving in America began with a group of Christians expressing their gratitude to God for what he had done for them. Christians continue to see this holiday as one during which we pause to remember what God has done for us and take time to express our thanks to him.

However, many in our society no longer believe in a personal God to whom gratitude is due. What does it mean to celebrate Thanksgiving if a person believes that those things that they are pleased to have are theirs due to a combination of chance and their own effort? Or if in our entitlement culture they believe that all that they have are things that they deserve. If that is the case, there is no reason for giving thanks and no one to whom thanks can be given. Instead of being a time of actually giving thanks to the one who has graciously given good gifts to us, the holiday has become a celebration of affluence and good fortune. Sporting events and shopping fit that very well.

How does this relate to ethics? The two different meanings of Thanksgiving correspond with two different ways of thinking about how we ought to live. For those of us who see Thanksgiving as a time to remember that the good things that we have come from God, it also reminds us that we are created beings who are made by and dependent on the God who has given us the things that we are thankful for. Remembering this helps us realize that God is the source of all that is good and that our understanding of what is right and how we ought to live comes from him as well. The alternative meaning of the Thanksgiving celebration is self-focused. If there is no God to be thankful to, the celebration is about the fulfillment of personal desires. That correlates with the ethics of moral individualism in which moral values are based on how a person feels and focused on fulfillment of personal desires.

Whether we see Thanksgiving Day is a time to actually give thanks to the God who is the giver of all good things or not makes a big difference in how we think about ethics.

Abortion by mail, part 2

By Steve Phillips

Last week I wrote about a European organization that has begun providing the medicines used for medical abortions by mail to women seeking abortions in the US following an online consultation. This violates the current restrictions that the FDA has on the prescribing of mifepristone, the primary medicine used for medical abortion. The restrictions exist due to safety concerns with the use of the drug. Those who think that those restrictions should be ended cite FDA statistics that show that serious harm to women who take the drug are quite rare. I concluded that the data indicate that it is hard to support the restrictions based on the risk of harm to a woman who chooses to use mifepristone.

I mentioned that there is another, somewhat perverse, risk that is usually not discussed which enters into the decision about whether the prescribing of should be limited to a certified prescriber dispensing the medicine in a clinical setting. That is the risk to the embryo/fetus. Those who support the use of mifepristone cite an effectiveness rate of 95-97%. That means that over 95% of the time the use of mifepristone in early pregnancy causes the death of the embryo/fetus and along with the use of misoprostol the pregnancy is ended with a medically induced abortion. In the 3 to 5% of cases in which this does not occur, some result in the death of the embryo/fetus, but the products of conception are retained within the uterus and may present some risk to the mother. As noted above, the observed risk to the mother turns out to be quite low. Sometimes when the process of medical abortion fails the embryo/fetus may survive. Mifepristone is an anti-progesterone. We know that medicines which alter the hormonal environment of an embryo can cause congenital anomalies. Therefore, there is a risk that if an embryo does not die and a subsequent surgical abortion is not done an infant may be born who suffers from congenital anomalies due to exposure to the medicines which were intended to cause a medical abortion. To prevent this, it is recommended that women who take the medicines for medical abortion who do not abort within the usual period of time have a surgical abortion. That would be the primary reason to support the FDA’s requirement that these medicines only be dispensed in a clinical setting by a certified prescriber. The role of the certified prescriber is to make sure that no embryo who is exposed to mifepristone survives to be born with the possible congenital anomalies.

Thus, we have a situation in which our society, as represented by the FDA, has decided that it is permissible to give a pregnant woman a medicine that will kill the embryo/fetus living inside her, but only if the medicine is dispensed in such a way that it can be assured that the embryo/fetus will be killed and not survive with an abnormality caused by the medicine. I said this was perverse. It is what we get when we have a society that puts a higher value on avoiding suffering than the value placed on human life.

Abortion by mail

By Steve Phillips

A recent article on the CNN website reports on a European organization called Aid Access which has recently made the medicines used for medical abortion available to women in the US by mail. The organization utilizes telemedicine in the form of online consultations to prescribe the abortion drugs from a pharmacy in India to be mailed to the woman desiring an abortion in the US. It is clear that this violates FDA regulations. To ensure the safe use of mifepristone the FDA currently requires that the drug, which has no medical indication other than induction of abortion, is only available to be dispensed in clinics, medical offices and hospitals, by or under the supervision of a certified prescriber. At issue is whether those restrictions should be lifted to allow more open prescribing of mifepristone.

The appropriate reason for the FDA to have additional restrictions on certain drugs is safety. Those who advocate lifting the restrictions on mifepristone argue that the safety of this drug has been established and cite FDA statistics that the risk of death from using the drug to induce medical abortion is only one in 155,000. This makes its use much safer than either surgical abortion or continuing a pregnancy to term. Those who oppose lifting the restrictions counter with concerns that the unsupervised use of the drug may also lead to failure to diagnose ectopic pregnancy and can result in situations that require surgical intervention, which may have increased risk in an unsupervised patient.

While there are risks to the use of mifepristone, it is hard to make the case that the risk of harm to the mother is high enough to warrant the additional restrictions that currently are required for this drug. That makes it hard to justify limiting access due to true concern about the risk to the woman whom uses it. This is not the case for another regulation regarding abortion. Laws that require abortion clinics to meet the same standards as outpatient surgery centers have a clear justification. Surgical abortion has similar risks to other outpatient surgeries, so it is reasonable to require the same safety measures for an abortion clinic and an outpatient surgery center.

There is one risk related to the use of mifepristone, which is not usually discussed, which does support the additional restrictions on its distribution, but in a somewhat perverse way. That will be the focus of my next post.

Starting with moral conclusions vs. foundational principles

By Steve Phillips

Last week I wrote about how Jeremy Williams’ moral position on sex-selection abortion was influenced by his position on abortion itself. Reflecting a little more on what he wrote raises the question of what comes first in our reasoning about a moral issue. Do we start with fundamental principles or with previously held moral conclusions? It is not a simple question.

Abortion is such a significant issue that it tends to dominate bioethics at times. Ethicists who defended the permissibility of a woman choosing abortion in the 1970s seemed to begin with the idea that abortion was permissible and then work back to reasons to support that position. Those reasons included an analogy of a violinist being attached to a person without her permission and the idea that some human beings were not actually persons. However, this process of starting with a conclusion is not exclusive to those who support abortion. Many of my students begin with a strongly ingrained belief that abortion is wrong without a good understand of why they believe that. They then address other issues according to how that would affect their belief that abortion is wrong.

My first reaction is that proper moral reasoning should begin with foundational moral principles, but those who take the casuist approach to ethics say that rigidly following principles can lead us astray. They say we should we should begin with a paradigm case in which the moral conclusion is clear and then determine how much the situation we are considering is like and unlike the paradigm case. Even Beauchamp and Childress who have helped to define the principles of biomedical ethics say that those principles are in a significant way influenced by our considered moral judgments and not just based on ethical theories.

So why do I think we should start with foundational principles? That goes back to why I think there is such a thing as moral right and wrong. I believe that morality itself exists because we were created by and live in a world created by a moral being who is by nature good. God’s innate goodness causes ethics to exist. If we were the result of chance and unguided evolution, we would have no reason to believe that such things as right and wrong exist. If ethics exists due to the moral character of God, then God’s moral qualities are the foundation of ethics. His expression of those qualities in scripture and through his incarnate Son form the foundational principles for ethics. That is where we need to start.

Noninvasive prenatal testing and sex-selection abortion

By Steve Phillips

The National Health Service in Great Britain has decided to implement the use of noninvasive prenatal testing (NIPT) and that has raised some concerns. It would seem natural for there to be concern about this test used to detect prenatal genetic conditions such as Down syndrome, which commonly leads to the choice to abort the fetuses with those conditions. However, according to a recent article in The Conversation by Jeremy Williams one of the major concerns is the use of this technique to facilitate sex-selection abortion. Williams states that one of the major political parties has proposed a policy of banning the use of NIPT for sex determination and has described sex-selective abortion as “incredibly unethical”.

Williams concedes that the idea that sex-selection abortion is morally wrong and ought to be prevented is widely held even by those who otherwise have no moral objection to abortion but suggests that taking that position is problematic for those who believe that a woman has a right to choose to have an abortion. Williams lists several reason that people give for why the sex-selection abortion is wrong. These include idea that sex selection abortions are done due to a trivial preference, concern that sex selection abortion constitutes unjust discrimination against female fetuses, concern about women being coerced into this type of abortion, and that it teaches that the lives of girls are not as important as boys. He is concerned that if these reasons are accepted they would apply more broadly than to just this one type of abortion, and he is right. Many abortions are done for reasons that seem trivial compared to the value of the life of the fetus. Any abortion that is done because of the characteristics of the fetus, including having a genetic disorder such as Down syndrome, are both unjust discrimination against those who have such a disorder and express a message that people who have such a disorder do not have the same value as those who do not. Many women are pressured into having abortions, and do not actually freely choose them.

The problem with what Williams has written is that sex-selection abortion is just clearly wrong. It is wrong to kill a fetus because that fetus is female and end the life of the girl and woman who that fetus would have become just because she is female. That is a clear violation of women’s rights. The fact that this helps us see that abortions in other situations are also clear violations of more universal human rights should make people question whether those abortions are also wrong. It does not mean that sex selection abortion is permissible.

Avoiding advanced dementia, part 2

By Steve Phillips

Last week I wrote about one of my moral concerns regarding Norman Cantor’s proposal to avoid advanced dementia, which he views as being intolerably degrading, by using an advance directive stating that when he reached a certain level of dementia he no longer wanted to eat or drink so that his death would result. My concern with this was that the person caring for him would have to concur with him that his life at that time was no longer worth living in order to justify following his directive and cease to feed him and give him fluids to drink. An independent assessment that another person’s life is not worth living is required of any physician or other caregiver who participates in euthanasia or assisted suicide. Such a determination that another person’s life is not worth living is something that we should never do and the need for that determination is a fundamental reason why euthanasia is not permissible.

Dena Davis in her article “Avoiding Dementia, Causing Moral Distress” agrees with Cantor that a person ought to be able to use an advance directive to end his own life to avoid advanced dementia, but sees a flaw in Cantor’s plan. She writes, “As long as the demented person is enjoying her diminished life, it will be psychologically and emotionally difficult, perhaps impossible, for most people to withhold food or even simple medical interventions. Even if they believe they ought to comply with the advance directive, the moral distress is simply too great.” She concludes that since a person cannot rely on others to follow an advance directive like Cantor’s, the only way to avoid advanced dementia is preemptive suicide. The article “A Debate over ‘Rational Suicide’” in the New York Times describes 80-year-old Robert Shoots doing just that.

My second concern is that it is wrong for us to choose to end our own life by rational suicide even if no one else participates in that act. Autonomy and personal liberty are important, but there are some things that can be wrong to do even to ourselves. This is easier to see from a Christian perspective. Christians understand that our lives belong to God and we do not have the authority to end our lives. That authority belongs to God alone. We have been commanded not to kill any innocent human being because we have all been made in the image of God. That includes a command not to end our own lives.

It can be harder for someone who does not understand that his life belongs to God and has value because he has been made in God’s image to see why rational suicide would be wrong. However, all of us are relational beings. We are connected to our families and the rest of humanity. What we do to ourselves impacts others. Those who contemplate rational suicide to avoid things such as advanced dementia forget how their deaths impact others. They have a desire to avoid a part of life they do not want to live and may want to relieve those who love them from the burden of caring for them but caring for those we love when they become dependent is an opportunity for us to be more fully human. Caring for a loved one with dementia is very hard but is one of the ultimate expressions of human love. We should not take that away from those who love us.

Avoiding advanced dementia

By Stephen Phillips

Norman Cantor has prompted widespread discussion with his recent article “On Avoiding Deep Dementia” in the Hastings Center Report (link is to the abstract only). In his article he states that he finds the possibility of living through progressive cognitive dysfunction and helplessness an intolerably degrading prospect. As a result, he has proposed using an advance directive stating that when he would reach a certain level of cognitive impairment, which would include having lost the capacity to make his own medical decisions, his advance decision to voluntarily stop eating and drinking would be implemented resulting in his death. He argues that it would be morally proper for those caring for him at that point to follow his prior instructions even if he showed no appearance of suffering at that point in his life.

There are many moral concerns related to Cantor’s proposal. I would like to address two concerns. Today I will address a concern that his proposal has in common with any form of euthanasia or assisted suicide that requires the assistance of someone other than the person who is choosing to die. In a later post I will address the issue of true rational suicide in which no assistance from a second party is required.

By proposing a strategy for avoiding advanced dementia that involves waiting until after he is unable to make decisions on his own, Cantor has required that someone other than himself who is providing care for him must implement his instructions. He sees that as respect for his autonomy, but whenever a second person enters into an act of euthanasia that person must make an independent decision that it is reasonable to agree that the life of the person who is to die is not worth living. This is true whether the act that is being requested of them is active euthanasia, assisted suicide, or cessation of eating and drinking. We are not morally obligated to do anything that another person requests of us. One qualification for fulfilling a request from another is that the request be reasonable. If there are any circumstances under which it is morally permissible to participate in ending another person’s life it could only be when that person’s life is no longer worth living. While it might be maintained that a person could make that determination about his or her own life, anyone assisting in that death needs to make an independent decision that the person’s life is not worth living in order to determine that this is a reasonable request which should be granted. However, we should never make a determination that another person’s life is not worth living. Our concepts of human equality, universal human rights, and justice all depend on the idea that every human life has value. All of that is undermined if we can say that there are some human lives that no longer have value.

Cantor’s proposal requires that someone caring for him after he has been become unable to make his own decisions agree with his previous determination that when his dementia reached that point his life would no longer be worth living and should be ended. That is something that we should never do.

Human limitation and ethics

By Steve Phillips

I recently read Cody Chambers’ article “The Concept of Limitation in Emil Brunner’s Ethics” in Ethics in Conversation from the Kirby Laing Institute for Christian Ethics. The article is well done and you need to read it to get the full impact of what he has said. What resonated with me was the idea that being limited is a part of what it means to be human and that our limitations are essential for our relationship with God and each other. It is our limitedness that helps us see that we need both God and other people and that we were made for those relationships. This is central to ethics because it is in our relationships with God and other people that we find our understanding of what ethics is.

This understanding that we are in our nature limited beings created by an unlimited God could not be more different from the conception of human beings held by many in the culture around us. They desire to see human beings and particularly themselves as having unlimited potential and freedom with no creator at all. That desire for personal freedom dominates contemporary ethics and shows itself in all areas of bioethics.

Chambers looks at how this impacts thinking about gene editing. Those who advocate doing human germline genetic modification see it as the freedom to create a child who is made to be what the parents creating the child desire the child to be. This is usually expressed in terms of creating a child free from genetic disease, but there are simpler ways to have a child without a disease carried by the parents (including adoption). It is ultimately the desire to be free of natural human reproductive limitations and create a child we have designed and chosen. Being limited helps us to see that we need each other and must respect others, including our children, as they have been made by God. Our natural lack of control over the characteristics of our children leads to an understanding that those children are a gift from God that we should accept unconditionally. Using technology to try to take control of the creation of our children leads to creating children that will fulfill our desires and a loss of the unconditional acceptance that is the foundation of a positive parent-child relationship.

Freedom in the proper context is good. The desire for unlimited freedom leads to putting ourselves above others and ultimately controlling and subjugating others, including our children, to our desires. Proper ethics requires an understanding that our freedom is limited.

Risk and reproductive freedom

by Steve Phillips

A recent article in The Atlantic titled “The Overlooked Emotions of Sperm Donation” discusses concerns about the emotional problems and conflicts that can occur in families that turn to sperm donation is a way of creating a child amid infertility. The article focuses mostly on heterosexual couples dealing with male infertility who have used sperm donation. In those families there are commonly emotional problems faced by the man when the couple has a child to which he is not genetically related, and there are problems that can occur between the couple who is raising the child and the sperm donor and his family when a known or related donor is involved. The author expresses concern that many couples who choose sperm donation are not aware that these emotional problems can commonly occur and fail to reflect carefully about these concerns or do preventive counseling to deal with them.

The article is well-written and raises concerns that people need to be aware of, but there are some things that are missing. The author briefly addresses the emotional concerns of the child and mentions that there have been some children’s books written to help children deal with those concerns, but the emotional difficulties for a child conceived in this way are very significant. There is also no discussion of whether concern about the emotional difficulties for all the parties involved including the child, the parents raising the child, and the donor and his family might be a reason to consider not having a child by means of sperm donation. There is an underlying assumption of reproductive freedom, the idea that people should be free to fulfill their desire to have a child by any means that they choose. The author properly advocates for the position that potential parents considering this option should be fully informed about the emotional risks as well as any physical risks and should consider preventive counseling, but never mentions the possibility of deciding not to create a child in this way because of the risks.

When we discuss the risks of reproductive technologies, whether those be physical risks or emotional risks, we need to remember that imposing risks on a child to fulfill the desires of an adult individual or an adult couple is a serious moral concern. Despite our society’s focus on autonomy, there are some things we should not do to meet our own desires when doing so puts another person at risk, particularly if the person being put at risk is a child that we are creating.