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.
BY STEVE PHILLIPS
Over the past few days I have been reflecting on this year’s CBHD conference which was titled Bioethics and Being Human. In reviewing all the thought-provoking presentations and discussions, I think the opening address by Dennis Hollinger impacted me the most. His talk was entitled Why Humanness Is the Key to Bioethics. He began by saying that in the culture around us the focus has shifted from concept of human dignity to the concept of humanness or what it means to be human. He suggested the technology which is developing artificial intelligence that may be able to reason and robots that take on roles that we have traditionally considered to be human raises questions about what counts as a human being.
The core of what he said related to the idea that there has been a shift in how the culture around us thinks about these things. Our surrounding culture now questions whether there can be an essence of realities. If the existentialist assertion that existence precedes essence is true and there is nothing outside the self to define the self, all our concepts, including our understanding of humanness, become subjective.
Those of us who see the world from a biblical Christian viewpoint understand that there are objective realities in the world. We see that human beings do have a nature, a humanness, that is not subjectively defined, but it is an objective reality that exists due to how we have been created by God. We find that objective understanding of what it means to be human represented in the ultimate human being, Jesus.
But how do we express this understanding of an objective reality of humanness to people in a culture that believes that everything is subjective? I think Hollinger suggested a strategy when he identified the ironies of our surrounding culture’s thinking. He said that the surrounding culture rejects humanness, but longs for relationship; rejects intrinsic moral norms, but longs to be treated justly and honestly; and rejects human meaning, but longs for something beyond. We live within a culture that leaves people without a solid foundation for meaning, relationship, and values. That foundation is available in the God who created us and in his Son, who became one of us, died for us, and rose again to redeem us. He is the essence of humanity and we can share Him with those around us who are deeply in need of the hope that He can provide.
When people present an argument for the moral permissibility of euthanasia they commonly start with a case in which a person is suffering from a terminal illness and has uncontrolled pain. They say that we should have no moral reason to say that it is wrong to assist those in such a condition who choose to end their life as a means of ending their suffering. This is a combination of two arguments. One is the argument from compassion that says that we have a moral obligation to minimize suffering and that euthanasia should be used if it is the most effective way to eliminate a person’s suffering. The other is the argument from respect for autonomy that says that people should be able to make decisions about their own lives, which should include the decision to end their lives, and that their physicians should respect those decisions. It has been pointed out by many who take the position that euthanasia is wrong that if these are good arguments for the permissibility of euthanasia they should be able to stand on their own. If we take these arguments individually, they lead places we should not want to go.
A couple of weeks ago I wrote about the concerns that many who live with disabilities have regarding the argument from compassion. It says that it can be the right thing to do to end a person’s life when that life is no longer worth living. They are concerned that if they become unable to make their own decisions someone will decide their lives are not worth living and they will be euthanized nonvoluntarily.
A recent case of joint euthanasia by a married couple in their mid-nineties in Canada reported in the Globe and Mail shows what can happen when the argument from respect for autonomy is taken by itself. George and Shirley Brickenden, who had been married for nearly 73 years, choose to die together. They died by lethal injection while lying on their bed holding hands in the presence of their children and clergyman. There was question about whether they both met the criteria of the Canadian law, which requires that the person receiving assisted death be suffering intolerably from a grievous and irremediable condition and that death is reasonably foreseeable. Even though Shirley suffered from long-standing rheumatoid arthritis and heart problems and George had recently begun having fainting spells from a heart rhythm problem, the primary reason for choosing euthanasia was that they did not want one of them to die and leave the other behind.
If the argument from compassion is a reason to accept euthanasia then we must accept nonvoluntary euthanasia in spite of the concerns of those with disabilities. If the argument from respect for autonomy is a reason to accept euthanasia then we must accept euthanasia for any reason given by a rational person including the desire of a married couple not to have one spouse survive longer than the other.
Rather than going to these extremes it seems reasonable to accept that there are limits to the things we ought to do to diminish suffering and there are limits to how far we should go in respecting a person’s autonomy. The intentional killing of an innocent person lies outside those limits.
This week the students in the medical ethics class that I teach are looking at the issue of euthanasia and physician assisted suicide. An article in The Catholic Register reminded me of the important role that people with disabilities have played in the public discussion of euthanasia. The article discusses the concerns that Taylor Hyatt, policy analyst and outreach coordinator for the disability rights group Not Dead Yet, has expressed about assisted suicide in Canada. She is concerned about proposals being considered to expand the Canadian Medical Aid in Dying (MAiD) law “to include mature minors, allow advanced directives for those with a dementia diagnosis, and allow MAiD for those with psychological suffering without the necessity of death being reasonably foreseeable.” She also expressed concern that under the present law no one is looking to see if those seeking assisted death have unmet accessibility needs that are pressuring them to end their lives.
From the earliest discussions about legalizing physician assisted suicide in the US, disability rights groups have played a significant role. They recognize that with any form of euthanasia the physician who chooses to assist in causing another person’s death must agree that the person’s life is not worth living. If we say that it is ever permissible for one person to say that another person’s life is not worth living, then it opens the door to people thinking that a the life of a person with disability is not worth living and that it would be best if that person’s life would be ended. Thus, even fully voluntary euthanasia puts those who are disabled at risk for nonvoluntary euthanasia. Actually many more than those with disabilities are at risk, but the marginalization that they experience makes them more sensitive to the risk.
We should listen to them.
This is the week when we who are Christians particularly focus on the death and resurrection of Jesus. As I have been reflecting on this I have been thinking about how Jesus’ death and resurrection impact how I think about bioethics. I think that the largest impact is on how I think about death.
Whether we realize it or not, much of bioethics is impacted by how we view death. This is most clear when we are thinking about end-of-life issues. Some of the most difficult medical decisions that people must make are related to how aggressively we should try to prevent death and when we should accept the inevitability of death and focus on palliative care. However, it also impacts beginning of life and reproductive issues, because many times those issues are significantly impacted by our understanding of who has the type of moral status that says we should not cause the death of that person. It is also the foundation of transhumanist desires to go beyond the limitations of human mortality.
How does Jesus’ death impact how I think about death? It reminds me that death is the result of evil and may involve deep suffering. It was not a part of God’s original good creation but is a part of the brokenness of that creation caused by human sin. It reminds me that we have a God who understands what it means to suffer and die and can truly love us with a compassionate love. Jesus’ resurrection reminds me that he not on the understands death but has defeated it. We who follow him can know that death is not the end. We have a hope that goes beyond death that changes how we think about it.
Understanding God’s compassionate love for us can help us live with a deeper compassion for those around us. Having a hope that goes beyond death and an understanding that there can be meaning in suffering allows us to face the reality of our own deaths without fear. When we are at peace with our own death we can better help others, who are dying. We can understand that death itself is evil and that it is good for us to develop medical treatments and administer them to people in order to prevent death, but also understand that preventing death is not our ultimate goal because we can have a relationship with God that is eternal.
Even though I teach bioethics and teach about advance directives, I was not aware that there was such a thing as a psychiatric advance directive until I read this article in the online magazine STAT, which I found while browsing the articles listed on Bioethics.com.
The concept of a psychiatric advance directive makes so much sense that I am amazed that I hadn’t thought about it or read about it before now. Psychiatric advance directives allow people with a psychiatric illness that causes them at times to be incapable of making decisions about medical care to make and record decisions about treatment during times in which their disease is under control and they have capacity to make those decisions. This allows them to consent in advance to much needed treatment which they might refuse during times of incapacity and give direction on what treatments they would not consent to during those times of incapacity. It allows people with psychiatric illness to have control over their own lives that they commonly lose when the illness takes away their decision-making capacity. It can also help assure that they receive treatment from those that they know and trust.
This is something that many of us who are not psychiatrists need to be aware of so that we can encourage patients to take control of their own care in a positive way. When I investigated this, I discovered that my own state, Indiana, has a law regarding psychiatric advanced directives that makes them legally recognized and outlines the proper way to make such a directive. The National Resource Center on Psychiatric Advance Directives is an excellent resource on this issue.
This is something people need to know about.
Recently I read the detailed account of what has happened with Jahi McMath, titled “What Does It Mean to Die?” in the most recent issue of The New Yorker. It made me reassess what I think about the concept of brain death. Four years ago, Jahi McMath was a thirteen-year-old African American girl who had a tonsillectomy to treat severe sleep apnea. She had a cardiac arrest due to postoperative bleeding with a prolonged 2.5-hour resuscitation and ended up on a ventilator. She was later determined to meet the criteria for brain death, but her family refused to allow her to be taken off the ventilator. They had serious concerns that she had not received the care she should have received prior to her arrest and had little confidence in the doctors or hospital that were telling them that she was dead. Four years later her vital functions continue to be maintained on a ventilator and some medical experts are convinced that she no longer meets brain death criteria and may be in a minimally conscious state.
When I think about the concept of brain death, what is important in accepting it as a valid way to determine that a person is dead is that brain death involves both loss of function of the entire brain including the brain stem and that the loss of function is irreversible. Accepting that loss of cognitive function alone could define death puts anyone with impaired cognitive function at risk of being treated as if they were dead. Loss of brain stem function is more closely related to the functions of the brain that keep us alive and fit better with the determination of death. However, it is critical that this loss of entire brain function is irreversible. We do not consider a person in cardiac arrest who is able to be resuscitated to be dead, because that person’s loss of heart and lung function is reversible. This case calls into question whether we are able to determine that loss of complete brain function is irreversible.
It appears to be quite possible that this girl who was diagnosed as being brain dead did not have the irreversible loss of complete brain function that is essential for the definition of brain death. It is recognized that the criteria for diagnosing brain death are different in children and adults and that the diagnosis may be more difficult to make in children. Her case leaves us with some significant questions. Are the criteria that we have for determining a diagnosis of brain death accurate enough in predicting the irreversibility of loss of whole brain function to be reliable in making the diagnosis? Do we need absolute certainty in diagnosing brain death? Every decision we make in medicine involves some uncertainty. Diagnoses are seldom absolute. We make life or death decisions with limited information. People die due to inaccurate diagnoses even when everything has been done properly and the diagnosis has been made with all due care. Sometimes, despite our best efforts, we are wrong. Is diagnosing brain death any different from other life or death decisions we make? How much inaccuracy can we accept in the diagnosis of brain death?
A recent article in the Daily Mail brought my attention to recent research by the British assisted reproduction scientist Simon Fishel (see abstract) on a technique which can help select which early developing embryos produced by IVF are most likely to result in a live birth when they are implanted. This technique in evolves repeatedly photographing the developing embryos and using a computerized process to assess which embryos are showing the developmental characteristics that are associated with successful live birth. The study indicates that they were able to achieve a 19% increase in the number of live births in women under age 38 and a 37% increase in live births in women over age 37 by using this technique compared to conventional ways of selecting the healthiest appearing embryos.
On the surface the study appears to be about a simple process for making a particular form of biotechnology more effective and more efficient. What caught my eye from an ethical standpoint was the way in which this study demonstrates how biotechnology is so completely focused on the fulfillment of human desires that it tends to ignore any other concerns. The human desire that drives infertility treatment is the desire to give birth to a baby. The study shows how a particular improvement in technique makes it possible to fulfill that desire in a higher percentage of patients. What is interesting is that the focus on fulfilling that desire is so complete that there is no mention of what happens to the embryos that are not selected when their photographs are input into the computer-generated profile for selecting the best embryos. It also says nothing about whether the babies who are born using this process are healthier or less healthy than those using conventional techniques. The sole focus is on whether the desire to give birth to a baby is fulfilled.
Having technology that can help us fulfill our desires can be beneficial, but effective technology tends to be very focused on what it accomplishes. Life and particularly the moral life is more complex than that. We need to evaluate our desires to see if they are worthwhile. We need to consider what effects it may have on others if our desires are fulfilled. Since technology is successful when it fulfills our desires it may lead us to think that we are doing well when we have effective ways to fulfill those desires, without stopping to consider whether our desires and the means that we choose to fulfill them are good.
We live in a culture in which moral relativism, or what some would call moral individualism, seems very inviting to many. This is not a new thing. Twice in the book of Judges the writer says about the people of Israel that “everyone did what was right in his own eyes.” (Judges 17:6 and 21:25) This happened to Israel because they, like us, were fallen human beings more interested in themselves than anyone else and because of their tendency to absorb things from the cultures of the nations around them. However, they had been given something better than this.
Before his death and in preparation for the nation of Israel crossing the Jordan river to take possession of the land that God had promised to them, Moses reminded God’s people that God had given them something even more important than the promised land. He had given them his law. He let them know that when they lived out the commands that God had given them the nations around them would take notice and say about Israel “Surely this great nation is a wise and understanding people.” (Deuteronomy 4:6)
Think a little about what Moses was saying. The nations around Israel were living by the relativistic principle of everyone doing what was right in his own eyes, but they would recognize that living according to God’s objective moral commands made Israel a wise and understanding people. Even though many today live according to moral relativism, those who look at ethics more closely realize that ethics is meaningless without some type of objective standards. Few still follow the course of the skeptics. Even the utilitarians who dominate modern secular ethics hold to objective principles that allow them to say that it is better to do what is best for everyone than to simply do what is best for oneself.
It is also interesting, however, that it was not Israel’s eloquent proclamation and rational defense of God’s commands that would impress the surrounding nations. It was what the nations would see when they observed Israel living in obedience to God’s commands that would convince them of the wisdom of those commands.
We who understand God’s objective moral truth need to be ready to express those truths clearly, but it is living by those truths that will impact the world around us.
After writing about how the events of the first Christmas influence how we think about personhood I read something that made me realize how distorted some of the views of personhood are in our society. I was reading an essay by James Toomey in the Hastings Center Bioethics Forum titled “Is Noninvasive Prenatal Genetic Testing Eugenic?” Toomey was responding to an earlier article by Vardit Ravitsky in which Ravitsky draws on a disability rights argument to say that the promotion of widespread prenatal testing and abortion as a means of reducing the societal burden of genetic disease is morally problematic and a form of eugenics in its negative sense. Toomey says that Ravitsky’s concern is not valid.
Setting aside the moral concerns about abortion done for any reason, the thing that struck me was one of Toomey’s arguments. He says that reducing the number of people with genetic disorders by prenatal testing and abortion “is closer to a cure than an assault on personhood.” He says that “narrative or social identity is what we care about when we think about personhood.” Therefore, if a couple plans to have a child, conceives, discovers the child will have Down syndrome, aborts the child, and then conceives again and gives birth to a child without Down syndrome, he says this can be seen as involving a single person who has been cured of Down syndrome. He claims this removes the eugenic associations from prenatal testing to reduce the number of people in society with a disorder such as Down syndrome.
Saying that the two children in this scenario, one aborted and one brought to birth, can be considered one child even though they are genetically distinct and conceived at different times is a serious problem with this view of personhood. We live in a time in which people believe at once the contradictory ideas that the only things that are real and knowable are those things that are material and empirically verifiable and that human persons are completely nonmaterial entities defined by narrative and social identity. The latter leads to this bizarre idea that these two distinct children, one dead and one living, are one person. The first leads to other problems.
It turns out that this is another place in which our understanding of Jesus can help us understand who we are as human beings. The early church had to deal with heresies that said that Jesus was either physically real but not divine or divine but not a physical being. The early creeds addressed these ideas by asserting the biblical truth that Jesus was both a physical and spiritual being who was at the same time fully human and fully divine. In a similar way human beings are composed of intimately connected material and immaterial aspects of who we are. Denying either of those aspects of our being leads to great misunderstanding of who we are. Not understanding who we are leads to poor ethical judgments.