Men without chests

One thing that is essential for us to be able to think well about bioethics is an understanding of who we are as human beings. One aspect of that which has been discussed on this forum is the concept of human dignity, the idea that all human beings have inherent value which impacts how we interact with each other ethically. For Christians that is grounded in the idea that we are all created in the image of God. John Kilner has expressed so very well how our being created in the image of God is the reason why people matter.

C. S. Lewis wrote about another aspect of how we understand ourselves as human beings back in 1947 in a little book titled The Abolition of Man. The first chapter of that book is titled “Men without Chests.” As a medieval scholar he was using a medieval image to express a concern that he had about how the tendency to deny the existence of objective moral truth in his day was leading to a problem with how we function as human beings. In the image that he is using the head represents intellect or reason, the chest (or heart) represents sentiments or values, and the stomach represents the appetites or desires. He says that if we believe that statements about morality or values are simply statements about how we feel and are not statements that can be considered objectively true or false, then the chest has lost its ability to mediate between the head and the stomach. Without objective moral values humans become beings whose intellect is used to achieve their desires without any means of controlling those desires.

What Lewis predicted is where much of our society is today. We are told that our identity is based on our desires, and that if we do not fulfill our desires then we are denying who we really are. Anyone who would suggest that our desires might be wrong or that we should not fulfill those desires must hate us and is attacking us and making us unsafe. Our desires define who we are, and our intellect is given the task of fulfilling those desires.

This is in stark contrast with a Christian concept of who we are as human beings. We understand that as human beings we are created by God in his image and with a purpose. We also understand that we are fallen. This world is not how it ought to be and we are not how we ought to be. Because we are fallen, our desires are frequently wrong. Our identity is not found in our desires, but in our relationship with our creator. We understand that our creator has given us the capacity to understand which of our desires are right and which are wrong. He has enabled our intellect to comprehend objective moral values that are grounded in the goodness of God’s nature. Those moral concepts allow us to distinguish right from wrong desires. That is what ethics is about. Those moral concepts also help us understand that we fall short of what we ought to be. We need help. That is what the gospel is all about. That is why Jesus died and rose again as we just celebrated at Easter.

The idea that our desires define who we are and must be fulfilled creates men without chests who are incapable of distinguishing right from wrong and can only express how they feel about a moral issue. We must have chests which hold to objective moral truths to think ethically and be complete human beings who are not simply ruled by our appetites.

Are AI Ethics Unique to AI?

A recent article in Forbes.com by Cansu Canca entitled “A New Model for AI Ethics in R&D” has me wondering whether the ethics needed for the field of Artificial Intelligence (AI) requires some new method or model of thinking about the bioethics related to that discipline. The author, a principal in the consulting company AI Ethics Lab, implies that there might be. She believes that the traditional “Ethics Oversight and Compliance Review Boards”, which emerged as a response to the biomedical scandals of World War II and continue in her view to emphasize a heavy-handed, top-down, authoritative control over ethical decisions in biomedical research, leave AI researchers effectively out-of-the-ethical-decision-making loop.

In support of her argument, she cites the recent working document of AI Ethics Guidelines by the European Commission’s High-Level Expert Group on Artificial Intelligence (AI HLEG). AI HLEG essentially distilled their AI ethical guidelines down to the familiar: Respect for Autonomy, Beneficence, Non-Maleficence, and Justice, as well as one new principle: Explicability. She downplays Explicability as simply the means to realize the other four principles. I think the demand for Explicability is interesting in its own right and will comment on that below.

Canca sees the AI HLEG guidelines as simply a rehash of the same principles of bioethics available to current bioethics review boards, which, in her view, are limited in that they provide no guidance for such a board when one principle conflicts with another. She is also frustrated that the ethical path researchers are permitted continues to be determined by an external governing board, implying that “researchers cannot be trusted and…focuses solely on blocking what the boards consider to be unethical.” She wants a more collaborative interaction between researchers and ethicists (and presumably a review board) and outlines how her company would go about achieving that end.

Faulting the “Principles of Biomedical Ethics” for failing to be determinant on how to resolve conflicts between the four principles is certainly not a problem unique to AI. In fact, Beauchamp and Childress repeatedly explicitly pointed out that the principles cannot be independently determinant on these types of inter-principle conflicts. This applies to every field in biomedical ethics.

Having an authoritative, separate ethical review board was indeed developed, at least in part, because at least some individual biomedical researchers in the past were untrustworthy. Some still are. We have no further to look than the recent Chinese researcher He Jiankui, who allegedly created and brought to term the first genetically edited twins. Even top-down, authoritative oversight failed here.

I do think Canca is correct in trying to educate both the researchers and their companies about bioethics in general and any specific bioethical issues involved in a particular research effort. Any effort to openly identify bioethical issues and frankly discuss potential bioethical conflicts at the outset should be encouraged.

Finally, the issue of Explicability related to AI has come up in this blog previously. Using the example of programming a driverless car, we want to know, explicitly, how the AI controlling that car is going to make decisions, particularly if it must decide how to steer the car in a no-win situation that will result in the death of either occupants inside the car or bystanders on the street. What we are really asking is: “What ethical parameters/decisions/guidelines were used by the programmers to decide who lives and who dies?” I imagine we want this spelled-out explicitly in AI because, by their nature, AI systems are so complex that the man on the Clapham omnibus (as well as the bioethicist sitting next to him) has no ability to determine these insights independently.

Come to think about it, Explicability should also be demanded in non-AI bioethical decision-making for much the same reason.

The new WHO advisory panel on human gene editing

By Jon Holmlund

The World Health Organization (WHO) has empaneled an expert advisory committee to propose standards for governance and oversight of human gene editing.

This group is to meet in Geneva on March 18 and 19 to review the state of the field, broadly, and formulate a plan for its work, over the ensuing 12-18 months.  Sounds like your basic organizational meeting. 

The WHO website does not specify a more detailed charge for the committee, which no doubt will determine its goals.  It is said to have been formed “after an open call for members,” implying, I suppose, that the members volunteered, as opposed to being invited or otherwise prevailed upon.

The co-chairs are Edwin Cameron, former Justice of South Africa’s Constitutional Court, and Margaret Hamburg, who, among her other positions, was FDA Commissioner under Barack Obama.

A review of the full list of biographical sketches for the members shows that they are a truly international group, representing nations from the developed and developing world, and from all continents (except Antarctica, of course).  They are a mix of physicians, biologists, and ethicists.  None appears immediately recognizable from the recent media coverage of human gene editing.  If there are members with a specific interest in promoting technology, that is not obvious from the list, which WHO further says was limited to people screened carefully for conflicts of interest.

One can tell but little from such bio sketches, but in this case it at least appears that a broad range of cultural perspectives will be represented.

There is no clear representation for a theistic or religious perspective.  Also, because the work of such a group naturally draws and involves scientific specialists, the broader, non-scientific, “lay” public is not represented.

Past work by these members addressing gene editing will be of interest to review, which your present correspondent has not, yet.

One hopes that this group will offer wise counsel that, as discussed in prior posts to this blog and elsewhere, goes beyond the usual, limited “benefit-risk” estimates that characterize Western bioethics.

But it will unavoidably not constitute the broad, cosmopolitan, multinational and multiethnic, naturalistic and theistic dialogue that is hoped for—probably too much to hope for, too much to ask of a group of 18 people—in advance of broad adoption of heritable human gene editing, which appears inexorable.

Godspeed and best of success to this group—follow its work as closely as possible. ity51 \lsdl

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.

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.

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.

The essence of humanity

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.

A Supreme Court of One

BY MARK MCQUAIN

Like Neil Skjoldal in yesterday’s blog entry, I, too, am a Supreme Court watcher and enjoy reading their decisions as some might enjoy watching a good sports match or listening to a beautiful symphony. Nerd that I am, I find a well-articulated argument a beautiful thing to behold, even when it runs counter to my bioethics, as it can be a learning experience to help me sharpen my counter argument. My counter argument becomes moot if five or more Justices concur with that original argument, as it is rare, though not impossible, for the Court to completely reverse itself.

Last week, the legal landscape suffered the equivalent of a San Andreas-like major tremor along its political fault-line with the announced retirement of Associate Supreme Court Justice Anthony Kennedy. Justice Kennedy has generally been considered the political center of the Court, the all-important tiebreaker, if you will, on controversial bioethical issues related to abortion, gay marriage and the death penalty. Presently, we give 9 Justices the authority to be the final interpreters of our laws, including those that determine our collective bioethics. Amazingly, we will accept a majority rule 5-4 split decision as being just as acceptable as a 9-0 unanimous decision when validating or invalidating our laws. Being the tiebreaker on previous controversial issues effectively made Justice Kennedy what I call “a Supreme Court of One”. And that is exactly how both political parties are treating the selection of Justice Kennedy’s replacement.

And they should.

In a past blog entry, I tried to make the case that it vitally matters who is interpreting our Constitution, as those individuals are grounding our secular bioethics. Allowing one tie-breaker to decide these important issues is too much power and responsibility in one individual but that has been the reality in our presently divided Court.

My favorite legal philosopher is the late Yale Law School professor Arthur Leff. He gave a lecture at the Duke University Law School in the late 1970s called “Unspeakable Ethics, Unnatural Law”. He made the case that if our source of right and wrong is anything other than a transcendental (unnatural) source, then the resulting ethics/law is always open to challenge. The U.S. Constitution is an example of a natural source of law, perhaps the best that mankind can create for itself, but, since it was created by us, it is therefore always open to challenge by us. Given its internal checks and balances, as long as “We the People” continue to agree to be governed by the Constitution (and this is by no means a permanent agreement), rulings by the Supreme Court essentially function as our collective approval of laws that determine our national bioethics.

I have shared the following quote from Leff’s lecture before but it again seems appropriate:

As long as the Constitution is accepted, or at least not overthrown, it successfully functions as a God would in a valid ethical system: its restrictions and accommodations govern. They could be other than they are, but they are what they are, and that is that. There will be, as with all divine pronouncements, a continuous controversy over what God says, but whatever the practical importance of the power to determine those questions, they are theoretically unthreatening. It is only when the Constitution ceases to be seen as fulfilling God’s normative role, ceases, that is, to be outside the normative system it totally constitutes, or when, as is impossible with a real God, it is seen to have “gaps,” that a crisis comes to exist. What “wins” when the Constitution will not say, or says two things at the same time?

Presently, the Supreme Court interprets those gaps and decides what wins and what loses in our national bioethics debates. Given our present evenly split Court, picking the next Supreme Court of One can literally make all the bioethical difference in the world.

The death and resurrection of Jesus and how we view death

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.

Reviewing the ethics of paying human research subjects

Sometimes it is both necessary and proper to pay a person to participate in a clinical trial, of a drug or some other medical intervention, or a data-collection study, or something else that involves people.  An article in this week’s New England Journal of Medicine reviews many of the relevant ethical issues.

A link to the article is here.  Correction to initial post:  subscription or purchase does appear required.

Why pay somebody to be in a trial?  The main reasons are to reimburse them for unavoidable expenses, to compensate them for time that would not otherwise be required in the course of standard medical care or normal life, and, indeed, to get them to participate in the first place.  In cancer medicine, where I’ve worked, the subjects are cancer patients who are generally not paid to participate; they usually are willing to do so in the hope of possible benefit, plus, often, a sense of altruism.  But most drugs have their first human testing in healthy volunteers, to begin to identify potential safety concerns and understand how, and how rapidly, the drug is eliminated from the body.  In those cases, the research subjects are almost always paid, sometimes substantially.

Such payments are not necessarily unethical, as long as they are not too big.  If they are, then they could create an undue influence to participate.  That would upset the balance of benefits and risks and compromise true informed consent.  By well-accepted ethical standards for research on human subjects—many of which are codified in regulation—the risks to human subjects must not be excessive, must be avoided or mitigated to the extent reasonably possible and commensurate with the goals of the research, and must not exceed the foreseeable benefits of the research, either to the individual subject or to society overall (e.g., in the form of important medical knowledge), or both.

Payment to a subject is not considered a benefit in and of itself, but should be “neutral” to the benefit/risk assessment.

There’s no hard and fast rule about paying subjects—no single standard “fee schedule,” so to speak.  Rather, each ethics board reviewing a study must also review and approve the amount and timing of payments to subjects.  Again, such payments should be high enough to respect the subject’s contribution to the research, but not too high so as to give them incentive to participate when maybe they should not.  Also, it’s a general principle that payment should be in installments; generally, no more than 10-15% of the total should be held back to the very end of the study.  Why this last point?  Because it’s also a principle that subjects can opt out of a study at any time, but if they think “I have to stay in to the bitter end to get paid,” that could pressure them too much.

Note, BTW, that such pressure is not the same as coercion, which by definition involves a threat, and does not apply to this payment question.

Also, payments must be appropriate so that subjects don’t get a wrong idea about the potential value or efficacy of an experimental drug, or that they might be induced to try to be in more than one study at once.  You might be surprised how significant that last risk is.  In my past IRB work, we just to worry about “professional subjects” who make some level of living by going from one research study to another.  More than one at once means getting two or more drugs at once that probably ought not to be combined, willy-nilly.

And of course, the potential for economic exploitation of low-income individuals must also be considered and respected.

The NEJM article really doesn’t break new ground but is a helpful review for those interested in essential research ethics.  The FDA has also provided guidance, which can be reviewed here.