The 2 posts on this blog this week by Neil Skjoldal and Mark McQuain raise issues related to parental decision-making for the medical treatment of their children. Neil raised this issue related to parental refusal of life-saving treatment for acute leukemia and Mark raised it related to parental decisions not to have their children immunized for measles. There are some similarities in these situations and some differences. An obvious similarity is that in both of these situations parents are making a decision to refuse treatment for their children that is the recommended standard of care. Both situations raise issues about who should make decisions about the medical care that children receive and how those decisions should be made.
One thing we should be clear about is that this is not a
conflict between the principle of respect for autonomy and the principle of
beneficence. Respect for autonomy says that a person should be able to make
decisions about what happens to his or her own body. It says that it shows
disrespect to an individual as a person to insist a person receive recommended
medical care when that person has the capability of making his or her own
decisions and does not consent to the recommended care. This principle does not
apply to decisions about the medical care of young children. Young children are
not capable of making decisions about their own care and the parents are not
the ones receiving medical treatment, so respect for autonomy does not apply to
What is involved is our understanding of parental
responsibility for making medical decisions for their children. Because young
children do not have the ability to make their own medical decisions, someone
needs to serve as a decision-maker for them. We generally understand that
parents ought to be the ones making those decisions. We have good reasons for
that. Decisions about the medical care of young children should be made based
on what is in the best interest of those children. God has created us as human
beings to be dependent during the early part of our lives. He has put us in
families with parents who have the responsibility for providing for the needs
of their dependent children. Parents should love their children unconditionally
as a precious gift and make decisions for their children based on what is best
for each child. This usually makes parents the people who care the most about
doing what is best for a child and makes them the best medical decision makers
for their child.
However, sometimes parents do not fulfill their parental responsibilities
as well as they should. None of us are perfect, but there are times when it is
clear that the decision being made by a parent is not what is best for a child.
When the potential consequences for the child are serious enough it can become
the responsibility of the rest of us to intervene for the benefit of the child.
We should not violate parental responsibility lightly, and it needs to be done
in a controlled and orderly way, but when the child’s life is in danger, we
have a responsibility as a society to intervene to protect a child. We should
do this in any type of severe neglect or abuse. We should do it when parents refuse medical treatment
for a child who is likely to die if without treatment and the treatment has a
good chance of saving the child’s life.
That appears to be the case in the situation in Neil’s post.
The concern about parents refusing immunizations for their children has some
similarities, but is more complex. It will take another post to address that.
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.
Recently a major pharmaceutical company settled a lawsuit with the state of Oklahoma for $270 million. The state had alleged that the company’s marketing of OxyContin had helped to fuel the opioid epidemic in the state. Pharmaceutical companies in general do some things that are very good and have many times had some questionable practices. Some of their pricing and marketing practices are morally questionable, but it seems to me that it is the role of the FDA to evaluate those marketing practices and discipline pharmaceutical companies when they market inappropriately.
It does not seem to me that states suing pharmaceutical
companies is an appropriate way to deal with the opioid crisis. The problem of
what we used to call narcotic addiction has been around for centuries. It has
been a problem long before any modern pharmaceutical companies existed. Whether
the narcotic being abused was opium, morphine, heroin, or prescription pain pills
the primary driver of narcotic addiction has always been hopelessness and
despair. This is true whether it involved the opium dens in China or the slums
of London, heroin addiction in the inner cities of the US or opioid abuse by the
rural poor of states like Oklahoma or Indiana (where I practice). Supply plays
a role in which narcotics are abused, but the underlying problem is a social
and spiritual one.
There are many factors that go into the hopelessness and
desire to escape that underlies narcotic addiction. One factor is economic.
People who are unable to find work to support themselves and have no hope of
being able to do so may turn to narcotics to escape. Those who are wounded by
broken families and have no hope of being able to find the wholesome family
relationships they desire frequently turn to alcohol and drug abuse. It would
make as much sense to sue those who have contributed to these economic and
social conditions as it would to sue pharmaceutical companies. Should states
sue manufacturers who have yielded to economic pressures and have left empty
factories scattered around our country while they profit from manufacturing
goods overseas? Should they sue musicians who glorified drug abuse in their
songs and modeled that in their behavior? Should they sue the entertainment
industry that has promoted sexual immorality and the breakdown of families?
Should they sue both state and federal legislators who have created a welfare
system that promotes dependence and generational poverty?
I do not think that this is the answer. There are many
things in our society that have helped to promote the increase in drug abuse
that we are dealing with today. It will take all of us working together
voluntarily to impact this crisis. Churches, businesses, physicians, hospitals,
pharmaceutical companies, and government at the local, state, and federal level
will all need to work together to help reduce the hopelessness and despair that
underlies the current opioid epidemic. Research and treatment like what will be
funded by the settlement of the Oklahoma lawsuit is needed, but working on the
underlying problem of hopelessness and despair is essential. Local churches
have the potential to impact that most effectively without needing to sue
By Steve Phillips
I have said this before (see post on 12/5/18), but since otherwise intelligent people continue to say that we should pursue human germline gene editing because it can be used as a means of eliminating the transmission of genetic diseases to future generations, I need to say it one more time. There is no reason to expect that editing the genes of human embryos will ever be a practical and effective way to eliminate the transmission of genetic diseases to future generations.
There are several reasons for this. One is that the
elimination of genetic diseases in future generations would require the
widespread screening of all potential parents to identify everyone who would
need to use this technique for it to actually eliminate a genetic disease.
There is no reason to think that that will ever be practically possible and if
it were possible it would require an extreme limitation on personal liberty
(think Brave New World). If genetic diseases cannot be eliminated using this technique,
then what those who take this position must be advocating using it as a means
for a particular couple to avoid passing on a genetic disease when they know
that they are carriers of that disease. There are additional reasons why gene
editing will not be practical and effective for that.
If the couple’s sole priority is to eliminate the
possibility of passing on the genetic disorder that they carry to a child, the
simplest and most effective way to accomplish that is to choose not to conceive
children. That means that their desire to have and raise children would need to
be fulfilled through adoption, but it is the most effective way of achieving
the goal of not passing on the genetic disorder that they carry. If this method
is not chosen, the couple must recognize that they are trying to accomplish two
goals, both having their own biological child and not transmitting the
For the large majority of couples trying to accomplish both
of those goals the method with the least risk and highest likelihood of success
would be creating a child through IVF and using preimplantation genetic
diagnosis (PGD) to choose an unaffected embryo to be implanted in born.
However, this method carries significant moral concerns related to the creation
and elimination of embryos who have the genetic disorder. Some might think that
this moral concern would be a reason to choose gene editing instead, but it is
not that simple. The development of the technique of human embryonic gene
editing will require using human embryos as research subjects who will be
destroyed as an essential step in the research to establish the effectiveness
of this technique. This means that it is not a morally superior technique for
those who are concerned about the value of the life of a human embryo.
If a couple would choose to pursue embryonic gene editing
for the purpose of having a biological child who did not suffer from a genetic
disorder that the couple carries, there are still other problems. If gene
editing is being used to transform an embryo with a genetic disorder to an
embryo without that genetic disorder, it would be necessary to be able to
determine that the embryo actually has the disorder before doing the gene
editing. Except for the case of two potential parents homozygous for a
recessive disorder, some diagnostic test would be needed. We can currently
diagnose many genetic disorders in a multi-cell embryo produced by IVF by using
PGD. However, for embryonic gene editing to be effective in completely removing
the genes for a genetic disorder and replacing them with normal genes the best
time to do the gene editing is at the single cell stage. Even if it is
established that gene editing can be done effectively and safely, it is hard to
see how we would be able to establish that a single cell human zygote has the
genetic disorder prior to treating that single cell.
For all of these reasons, the situations in which human
embryonic gene editing would possibly be the preferred means of creating a
child without a genetic disorder would be quite rare. It is much more likely
that the technique would be used for enhancement.
By Steve Phillips
There has been considerable reaction to the recent passage
of a New York State law a regarding abortion. It has been celebrated by those
who support a woman’s choice to have an abortion at any time and for any reason
and strongly opposed by those who believe that a human fetus has a life that
should be greatly valued because he or she has been created in the image of
God. The new law basically changes two things in the previous New York State
abortion law which led the way in the legalization of abortion prior to Roe v.
Wade. One is that it expanded those who can legally perform and abortion in the
state to include nurse practitioners, physician assistants, and midwives in
addition to physicians. I will not be discussing that here. The other changes
have to do with the circumstances under which an abortion may legally be done
after 24 weeks gestation.
The 1970 law stated that an abortion could be done legally
for any reason prior to 24 weeks, but only to protect the life of the mother
after 24 weeks. Why 24 weeks? 24 weeks gestation was considered to be the limit
of viability for a fetus in 1970. Today it would probably be more like 22
weeks, but they didn’t change that. What has changed in the new law is that
abortion is considered legal after 24 weeks if there is an absence of fetal
viability after 24 weeks or to protect the life or health of the mother. This significantly
expands the cases in which abortion after 24 weeks can be considered legal. Roe
v. Wade already expanded it in the second way. In that decision the Supreme
Court ruled that the state could have an interest in the life of the fetus
later in the pregnancy that it did not have early in the pregnancy but limited
that interest by saying that a state could not say that an abortion was legal
if it was done to protect the life or health of the mother. A companion
decision made at the same time stated that the health of the mother should be
interpreted very broadly to include the emotional well-being of the mother.
That left us with the current situation in which the United States has the
broadest definition of a legal abortion in the world.
The thing that I find most interesting about the new law is
that it keeps the distinction between abortions done before and after 24 weeks
and that it adds the condition that an abortion after 24 weeks can be legal in
the absence of fetal viability. If the law is going to say that an abortion can
be legal at any time during the pregnancy based on the mother suffering
emotional distress, why would those making the law be concerned about fetal
viability? I think that what is being said by those who have written and passed
this law is that until a fetus is capable of living independently of his or her
mother the life of that fetus has absolutely no value other than the value
conferred by his or her mother. They want that to be contained in the law even
if it actually makes no practical difference regarding the legality of
abortion. Why is that so important?
I think it is important because the fundamental underlying
issue regarding the permissibility of abortion has to do with how we determine
who is a person who we are obligated to treat as we would want to be treated
ourselves. It is essential for those who support the moral permissibility of
abortion and therefore its legality to say that a fetus is not such a person.
The best way to do that is to say that an individual is only a person with full
moral status when that individual has certain capabilities that are like ours.
One of those capabilities which can be fairly clearly defined is viability. If
people can be convinced that they should look at capabilities such as viability
to determine who we are obligated to treat like ourselves it will distract them
from the alternative way of determining that. The alternative is to say that
every human being, or every member of the human family, no matter what their
level of development or capabilities is a person that we should treat as we
would want to be treated ourselves. That means that every human being who is
weak, helpless, and marginalized has equal value with the strongest and most
privileged of human beings. That is the position of those of us who believe
that every human being is important because we have been made in the image of
God. That includes everyone who is dependent including those who are dependent
to the point of being unable to survive outside their mother’s womb.
By Steve Phillips
Every year at this time I try to spend some time reflecting on the meaning of Christmas and for this blog I try to reflect on how the meaning of Christmas interacts with bioethics. This year the Christmas musical program presented by the choir that I sing in at our church was focused on the themes of hope, love, joy, and peace represented by the outer candles of the Advent wreath that we light each of the four Sundays of Advent. As I have been thinking about the meaning of Christmas I have been focusing on the hope of Christmas.
One of the reasons that I have been thinking about hope is that I see so much hopelessness in the small rural community where I live and practice. Many of the patients that I care for feel hopeless. It can be seen in how the community is impacted by substance abuse and suicide as I wrote about last year. Many would relate the hopelessness to the poor economic climate of the community, and that does have a significant impact on people’s lives. But being poor does not necessarily entail hopelessness. There are many examples of those who are economically poor but rich in hope and joy. Hopelessness comes from a poverty of the soul that is more than just economic. It comes from a lack of positive relationships and positive social interaction. It comes from a lack of anyone or anything in which people can put their trust. Hopelessness comes from seeing that this world is far from what it ought to be and having no reason to think that will ever change.
The message of Christmas is that, even though we live in a broken world that is not what it ought to be, there is a remedy for the brokenness of this world. The way by which our brokenness can be healed came to earth as a baby born in Bethlehem. Jesus became one of us to be God’s clearest revelation of himself to us. His death provided the answer to our brokenness. His resurrection provided assurance of the hope that we can have in him. That is the hope of Christmas. Jesus is the answer to our own hopelessness, the hopelessness of those in our communities, and the hopelessness of the world.
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.
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.
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.
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.