Recently, I learned that Sweden is struggling with an important question: who should be trained as a physician? One particular student focuses this discussion. Karl Helge Hampus Svensson was banished a year ago from Sweden’s premier Karolinska Institute on the grounds that he had falsified high school records. Lying is not a noble activity for anyone, especially would-be physicians. Correction was necessary. Mr. Svensson was relieved of his medical student status. It was probably not the lying that caught the attention of the school officials, however. Mr. Svensson, a Nazi sympathizer, was also a murderer, who had served the time required in Sweden for such a crime. So what is Sweden’s difficulty now? It has come to light that Mr. Svensson is, once again, a medical student - this time at Uppsala, another Swedish institution of higher learning. (Lawrence K. Altman, M.D., “A Quandary in Sweden: Criminals in Med School”) How did this happen? Apparently an assumed name helped provide the cover for a while. How should this school respond? If a citizen has been convicted of murder, should that person, after “repaying the societal debt”, be entrusted with the lives of others? In a country where background checks by medical schools are not allowed, what is to be done? So far, only questions; answers are not yet forthcoming.
The United States is dealing with questions regarding medical practice as well - but not about medical students and crime. The question in the U.S. is about which physicians will be allowed the freedom to practice according to their consciences. Since the combination of Roe v. Wade and Doe v. Bolton made abortion a “right” during any stage of development of the embryo (up to eight weeks after conception) or fetus (eight weeks after conception until birth) in the United States, physicians who objected on moral grounds were not required to participate in such procedures. “Right of conscience” of health care workers was recognized and respected, although no regulations existed to provide for that right of conscience. Shortly before President Bush left office, after a period of public comment, regulations regarding right of conscience of health care workers were published in the Federal Register. The Obama administration has signaled its probable withdrawal of conscience regulations, and gave the American people until 9 April to comment on that. If healthcare workers lose the right of conscience, they will lose a precious freedom. Only physicians who are willing to perform or refer for abortions may be allowed to practice obstetrics. Some recommendations have been made which state that if physicians who are not willing to perform abortions do not practice in close proximity to those who do (perform abortions), the former need to relocate. Patients in rural areas may pay the highest price in this equation. If obstetricians must practice in proximity to abortionists, and no abortionist is near, the only care the rural patients have may need to relocate?! Truth is truly stranger than fiction.
The questions the U.S. and Sweden are each asking meld together as I think about them. They came into stark focus when I watched a video that someone I do not know called to my attention. It is a video called Everyone Against Abortion, Please Raise Your Hand! It begins sweetly and deteriorates from there. This video has seared my mind. Sweden mulls the prospect of entrusting vulnerable patients to a convicted murderer. The United States is considering having only abortionists (or persons who will refer to abortionists) practice obstetrics. Is this not two sides of the same coin? Both countries are asking, “Who is fit to practice medicine?” If I am a patient in an examination gown awaiting the physician’s arrival, am I comfortable in either Sweden or the U.S. at this point?
In 1954, Joseph Fletcher, father of “Situational Ethics” wrote, “[W]e shall attempt, as reasonably as may be, to plead the ethical case for our human rights (certain conditions being satisfied) to use contraceptives, to seek insemination anonymously from a donor, to be sterilized, and to receive a merciful death from a medically competent euthanasiast.” Morals and Medicine, (Boston: Beacon Press, 1954), p. 25
Today, 9 April 2009, is the final day for the public to make comments regarding the right of conscience protections for health care workers put in place by the federal government late last year. There is a planned recission, or cancellation, of those regulations defending right of conscience for health care workers. The public has had thirty days to comment on the planned recission, and that comment period ends tonight.
Comments are invited thru today to be posted at “Regulations.gov Your voice in federal decision making”. What kind of comments is the government interested in receiving? Four kinds are paraphrased here:
Information, including examples, whereby there is need for federal rulemaking, and
“how the current rule would resolve those problems”
Information, including examples, supporting/refuting allegations that “access to
information and health care services, particularly by low-income women” is reduced
by the conscience protection regulations
Comment on clarity of the rule: will it “minimize the potential for harm resulting
from any ambiguity and confusion that may exist because of the rule”?
Comment on whether the conscience protection regulations’ objectives could be
“accomplished through non-regulatory means, such as outreach and education”
Let’s think for a few minutes. Here are a few conclusions we might reach, based on the requests for comments:
The current administration apparently doesn’t believe any of the previous comments
regarding pressure to go against deeply held convictions, or discrimination and/or
harassment experienced by health care professionals who object to procedures like
abortion or physician-assisted suicide.
The regulations went partially into effect on 20 January 2009, with the remainder to
be put into effect over succeeding months. This information will be limited at best.
Is the administration serious with this convoluted question? It would be far more
helpful to comment on the clarity of this question, which is minimal, even by
Would the administration have asked Dr. Martin Luther King, Jr. whether civil rights
could be accomplished through “non-regulatory means, such as outreach and
education”? Dr. King’s response to such a question would make interesting reading
After today, we will likely be much closer to Joseph Fletcher’s so-called human rights to use contraceptives, have insemination by donors, be sterilized, and receive death at the hands of physicians. These physicians will have fewer civil rights, and perhaps, one day, be devoid of conscience. As physicians and other health care professionals with conscience are increasingly marginalized and leave the professions, there will be stark changes in the landscape of health care. These changes would make Joseph Fletcher smile, and Martin Luther King, Jr. weep. And they would show the truth of William Shakespeare’s words: “The evil that men do lives after them; the good is oft interred with their bones.”
Abraham Lincoln is reputed to have asked on more than one occasion, “How many legs does a sheep have if you call its tail a leg?” When the respondent replied, “Five,” Honest Abe had a ready correction, something along the line of, “No, calling a tail a leg does not make it so.”
Abraham Lincoln has had many admirers throughout the years, including President Obama. Now it appears that the nation’s interest in our 16th President has been rekindled. Perhaps we can all learn something anew from this hero: straight talk. Yesterday, the Associated Press reported that President Obama has declared human cloning to be “‘dangerous, profoundly wrong’” and has no place in society.” Further, the report stated that Mr. Obama “would ensure that the government never opens the door to the use of cloning for human reproduction.”
I would like to agree with President Obama in calling cloning “dangerous” and “profoundly wrong,” but I don’t think I can for a very basic reason. When one agrees with another, both need to mean the same thing. That is, the words used need to mean the same thing. When President Obama uses the term “cloning” he uses it in an artificially limited way. He apparently uses the term, “cloning” only to indicate the birth of human clones (or at least, the implantation in a uterus of a cloned embryo). This particular example of obfuscation has been around for a while, but that doesn’t mean it should continue to be used. Reproducing embryos asexually for either research or for implantation is cloning. The technology employed is the same; it is simply the dispositions of the embryos that are different. To call one cloning, and the other “not cloning” is either misunderstanding or misrepresenting the science involved. Either is not good where our nation’s policies are concerned.
Here is a test. A scientist uses somatic cell nuclear transfer to produce (asexually) embryos in the lab: four are used for research, and one is implanted in a woman’s uterus. How many embryos have been cloned? President Lincoln, in my estimation, would say “five”.
Plans for a registry of egg and sperm donors in Australia has Dr. Joel Bernstein, a fertility specialist in Sydney, worried: “It could turn responsible reproduction into irresponsible reproduction,” he has said. (“Register ‘threatens’ fertility programs”) Dr. Bernstein is concerned about the possibility of “irresponsible reproduction”. Let’s consider what irresponsible reproduction might be. Does irresponsible reproduction include
1) one parent not knowing the name of the baby’s other parent?
2) lying to a child about his/her parentage?
3) not allowing your child to know his/her other parent?
4) not allowing your child to know what his/her genetic history includes?
5) not knowing how many siblings your child actually has?
6) not allowing your child to know how many siblings he/she has?
Interestingly, any or all of the above can apply to both one-night stands and assisted reproduction with donor gametes for which there is no donor registry.
Because donors through infertility services are usually screened medically, the risk of contracting a communicable disease should be significantly less than going the “pub” route Dr. Bernstein is concerned about. Therefore, it seems reasonable to conclude that, to Dr. Bernstein, irresponsible reproduction really just includes
7) the possibility of getting a communicable disease from your child’s other parent
8) not having your child’s other parent screened by assisted reproductive technology staff
For a variety of reasons, I do not advocate the “pub” route; on this, Dr. Bernstein and I agree. Yet neither do I advocate lack of responsibility for our actions. To willingly reproduce children without plan to be involved in their lives is to turn the process into an assembly line, and children into products. And it isn’t all that long “A.F.” (“After Ford”, from Aldous Huxley’s Brave New World).
Ever since the Health Insurance Portability and Accountability Act (HIPAA) of 1996 was passed, we have become accustomed to far more forms and red tape than ever before in hospitals and physicians’ offices. With the institution of the Privacy Rule, our Protected Health Information is strictly guarded in new ways by healthcare professionals and hospital systems — with good intentions. This law was designed to protect a patient’s privacy in ways no hospital gown ever could. For similar reasons, but hopefully with less resultant red tape, Congress passed the Genetic Information Nondiscrimination Act (GINA) earlier this year. Neither an individual’s medical history nor his/her genetic information is to be publicly revealed.
What, then, are we to make of the “Personal Genome Project”? This project is seeking 100,000 individuals who will agree to have their personal genomes made publicly available via the Internet. Their website states,
We believe individuals from the general public have a vital role to play in making
personal genomes useful. We are recruiting volunteers who are willing to share their
genome sequence and many types of personal information with the research
community and the general public, so that together we will be better able to advance
our understanding of genetic and environmental contributions to human traits and to
improve our ability to diagnose, treat, and prevent illness.
To date, the Personal Genome Project has enrolled ten luminaries, including Misha Angrist, Keith Batchelder, George Church, Esther Dyson, Rosalynn Gill, John Halamka, Stan Lapidus, Kirk Maxey, Steven Pinker, and James Sherley. Portions of their genomes are to be revealed this week on the PGP website. Information once revealed, even if subsequently taken down from a public website, remains known by someone, somewhere. If one of these ten has a gene associated with the development of Alzheimer’s Disease, how will that person or those who know him or her react? If such information were subsequently taken down from a public website, would the knowledge disappear? Not likely.
How we treat information, particularly genetic information, is a very important issue. It is becoming increasingly vital to develop appropriate safeguards and procedures for managing such specific and identifiable data. From the New York Times this week:
Over the last three years, more than a half-million people who participated in over 100
publicly financed genetic studies on traits like schizophrenia and drug addiction were
promised that their anonymity would be protected. But last month, after a paper in a
scientific journal described how an individual’s profile could be identified even when it
was aggregated with hundreds of others, the National Institutes of Health abruptly
restricted access to the data. ( “Taking a Peek at the Experts’ Genetic Secrets” by
Where are the limits for privacy with respect to our DNA? Where are we going? What is happening in the arena of storing and/or disclosing our genetic data? Do we have a blueprint for our biobanks? We need more than a hospital gown to protect our privacy.
Peter A. Lawler, Ph.D., is Dana Professor and Chair of the Department of Government and International Studies at Berry College, in Georgia, and a member of the President’s Council on Bioethics.
D. Joy Riley, M.D., M.A., is Executive Director of The Tennessee Center for Bioethics & Culture.
Riley: The subject is organ transplantation, and we have looked at the situation in the United States. Now let’s go beyond the borders of the US. There is certainly a market in a number of countries, one of which is India. There, often a donor (for lack of a better word) is offered a certain price, but often ends up with much less, for sacrificing a kidney. There are neighborhoods where most of the people living there have sold a kidney to subsist.
Then there are have been reports out of China about the Falun Gong, who, for some reason, have incited the ire of the Chinese government, and have been incarcerated. There were reports in recent years regarding potentially their use of the Falun Gong members as organ donors for medical tourists. Do you have any comment about that? Do you think these reports are real?
Lawler: Well, I think the reports are real. When the official kidney authority in America, Dr. Francis Delmonico, says they say they can stop the stuff, I don’t believe it. The down-side of globalization is the world is becoming increasingly porous; there is obviously this incentive to develop these slimy, quasi-legal markets. I think the Chinese thing may be an exception. They may have stopped. But that’s not going to be the most of it in effect. The evidence you’re talking about helps out those who want the regulated market in our country. As with abortion, people say if you try to outlaw it, it will just become more unsafe. In the same way, the attempt to outlaw kidney markets here will just cause kidney tourism, which has all sorts of horrible consequences. There are horrible consequences for the donor who is exploited, for the person who comes from this country and doesn’t get proper medical care, or who comes back here and has trouble continuing required medical care. Wouldn’t it just be better to have it all happening here, where it could be all regulated and the vendor/donor get a better deal?
I just gave you my long-term argument as to why I don’t even believe that. But when I debated this very nice woman who actually had a kidney transplant, Sally Satel, about this, she just said, “Don’t think long-term; just worry about now.”
Riley: Yes, she had an article in the New York Times
about her kidney transplant. She said she had considered going abroad to be a transplant tourist, but had rejected that ultimately. I wrote a response to that article, which was published in the New York Times along with a number of other responses. I quoted from Robert M. Veatch’s Transplantation Ethics, and I would like to move to that work now. He would redefine death to include people in persistent vegetative state and children born with anencephaly. He would include those as deaths so their organs could be transplantable. Do you have any comment on that?
Lawler: In the first place, I’m very unimpressed with Veatch’s work. He has actually switched his position on kidney markets. He has a very moralistic tone: “well, as long as we allow poor people to continue to exist in America, we may as well give them a chance at life and allow them to sell their kidneys.” That is absolutely repulsive on so many levels. This death thing is even worse, because there are many things in life you can put in quotation marks, like for postmodern people, “truth” or “man” or “woman”. But you don’t want to put “death” in quotation marks; you want to be pretty definite about death. You want to be able to say, “He’s dead.” The changing of the definition of death for human convenience is finally another argument for markets, because if you think about it, markets would be better than that. At least, you are exploiting people who are alive and know what they are doing. You don’t want to start having looser standards on death.
You know, a lot of people won’t check “kidney donor” on their card because they think, “They’ll kill me to get my kidneys.” Right now, there is little to no evidence for that. But, if he were right – if the definition become arbitrary and changeable — there would be potential.
The embryo issue is really tough but the people who say we can’t kill embryos have this point. Any place you draw the line after the beginning is utterly arbitrary. You could go up to a baby, to a year-and-a-half. To find a solid scientific reason, it’s really tough.
We have a council report that is going in the other direction, concerning brain death. We’ve learned from people on artificial respirators that the body can operate pretty well without the brain. But the definition of death as brain death is required to harvest organs. The best source of organs is where the heart is artificially kept moving so the organs remain as healthy as good organs can remain, but the brain is dead. Now, however, there’s real doubt that brain death is actually death. The trouble with a standard more severe than brain death is that it would close down the cadaver organ market altogether. There is actually a crisis among Vatican scientists on this, among people who are serious about death. Some are going in the other direction from Veatch, saying that “we’re not 100% sure that what you call brain death is death, because it does seem that the human body can function for a while without the brain.” So Veatch recommending a standard more lax than brain death seems monstrous.
Riley: I appreciate your view there. I also wanted to ask you about a proposed law – I believe most recently in South Carolina — whereby they would allow prisoners to donate organs. Where are you on that issue? Do you think prisoners can sign over an organ? Is that truly informed consent? Is there no hint of coercion there?
Lawler: Well, you know, it would be okay if they got nothing for it. I really don’t believe that in the American penal system a prisoner would be coerced into giving up their organ. So if a prisoner, in a completely uncompensated way, had this burst of generosity and wanted to help someone out – you can imagine if a prisoner finds out that his sister is dying of kidney failure — why can’t that prisoner donate the organ?
But if there’s compensation — like “we’ll reduce your sentence”—that would be yet another argument for the market, because a market would be better than that. Prisoners are in desperate and horrible situations. It could be that a prisoner, being tortured by other prisoners or having unspeakable things happening to him, sees the only way out is to give up an organ. You surely wouldn’t want that.
Here in Nashville is the executive director of a group called LifeSharers. LifeSharers is a non-profit organization that seeks to increase the number of organs that are available. People sign up with no fee (except for one-dollar for mailing), and the signee has a probationary period of 180 days, I believe. The agreement is basically that they agree that on their death, their organs will be donated, and go to someone on the LifeSharers’ list. This is outside UNOS. I don’t know if you have heard of LifeSharers or not, but they seem to be encroaching on UNOS, a bit. Do you have a reaction to that?
Lawler: My reaction would be, what happens to their standing on UNOS—are they kicked off their list?
Riley: Not to my knowledge. I understand that you can be on simultaneous lists.
Lawler: Yes, I’m not really against it.
UNOS does some outstanding work, but I have two criticisms. They are very tyrannical; they won’t let anyone get around them, and they really don’t have an argument for their position. They don’t argue seriously against the market. They base their position too uncritically on the authority of the status quo.
So, obviously, if other people, dissatisfied with their work, wanted to do things short of a payment—I don’t know why I should be against it. I’m saying this tentatively, not knowing enough about it.
Riley: I totally understand. I have met with the executive director of LifeSharers, and I’ve watched them for a couple of years, and I don’t have any objection to what they are doing. It seems to be a reasonable alternative. Their point is that people who are willing to give up their organs should be the first on the list for transplantation, were they to need that. And so, currently I think they are still in the list procurement phase, and there have not been that many transplants as far as I know.
Lawler: I would be very much in favor of a modest national education program about there being no reasonable, no Christian argument, against organ donation, after you’re dead. There are some superstitions about that.
The opinion of the family should finally prevail, but I really do think the donation of organs should be encouraged. In fact, getting on this list is only helpful if you die in the right way, and that isn’t all that likely.
Riley: True. I have one more question for you: what do you think about the possibility of presumed consent? Not so much the term itself, but do you think presumed consent is a viable way to go?
Lawler: I would stop just short of that because it is a free country. Our limited government respects the decisions of families. I would be in favor of an educational policy that encouraged people to consent. I wouldn’t be in favor of simply presuming the family would be okay with it, but I would be in favor of aggressively finding a family member to pursue consent. If presumed consent would make a lot of difference in the organs you would get, I would have to rethink it. But in fact, it wouldn’t. It would not address the crisis in any significant way. And it would be a step we’ve never taken before, in our free country. There are European countries where presumed consent is the law, but they are more statist than we are.
If someone were to show me that we could get 30,000-40,000 more kidneys a year through presumed consent, I would have to start scratching my head about it, truth to tell.
Riley: Thank you for your time. Do you have any final comments?
Lawler: I was glad to be able to talk about this topic. This is something I really didn’t know anything about two years ago. I hope it reassures you that people on the President’s Council of Bioethics, although many of them are ordinary citizens and amateurs, do knock themselves out trying to become informed on these issues.
Riley: I appreciate your service on the President’s Council of Bioethics, and thank you for your time here today.
D. Joy Riley: Today’s subject is organ transplantation. There are tens of thousands of people on the list in the United States, needing organ transplantation. This is an area of interest for you, I understand.
Peter A. Lawler: This is a tough issue. There are two ways of dealing with this: dialysis or transplantation. Dialysis is a horrible way to live, but is covered by Medicare. Congress thought when they passed this entitlement that many people would get back to work, but that is not what happened. People on dialysis expend most of their energy doing and recovering from dialysis. On the other hand, transplantation has improved greatly over the last thirty years, yet there is this deficit of kidneys.
The waiting list for transplantable kidneys has about 97,000; in a good year, we might get 13,000 kidneys—cadaver kidneys. There is also a number of live kidney donations per year, and these work much better. A kidney from a cadaver lasts about 10-13 years. A live-donor kidney with a close match lasts much longer.
Riley: Dr. Lawler is on the President’s Council on Bioethics. Has the council dealt much with this issue of transplantation? Is that on your docket?
Lawler: We have dealt extensively with it. I have gone from absolute ignorance on this subject to being somewhat of an expert, and I have written an article in The New Atlantis on the cases for and against kidney markets that was vetted by leading kidney experts. I have spent hours and hours with kidney doctors trying to figure out what is going on here. So we have a report coming out. It is very objective, going over all the alternatives and recommending against the market, but we are still working on the details.
Riley: If live-donor kidneys last so much longer than cadaver kidneys, it would seem reasonable that those are the ones we would want. The need for kidneys is staggering: how should we think about this?
Lawler: From the view of a market: the government is paying six figures to keep these people alive on dialysis. Lots of lives could be saved if more live kidneys were available. Government could actually pay a good price for these kidneys. An absolutely free market would be a monstrosity, but the market could be regulated with the government as the purchaser. The government could reasonably pay $50,000 - $75,000 per kidney. That is a brutal way to look at it, but even paying for the anti-rejection drugs, which they should in this case, would mean that they would be paying less than they would for the total bill of dialysis. It’s hard to know why we shouldn’t do this.
Riley: What are some of the concerns?
Lawler: There’s all kind of practical health and safety objections, like, how do we prevent exploitation; how to prevent a redistribution from the young and the poor to the rich and the old. But, in principle, those problems could be dealt with, perhaps. So, we need a better reason than health and safety and exploitation for not doing this. The question is, can our country come up with a better reason for not turning kidneys into commodities to be bought and sold, given how libertarian our country has become.
Let me give you one example. One, I think, powerful argument against kidney markets is this: you are turning healthy people into patients, for reasons that don’t benefit them at all. The healthy person is being used as an instrument to help someone else out. The Hippocratic Oath says to never do harm. But you are doing harm here. So that would be a good argument against it. But in our libertarian time, we are doing that all the time, in using cosmetic surgery to turn healthy people into patients in order to make them more marketable commodities, to make them look younger and prettier. Hollywood stars and salesmen think they need to do this just to remain competitive. We already allow cosmetic surgery just to help healthy people enhance their marketability – that’s already clearly against the Hippocratic Oath. We’ve already broken that barrier. If I can get surgery that doesn’t benefit me medically, but just makes me look better to get more money, then why can’t I sell my kidney to get more money?
We now have this principle that you can do whatever you want with your body. We say the right to have an abortion is more or less unrestricted because she can do whatever she wants with her body. If an abortion is perfectly legal, why wouldn’t kidney sales be perfectly legal?
People who argue against abortion think that the fetus is a human being. No one thinks kidneys are human beings. No one dies except in the very rare instance when the surgery doesn’t work out. No one dies, and someone gets to live. In this case, it looks like the pro-choice position is also pro-life. I’m far from actually endorsing this, except to say that the argument here is weirdly compelling.
I think that in a certain way, the kidney market is still a bit taboo now. But I have a rough analogy. The country’s thinking of a kidney market is like the country’s thinking about gay marriage as a right ten years ago. Most people were thinking that it wouldn’t really happen. It’s now clear it’s going to happen, because the dominant view is becoming that marriage is nothing but a rights-based contract between two free individuals.
The kidney market is probably going to happen. So we have this problem of alienating people from their own bodies, commodifying their own bodies. It’s really an assault against one’s own personal dignity, but the assault has this powerful humanitarian motivation.
Riley: So I hear you saying that you would argue against payment for kidney donation. How about things like paired kidney donation? An example is two couples from the UK, where one spouse of each couple needed a kidney, and in each case, the other spouse was willing to donate a kidney. Unfortunately, the spouses didn’t match one another. It was found, however, that the well spouse of Couple A matched the ill spouse of Couple B, and vice versa. So the four of them entered a hospital, where the kidney swap was completed.
Lawler: I actually have no problem with that. We really have an obligation to do everything short of paying for kidneys to increase the number of kidneys available. If we don’t do that, we leave the situation open for the market. Kidney tourism is going to become much more of a problem.
I visited a fine woman in a retirement community, full of people with great accomplishments. There was an old man there who was fairly healthy except he had kidney failure, and it was unclear why. He was surfing the net across the world, looking for somewhere to go to get a kidney. This man was objectively wrong: some pathetic guy in some impoverished country was going to get a really raw deal here. He was suppressing the moral qualms he should have had. But it’s easy to see why he was all about saving his own life in an intelligent, “proactive” way.
People will say, “Why not do this whole thing in a safe and legal way in our country, protecting ‘the vendor’ from this kind of exploitation?” So, if we don’t do everything we can short of exchanging money, we leave the road open to exchanging money. But the real practical dilemma is doing everything we can short of the market won’t really reduce the waiting list of people waiting for kidneys much at all.
Riley: Is there any means of preventing further increases in kidney failure, so that this list of people awaiting transplant can start decreasing in number?
Lawler: A number of people think that if we had better preventive medicine, we wouldn’t have the waiting list at all. This is not true.
I am for preventive medicine. Individuals can save themselves through diet, exercise and so forth from the ravages of diabetes and the main cause of kidney failure is diabetes. Actually, millions of Americans have failing kidneys, but most of them never come to know it, because they have a heart attack, cancer, or something else gets them. Now, men and women are taking better care of themselves often: taking their blood pressure medicine, their statins for high cholesterol, etc. We’re staying alive longer, and will die from chronic debilitating illness. The two most common are Alzheimer’s Disease and kidney failure. So in a way preventive medicine is going to cause more kidney failure, because more people are going to be staying around long enough to have their kidneys fail.
Riley: Surely there are ramifications for those who would donate a kidney to someone. What are some of the considerations? Would that in some way be entering a market?
Lawler: I have been thinking about this . . . The Catholic Church endorses without reservation kidney donation. It is based on this principle: a donation is not an invasion of your bodily integrity if you surrender an organ that is redundant. Almost the only organ you have that is redundant is your “extra” kidney.
You are only slightly, slightly, slightly worse off if you have only one kidney. It could be that men are more susceptible to high blood pressure if they have only one kidney, but the jury is still out. Given that, the Catholics are okay with donation, but they stop short of the market. But if we were to enter into a market, we would have to be careful that no other organ, including the liver, would be included. The danger with liver donation is much greater. Part of your liver is not really redundant: you are better off with a whole liver. So a lot of prudent people are starting to think, is there any way we can have a carefully regulated kidney market without creating a devastating precedent? This is a dilemma specific to a certain stage in science.
Eventually, science will come up with something better than transplanting kidneys. Some of the scientists say that xenotransplantation (basically using pig kidneys) might end up working. Maybe they will develop an artificial kidney. Maybe they will come up with a cure for chronic kidney disease. But for now, there is nothing.
Riley: So must we seriously consider a market for kidneys?
Lawler: My own opinion for now is that the precedent that we would set would be so devastating that there would be no going back on it. We would want to put the kidney thing in a box, and not have it affect other areas. I think that wouldn’t work out. What makes this seem fairly benign is the Medicare entitlement, that people would get lots of money for their kidney. Libertarians who are for the kidney market also know that Medicare has no future. So what happens when demographic pressures cause Medicare to collapse? We all know that will happen.
Then we will have something much closer to a free market in kidneys. The price will plummet. The kidney market will globalize. Then you will start to have the ugly transfer from healthy young people to sick, rich, and old people. That wouldn’t happen now because of the Medicare entitlement, but that will happen eventually.
Recently a baby with two faces – two pairs of eyes; two pairs of lips, two noses and one pair of ears – was born in India. Were they devastated? No. Indeed, the female infant, Lali, is seen as being a reincarnated god or goddess (variations due to differing news sources).
The child’s 19-year-old mother, says that she has “accepted the way she is and so will the rest of the world. Why should [I regret], after all God formed her features and it is he who decided how she should be.” The family, who are poor and largely illiterate, do not believe modern science can help their child and are already building a small temple to the girl in the village.
So here is a newborn with a markedly abnormal appearance (Craniofacial Duplication) received as a gift by a poor and apparently illiterate family. The hand that rocks the cradle of this baby is pleased to do so.
This stands in marked contrast to typical American norms. Only a short while ago at a conference within the confines of our shores, I heard one health care provider’s response to a discussion of Huntington’s Disease. This disease is an autosomal dominant one, in which only one copy of the gene is needed to produce disease. Huntington’s Disease typically appears in mid-life, and is characterized by a progressive neurological deterioration till death. When this particular individual realized that a blood test could diagnose the presence of the gene, he was very pleased. If preimplantation genetic diagnosis (available for embryos formed through in vitro fertilization) is used, those embryos could not be implanted. If the test were done as a prenatal screen, then those fetuses could be aborted. For those people already born, they could simply be prevented from reproducing. Within a short while, “we could eliminate this entire population!” the man exulted.
How do we process this well? Is life a gift to be received? Or is this concept relegated peculiarly to the “poor and largely illiterate populace”? Is it only the “normal” life that is to be received with thanksgiving? Then, of course, the question becomes, “Who defines ‘normal’?” Is normal equal to “without disease or abnormality”? If so, when? Is normal to be born without disease, or to be born with no disease or disorder present at birth, AND no genes for known disorders that will develop later in life, like breast cancer, familial polyposis of the colon, or Huntington’s Disease?
When the majority of the human genome was published in February 2001, the director of the National Human Genome Research Institute, Francis Collins, compared the genome to a multi-purpose book: “It’s a history book - a narrative of the journey of our species through time. It’s a shop manual, with an incredibly detailed blueprint for building every human cell. And it’s a transformative textbook of medicine, with insights that will give health care providers immense new powers to treat, prevent and cure disease.”
Francis Collins was correct: knowledge of the human genome — through use of genetic testing — does indeed “give health care providers immense new powers to treat, prevent and cure disease.” Yet in our quest to alleviate suffering, how far do we go? Does eliminating suffering include eliminating the sufferer, or an entire population of sufferers? I am particularly concerned that the line between normality and suffering will in actuality be an ever-decreasing diameter of a circle, which will define who is “in,” and irrevocably, who is “out.” If we do not proceed wisely, it will be no longer the hand that rocks the cradle, but the hand of the one who interprets the genetic test, that rules the world.
OP-ED: Reprogramming human stem cells could replace using embryonic cells
Recent stem cell research advances, heralded as great news by a number of people, have not included the terms “clones” or “embryos.”
The primary goal for stem cell research, aside from Nobel prizes, patents and off-the-scale profits, has been therapeutic advances to treat the infirmities of an aging and/or infirm population. . . . (The Tennessean)
With three swabs from as many cheeks, he places his check alongside, and pays the postal clerk the required amount to transport the small packets from California to Sorenson Genomics. According to their slogan, that’s what one does “For questions only DNA can answer”; that, and wait a few days. Paternity tests are now available to the public through Rite Aid drugstores on the West coast. (New York Times) It is the latest in changing from the age-old question, “Is it I?” to the refrain, “It ain’t me, babe . . . it ain’t me you’re lookin’ for” (“It Ain’t Me, Babe,” Bob Dylan, 1964).
One caveat: if it were 100% accurate, 100% of the time, it wouldn’t be called a test. It would be called the truth, and that is something we’re all lookin’ for.
What do Chuck Colson, Brandon Keim, and Carl Zimmer have in common? They each had much to say on 13 November 2007 about humans and animals, although with very divergent opinions. Some might call this “being unequally yoked.” Colson, in his BreakPoint commentary, decried the overarching goals of animal rights activism. He spoke of increasing rights of animals, beginning with pregnant sows in Florida. “Now, treating animals humanely is a moral imperative, especially for Christians; treating them as if they somehow were equivalent to humans is not. And,
increasingly, that is what we are doing. (“Of Pigs and People: Speciesism and Rights for Animals”).
Brandon Keim, writing in the Wired blog, “If Cloning Humans is Wrong, So Is Cloning Monkeys,” dealt with the published report of primate cloning by geneticist Shoukhrat Mitalipov. He stated,
Primate research is ethically difficult: some say that certain primate species are intelligent and empathetic enough to be considered people.
Rhesus macaques fall far down the spectrum from chimpanzees, but they’re indeed on the spectrum — and the macaque research will probably
be duplicated in chimps.
Personally, I do consider higher-order primates to be people. At the same time,
I’m hypocritical and cold-blooded and selfish enough to countenance research on
primates that I’d oppose in humans, simply because it could benefit loved ones
or myself. I know this is ethically indefensible, but my conscience can handle
it. What my conscience can’t handle, though, is the thought of something that
would never be done in people being done in monkeys, just to see if it works.
Carl Zimmer’s science article in the New York Times, was entitled “From Ants to People, an Instinct to Swarm.” In it, he describes the work of Iain D. Couzin, who apparently considers a comparison of people to ants as “a cruel insult — to the ants.” Couzin has studied swarming in ants, birds, and locusts, to name a few. He has made computer models of swarming behavior, and, with colleagues, filmed and analyzed swarming behavior frame by frame. Recent testing of his models has taken him into the realm of what Zimmer terms “mediocre swarmers — humans.” Tellingly, Couzin and colleagues plan to publish their results of human swarming behavior in the journal, Animal Behavior.
What is going on here? This is reductionism — with a broad brush. Ants, monkeys, pigs, and humans are all alive; therefore, they are all equal. Hogwash. That is equivalent to saying that since people eat plants for food, and Zea mays Linnaeus and Amanita virosa are both plants, then people can eat them both for food. While the former, maize, is of nutritive value, the second, a poisonous mushroom, usually kills the consumer! Ants function in highly organized ways that humans do not: true. Cloning monkeys is similar to cloning humans: probably true, in terms of the methodology, and perhaps in timeline. Animals should be treated with care: also true. But all of these truths do not equal the falsehood that all creatures are created equally, with inalienable rights. Such would be truly unequally yoked. Yet that is the concept behind these examples of blurring the lines of separation between humans and animals.
In June of this year, reptile expert Brady Barr, his partner for the job, and a film crew were in an Indonesian cave, where they found a Giant Python. They were in waist-deep muddy liquid when Barr’s partner, Dr. Mark Auliya, caught the python by the tail. Barr turned to the camera to comment on the other man “having a tiger by the tail.” The story is instructive, and available on the National Geographic Channel. (Also available at the Baltimore Sun and USA Today)
This past summer another event of interest occurred–this one in Chicago. Danielle Egan in “Death Special: The Plan for Eternal Life,” describes the opening session of the World Transhumanist Association’s ninth annual meeting. This is another area where people are, at least seemingly, in charge, and perhaps even have a metaphorical python by the tail. In the words of Egan,
transhumanists plan to bypass death by using technologies such as artificial intelligence (AI), genetic engineering and nanotechnology to radically accelerate human evolution, eventually merging people with machines to make us immortal.
The “less egalitarian side” of this movement is personified by octogenarian Marvin Minsky, who founded the AI lab at Massachusetts Institute of Technology. According to Egan’s article,
“Ordinary citizens wouldn’t know what to do with eternal life,” says Minsky. “The masses don’t have any clear-cut goals or purpose.” Only scientists, who work on problems that might take decades to solve appreciate the need for extended lifespans, he argues.
He is also staunchly against regulating the development of new technologies. “Scientists shouldn’t have ethical responsibility for their inventions, they should be able to do what they want,” he says. “You shouldn’t ask them to have the same values as other people.”
This warrants exploration. If scientists can do anything they want, and do not need to have values similar to other people, what would it be that they cannot do? Should they, with impunity, be allowed to create whatever kind of life in the lab they are capable of creating? Should they be allowed, in the name of science and without regard to viruses or other infectious agents which may cross species lines, to create animal-human hybrids in efforts to understand or treat disease? Should they be allowed to make a new bacterium, the effects of which are unknown? Should society provide unlimited funding in the hope of unlimited (and sometimes unfounded) cures promised?
The outcome of the first “python by the tail” story was dramatic. Although his partner in science had the python by the tail, it was Barr who was bitten by the snake, and in waist-deep guano, at that. Thankfully, he recovered from that incident without significant complication, but of course, not without scars. The second story, where scientists may desire to have the python–science–by the tail, is less clear in its outcome. First, it is a work in process; outcomes are difficult to judge. Secondly, not all scientists are represented by Marvin Minsky. But they do not have to be. It takes only one to hold a tail, typically. And it is not necessarily the one holding the python by the tail who feels the greatest effect. The tail is not the business end of the snake. It is the one at the mouth end of the python or science that is most affected, be that Brady Barr or society at large. We all have a stake in the pursuit of science. It is on our own heads if we do not recognize this and act accordingly.
Just a few days ago, I was in an eastern European country for a medical conference. On the last day of my visit, one of my hosts took me to a monument near the capital city. The monument covered perhaps several acres of ground, and more lives than I could imagine. It was a monument to the people who had perished at a leader’s hands. There were small plots of ground which represented entire villages razed, often by herding people into a local barn and setting it on fire. Soldiers were stationed outside to shoot any persons who escaped from the fire. Humankind’s inhumanity to fellow humans was striking, but there was more to come.
In another section was a series of upright monuments, much like solid teller windows of a bank, where each division is dedicated to a separate concentration camp. I did not go beyond the first one. Here, behind the collection of small stuffed animal toys placed by other visitors to the site, was a monument to a concentration camp for children. Their blood was used to transfuse soldiers, and when their bodies were too weak for such use, they were fed to the dogs. One in four Belarusians — men, women, and children — were killed during World War II under the three-year occupation by Hitler’s regime. My tears, then sobs, were but a small testimony of the pain and suffering present in that place and in that land.
It is easy to condemn such atrocities, and shake my head in wonder at such horror. Surely such evil is behind us. That is, unless it is true that such evil can exist in all of our hearts. A time of reflection is needed.
What monuments will be built of our own time? Will they be monuments commemorating great accomplishments that have benefited humankind – diseases conquered, lives saved? Or will they be monuments to the vulnerable we have sacrificed to promote our own survival? To the same degree that Hitler was able to choose his actions, so are we. We may not be responsible for millions of people, but we have the power and the responsibility to make our choices well. How we treat the vulnerable in our midst says much about our character. If we extinguish the lives of others — whether very young, very old, or somewhere in between — for our own benefit, we cannot lay claim to moral ground any higher than that on which the Belarusian monument stands.
In May of this year, China published an extensive set of rules regulating human organ donation. According to a China Daily article (”Rules banning human organs trade go into effect“), “The regulations stipulate that human organ transplants should respect the principle of free will. And it is made a crime to harvest organs without the owner’s permission or will.” This seems promising, yet one exclusion is noteworthy: “The regulations do not apply to transplants of human tissue, such as cells, cornea and marrow.”
China is second only to the United States in the number of transplants done per year. Last month, Dr. Jeremy Chapman, president of the international Transplantation Society, was part of a delegation that discussed the trade in organs with China’s Health Minister, Chen Zhu, and Vice-Minister Huang Jiefu. Chapman stated, however, that the Ministry of Health has given no firm commitment to stop the use of executed prisoners’ organs.
There are some indications that transplants have decreased in number this year in China. Fewer immunosuppressive drugs have been sold, and the reported numbers are about half the 11,000 reported in 2005 and 2006. Additionally, according to the article, the delegation could not substantiate the allegations regarding transplants-on-demand from Falun Gong members.
From the website of Doctors Against Forced Organ Harvesting, “The Transplantation Society’s Policy on Interactions With China” by Annika Tibell, published 15 August 2007, states that The Transplantation Society (TTS) is involved in a collaborative effort with the World Health Organization (WHO) “to cooperate with government agencies and create national legal frameworks that comply with TTS standards of practice and guiding principles of the WHO.” Listed are a number of reforms China is instituting. These include, among others, banning the purchasing and selling of human organs, and the prevention of organ trafficking. Transplants on foreign citizens will have “special regulations.”
The Transplantation Society has stepped up to the plate, it seems, regarding the reported organ trafficking in China. Still, several issues need attention. Will there be a “firm commitment” on ceasing to use organs from executed prisoners? The situation with respect to the Falun Gong is, at best, unclear at this point. What are the “special regulations” for transplant tourists? Why cornea transplants are not considered in the reforms is unstated. Unlike bone marrow, corneas are not renewable resources. They may be “human tissue,” but are not usually given up willingly during life. Openness of the Ministry of Health to TTS and the WHO is encouraging; hopefully, accurate registries will also be open to these. There appears some light is being shed upon the harvesting and trafficking in human organs in China, but more light is needed. The spotlight of the 2008 Olympics is coming. When areas outside the sports arena are caught in the beam, it will be reassuring to see human rights upheld.
A few mornings ago I harvested a ripe red tomato — off my neighbors’ vine. It was on our side of the fence, beckoning me. I did not presume consent, however; my neighbors had told us a few days ago that they were leaving, and that we should pick any ripe tomatoes we wanted in their absence, since the tomatoes would be wasted otherwise. After the harvesting, though, I looked over to their garage and was surprised to see the door open with a strange van in the bay. My feelings of pleasure at the possession of the tomato were suddenly mingled with the discomfort of possibly having been mistaken as a thief.
There can be no true equating of tomatoes with kidneys, livers, or other precious human organs that are transplanted, but there are some elements common to both. One is the language: we call taking a kidney, a liver, a heart, lungs, and corneas (to name a few), “harvesting.” The harvested organs are transplanted into recipients. This seems a good thing, especially when people’s lives are changed for the better, even saved, by such transplants. Harvesting is typically done with consent of the donor — either informed consent or “presumed consent,” where the organs are taken from deceased persons who have not “opted out” (signed a form that states no organ donation is to take place) — or the family of the donor. There are, however, some murky cases, where harvesting and trafficking in human organs merge.
In the United States, selling organs is against the law. Organ transplants from federal prisoners are not permitted, except to immediate family members. Such is not always the case in other countries, however. Since the 1980’s, there have been reports that China has executed prisoners and removed their organs without consent of prisoners or families. (U. S. Department of State, “Sale of Human Organs in China”).
British cardiothoracic (and transplant) surgeon, Tom Treasure, wrote this in “The Falun Gong, organ transplantation, the holocaust and ourselves,” in the Journal of the Royal Society of Medicine, (March, 2007):
It is now accepted as fact that the organs of executed criminals in China are used for transplantation. It is claimed that they consent, but can this be freely given? That apart, an argument of the greater good and lesser evil can be invoked: if an individual has lost the right to life under judicial process, perhaps he has also lost the right to have his kidneys buried with him. Why should they be wasted when two innocent victims of renal failure could have an improved and extended life? But there is a still greater concern. As part of an expansion in religious activity into the ideological vacuum left by the collapse of communism, a spiritual movement called the Falun Gong has grown. Practitioners meet to perform their exercises and to meditate. They are pacifist by inclination and seek to meld modern science with Chinese traditions. It is hard to determine why they have attracted such disfavour but they are cast as seditious and undesirable. It seems that they are incarcerated in their tens of thousands in order to correct their way of thinking. Apparently when arrested, they are routinely blood tested. There is no reason to believe that it is for the benefit of the Falun Gong but blood group matching is critical to organ donation. The suspicion that Falun Gong practitioners are a source of organs is central to the investigative work of David Matas and David Kilgour who have formulated the allegation.
On this side of the world, it is hard to know exactly what is happening in China regarding organ transplantation and the Falun Gong. According to Dr. Treasure, one Chinese institution reported 647 liver transplants in approximately one year; this adds credence to other reports of executions-for-organs that are surfacing. Some of the “transplant tourists” to China and other countries are Americans, desperate for a functioning organ to replace that which has been lost. This “open market” for organs needs to be a transparent market, however. To participate in a process that deprives other humans of their human rights, including that basic right of life itself, is a weighty matter. Though well-functioning bodies beckon us, we need to stay our hand until we know the situation, and are assured that we are not causing harm by our actions. And true assurance cannot come from any who profit by this system.
What can one person do? Audra Ang, of the Associated Press, reported (21 April 2007) the story of one woman, Meng Zhaoping, a “53-year-old apple farmer from the fringe of the Gobi desert.” Meng has tirelessly sought information about her son, who was both convicted and executed in January 2005, for killing a man with a knife during a brawl. His mother never saw her son’s body; a hospital van took his corpse (No. 207) to a crematorium. Although she has no hard evidence, Meng believes her son’s body was used as a source of donor organs. The article describes some of her angst:
Clutching a grimy tote bag filled with legal documents and photos of her executed son, Meng Zhaoping is trying to argue her way past a security guard at the provincial high court for the second day in a row.
“Let me talk to someone! Give me justice!” Meng shouts as the guard blocks her way.
Meng is not the only one who cries out for justice in this dark place of organs taken from one human and placed in another’s body for a price. This is a market, and there are many who benefit. Where is William Wilberforce when we need him? Someone needs to shed some light here. Tom Treasure has given us his carefully crafted essay, built on investigative work by two others. Meng is asking questions, and writers like Audra Ang are reporting. It is time for “WWE’s”— William Wilberforce Equivalents in this age, to inform the public, help right egregious wrongs, and secure the guarantee of basic human rights to fellow humans caught in this world-wide web.
A debate regarding organ donation is getting underway in the UK: it is a debate about “presumed consent.” Presumed consent means that although no permission form is signed, and there is no documented mandated discussion with anyone, a deceased person’s organs can be harvested by the state for transplantation. Another name for this is “opting out”: your organs will be harvested after death unless you have specifically requested that such not occur. The current laws in the UK are revisions of the Human Tissue Act in 1961, and are voluntary, or “opt in,” where one must permit, by prior agreement, one’s organs to be harvested after death.
Such a debate needs to be had, certainly. In the UK, as in the US, thousands of very sick people fill waiting lists for organ transplantation. Families struggle to cope, hope languishes, and often people on waiting lists die. Voluntary programs seem not to work well, although the jury is still out on a particular organization, LifeSharers.
Is this simply about not enough people signing up for organ donation, either as living donors or upon death? Certainly this is true: we need more organs for people whose organs have ceased to function even marginally, if at all. This is not the whole of the matter, however. What follows are 10 issues or questions that need to be addressed in this debate (and this list is far from exhaustive).
How important is personal autonomy—the right a person has to decide what happens to him/herself? Where are its limits?
Is the current system of waiting lists fair? Does justice prevail in terms of how one is put on the list, and how one advances up the list?
What role does informed consent play—for donors or for recipients? How much should a recipient be told about the donor?
Should living donors be compensated for time off work, other costs? Who pays for treatment of complications?
What are the protocols by which one can be declared dead? Shall it be brain death only, or should non-heart-beating donors be considered? Should people who are born anencephalic or those who are in persistent vegetative state be declared dead so their organs can be harvested?
For those who are “medical tourists” (going to another country for a transplant), who speaks for the donor? With reports of prisoner-donors and economically-driven “donations” in some quarters of the world, what is our national responsibility on the global market, when human rights may be violated in the desperate search for organs?
Will the economic considerations outweigh compassionate care, so that patients are subtly coerced into becoming donors, by either healthcare workers or family members?
What are the age limitations for organ donation, for donor or recipient? Where should the lines be drawn?
If a recipient’s transplanted organ fails, where does that person re-enter the waiting list— at or near the top, or at the bottom?
Who should pay for the transplantation? What role does the payer have in the decision, if any?
These are but a few of the considerations we need to think about as we debate changing policies about organ transplantation. Thoughtful reflection, followed by considered action, is needed; presumption is not enough.
In our visual age, saturated with videos, movies, and their pretense of reality, Christina Bieber Lake would have us dust off the tomes on our shelves and sit down to read. Dr. Bieber Lake spoke on 13 July 2007, at the CBHD Bioethics Nexus conference. Replete with authors and titles, her talk centered about Nathaniel Hawthorne’s “The Birthmark.”
The character of Alymer in the story makes his mark in the scientific world and then takes to himself a beautiful wife. That is, she is beautiful until Alymer decides that the small mark on her cheek reveals her imperfection, and therefore, the mark must be eliminated. Bieber Lake explained, “Alymer has a scientific view of the world, and science can overcome his wife’s defect. . . Alymer’s moral imagination is the problem: this affects Georgiana, who shudders under his gaze, and the birthmark becomes even more pronounced.”
Bieber Lake held that Alymer cannot act ethically toward his wife because he does not love her. Making the application to our own time, she stated, “We solve our own problems by fixing others; Alymer is a moral infant in this regard. Making a potion is easy compared to learning to love his wife or others.” Bieber Lake concluded, “The primary problem in enhancement is failed love.”
Is this true? I need some time to think. Then I plan to take a book off the shelf, and read it to my children, imperfect as they are. After all, they resemble me in a number of ways.
Reflection on CBHD’s 14th Annual Conference Bioethics Nexus
“Bioethics of the 20th century pales in comparison with the spectre of bioethics in the 21st century,” declared Nigel M. de S. Cameron, Ph.D., as he opened the 14th Annual CBHD conference, entitled Bioethics Nexus. With a view to the future, but one with the past clearly in the rearview mirror, Dr. Cameron addressed the crowd in “How Did We Get Here? 25 Years of Bioethics Engagement.”
Never one to shy away from truth, particularly inconvenient ones, Cameron described the current situation as one in which “we have gone from medical ethics questions to questions about how we should make our private choices.” Further, “the abortion debate both catalyzed and misinformed the church, since it suggested that this vast moral and policy question was a function of a disagreement about ‘when life begins.’ This both marshaled and misled, for the question has always been What is man? - not When is man?”
Many voices clamor for attention with a particular view of humankind in mind. It isn’t enough to be convinced in one’s own understanding regarding the answers to these essential queries, opined Cameron; we must seek to find and build upon common ground with others, despite some widely divergent views. This is nowhere more true than in the emerging technologies of artificial intelligence, synthetic technology, and the brain-machine interface.