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July 31, 2008

A Conversation with Peter A. Lawler (Part I)

Peter Lawler at the podium

An Interview by D. Joy Riley, M.D., M.A.

Dr. 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: 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.

Hazardous Pay: Creating a Market for Eggs

This is a tale of two stories: I have long said that what I call the “egg dearth” will stymie the drive by biotechnologists to engage in human cloning research. That is happening now, and the scientists are none too happy about. And, as I predicted, the push is on to permit buying eggs for cloning research.

But we’ve discussed that before here at SHS. The good news in the latest report from the AP about the push to allow eggs to be purchased for research, byline Mrcus Wohlsen, actually discussed the risks to women. From the story :

Critics of the egg-dependent approach to stem cells say the promise of the research is outweighed by the potential harm to women, a view that has prevailed among regulators.

Even under normal doses, drugs used to coax eggs for use by fertilization clinics can occasionally lead to serious complications caused by excessive stimulation of the ovaries. In rare instances, the condition can be fatal.

Egg payments could also create a conflict of interest for those retrieving the eggs, according to therapeutic cloning skeptics. If money changed hands, they say, doctors responsible for the well-being of egg donors would also have a financial incentive to administer high doses of egg-stimulating drugs to produce as many eggs as possible.

Egg buying is already a fact in the fertility industry. But in promoting the practice, somehow the risks went unmentioned in a piece reported by Channel 5 Fox News in Las Vegas. From the story:

The donors will make in the area of $7,000, and the surrogates will make anywhere from $20,000 to $30,000 plus,” said Nancy Block, founder of the Center For Egg Options.In the Valley, Dr. Bruce Shapiro at the Fertility Center of Las Vegas said compensation is closer to $3,000 to $5,000.

But he said he hopes the economy is not the main reason more women are donating.

“We really try to have people who donate for altruistic reasons. That’s the best of all worlds. Sometimes you can’t be absolutely certain. You can only be certain of what a person tells you,” Shapiro said.

He said it is a fairly simple process that takes about three weeks.”It’s more invasive than donating sperm, but still, it’s painless, and there’s more time involved, but we try to make it as smooth a process as possible,” Shapiro said. He said the side effects of donation usually include some aches and cramps, similar to those of a woman’s period.

Shapiro should be ashamed, unless he gave a full description of the risks and it didn’t make the story, in which case the producers at Fox 5 in Las Vegas should be ashamed.

Example: View this video of Calla Papademus, a former Stanford student, telling how she almost died when she sold her eggs.

Some say that biotech and fertility medicine should be treated the same with regard to buying eggs. I agree. Ban the practice altogether. That would still permit true donations and permit women to have their own eggs harvested for use in fertility treatments. But it would prevent turning women into commodities and save some from experiencing devastating health problems. It might even save their lives.

Fruit-fly study adds weight to theories about another type of adult stem cell

It turns out that an old dog – or at least an old fruit-fly cell – can learn new tricks. Researchers at the Stanford University School of Medicine have found that mature, specialized cells naturally regress to serve as a kind of de facto stem cell during the fruit-fly life cycle. (PhysOrg)

Egg shortage hits stem cell studies

Facing a human egg shortage they say is preventing medical breakthroughs, scientists and biotech entrepreneurs are pushing the country’s top funders of stem cell research to rethink rules that prohibit paying women for eggs. (San Francisco Chronicle)

Workers’ Religious Freedom vs. Patients’ Rights

A Bush administration proposal aimed at protecting health-care workers who object to abortion, and to birth-control methods they consider tantamount to abortion, has escalated a bitter debate over the balance between religious freedom and patients’ rights. (Washington Post)

July 30, 2008

Op-Ed: My body, my capital?

Long life is our desire, eternal youth our supposed right, and the myth of the body without origin or limits our new religion. That might be why governments are so widely seen to have a positive duty to promote stem cell research and other forms of medical progress. Biotechnology industries flourish, with state sanction and support, because they add extra value to the body, the object of supreme worth to us. (Daily Times)

Op-Ed: Freezing time? Banking eggs buys hope

While doctors have been freezing sperm for about 50 years, egg freezing is still considered experimental by some and reserved mostly for young cancer patients facing fertility-threatening chemotherapy. (MSNBC)

UK: ‘Take Innocents Off DNA Database’

Innocent people should have their profiles deleted from the National DNA Database, according to a government-funded inquiry. (Sky News)

Op-Ed: The unnecessary dangers of assisted suicide

Assisted suicide is unnecessary because effective palliative care is available to ease pain and distress associated with terminal and chronic illness. Evidence shows that the majority of pain and other symptoms experienced by the terminally ill can be relieved through specialists providing expert palliative care. (Scotsman)

Legalizing organ trade in Singapore

There is a raging debate in Singapore today: Should the government legalize the organ trade? Should Singapore endorse transplant tourism? The debate began last month when two young Indonesians were jailed for trying to sell their kidneys to a wealthy businessman in Singapore. The Human Organ Transplant Act of Singapore prohibits the supply of any organ or blood for monetary transaction. (UPI Asia)

July 29, 2008

Is the Embryo Sacrosanct? Multi-Faith Perspectives

Representatives of different faiths frequently intervene in debates around fertility and assisted reproduction, with religious perspectives cited in recent months both in support of and in opposition to the UK’s Human Fertilisation and Embryology (HFE) Bill. But religious attitudes towards the human embryo are not always well understood, and can be counterintuitive. This is particularly true when views of the embryo differ not only between the world’s major religions, but also according to different denominations and traditions within each religion.  (Conference Website)

9.30am-5pm, Wednesday 19 November 2008

Clifford Chance, 10 Upper Bank St, London, E14 5JJ

Janet Rivera’s Cousin Granted Her Conservatorship

The family of Janet Rivera wants her to live. The doctors wanted her to die. The County Conservator sided with the doctors. He ordered her respirator and feeding tube removed. She didn’t die over more than ten days. The family begged to put her feeding tube back. The powers that be refused. Finally, litigation ensued. A judge ordered the tube feeding restored. Today, a cousin got conservatorship. Hopefully that will end the case. From the story:

Janet Rivera’s cousin, Suzanne Emrich of Boulder Creek in Santa Cruz County, was granted conservatorship in the high-profile case this morning. Emrich and the Fresno County Public Guardian’s Office reached the deal, sealed in court. Rivera, 46, has been comatose for two years following a heart attack. It’s unclear what Rivera’s preferences about life support would be.

The county removed her from life support July 11 over her family’s objections. Life support was reinstated July 23.

Imagine reading this ten years ago, and it would have been unthinkable: A family begged to have their loved one’s life maintained, and until a judge got involved, their pleas fell on deaf ears. And who knows the extent of harm caused by more than a week without food and water. Such is the nature of the culture of death that this way comes.

Tackling peer review bias

New statistical analyses of the National Institutes of Health’s peer review process suggest that the current system may be missing the mark on funding the right proposals. (The Scientist)

Most generalists reluctant to provide primary care for young adults with chronic illness

The majority of general internists and pediatricians in the United States are not comfortable serving as primary care providers for young adults with complex chronic illnesses that originate during childhood, according to findings from a new national survey. (PhysOrg)

India is becoming the hub of clinical trials

Declining enrollment in USA and West European countries has led the pharmaceutical and biotechnology companies to turn towards India and other Asian countries to conduct clinical trials for faster launch of drugs in the market. (MeriNews)

Michael J. Fox Foundation Funds $1.1 Million for Cutting-Edge Approaches to Parkinson’s Disease Under Rapid Response Innovation Awards 2008

Gene silencing techniques and induced pluripotent stem cell technology are among the cutting-edge approaches to Parkinson’s drug development funded through The Michael J. Fox Foundation’s Rapid Response Innovation Awards 2008. (MarketWatch)

Contentious Relationships Between Doctors and Patients

The relationship is the cornerstone of the medical system — nobody can be helped if doctors and patients aren’t getting along. But increasingly, research and anecdotal reports suggest that many patients don’t trust doctors. (New York Times)

U.S. AIDS policies neglect blacks, report says

U.S. policies and cash may be leading the fight against AIDS globally, but they have neglected the epidemic among black Americans, the Black AIDS Institute said in a report released on Tuesday. (MSNBC)

July 28, 2008

Medical Tourism Cannot Be the Answer

I have reported here at SHS that due to the “NHS meltdown,” tens of thousands of UK patients travel abroad to receive care they should be able to receive close to home. Now, the concept is apparently spreading in the USA, at least if the AMAMedical News is to be believed. From the story:

The American Medical Association House of Delegates recently took an interest in medical tourism as well. At its Annual Meeting in June, it approved a set of guidelines designed to help ensure that globe-trotting patients have all the information they need to decide for themselves when to go overseas, and that they are protected when they go. The guidelines, outlined in a report by the AMA Council on Medical Service, also consider the role of physicians back home involved in their traveling patients’ follow-up care.

Right now, it is too early to conclude whether the risks of medical tourism outweigh the advantages. Meanwhile, long-standing AMA policy on pluralism in health care supports the ability of patients to choose their treatments and physicians.

The operative word is “choose.” The guidelines state that medical care outside the United States must be voluntary, and that any financial incentives should not inappropriately limit the diagnostic and therapeutic alternatives, or restrict treatment or referral options. In the end, the decision to travel for care is those patients’–not anybody else’s.

There’s the “C-word” again, the excuse for every pullback from upholding robust ethical norms.

Rather than shrug its collective shoulders about the threat of medical tourism, it seems to me that the AMA should instead strive to promote policies where patients wouldn’t feel so pressed that they would consider traveling 5000 miles, to be treated by doctors they have never met, in a circumstance where they are far from family and friends. But, alas, this is the kind of bland “leadership” we too often get from our institutions these days:

The cost of care and the issue of the uninsured need to be addressed at home so patients don’t feel like they have to look elsewhere for affordable, quality medicine. But while patients are seeking care elsewhere, they need to be fully informed about the risks of opting for medical tourism. Traveling overseas may be their choice. What they certainly don’t need is anybody else forcing the decision on them.

But that is what will happen if the current trends continue and the medical establishment doesn’t take a stronger stand.

Yes, people should have choices, but the AMA’s bland “safeguards” approach could grease the skids for HMOs or publicly funded programs outsourcing expensive surgeries and other forms of care to India or other nations. Whatever happened to leadership?

Consent issues restrict stem-cell use

Stanford University is to tell its researchers that around one-quarter of the human embryonic stem-cell lines eligible for US government funding are now off-limits because of ethics concerns. (Nature News)

`Stem cell tourism’ is exploitation, experts say

Stem cell experts are racing to curb a growing trend that sees Canadians travelling abroad for experimental stem cell treatments not allowed in North America. (The Star)

 

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