By MSNBC.com Health editor
msnbc.com
updated 11/10/2006 9:08:20 PM ET 2006-11-11T02:08:20

Face transplants, human cloning, embryo "adoption," paying someone to donate an organ ... life in the new century is full of ethical quandaries never faced before in history. And they're all topics Art Caplan has an opinion on.

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Caplan, director of the Center for Bioethics at the University of Pennsylvania and an MSNBC.com contributor, wades into the gray area between what science can do — and what it should do, in his newest book "Smart Mice, Not-So-Smart People" (Rowman & Littlefield).

In the wake of the election that will almost certainly alter the future of much-debated stem cell research, Caplan paused to answer questions:

Q: What is the single most important bioethical dilemma faced in the U.S. today?

A: The biggest bioethical challenge America faces is the failure to guarantee access to decent health care to every American. We do not have, as some politicians and representatives of the health care industry often assert, the finest health care system in the world. We have no system. We have a patchwork mess that is inefficient, costly and highly susceptible to preventable errors and mistakes.

We lack any serious public program aimed at paying for mental health care or long-term care. The American people should not tolerate this situation. Whatever one's political beliefs, it is ethically incumbent on us to protect, support and empower the sick, ill and vulnerable in our society. The reality that there are American children who lack adequate pediatric care, mental health care, dental care, eye care and support for coping with disabilities is a grave, grave ethical failure.

Q: What kinds of medical ethical conundrums do you see today as opposed to 10 years ago?

A: One of the trends I comment on in "Smart Mice, Not-So-Smart People" is that technology is moving in biomedicine at an incredibly fast pace on many different fronts. Ten years ago, bioethics was dealing with the last-gasp technologies produced by mid-20th century research — the ICU, the blockbuster drug, the dialysis machine. That is no longer the case.

Investments in genomics, the neurosciences, bioengineering, nanotechnology, genetic engineering, bioagriculture and imaging technologies are starting to produce. It is very clear that the 21st century will be the age of the life sciences where new knowledge of our genes, brains and physiology will confront us with incredible choices and challenges.

The first hints of the ethical fallout from progress in the life sciences are all around us — cloning, deep brain implants to fight Parkinson's disease, genetically engineered food, nanomedicines, embryo biopsies, creating synthetic viruses, medicines targeted at people with particular genotypes, growing organs to replace damaged ones, drugs that allow us to stay awake longer or to build blood cells faster. How we respond to these emerging technologies will put patterns in place that will determine the options and limits that govern the lives of our children and grandchildren. Who gets access to these technologies, what people can choose to do with them, how business and governments around the world promote, regulate, pay for and prohibit them are among the biggest ethical challenges that face us in the years to come.

Q: Technology has made it possible for seriously ill people to live far longer than they used to. But how should quality vs. quantity of life be weighed?

A: As the Terri Schiavo case made abundantly clear, we do not have a consensus in American society about what makes life worth living or who should make that decision for someone who cannot do so themselves. This uncertainty extends to other nations as well. It is reflected in different attitudes towards permitting physician-assisted suicide, rationing of expensive medical technologies and the efforts that comparably wealthy nations are willing to make to try and rescue children born with severe congenital disabilities or, elderly persons with dementing illnesses like Alzheimer's. It is hard to imagine an Ariel Sharon being kept alive by technology, as he has been in Israel, with the amount of devastating brain damage and complications he suffered from his massive stroke in say Sweden, Singapore, Canada or even California.

I think and try to argue as passionately as I can in "Smart Mice" that quality of life must be taken into account in making life and death decisions — whether it is for your mother or by society deciding how much money to spend on the dying. The point of medicine is not to preserve biological life but to restore fundamental human capacities — cognition, emotion, mobility and human interactivity. It strikes me as nothing short of cruel to argue that quality of life will not be considered an appropriate part of deliberations about when to forgo life-extending care and treatments or to stop them.

Q: Can you talk about a medical ethical dilemma you've faced in your own life or family? What was it and how did you resolve it?

A: I think the hardest dilemma I faced was my battle with polio when I was a young child. I don't bring this experience up very often except when asked outright since I don't want to use personal experience as giving my views any special credibility or standing.

Two things stuck in my mind about being a paralyzed 7 year old in a Boston hospital. One was that no one would tell me the truth about what I had. The other is that when there is no cure and no fancy technology our health care system is at a loss about what to do with a person who is ill — physically or mentally. It was true then and it remains true, sadly, today. I could not resolve those problems at the time. But even as a kid they made me mad.

As a result of that experience, I have tried to be vigilant about insuring that every American, child or adult, has the right to know the basic facts about their disease and its prognosis if they want to know them. And despite the fact that I have a bit of a reputation for being fascinated by the technological side of biomedicine — a preference I will admit is true — I have tried hard in my writings and lectures to not forget the moral challenges involved in chronic illness, long-term care and rehabilitation. Our health care expenditures and public programs are skewed way too far toward acute illnesses and hi-tech diagnosis while leaving these fundamental areas of health care unjustly impoverished.

Q: What criteria do you take into account when deciding if something is ethical or not?

A: I am a consequentialist. I tend to look at the outcomes of policies, behaviors and choices to figure out if they are good or bad, right or wrong. Do we make a person or a group better off or worse off if we permit genetic testing or compel them to be vaccinated or allow them to use steroids in athletic competition? The fight over what counts as "better off" is the core conundrum facing any moral consequentialist but that is simply how it is — you have to go case by case in a pragmatic way to reach an answer.

Consequences aside, I also believe that it is vitally important to try and create people who have virtues, who exhibit good moral character. No society, from the Greeks and Romans down to the present day, has figured out quite how to do this but our Western and Chinese forbears all recognized that "good" people are likely to make good decisions. We have to make sure that we reinforce those who do good, who exhibit virtue in our society. Having a lot of money or a thin figure ought not be taken in and of themselves as indicative of personal virtue. Just a little reminder there to gossip columnists, the Wall Street Journal and those in the fashion and beauty industries!

Q: Have you ever made a recommendation about an ethical dilemma and then later changed your mind? Can you talk about that?

A: Yes. A number of times. I'll give you one example although there are lots.

Many years ago, I argued that it was ethical to take organs from children born with a horrible, lethal condition known as anencephaly. These are kids who are born with most of their brains missing. They cannot live very long. Most are stillborn. But when they are born some parents ask that their baby be used as an organ donor. The shortage of organs for very young kids is enormous and these anencephalic babies may have hearts or kidneys that could be transplanted.

I argued for this and helped convince some medical groups and policy makers to at least think about expanding the definition of organ donor to include both brain-dead people and babies with anencephaly. But, many, many people disagreed.

Some thought it obviously and inherently wrong to remove an organ from a child who had not been pronounced brain dead even though these babies could not meet that standard since they lacked most of their brain. Others worried that once you start utilizing kids with the most severe, horrible brain defects there will be a slippery slope to using other babies with less devastating conditions. I don't believe that slope is one we would have to go down but the combination of these arguments and the possibility that a slippery slope might ensue persuaded me that I was wrong. I stopped arguing for changes in the law that might allow anencephalic infants to be used as organ donors.

Q: You're an ethicist, but is there any occasion where you find it justifiable to lie?

A: Oh yeah. I have been known to give some pretty positive feedback to members of the opposite sex about their selection of clothing or haircuts (for the record this does not include my wife whose dress and grooming are always impeccable).

Seriously, there are times when some lying or not being truthful has a role, in my view, in bioethics. I had a visit from a high-profile political figure a few years ago. He had a friend who needed a kidney and as soon as he heard about this he volunteered one of his own. But his wife did not want him to go through with the organ donation and he himself had second thoughts. I think donors have the right to change their minds but sometimes it is too hard to do so publicly. So medical teams will, as they did in this case, disqualify someone as "medically unsuitable to donate" which is, in my view, telling a lie to permit a person to change his mind without feeling pressured or coerced.

Q: Stem cell research is a point of massive contention. How will the results of this week's election affect stem cell research?

A: I am still not sure the votes are present in the newly elected House and Senate to override a Presidential veto for public funding of embryonic stem cell research. The President, however, will have to use his veto pen again because I am certain legislation will be back on his desk within a 100 days of the seating of the next Congress.

Embryonic stem cell research will happen. It will go forward in California where Governor Schwarzenegger is a supporter. Jim Doyle, re-elected in Wisconsin partly due to his stance on this issue, Ben Cardin in Maryland and many other politicians will be scrambling to try and insure that their state gets a piece of the research action. Other nations such as Singapore and the United Kingdom continue to move forward in this area. Not every state may wind up supporting or investing in embryonic stem cell research but the issue of whether it happens is over.

The only issues now is how fast, with what level of private and public support and with what sort of patent and license restrictions on the research. Let me add that if and when any therapeutic breakthrough occurs using cells produced from embryos, that will be the last day that we see a president able to oppose federal funding.

Q: New York City is contemplating banning trans fats in restaurants. Is it ethical for a city to make that decision?

A: No, I don think so. I think food ingredients are not the same as smoking or driving a car under the influence of alcohol. Government can take an interest in preventing health problems from being spread or communicated. I think New York City could quarantine someone with SARS or avian flu. I think they can argue that sustained exposure to second-hand smoke is unhealthy to restaurant or bar workers and ban smoking. But I think decisions about diet ought be left to consumers rather than be dictated by administrative regulation.

I have no problem with the government putting taxes on unhealthy foods to cover the costs associated with the treatment of those who get ill from eating them presuming a case can be made that a food is so unhealthy that it is costing the rest of us an arm and a leg to pay for those who overindulge. But I would not begin with trans fats. If New York wants to get in the business of policing the diets of its citizens then public health officials should be giving a wary eye to the Carnegie and Stage delis, the hot dog carts that dot the city's streets and maybe considering shuttering some of those fancy chocolatiers and pastry joints on the upper East Side.

Q: What ethical stand have you taken the most flack for?

A: These days, it is probably either my arguing that embryonic stem cell research ought be paid for with federal funds or my opposition to creating markets to increase the supply of organs.

Proponents of paying people to motivate them to have their parts sawed out of their bodies note, correctly, that many people die every day for want of an organ. But my view is that exploiting the poor and the desperate to undergo risky surgeries for cash is not an ethical way to solve this terrible problem.

Moreover, I am not at all convinced that allowing a market in organs will increase the supply. The ideologically committed free marketeers at think tanks like the Heritage Foundation and the American Enterprise Institute think that a market can solve any shortage. But they fail to understand that many people simply oppose involvement with organ donation on religious or emotional grounds.

Lots of Americans worry they won't get aggressive medical care if they sign an organ donor card. Still others believe that you do not own your body — it is a gift from God and therefore you cannot sell it. Lots of physicians and nurses think it would be ethically abhorrent to take out someone's kidney or a lobe of their liver simply so they can make money and won't do it. Still others think the legacy of slavery in this nation makes talk of the sale of body parts completely anathema. Those who worship at the Church of the Free Market have a tin ear to these concerns.

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