Daniel Callahan

The aim of health care should be, within a finite life span, to help us to have a good chance to progress from being young to being old—but not to go from being old to being indefinitely older; to relieve us of our most burdensome physical and mental suffering—but not always fully or perfectly; to rehabilitate us as best it can if we are disabled—but to understand that some of us will live our lives with chronic illnesses and disabilities; and to help us achieve as pain-free and peaceful death as is possible—but knowing that goal will not always be possible. Medicine ought not to seek an indefinite extension of life or aim to enhance our nature beyond the ordinary standards of good health, or search out medical ways of excessively fighting our decline and frailties, many of which are now and always will be unavoidable. Just as death ought not to be taken as the ultimate enemy of human life, health should not be taken as the ultimate good.

As Judith Feder and Donald W. Moran have observed, “To be serious about cost containment, it will be necessary to admit that containing costs will require affecting the decisions that individual Americans make every day in all the settings in which they make them.” Whether Americans can be brought to think differently about health, to expect less and to settle for less, and to be willing to forgo some health care they might like, or even need, for the sake of the public good, takes a utopian, or maybe a counter-utopian elixir of hope and imagination. I see no plausible alternative.

As individuals, we are in a position similar to our health care system problem if we do not learn to rein in our aspirations for perfect health, to live with some of our needs that might otherwise be medically dealt with, to run some risks with our health, understand that an elevated level of this or that reflects a possibility of harm only, not a death sentence, and to recognize (even if begrudgingly) that a cure of one of our otherwise lethal diseases will not save us from some other one. Cured diseases are always succeeded by a final and fatal disease. If we as individuals do not bring some greater realism to our health, some willingness to put up with our mortality and vulnerability, and the anxiety that goes with its recognition, then there is no hope that costs can be controlled, hardly any technologies that can be limited or denied.

There is, to be sure, an obvious objection to my line of thought here. Even if, as individuals, we limit our medical appetite, there is no guarantee that any money saved by our altruism will go to other more serious social or health needs. True enough, and that is one of the serious penalties for living in a society without universal health care and the circumscribed budget that should go with it. But it is also true, as we can see with voting, that it is a bad mistake to think that, with a large electorate, our individual votes are irrelevant. The danger is not that one vote will harm the election process. It is that, if everyone thinks that way, then the process will indeed be harmed. So, if only a few of us begin to change our views of health care, and then a few more, that might indeed make a difference.

My scenario may be fanciful, but as individuals we need an open discussion on what counts as good or bad choices, wise or imprudent ones, and our social obligations to our community as we make them. Such a discussion need not be, and ought not be, coercive. It might, however, help shape some rough consensus, moving us at least in the right direction There is an obvious truism, usually ignored in health care, that the collective, aggregate impact of our private choices can affect the public good. Hence, it is worth the effort to see if those private choices can be nudged in a helpful direction. That direction would be, following my finite model of health care, toward less, not more, and even much less.

SAUL GONZALEZ, correspondent: Unlocking and interpreting the secrets hidden in DNA used to be the province of scientists and medical researchers. But now it’s a growing business, one that’s selling genetic information directly to American consumers, making a DNA test as easy to buy as housewares or clothing.

JACK LORD (CEO, Navigenics): You know, I think for the history of man people have always wanted to see something about their future, and now, through the power of genetics and genomics, we are able to look into the future in a science-based way.

GONZALEZ: Jack Lord is the CEO of Navigenics. It’s a California-based company that for a fee of $999 offers its clients a personalized DNA test, one that pinpoints genetic markers indicating possible future threats to their health.

Jack Lord

JACK LORD: It’s really simple. It’s some saliva that we collect. We analyze that and then give you a report that shows what your risks are compared to people in the population at large. So today we test for 28 conditions, and they range from chronic conditions like diabetes or heart disease, to cancers like melanoma or prostate cancer or breast cancer, to other conditions that are generally silent diseases like glaucoma and macular degeneration, celiac disease, to Alzheimer’s disease.

GONZALEZ: Navigenics is one of a growing number of new companies selling genetic tests directly to the public. All of them promise their clients better health and a better life by getting up close and personal with their DNA.

MIKE GODFREY (Navigenics Client): Once you log into the Navigenics site, you get a snapshot page here that just really outlines in these square boxes what you are at a high risk for, what you are at average risk for, and what you are at lower than average risk for.

GONZALEZ: Mike Godfrey, who works in corporate communications for a hospital in San Diego, is a Navigenics client. When he first got his DNA results back, Godfrey was surprised by his relative risk for several illnesses when compared to the rest of the population.

GONZALEZ (speaking to Mike Godfrey): …diabetes, Alzheimer’s disease, heart attack, brain aneurysm, obesity….

MIKE GODFREY: …atrial fibrillation, obesity…

GONZALEZ: That would seem to be a lot to be worried about.

MIKE GODFREY: …Graves disease, which I never even heard of before. So to be honest, in my initial reflection when I looked at this, I went whoa!

Personal trainer to Mike Godfrey: One more. That’s all you need. Just one more.

Mike Godfrey

GONZALEZ: Although he says he’s not overly concerned, Godfrey’s DNA test results have spurred him to think more about his health and spend a lot more time at the gym.

GODFREY: When you look through all of those orange boxes that we went through and you take a look, almost all of them say that you should keep your weight down, that you should stay in shape, that you should eat better. It was validation to me that, yeah, that was the right move and your money is being spent in the right place and the work you are going through is going to be worth it in the end.

GONZALEZ: Lord says his company offers tests only for treatable or preventable illnesses, giving clients an edge in anticipating and avoiding future health problems.

JACK LORD: And it is with that information that they can start to understand what they might do today to prevent an illness. If you know that in advance you can start going to your doctor more frequently to be checked, or you might start a medication that prevents that condition much earlier than when you become symptomatic.

SARAH CROSBY-HELMS (Navigenics Client): It doesn’t say you are going to die, here’s why. It says here are some things you are prone to, and here’s how you can prevent them from showing up in your body later.

GONZALEZ: Sarah Crosby-Helms, another Navigenics client, discovered through her test that she had a higher than usual genetic risk for both colon cancer and Crohn’s disease. The information got Crosby thinking about how much she really wanted to know about future threats to her health.

SARAH CROSBY-HELMS: For me, I would rather know that I have this genetic predisposition than to not know, and if that means that…

GONZALEZ: Ignorance isn’t bliss?

Sarah Crosby-Helms

SARAH CROSBY-HELMS: No, ignorance for me is not bliss.

GONZALEZ: The direct-to-consumer genetics testing industry says it promises its clients a glimpse over their health care horizon, warning them of possible dangers and threats to come. But critics aren’t so sure. They worry that the technology is being oversold and that it raises a host of both ethical and public policy concerns.

ALEXANDER CAPRON (Professor of Law and Medicine, USC): We don’t know everything about the relationship between genes and diseases, and even what we do know doesn’t really tell you that much about what should you do now.

GONZALEZ: Alexander Capron is a professor of law and medicine at the University of Southern California and the former director of the ethics program at the World Health Organization. He’s concerned that as genetic tests become more common, a growing number of people will overemphasize DNA as the road to a long life and personal happiness.

ALEXANDER CAPRON: There are so many other things that are equally or more important and that are actually things that we should be more concerned about in our environment, in our human relations, in social justice, so that all people have an opportunity to have a life in which they can flourish and so forth, and not just narrowly, well, what’s your genetic code? I would also be aware that you could have some surprises that you really don’t want to know, that you would just as soon not have on your mind. What should you do now? What difference should this make in the way you behave, in the health care you get, in your relationships with loved ones, your plans for your future? Should you not take a certain job because the payoff in that job won’t come for ten or twenty years, and you have got a gene that says you have a twenty percent chance of getting breast cancer or something? What should you do with that information?

GONZALEZ: There are also concerns among some health experts about the regulation of direct-to-consumer DNA testing. Currently, no federal agency such as the Food and Drug Administration or Federal Trade Commission has come up with rules to monitor the companies’ marketing claims, testing practices, or the validity of results.

Alexander Capron

ALEXANDER CAPRON: I think we are still in early days on the regulation side, and the FDA has more work to do here. The field has grown, I think, faster than anyone expected.

GONZALEZ: Worried about the licensing, utility, and accuracy of direct-to-consumer genetic tests, some states, such as California and New York, have sent cease-and-desist letters to prominent DNA testing companies. Then there are the privacy worries and whether someone’s genetic information could leak out to insurance companies or employers. Lord acknowledges protecting genetic data is crucial to his company’s reputation and future.

JACK LORD: Privacy is to Navigenics like safety is to Volvo. We have to have — our brand is dependent on privacy and the integrity of privacy and security, and the visual that we use is imagine walking into a bank vault and inside that bank vault there are safe deposit boxes, and the only way you open that safe deposit box is if you have a key, and the bank has the key, and that’s the way we have built our systems. You have control over how that information is accessed, what it’s accessed for, and who actually has access.

GONZALEZ (speaking to Mike Godfrey): You’ve just shared a great deal of your genetic information with us. Do you have any privacy concerns, sharing it with us and by extension an audience across the country?

MIKE GODFREY: Obviously, I don’t.

GONZALEZ: Mike Godfrey’s confidence comes partially from the genetic nondiscrimination privacy act passed by Congress in 2008. It prohibits health insurers from denying coverage based solely on a person’s genetic predisposition.

MIKE GODFREY: My feeling is that those laws will be continued to be updated and that there won’t be much risk to me in the future or to anybody who does this. I think that this will become a pretty standard approach as you go into the future, for adults and maybe even for children when they are very young.

GONZALEZ: As he uses his genetic results to guide his heath decisions, Godfrey is also a test subject. He’s one of thousands of Navigenics clients who have volunteered to be monitored for the next twenty years as part of a scientific study. It’s purpose? To find out how—and if—people change their lifestyles after finding out what’s in their DNA.

Personal trainer to Mike Godfrey: Bring it all the way up.

For Religion & Ethics NewsWeekly, I’m Saul Gonzalez in Los Angeles.

Kim Lawton and David Masci

President BARACK OBAMA:  As a person of faith, I believe we are called to care for each and work to ease human suffering.  I believe we have been given the capacity and will to pursue this research and the humanity and conscience to do so responsibly.

LAWTON: The Catholic Church and several other religious groups oppose that research because it destroys the embryo, which they consider tantamount to killing an innocent human life.

Joining me with more is David Masci, senior research fellow at the Pew Forum on Religion & Public Life.  David, how controversial is this within the religious community?

DAVID MASCI (Senior Fellow, Pew Forum on Religion & Public Life): Well, there are a range of different opinions in the American religious community. Jewish denominations and mainline Protestant churches, particularly more liberal mainline Protestant churches, support embryonic stem cell research. They say that embryos have intrinsic value and worth, but the incredible possibilities that stem cell research offer — cures for cancer and things like that —outweigh those concerns and considerations. On the other side, you have the Roman Catholic Church and you have more evangelical Protestant churches like the Southern Baptist Convention or the Missouri Synod Lutheran Church. These churches oppose embryonic stem cell research. They say an embryo was a person and a person has the right to life and you can’t take that life away, even for the best of reasons.

LAWTON: What about the people in the pews? Do they agree with the leadership of these institutions?

Mr. MASCI: White evangelical Protestants tend to support their churches’ positions on this, only 31 percent of evangelicals support embryonic stem cell research, so a substantial majority say no, we don’t want embryonic stem cell research. With Catholics it’s the other way around. Fifty-nine percent of American Catholics support embryonic stem cell research, which of course goes exactly against what the Church’s leadership is saying. Now when you ask Catholics who attend Mass regularly, weekly, whether they support embryonic stem cell research, that number drops to 46 percent. So people actually in the pews, people who are attending Roman Catholic services, they do — they are more likely to support their leadership’s views on this than Catholics as a whole.

LAWTON: What about the issue of adult stem cells? There are some opponents of embryonic stem cell research that say this is a way of getting the stems cells without destroying the embryo, and therefore it might be an ethical alternative. Is that indeed a viable alternative?

Mr. MASCI: It might be. I think that’s the right way to put it. Scientists tell us that they’ve made an enormous number of strides especially recently in this area. They’ve been able to reprogram skin cells, for example, to act like embryonic stem cells so that they can be used in all different kinds of ways. But scientists also say that these cells and embryonic stem cells, in both cases they’re not really ready for medical therapy yet. They haven’t reached the point where they feel confident that they can do all the things that they hope they can do. So their position—scientists are saying, you know, what we need to do is work in both areas, with adult stem cells and with embryonic stem cells. On the other hand, you have some opponents of embryonic stem cell research saying adult stem cells are clearly the way to go. They eliminate the ethical considerations, and given the advances that have been made recently it’s clear that that’s where we’re headed in terms of this therapy.

LAWTON: All right. David Masci, thank you very much.

Mr. MASCI: Thank you, Kim.

Unidentified Man (working in lab): Stick it right back in there. Okay, and we’ll close it up right there. And this is the same thing, these are …

LUCKY SEVERSON: Three years ago, Pearl Wilson’s son Charles died in a Maryland prison while awaiting sentencing for rape. But for his mother, her son lives on.

PEARL WILSON: My son lives in me and I in him, and his blood is my blood, and my blood was in him.

SEVERSON: Though Charles is dead his DNA still sits in a databank. By law DNA has to be gathered from all felons. Some states even take it from arrestees. The DNA profiles remain there indefinitely.

Ms. WILSON: I’m worried about them continuously holding my son’s DNA in that database.

Pearl Wilson

SEVERSON: Attorney Stephen Mercer, who specializes in DNA issues, says Pearl Wilson has reason to be worried. He’s trying to get her son’s DNA expunged from the database because he’s concerned it might be used at some point for what is called familial searching, a new technology that has been used sparingly so far in the U.S. The most notable case was the so-called “BTK” serial killer, Dennis Rader. After 30 years and 10 murders, the BTK killer was finally caught after police obtained a DNA sample from his daughter that almost perfectly matched the DNA from her father’s crime scenes.

STEPHEN MERCER (Attorney): DNA between persons who are related is vastly more similar than DNA between persons who are unrelated. So when the government has the DNA of one family member, in effect, they have the DNA of that person’s siblings, children and parents.

SEVERSON: Here’s how it works. DNA from a crime scene is run against the nearly six million samples on file. If there’s a partial match, it likely means that a relative of someone in the database is guilty of a crime. This kind of testing could open up a whole new realm of possibilities for authorities. But critics warn that is could mark the beginning of dragnets, sweeping in people who are completely innocent and possibly violating their Fourth Amendment rights against unreasonable searches and seizures.

Sonia Suter is a bioethics professor and she’s concerned that people will see only the benefits of familial testing and not the threat to personal privacy.

Professor SONIA SUTER (George Washington University Law School): There’s a lot of kinds of uses of this — of these samples that sound great. They look good on programs like “CSI” but they might involve probing too deeply into very personal information. Could the police decide they want to do broad scale research on these samples, and start investigating the samples for links to certain kinds of illnesses, or certain kinds of propensities for behavior?

Sonia Suter

SEVERSON: Professor Suter says familial testing without safeguards may be only the beginning of a very slippery slope.

Prof. SUTER: I think people might start to feel differently about this if they imagined all of the information that could potentially be obtained. And it will only get easier to do as we identify more genes. It will only be cheaper as the technology advances.

SEVERSON: Constitutional law professor Jeffrey Rosen says the use of familial testing could signal a dramatic challenge to American civil liberties.

Professor JEFFREY ROSEN (George Washington University Law School): There’s a very profound moral lesson. My mother taught it to me actually. She said, “You should be responsible not for what you think but what you do.” And yet that idea is really being challenged by an idea of genetic surveillance that would hold people accountable not for wrong doing but for wrong being.

MITCH MORRISSEY (District Attorney, Denver): There is no privacy right that is being violated by doing familial searching.

SEVERSON: : Mitch Morrissey, the District Attorney of Denver, is a vocal advocate for familial searching. He says it’s just another tool to track down leads, the way police use partial license plates and fingerprints.

Mr. MORRISSEY: The idea that there will be some people that will be talked to that may have nothing to do with this is not unusual when you look at police work.

SEVERSON: Familial testing could help bring many more criminals to justice, says medical geneticist Frederick Bieber, who works with law enforcement on DNA issues. He co-authored a study published in Science magazine.

Frederick Bieber

Dr. FREDERICK BIEBER (Medical Geneticist): ): Based on simulations, our data suggest that it could increase the yield of investigative leads by 40 percent. So it could substantially increase the number of cases that can be resolved through added investigative leads. Why? Because of the sad reality that habits of crime are often found more commonly in family members than in unrelated individuals.

SEVERSON: Statistics indicate crime does run in families: 46 percent of inmates, in one recent survey, said they had a blood relative also in jail. One black man in nine between the ages of 20 and 34, according to a recent Pew estimate, is now behind bars. With databanks getting larger because of familial testing, critics like Stephen Mercer worry that police will be even more likely to target those areas and those minorities whose only guilt is living in the wrong place.

Mr. MERCER: For minority populations who are already disproportionately in the database, you’re approaching a scenario where nearly a majority of some populations — minority based populations — are going to find themselves under genetic surveillance by the government.

Mr. MORRISSEY: Many, many of these crimes are crimes against persons of color – people that live in the same neighborhoods, and I talk to those people, and those people want these crimes solved.

Tony Lake

TONY LAKE (Chief Constable, Lincolnshire Police, England): I do think that the plight of victims is much underplayed.

SEVERSON: Tony Lake is the chief constable of the Lincolnshire police in England. The United Kingdom has used familial matching since 2002.

Mr. LAKE: It is perfectly reasonable and absolutely right that the rights of suspects should be considered and, as it were, maintained as paramount when they aren’t actually under investigation. But so too do the victims have rights. So too do the family of victims have rights. So yes, there are some very, very difficult issues which we’ve got to confront here. But frankly the bottom line is we believe it is a risk worth taking and it is a process well worth doing.

SEVERSON: Police in the UK have resolved murders and rapes and other cases by tracing the perpetrator through a relative’s genetic profile. One case involved a man who had been raping and terrorizing women for 20 years. Known as the “shoe rapist,” police finally discovered who he was when a DNA sample from one of the rapes was a close match to his sister, whose DNA profile was in the data base for a minor infraction.

Mr. LAKE: The way that we operate in the United Kingdom is that unless there is some other substantial evidence the use of DNA on its own will not be run by the Crown Prosecution Service, the equivalent of your state prosecutor. They simply will not entertain running on the basis of DNA evidence alone.

SEVERSON: U.S. authorities say they will also require other supporting evidence. But opponents argue that the FBI has been known to overstep its bounds in other investigations. And even though agents may be held accountable for overzealous prosecution, by then the damage to someone’s reputation has been done.

Ms. WILSON: I have not been in trouble a day in my life. They could come to my family members and even me. It is violating rights of innocent people.

SEVERSON: Pearl no longer needs to worry about her son’s DNA coming back to haunt the family, because Maryland has become the first state to ban familial testing. But several other states, with California in the lead, intend to approve familial searching, and that appears to be the national trend.

For RELIGION & ETHICS NEWSWEEKLY, I’m Lucky Severson.

BOB ABERNETHY, anchor: We have a story today about an ethical dilemma in the care of patients with Alzheimer’s disease. More than five million Americans have that terrible illness, which gets progressively worse and for which there is no cure. After a certain point, should an Alzheimer’s patient be kept alive with a feeding tube? Many family members say, of course: they should do everything possible to prolong a loved one’s life. But some doctors say inserting a feeding tube is inhumane, because it can just prolong a vegetative state for years. All those involved say they want what is best for the patient. But who is right? And who should decide? Betty Rollin reports.

BETTY ROLLIN: Dorothy Gregory, who is 85, has end-stage Alzheimer’s and lives in a nursing home in North Carolina. She stopped eating five years ago, at which point a feeding tube was inserted into her abdomen. That was the decision of her nephew, Bobby Davis, whom she brought up.

(to Bobby Davis): Does she know who you are?

Bobby Davis

BOBBY DAVIS (Nephew of Dorothy Gregory): No, she doesn’t know who I am. She doesn’t know anyone. Mostly she’s like a vegetable almost, you know. She can’t talk. She can’t do anything for herself. She’s on that feeding tube. That’s the only thing keeping her alive.

ROLLIN: Dr. Doug Nelson oversees the care of many Alzheimer’s patients and is greatly troubled by what he sees as the aggressive use of feeding tubes and other measures to keep end-stage Alzheimer’s patients alive.

Dr. DOUG NELSON (Geriatrician, Hickory, NC): You go back to the Bible: Do unto others as you would have done unto you. I would never want somebody to do this to me, because when you look at the patient, they are sitting there. They’re crumpled. They develop bed sores. They get contractures. They can’t move their arms or legs. Their muscles just freeze up, and they are simply laying there existing, waiting for something else to happen that would finally kill them.

In a typical patient with Alzheimer’s, they gradually get worse and worse, and then at some point they stop eating. One of two things happens at that point. Either one, we keep the person comfortable. We continue to try to offer them food or water, or both and they eventually just peacefully pass away. Or sometimes what happens is the family insists on a feeding tube, and we’re forced to put a feeding tube in there, and then they will lay there for months or years.

ROLLIN (to Mr. Davis): If you had to make the decision again, would you have the tube put in?

Mr. DAVIS: Yeah.

ROLLIN: You would?

Dr. Doug Nelson

Mr. DAVIS: Sure.

ROLLIN (to Mr. Davis): Because…? Just to keep her living?

Mr. DAVIS: That’s right. If you believe in God, a miracle might happen. But I just don’t think it’s right, you know, to choose whether a person lives or dies.

Dr. NELSON (with his patient Yula): How are you doing, girl?

ROLLIN: Many family members decide on the feeding tube because they think the alternative is starvation. But Dr. Nelson says that’s not how it is.

Dr. NELSON: The patient will die, but they will die of dehydration, not starvation. When you think about it, that’s how God designed most of us to die. We get some kind of disease. We stop eating and drinking. It’s the lack of water will kill us within a couple of weeks, not the lack of calories.

ROLLIN (to Dr. Nelson): How painful is that?

Dr. NELSON: It is not painful at all.

ROLLIN (to Dr. Nelson): Why, then, do family members choose a feeding tube?

Dr. NELSON: It’s always out of guilt, and we are the only Western country that I know of where it operates like that.

ROLLIN (to Dr. Nelson): Guilt of what sort?

Dr. NELSON: That they’re not doing everything that they could for their loved one.

ROLLIN: Sharon Newell’s mother Barbara Kinley has suffered a series of strokes as well as dementia. After the feeding tube was inserted she got pneumonia, a common complication of the tube.

Sharon Newell

SHARON NEWELL (Daughter of Barbara Kinley): She was in intensive care for 28 days; on a ventilator for 14, and at that point the doctors and nurses and even other family members were like, “You need to turn it off and let her go,” etc., etc. That is just not — wasn’t an option. We are a religious family. My belief is in God and that we are all in his hands.

ROLLIN: Sharon has also seen to it that her mother has what is called “full code,” which means that everything medically possible should be done to keep her alive.

Ms. NEWELL: She would never, ever give up on one of us, regardless, and there’s just no way we could ever give up on her and not give her every benefit she deserves.

ROLLIN: Because her mother is on Medicaid, as most of these patients are, Sharon does not pay for these benefits. The average cost of a semi-private room in a nursing home is more than $72,000 a year plus the cost of whatever medical interventions are used. The insertion of a feeding tube is only a few thousand dollars, but the main cost is the result of the feeding tube which can prolong a patient’s life sometimes for years. Dr. Nelson is one of the few doctors who tries to convince families how bad a decision feeding tubes can be. But doctors are not paid to do that.

Dr. NELSON: And so from a money issue, most doctors that do nursing home work find it hard to take the time out to do it for free and talk with the families. So if the families say, “I want a feeding tube,” many times it’s a knee-jerk reaction: “OK, fine. We’ll do a feeding tube.”

ROLLIN: And not to comply with the families’ wishes is to risk being sued.

Dr. NELSON: If the family says, “I want a feeding tube in,” you have to put one in. All our malpractice insurance companies tell us if they do that, you put it in because if you don’t, patient dies, you go to court, you’ll lose in court.

ROLLIN: What bothers Dr. Nelson most of all about this situation is his conscience.

Nicole Lewis

Dr. NELSON: I question myself: “Am I sinning by continuing to have this feeding tube?” When you look at the chart, the doctor’s name that signs the order for the feeding tube is Doug Nelson. And I always wonder what will happen when I get to heaven and I’m confronted by God: “Why did you keep signing your name to that if you thought it was wrong?”

NICOLE LEWIS (RN): I’m just listening to your chest this morning.

ROLLIN: Nicole Lewis is a nurse who works with Dr. Nelson.

Ms. LEWIS: Once a tube feeding is put in, the decision’s much, much harder for a family member, say complications do arise, to make that decision to take it back out, and a lot of times that is what happens. Whereas if the decision may have been even thought through a little bit more, they had been educated a little more about what kind of complications could arise, they may not have made the decision to put the tube feeding in to begin with.

Ms. LEWIS: We will be back in a little while. OK?

ROLLIN: One way to fix this situation is for Alzheimer’s patients to have both a living will and a health care power of attorney, which protects you from treatment at the end of life you may not want.

Mr. DAVIS (talking to Ms. Gregory): Wake up. Look at me. Wake up! It’s Bobby talking to you. Wake up!

ROLLIN: For RELIGION & ETHICS NEWSWEEKLY, I’m Betty Rollin in Gastonia, North Carolina.

ABERNETHY: The ethical arguments also surround removing a feeding tube once it’s in.  The Vatican, among others, says removal is immoral.

PAMELA FERDIN (Animal Rights Activist): Excuse me, can I give you a leaflet about the torture and murder of primates going inside the laboratories of UCLA?

SAUL GONZALEZ: On a recent afternoon, a group of activists gathered outside the University of California Los Angeles (UCLA) to protest the use of animals in laboratory research at the school.

Ms. FERDIN: It’s immoral. It’s unethical and evil to take non-consenting animals and, against their will, do these horrific things.

GONZALEZ: These demonstrators are peaceful, but in the last few years more militant animal rights activists have waged a campaign of harassment and intimidation against UCLA scientists involved in animal experimentation, such as using primates to investigate methamphetamine and nicotine addiction. The activists’ tactics have ranged from publishing researchers’ home addresses on Web sites to leaving threatening telephone messages.

VOICE OF UNIDENTIFIED MAN: Quit working on animals. Quit torturing and abusing animals. We can cause more economic damage in one night than you can earn in a year.

GONZALEZ: UCLA faculty members even have had pipe bombs planted at their homes. These episodes have created a climate of fear among researchers on campus.

John Hueston

JOHN HUESTON (Attorney, UCLA): The point of boiling really began happening when people realized that they couldn’t live in their homes any longer and that they began having to check under their cars for bombs — that they could not leave their kids home alone at night for fear people would show up, pound on the doors, break things, maybe enter the house.

GONZALEZ: Federal law enforcement authorities say such incidents are on the rise nationally and reflect some activists’ increased willingness to use more extreme methods in their struggle to fight animal experimentation. UCLA, which declined our requests to shoot its research facilities, has successfully fought for a restraining order prohibiting animal rights activists from harassing researchers.

Nationally, a larger debate continues over the morality of using animals in laboratory experimentation, like these scenes captured by activists’ hidden cameras. Although exact numbers don’t exist, it’s believed millions of animals, from primates to pigs to rats, are used as test subjects in more than 1,000 laboratories in the United States.

Central to the controversy over the use of animals in scientific and medical research is this question: When, if ever, should the pain and discomfort inflicted on animals in laboratory experimentation outweigh the possible benefits the research might create for human beings?

Dr. JOHN YOUNG (Director, Comparative Medicine, Cedars-Sinai Medical Center, Los Angeles and Chairman, Americans for Medical Progress): The use of animals is a vital cornerstone to medical progress. and I would submit to you that if you would abolish the use of animals in medical research today, medical progress would slow, stop, and reverse.

GONZALEZ: Doctor John Young is director of comparative medicine at Los Angeles Cedars-Sinai Medical Center and chairman of Americans for Medical Progress, a pro-animal testing group. He says animal experimentation is vital to finding treatments for such illnesses as cancer, AIDS, Alzheimer’s, and heart disease in human beings.

Cedars-Sinai and Doctor Young gave us unusual access to facilities in the hospital where animals used in medical and scientific research are kept, such as these pigs used to test human heart implant devices.

Dr. YOUNG: The cardiovascular system of a pig is almost identical to that of a human being, okay. The coronary arteries, the heart muscle — virtually identical, so pigs are a favorite model for cardiovascular disease.

GONZALEZ: The human ramifications of this research would be what?

Dr. YOUNG: Improved care of cardiac patients.

GONZALEZ: But many animal rights groups say such research ignores the rights and interests of the test subjects.

UNIDENTIFIED WOMAN: It is my pleasure to introduce Professor Peter Singer.

GONZALEZ: Ethicist and writer Peter Singer is one of the founders of the modern animal rights movement. He believes that in the Western world religion has played a partial but key role in justifying humans’ exploitation of animals, including in scientific research.

Professor Peter Singer

Dr. PETER SINGER (Ira W. DeCamp Professor of Bioethics, Center for Human Values, Princeton University): This idea that so much of our ethics flows out of that Judeo-Christian tradition which, of course, separates us from animals, puts this gulf between us, tells us that we alone were made in the image of God and they are not, that we have an immortal soul and they don’t. So it puts a sharp division between us, which, if we understand evolutionary theory correctly, there isn’t really that sharp division.

GONZALEZ: Although Singer says he supports very limited animal research that could lead to medical breakthroughs, he believes scientists and doctors too often conduct experiments that are unnecessary and ignore the distress inflicted on animals.

Dr. SINGER: Why is it that being a member of our species is morally important, is morally significant, whereas being a fellow sentient being, a fellow animal, if you like, why is that not important? And if it’s useful or beneficial or useful to us in some way to do something that might cause pain and suffering to the animal, that’s okay because they’re not members of our species? And I refer to this as “speciesism.” I think it is a parallel phenomenon, in some ways, to racism or sexism in just saying, “Well, we are the dominant group. We are the ones that matter and those outside beyond this boundary of our species just really don’t matter.”

Dr. YOUNG (showing off cancer mice in cages): So if you look under the skin of this mouse right here, that’s human prostate cancer.

GONZALEZ: Dr. Young says that researchers involved in animal experimentation take all possible precautions to reduce pain and suffering in their test subjects.

Dr. YOUNG: We watch these animals very, very closely, and when they begin to exhibit clinical signs indicating that the cancer is adversely affecting their health, we put them to sleep.

GONZALEZ: However, Doctor Young does argue that the benefits animal research creates for human beings should always be of paramount importance.

Dr. John Young

Dr. YOUNG: People will ask me, how can you possibly do what you do? I can answer that question very easily. I walk them over to the pediatric cancer ward and show them children with bald heads with glioblastoma, brave children who will tell you, “I am terminal.” We are curing rats with the same disease at a 70 percent cure rate. I am excited about that. It would be immoral, in my opinion, not to have done what we’ve done in the rats.

GONZALEZ: But federal research institutions, such as the National Institutes of Health, have pledged to reduce the number of animals in laboratory testing. They’re exploring alternative research methods, such as experimenting on human cell cultures and using computer simulations to test treatments. But Peter Singer says efforts to remove animals from experimentation have been too slow and half-hearted in the scientific community.

Dr. SINGER: I think the whole institution is set up at the moment with a bias towards experimenting on animals and using them as subjects, because that’s what we have done for decades now.

GONZALEZ: As the controversy over animal research continues, so too does the debate over how human beings should balance their self-interest with their concern for the health and welfare of other living creatures.

For RELIGION & ETHICS NEWSWEEKLY, I’m Saul Gonzalez in Los Angeles.

BOB FAW: As a surgeon, he was brilliant and beloved. But as his daughter watched in horror, Alzheimer’s robbed Jerome Donald Davis of his faculties and very identity.

SUSAN DAVIS: It’s a terrible thing to witness. It’s unspeakable, and the people who love you are in unbelievable pain, and it’s a terrible loss of dignity, and it’s protracted, and nobody can help. Medicine can’t help, and science can’t help.

FAW: Eva Finelle’s mother, her best friend, now with Alzheimer’s, doesn’t even recognize her daughter.

EVA FINNELLE: She’s been the most wonderful person in my whole life. I’m living in a situation where I’m mourning somebody who’s still alive, and it’s an ongoing, everyday sadness that never goes away. I miss my mother, and she’s still here.

Eva Finelle

FAW: The children of parents with Alzheimer’s live in mourning for them and in dread for themselves any time even the simplest act is botched or memory fails

Ms. FINNELLE: Every time those things happen to me, I wonder — is this — this is about the age my mother started showing signs of different things going wrong.

Ms. DAVIS: It’s in the back of my mind when I’m standing, like everybody, in my kitchen thinking to myself, “Why did I come in this room?” I know that happens to everybody, but it chills me when it happens to me.

FAW: The fear is understandable since Alzheimer’s often runs in families.

UNIDENTIFIED WOMAN #1 (to Unidentified Woman #2): And what day of the week is today?

UNIDENTIFIED WOMAN #2: I’ll guess.

UNIDENTIFIED WOMAN #1: That’s fine.

Susan Davis

FAW: Five million Americans are afflicted by the disease for which there is no treatment and no cure. As Dr. James Burke of Duke University points out, its effects on the brain are devastating.

Dr. JAMES BURKE (Director of the Clinical CORE, Bryan Alzheimer’s Disease Research Center, Duke University Medical Center): So this is a normal brain. It weighs over two pounds. And this is an Alzheimer’s brain that’s lost probably about 50 percent of the total brain weight.

FAW: Now a promising blood test is being refined, which in time could accurately predict even years before symptoms occur who will develop Alzheimer’s. It’s a breakthrough which ethicist Nancy Kader says could be liberating.

NANCY KADER (Center for the Study of Ethics): I think the patient kind of has a personal responsibility to learn these kinds of things so that they can prepare themselves and prepare their loved ones.

FAW (to Ms. Kader): So if I don’t take the test, then in some way I’m shortchanging my family?

Dr. James Burke

Ms. KADER: Absolutely. I think that it’s a little bit shortsighted to just think of it in terms of myself — what do I want to know about myself versus what do the others around me need to know in order to help me make the right choices?

FAW: Indeed, for some, like Eva Finelle, the decision to take such a test is easy.

Nancy Kader

Ms. FINNELLE: I want to know. I want to know. I don’t want my family, my children to go through what I’ve gone though. It would give me preparation time to do what I want to do, to say what I want to say, to get my affairs in order, so to speak, for when I can’t think for myself.

FAW: For others, though, like Susan Davis, almost as old now as her father was when he started showing signs of the disease, the prospect of such a test is agonizing.

Ms. DAVIS: Hit the music…

FAW: Now a successful producer at North Carolina Public Radio and the mother of two, Susan Davis says that learning she might develop Alzheimer’s would not be a source of comfort but alarm.

Ms. DAVIS: I could find this out, and it really means nothing. It means nothing until they know what it means or until they can do something.

FAW (to Ms. Davis): Knowing that you might get it — it wouldn’t be helpful?

Ms. DAVIS: You know what this would do? This might drive me crazy.

FAW: Most of all, says Davis, if she learned she’ll develop Alzheimer’s that would be a cruel ethical dilemma: wait for the disease or take her life?

Susan Davis’s parents

Ms. DAVIS: What’s worse for my kids? To watch me deteriorate or to try and understand that I took myself from them before I deteriorated? I mean, it’s two lousy options. Who knows which of these traumas is better to overcome: your mother killing herself or your mother dying this excruciating death?

FAW: The moral quandary facing Davis and how others might respond when confronted with the same kind of news troubles doctors like James Burke.

Dr. BURKE: The downside to symptomatic or early symptomatic testing is that there is no intervention that we can do at this time. Taking away people’s hope is not something to be done lightly.

FAW: And, says Burke, since some patients cannot handle the emotional burden those test results might reveal …

Dr. BURKE: I would not perform the test, because I wouldn’t feel confident about what you do with the results.

FAW: And with more tests predicting more diseases, questions are raised about how test results will be used. This man has not been tested for Alzheimer’s, but when his insurance company learned several of his relatives have the disease …

JOHN: We were denied because of Alzheimer’s in the family.

FAW (to Unidentified Man): They told you, point blank?

JOHN: Yes. Yes.

FAW: And even the prospect that he might develop Alzheimer’s has already cost him dearly.

JOHN: The few friends that I’ve told in the past are no longer friends, you know, because they — I had one put it to me as, you know, why would we want to get attached to somebody that’s not going to be here, you know?

A human brain

FAW: It’s an ethical minefield, then, which will continue to explode. By the year 2050, the number of Americans with Alzheimer’s is expected to triple — so many afflicted some say we now need to redefine our entire approach to the disease.

Ms. KADER: It’s something that we’re all going to face at some point. If we don’t have Alzheimer’s we may still — there are other reasons we may begin to lose some of our faculties as we age, and so I think we need to look at it as the whole spectrum of life.

Dr. BURKE: Maybe we’re expecting too much of the brain. We don’t expect the heart to function the way it did when you were 20. We don’t expect the liver and the kidneys to function. And so I think that we should expect some age-related changes. But because the brain so much determines who we are, it really places questions on our personhood.

FAW: Sometimes even defining “personhood.”

JOHN: I live with it everyday, think about it everyday.

FAW (to John): How frightened are you?

JOHN: A scale of one to 10? Nine-and-a-half.

FAW (to John): The odds are against you?

JOHN: Extremely.

JOHN’S WIFE: I’m just praying that it doesn’t happen, that it’s not going to occur.

FAW (to John’s Wife): And if the test shows that it did?

JOHN’S WIFE: Then everything would change.

FAW: Just as a new diagnostic tool, charting what can happen to the brain heralds another kind of change: knowledge, bringing relief to some and to others, fear.

For RELIGION & ETHICS NEWSWEEKLY, I’m Bob Faw in Durham, North Carolina.

BOB ABERNETHY, anchor: Parents want to give their children every advantage in life—music lessons, tutoring, sports camps. They also want to do whatever is possible to make their children healthy. But what about going beyond opportunities and health to enhancement, making kids bigger or smarter or more talented? Science is opening that door in a big way, and many ethicists debate where the line between health and enhancement should be. Kim Lawton has our story.

KIM LAWTON: Twelve-year-old Mitchell Greenwood has a nightly ritual. Before he goes to bed, he gives himself a shot of human growth hormone. Mitchell is healthy, but at 4′1″ he’s below the normal height for his age.

MITCHELL GREENWOOD: I’m just hoping that I get those couple of inches that I really wanted, that I’m taking it for.

LAWTON: Do some of the kids make fun of you? Are kids mean?

MITCHELL: Yeah. Well, like, some of my friends, they’re just like, “Ha, ha, shorty.” And I know they they’re just joking. But then there are also some people that do it to be mean.

LAWTON: Mitchell is genetically predisposed to be short. His mom, Lisa, is 5′3″ and Doug, his dad, is 5′4″. Their doctor projected that Mitchell may not get any taller than 5′1″ and he suggested human growth hormone might help add two or three more inches to that. They decided to try it.

LISA GREENWOOD: For Mitch, there have already been things in his life that he’s wanted to do that he’s been unable to do because he’s too small. I think that parents will always choose the things that will help their kids grow to be happier, more productive adults.

DOUG GREENWOOD: Some with reason and some without reason, you know. I think this has been a reasonable choice that we’ve made.

LAWTON: But as biotechnology advances, some ethicists are raising moral concerns about the extent to which parents may try to make even more radical alterations.

Harvard Professor Michael Sandel is a member of the President’s Council on Bioethics and author of the new book THE CASE AGAINST PERFECTION. He warns of a slippery slope in the drive toward enhancement.

Michael Sandel

Professor MICHAEL SANDEL (Department of Government, Harvard University): Aiming at giving our kids a competitive edge in a consumer society—that, in principle, is a goal that is limitless. It has—there is no end. In fact, one can imagine a kind of hormonal arms race, or genetic arms race, whether it’s to do with height or IQ, conceivably, in the future.

LAWTON: Scientists have mapped human DNA, making it possible to know what genes are responsible for particular illnesses. Clinical trials are now underway to find new treatments for genetically-based diseases. But what if this newfound genetic knowledge is used not only to cure, but also to enhance physical and mental capabilities and to enable parents to select the traits of their children? In 2003, the FDA approved the use of human growth hormone for healthy children who have no defined cause for their short stature.

Dr. PAUL KAPLOWITZ (Pediatric Endocrinologist, Children’s National Medical Center): The decision was controversial because there were a lot of people who felt that this was cosmetic treatment—like why take a normal child and put them on a medication that their body is probably making some of anyway just in order to make them grow taller?

LAWTON: Paul Kaplowitz is the pediatric endocrinologist treating Mitchell Greenwood. Although some of his colleagues treat normal height children who want to be taller, Kaplowitz says he would not.

Dr. KAPLOWITZ: If I see those children I simply say, “You know, this is not an appropriate use of growth hormone. Your child may be shorter than you would like, but they’re fine. They will reach a normal height.” And furthermore, I tell them that, you know, if we insist on treating them, we are sending them the message that there is something wrong with them. They are not okay the way they are.

LAWTON: Sandel says he does support the use of new biotechnologies to cure illness.

Prof. SANDEL: My argument is not that we must never intervene in nature. My argument is that there is a moral difference between intervention for the sake of health to cure or prevent disease, and intervention for the sake of achieving a competitive edge for our kids.

Gregory Stock

LAWTON: But according to UCLA professor Gregory Stock, author of the book REDESIGNING HUMANS, the line between therapy and enhancement is never clear-cut.

Professor GREGORY STOCK (Department of Psychiatry and Biobehavior, UCLA): Any time there is a reduction in some disease process, in some affliction which we can all support, the possibility exists of other enhancements, and I see this as a very robust development. I don’t see that we’re moving toward some sort of a cliff.

LAWTON: Few people think twice about getting their kids braces, but what about genetic help to boost their memory? Stock’s company, Signum Biosciences, is researching therapies for Alzheimer’s patients. He’s not concerned that parents might also use that therapy to help their children do better in school.

Prof. STOCK: If we could enhance our memories, to me that superficially seems desirable. It’s not clear that it would be of as much value as we want, or that it’s as necessary since we have all sorts of electronic devices that are essentially memory enhancers.

LAWTON: Technologies are also moving forward that may one day allow parents to pre-select various traits, including personality or temperament. In Scarsdale, New York, Dr. Andrew Silverman is already helping parents choose the gender of their children. Most couples come to him for family balancing. Silverman is Jewish and says he initially did have ethical concerns, until he consulted with a rabbi.

Dr. ANDREW SILVERMAN (The Silverman Center for Gender Selection): He says he doesn’t see a problem. He said, “You are helping couples procreate. You’re not destroying life, you are creating life. You are a partner with God. Go ahead.”

LAWTON: Still, Silverman says he would draw a moral line at helping parents pick other qualities, such as personality.

Andrew Silverman

Dr. SILVERMAN: I’m sure there’ll be other professionals who will. If it’s available and it’s not illegal, people will offer it. You know, the greatest joy and mystery of life is seeing how your kids turn out, because they are in the same home environment. They have relatively the same genetic spread, assuming it’s the same marriage. Then how they turn out is the wonderment of life.

LAWTON: Professor Sandel opposes sex selection because he believes it changes the parent-child relationship.

Prof. SANDEL: The norm of unconditional parental love, I think, depends on the fact that we don’t pick and choose the traits of our children in the way that we pick and choose the features of a car we might order.

Prof. STOCK: Is it the child that is being damaged by being the gender of choice of that parent? I don’t think so. Who is being injured if parents have a predilection for certain types of personality and temperament, if they would be more comfortable or think they really would prefer to have a child who’s a little more outgoing, or who’s more introverted, or who is a little brighter?

LAWTON: Stock believes there is a moral responsibility to push forward with research, trusting that human beings have a great capacity for adapting to technology.

Prof. STOCK: So, you know, where is this going to lead us? We don’t really know. And to sort of be engaged in this process, which is changing the world around us, which is, you know, changing ourselves, which is life beginning to get control of its own processes and to act upon that information, and to me it’s awe-inspiring.

LAWTON: Such power is precisely what worries Sandel.

Prof. SANDEL: In most of our lives, we are accustomed to aiming at mastery and control and dominion—over Nature, over our lives, over our jobs, over our careers, over the goods that we buy. But parenthood is a school for humility.

LAWTON: And there are larger social questions, such as cost.

Dr. KAPLOWITZ: A course of growth hormone to add an extra couple of inches could easily get close to $100,000, and the question is who is paying for this? Well, in most situations the insurance companies are paying for this.

LAWTON: Some worry about the creation of two very separate classes of people: those who can afford genetic enhancements and those who cannot.

Prof. SANDEL: It will only deepen the gap between rich and poor and possibly inscribe that gap in our biology.

LAWTON: Already, many parents compete to give their children every possible advantage. There are tutoring and private coaching lessons. Would they consider genetic enhancements as well?

WENDY: If there was a drug or something that people had, and it was like they could prove that it wasn’t harmful, I don’t know how people would react. I mean, we can all say we wouldn’t do those things, but it’s hard to say.

GREG: If you found out there was possibilities you haven’t thought of, and the research was done to make it safe, but then you might end up with the Bionic Man or Wonder Woman or something like that. I don’t think that would be right.

MARA: I just think that you don’t play God.

LAWTON: For Doug and Lisa Greenwood, it came down to doing what they thought was physically and emotionally best for Mitchell.

Ms. GREENWOOD: I think it’s easy to have this debate when it is just a debate that you’re having. But when you are faced with, well, your child could be 5′1″ or maybe he will be 5′5″ or 5′6″ you are going to choose 5′5″ or 5′6″.

Mr. GREENWOOD: You want to give your kids the very, very best so they can have opportunities that you haven’t had in education. And growth is certainly one of them—and health.

LAWTON: With new technological breakthroughs, those decisions will only get more complicated in the years to come, and society will have to grapple with what should be allowed. I’m Kim Lawton reporting.

Q: Why did you write THE CASE AGAINST PERFECTION?

A: I initially became interested in the subject through my service on the President’s Council on Bioethics. One of the topics we dealt with was the question of enhancement and genetic engineering for enhancement, and I became fascinated by the topic there and began teaching a course that dealt with these issues and wrote what initially was an article in The Atlantic. Both got into this book. What intrigued me most about it was not the technology as such but the questions about the human goods, the fundamental human values and virtues that are raised by debates over biotechnology. What struck me as especially interesting was that our usual way of talking about ethics, bioethics, moral philosophy didn’t seem to capture fully what’s at stake in the debate over genetic engineering. We usually debate costs and benefits, autonomy and rights. But that moral vocabulary doesn’t really seem to capture what’s at stake in this whole question of genetic engineering and eugenics. That, I think, is really what intrigued me most: If not autonomy and rights and utility, then what? That was why it was a philosophical challenge.

Q: What is at stake? You say these questions are almost theological.

A: Yes. Really to grapple with the ethics of enhancement requires us, I think, to confront questions that have been crowded from view in the modern world, certainly within modern philosophy. It raises fundamental questions that really do verge on theological questions: What is the proper stance of human beings toward the given world? What is the proper stance toward nature? Are there certain limits to the project of human mastery and dominion? Those are questions in moral philosophy, but they are also questions of theology and of religion.

Q: Have the teachings of faith traditions addressed these issues—whether man should aim for perfection?

A: Yes, different religious traditions give different broad perspectives on this question. Some sanctify nature as inscribed with inherent meaning. Others see the moral importance of nature as flowing from the fact of God’s creation. And there are some religious traditions that view human beings as participants in creation. This is true of the Jewish tradition, from which I come. On the one hand, human beings are empowered to exercise dominion over nature and even to be participants in creation; and yet, at the same time, there are strictures against idolatry, which is a kind of overreaching and confusing human beings’ role with God’s. So the tension between these two impulses-—to participate in creation and yet not to overreach-—that, I think, is at the crux of some of the most interesting theological aspects of this debate.

Q: Where do you draw the line between trying to heal and trying to enhance?

A: I draw the line with health, with medical purposes. So I think it is one thing to try to restore normal human functioning—that would be health, that would be medicine, that would be curing or repairing. I think it’s something else to try to use biotechnology to enhance, to try to lift people above the norm, let’s say, of intelligence, or of height, or of musical ability, or to try to pick and choose the genetic traits of our children, to aim at designer children, to choose the sex of our children for purely non-medical reasons. These are really exercises in a kind of consumerist ethic that I think don’t have the same moral weight as medicine or health.

Q: But as a parent don’t you want the best for your children?

A: What I really want for my children is that they be loved and that they be happy and that they lead a good life. I suppose you could say that those goals could be captured in the idea of wanting the best for my children. But very often when we aim at the best, or what we may think is the best for our children, we aim really at lesser things, such as getting into a certain college. Never mind college, some parents expend great efforts to get their kids into the right nursery school or the right preschool, with the thought that that will set them on the path to success, to competitive success especially. So I think very often when we think we are aiming at the best for our children, what we are really doing is trying to position them for competitive success in an intensely driven kind of society. I’m not sure that always leads to the good life or to happiness.

Q: You have said maybe we should change the driven climate of the culture, and perhaps this quest for perfection really undermines the sacredness of the child-parent relationship.

A: I think part of being a parent, to love one’s child, is to accept them as they come—not to see them as instruments of our ambition or as creatures to be molded, as if they were themselves commodities. I think too often in our society parents, who may have good impulses, overreach and try to mold and shape and direct their child. That’s the phenomenon of hyper-parenting. I think people who want to use genetic technologies to gain a competitive edge for their children are engaging in a kind of overreaching that could really undermine our appreciation of children as gifts for which we should be grateful and, instead, to view them as products or instruments that are there to be molded and directed.

Q: You talk about gifts. Is that a religious argument?

A: Yes and no. It’s true that to speak of an ethic of giftedness, which is very much the ethic that I deploy in raising questions about designer children and genetic engineering—an appreciation of the giftedness of the child or the giftedness of life does have religious resonance, because a great many religious traditions emphasize the sense in which the good things in life are not all our own doing; they are gifts from God. So that is one source of an ethic of giftedness, a religious source—the idea of God as giver of gifts. But what I argue in the book is that that is one important source for the ethic of giftedness but not the only source. It’s possible to make sense of what’s morally at stake in an appreciation of the gift of life, or the gift of a child, without necessarily presupposing that there is a giver. What matters is that the gift—in this case, the child—not be wholly our own doing, our own product. So I think there is a religious source, but I want to make room for religious discourse in arguments about bioethics and also for an ethical appreciation of these ideals and values by those who may not come from a religious tradition.

One of the ways in which parenting is a learning experience and an opportunity for moral growth is that we learn as parents that we don’t choose the kind of child that we have. In most of our lives, we are accustomed to aiming at mastery and control and dominion-—over nature, over our lives, over our jobs, over our careers, over the goods that we buy. But parenthood is a school for humility. We can’t choose the precise traits of our children, and that is morally important. It teaches us what William May, a theologian whom I greatly admire, calls “an openness to the unbidden.” I think this quality, as a trait of character, as a moral disposition—an openness to the unbidden—teaches us to rein in the impulse to mastery and control that we experience in so many other parts of our lives.

Q: What technologies really concern you, like non-medical sex selection? Say a family has five girls and wants a son. What would you ban or not ban and why?

A: My emphasis in the book is not on banning or regulating. I am trying to get at the moral arguments and the ethical status of various attempts at enhancement, or genetic engineering, or the bid for designer children. But there are implications for society at large. I would include non-medical sex selection as one of those practices that I think is morally questionable and that can carry adverse social consequences. We see, in some parts of the world, that sex selection for boys—and it’s usually for boys—reflects sex discrimination against girls, and it leads to very large imbalances—in China, in Korea, in India—in the population between boys and girls, a vast disproportion of boys to girls, and it reflects really this discriminatory attitude toward girls. So that’s one social consequence. But another consequence is really to our culture, to our moral landscape. The norm of unconditional parental love, I think, depends on the fact that we don’t pick and choose the traits of our children in the way that we pick and choose the features of a car we might order, or a consumer good. If we go too far down the road of choosing the genetic traits of children, my worry is that parenting will be less a kind of school for humility than it should be, and we will become too accustomed to regarding children as instruments of our ambition and of our desires.

Q: What would a “perfect” society look like if parents did pick the traits of their children?

A: By a perfect society you mean a dystopian society?

Q: Yes.

A: I think [there are] two kinds of risks. One has to do with the life of the children who would not only feel molded and made and packaged almost as commodities by their parents, but might feel the intense pressures that go with that, because if parents are aiming at choosing children who will be good athletes, or great musicians, or who will get into Ivy League schools, or who will be tall enough to make the basketball team, then there is a danger that the life of the child will bear the burden of that expectation; and the risk of disappointment and the cost of disappointment will be even higher than they are now, and even now they can be considerable. So that’s one, the effect on the child. The other effect that I worry about is the effect on the parent, that the moral teaching of humility and of the limits to our control that parenthood teaches-—that that will be lost and that we will begin to think of children more as consumer goods than as gifts that we can’t fully control and for which we aren’t fully responsible.

Q: You see troubling comparisons with the eugenics movement.

A: I do think there is a similarity between the dark history of eugenics and present attempts to pick and choose the genetic traits of children. There is one very important difference. Traditionally, eugenics was state-sponsored and coercive. They were collectivist, and so there was the dark history of forced sterilization. The majority of American states had laws by the 1930s that allowed for forced sterilization of socially undesirable categories of people, so-called feeble-minded, for example, and with Hitler culminating in genocide. So the real question is: If you remove the coercion and you make it an individual choice, is eugenics still objectionable? I would say that it is. What we have today is a kind of privatized or free-market eugenics. It’s not an attempt to try to improve entire societies or to increase humanity’s germ plasm, as the old eugenicists said. It’s an attempt, usually by affluent parents, to give their kids an edge in a highly competitive society. But it does carry the idea, which comes from the eugenic past, that it is for this generation to pick and choose the genetic traits of the next generation.

Q: And it’s only for those who can afford it.

A: In the privatized version, it’s only for those who can afford it. So a further objection now to eugenics is that it will only deepen the gap between rich and poor, and possibly inscribe that gap in our biology. That is also a troubling prospect.

Q: Should faith communities speak out? If it is just left up to the marketplace, will that determine who can afford the technology? Should there be more discussion, and should religious groups get involved?

A: Yes, I do think this is an issue that faith groups should become involved in, because it does raise questions about the proper stance of human beings toward the given world. It involves the tension between the aspiration to human mastery, control, and dominion over nature, over children, over future generations-—the tension between mastery and dominion, on the one hand, and reverence, or respect, or restraint, or humility, on the other. And most religious traditions speak to this deep human tension between mastery and restraint, between dominion and humility. I think that’s the kind of moral vocabulary we need to make sense of the challenge posed by new genetic technologies. Unless faith communities participate in public debate about these questions, that part of the moral vocabulary will not find full expression.

Q: What is morally owed to those who suffer from disease or disability if not healing or trying to make them more perfect, healthier? Is there a higher good than relief of suffering?

A: The relief of suffering is a great good. The curing of illness and disease—these are great human goods. This is the mission of medicine. I do not argue that nature is sacrosanct in the sense that we must never tamper with nature. That would disempower, really, all of medicine. That would mean that we can’t combat dread diseases—malaria, polio, all of which are given by nature, if one thinks about it. So my argument is not that we must never intervene in nature. My argument is that there is a moral difference between intervention for the sake of health, to cure or prevent disease, and intervention for the sake of achieving a competitive edge for our kids in a consumer society. I think morally those two ambitions have a very different status. One of the differences is that aiming at health, restoring health—that is a goal that is both morally important and limited, because it aims at the restoration of normal human functioning, which is an important part of human flourishing. But aiming at giving our kids a competitive edge in a consumer society—that, in principle, is a goal that is limitless. There is no end. In fact, one can imagine a kind of hormonal arms race or genetic arms race, whether it’s to do with height or IQ, conceivably, in the future. So it’s limitless, and that’s another of the features that sets it apart from medical intervention. It really puts biotechnology in the service not only of health but of consumerism, really, and the drive for better consumer goods than one’s neighbor has, or than one had last year. This is a kind of limitless spiral, and even from the standpoint of resources I think it would be a great tragedy to devote medical resources and genetic technological breakthroughs to purposes that are not to do with health or medicine, but instead are to do with satisfying the desires that are created by the consumer society.

Q: You mentioned the Presidents Bioethics Council, and stem cell research has been a huge subject there. What needs to be done about stem cell research? What are the moral arguments?

A: In my criticism of genetic engineering for enhancement I am more in line with what my colleagues on the council thought than in my views on embryonic stem cell research. I’m a supporter of embryonic stem cell research. I do think there are very important moral and also religious questions at stake in the debate over embryonic stem cell research. The most fundamental question is: What is the moral status of the early embryo or blastocyst, which is destroyed in the course of stem cell research? And so those who view the blastocyst, the very early unimplanted embryo-—we are not, of course, talking about a fetus, but an unimplanted embryo in a lab-—there are some who believe that blastocyst has a moral status equal to that of a baby or of a fully developed human being, and if they’re right about that then embryonic stem cell research should not be permitted. I don’t think they are right about it, but in the book I try to take seriously their arguments and to address them. I think it’s important, where moral arguments do inform political views, to welcome those religious arguments into the public sphere; not to exclude them and say no, no, no, that has no place; to welcome them but also to engage with those views, to test them, to argue with them, and in some cases to learn from them. So my argument about stem cell research in the book defends it, but only after taking seriously the religious objections that people raise based on the moral status of the embryo.

Q: Defend it based on what?

A: Mainly the way I try to go about engaging with the debate about the moral status of the embryo is to try to lay out what I take to be the strongest possible arguments in favor of regarding the blastocyst as morally equivalent to a baby and then seeing whether those arguments can be sustained, whether they are adequate arguments. So I think that it’s important not to—just as faith-based arguments should not be kept out of the public arena, neither should they be exempt from critical scrutiny and rigorous philosophical argument.

Q: What is your reasoning to support the view that embryonic stem cell research is moral?

A: The main way of arguing is to see whether those who object to embryonic stem cell research on the grounds that the blastocyst is morally equivalent to a person—whether they are prepared to pursue the full moral logic of that position. And if they were, then you would not only restrict, as President Bush has, federal funding of embryonic stem cell research; you would ban all embryonic stem cell research. Right now, the Bush position is that it shouldn’t enjoy federal funding, for the most part, but it should be permitted in the private sector. If it were truly infanticide, if destroying that embryo were really morally equivalent to infanticide, you wouldn’t say we should deny federal funding to this infanticide but we should allow it to continue in the private sector. Take the example of yanking organs from babies to save other people’s lives. You wouldn’t permit that. Not only that; you would not permit fertility clinics to create and discard excess embryos if you really regarded those excess embryos as siblings of the children who were implanted and created. You wouldn’t say, well, we’ll ban embryonic stem cell research or deny it federal funding, but we’ll let fertility clinics create and discard thousands upon thousands of frozen embryos. You wouldn’t permit it, and yet many of the people who want to restrict embryonic stem cell research are not raising their voices to shut down fertility clinics that create and discard excess embryos. So it’s a test of consistency, mainly. Now some are consistent and would shut down fertility clinics that create and discard excess embryos. There is a further test for them, which is: In natural pregnancy, more than half of fertilized eggs fail to implant or are otherwise lost. Should we regard that as an instance of infant mortality? And if so, why are we not mounting ambitious public health campaigns to try to save and rescue all of the fertilized eggs that are lost in natural pregnancy? We would need a public health campaign of massive proportions if there really were over a fifty percent rate of infant mortality. And what about the religious traditions that consider those lost embryos as infant deaths? Do they mandate the same burial rites for lost embryos as for babies who die just after birth, and if not, why not? So it’s a test. And this is not to parody the religious position; it’s to take it seriously and to explore its moral logic and to see whether that moral logic is carried out fully by those who profess to hold the position in the specific case of embryonic stem cell research, but not in all of these others.

Q: Does Jewish teaching about the importance of doing everything to save a life influence your thinking on this and other bioethical topics?

A: I have a broad but not an expert or scholarly background in the Jewish tradition. I’ve tried to learn what I can from childhood, but I am not an expert on Jewish teachings in this area. It is true that the Jewish tradition emphasizes the moral mandate to save life. It also has a different position from the Catholic Church on the moral status of the embryo. It has a more developmental view of when human life, in the sense of personhood, begins than does the Catholic Church. And so that may have influenced me, but I think I’ve also been influenced by arguing through these questions with colleagues on the President’s Council on Bioethics, with students, and with others, some from religious backgrounds, others not. I do think it is very important that the religious communities do try to bring their teachings and their insights to bear on the stem cell debate and on the debate about genetic engineering.

Q: What kind of research are you doing?

A: Here at Signum we are trying to do some things that are very interesting, in that the opening up of human biology and of biology and of life in general and understanding how it works at the most intimate of levels allows the possibility of going in and creating new kinds of therapeutics that are really designed, in some sense, but it also allows us to revisit the products of literally thousands of years of experimentation with herbal medicine, with various kinds of botanicals, and to understand the components of those and the agents therein that are really working and how they are affecting biology, because cells have been battling with one another since the beginning of life. And so all of the kinds of pharmaceutical developments, pharmaceutical possibilities that will affect major regulatory pathways in our bodies—most of them are out there. That’s why so many botanicals have been used as major drugs, if not as the origins or the starting points of additional, more advanced therapeutics. So we’re looking at Alzheimer’s. We have a new class of anti-inflammatories that can be used both in dermal and skin applications and potentially for a lot of diseases where inappropriate inflammation, either acute or chronic for long periods of time, are associated with particular diseases.

Q: What are you hoping some of the practical applications will be?

A: For instance, we’ve been looking at a key regulatory network that is called PB2A—protein phosphatase 2A—which removes phosphates from regulatory enzymes. There are many, many other enzymes that add phosphates, because those alter the activity of various regulatory enzymes. So this is kind of a master regulator. We have looked at botanicals that have active elements that affect that global regulation. An example of one of those is coffee. That has something in it that is affecting that strongly. Coffee has all sorts of epidemiology associated with health benefits. People who drink four or more cups of coffee a day—it doesn’t matter whether it is caffeinated or decaffeinated—have a reduction in Type 2 diabetes, or a reduced incidence of Type 2 diabetes, of about fifty percent. The same with Parkinson’s, although there it is more related to the caffeine. So if you can identify that compound, then you have the potential for a very strong preventive for Type 2 diabetes. There is a reduced incidence of Alzheimer’s. So coffee is actually a pretty good thing to be taking, and there are probably a number of therapeutics that are in both that and other botanicals that are in wide use, in fact such wide use that we don’t even think of them as herbals any more.

Q: What about genetic engineering?

A: Another aspect of [this is] basically opening up biology, of understanding our workings at a very intimate level, at a deep enough level so that we can imagine not just understanding but actually tweaking it in a variety of ways, altering it, adjusting it. It’s clear that the long course, the trajectory of human investigation of ourselves is partially driven by curiosity, but the real program has been to understand ourselves well enough, and life well enough, that we can begin to intervene in those processes. We’re at the point where that’s beginning to be possible. You can see that in the hype associated with the human genome project—that we’re going to have all sorts of interventions that are based on our genetics. Those have not really come to pass, but it doesn’t mean that that larger vision of the possibilities of those kinds of interventions is false. We get a little bit exuberant about these things in the early stages, because you don’t see all the problems that are going to arise, all the complexities. So people who project forward five or ten or fifteen years are often way too aggressive. But if you go forward 25 or 50 or 75 years, it’s amazing how conservative people’s projections are, because they don’t see the breakthroughs that transform the landscape. And so many of the ethical issues that are arising now—it’s not so much with the interventions that are possible today, but the interventions that are quite plausible tomorrow, that we could actually begin to intervene in the processes of life, to alter ourselves. We’ve certainly used technology in very powerful ways. We’ve taken technology, and we’ve altered the world around us. In New York City, people are walking through these valleys of concrete and stainless steel and glass. This is not the stomping ground of our Pleistocene ancestors. Now technology is becoming so potent and so precise that we’re beginning to turn it back on ourselves. The implications are obviously profound, and they will really bring into question what it means to be a human being and how we differ from other life and from non-life as well, where we’re beginning to breathe a level of complexity into inorganic matter, into sand—silicone dioxide, this inert substance at our feet. We are breathing a level of complexity that rivals life itself. Nothing is ever going to be the same. So, naturally, it evokes questions of morality, of purpose, of who we are, of what we will become, which are the most contentious of issues.

Q: A lot of people take a look at these things and jump ahead to what you call the sci-fi scenarios. How do you respond to people who leap to the worst-case scenario when they think about where this might lead?

A: I think that understanding where these possibilities will lead is very, very difficult, because we’re looking through this haze. We really can’t see where these things are going to go. We can make some strong statements in that the dynamic involved is very, very powerful. It’s not as though we have to seek out to do weird sorts of things. We’re engaged in funding tens of billions of dollars to try and understand biology so that we can develop new therapeutics, which everyone supports. Part of those understandings means that the bar is significantly lowered for doing other kinds of adjustments that many people would find more problematic. But I think the projections that we make that are often how we’re going to be afflicted by this knowledge demonstrate more about our own fears than they do about where we will actually go. The same thing on the other side, where we make fantastic predictions about the possibilities and all of the ills that will be removed from humanity and from society by this technological process. I think both of those are extreme, and they say a lot more about our hopes and fears than about where anything is going to go.

To me, it’s clear that this is a very robust development. I think that if you look at the risks and rewards involved, there are far more rewards involved than risks. I think that most of the issues—the real risks were things like “This is going to get out of hand and afflict us with plagues” and damages of that sort. I think that those are relatively unlikely. I think the real dangers of the technology are that we will use it in ways that are very negative. It’s not that somebody is going to try and do genetic screening on an embryo to try and enhance our lives, or to reduce disease. The things that are coming out of a sense of contributing, of adding to the quality of life, in one way or another—I don’t think that those are likely to be the things that are the most dangerous. The things that will be dangerous are to use these understandings to develop new diseases, to create terrorist weapons, things of that sort which, by and large, are not going to be constrained by regulation. So my feeling is that you have to have a certain amount of faith in our ability or the ability of future humans to make decisions about their lives that will be as sensible as the kinds of decisions that we are trying to make about our lives and about the immediate things that affect us. And for us to try and project forward into the distant future often—at least distant as far as the technologies that may be present—and try to control that in some way shows a real lack of respect for the ability of future humans—of our children, of their children—to make judgments that are in their interest, because the things that really are going to be problems are things that we don’t even begin to see now. I can virtually guarantee that. Anybody who looked at email and the Internet—who was worried about spam? No one. We just can’t see these sorts of things. And so, to me, it’s very spiritual to realize the immensity of the changes that are under way right now. They are so dramatic that if you were to push forward even a hundred years, it is mind-boggling, if technology continues to advance at the pace that it’s doing now or at an accelerated pace. And that seems quite likely. So where is this going to lead us? We don’t really know. To be engaged in this process which is changing the world around us, which is changing ourselves, which is life beginning to get control of its own processes and to act upon that information—to me, it’s awe-inspiring. It’s such a privilege to be alive at this instant in time and to be able to see these immense things, because in my view a million years from now—and I see this as a very robust development; I don’t see that we’re moving toward some sort of cliff—but that when future humans, whatever they are, whoever they are, look back on this moment, I think they’re going to look at it as this incredible instant in time when all of these things occurred, when we animated the inanimate, when we breathed life essentially into things that were previously inanimate, when we began to alter our own biology. The very foundation of what they are and who they are will have been established in this moment, in these hundred years. Here we are at this instant of departure, an evolutionary transition that is, in my view, as large as that when single-celled organisms started to come together to form multi-cellular organisms is happening right now. To me, it’s amazing to be able to watch it and to participate in it.

Q: When you use language like that it sounds almost religious. There is a God-like quality of breathing life into inanimate objects, no matter what religious tradition you’re talking about. Does that trouble you at all, human beings taking on that kind of power? What are some of the moral ramifications?

A: I look at it in a broader sense. I don’t put human beings outside of the processes of life and of nature. And so it’s inspiring that nature is achieving a level of complexity that can begin to reflect back upon itself and alter itself in conscious ways as well as in unconscious ways. Consciousness, for me, is a manifestation of complexity in biology. It’s an emergent property. So we’re at this transition between unconsciousness and consciousness and awareness and these levels of activity. So, to me, I’m not troubled by it at all. I like to be able to see it, to be able to have this evocation of these possibilities. And I’m sensible enough to see that it’s not me that’s seeing this; it’s this larger cluster of human activity, almost a super-organism that is able to observe and see all of these things. These possibilities are not coming from individuals; they’re coming from the huge clusterings of activity, where we have computers and scientific research that’s happening in thousands of laboratories all over the world that are cohering together, and that we—through telecommunications, our ability to integrate all sorts of diverse activities that would otherwise be beyond our ken—we can see all of these things. It almost feels like it’s us doing it, but we’re just a part of this larger process. So, to me, it’s why should we be troubled by the nature of the universe, because it’s not exactly what—people will go, “If I were designing things, I’d do it a little differently.” Well, you know, we’re in the middle of a world that is incredibly beautiful, awe-inspiring, that has been constructed with all of these possibilities and these dynamics that are now emerging and we get to see, and that we would sit back and then critique that and say, “Well, I find that very troubling that this is the world that exists”—it’s a conceit to me and a lack of an understanding of an acceptance that we are a part of this; we’re not back away from it, observing in a God-like sense.

Q: Philosopher Michael Sandel talks about mastery and control of humanity and nature. He suggests that’s what we’re seeking, and it is inappropriate.

A: I think that the notion of mastery and control is an unrealistic projection of the possibilities that are emerging, because for all of the advances that we make, we’re still in the midst of all this stuff. There’s one problem after another. It’s like you’re on a treadmill. You’re solving this, you’re solving that. It creates new problems. To me, the idea that we—whoever “we” is—are going to achieve some level of mastery over the environment, which is now increasingly complex and increasingly containing ourselves, it’s almost like we as a group, but we don’t act consciously like an individual. It’s all sorts of interplays and competitions and different varying possibilities that are in competition with one another. Look at all the noise that is associated with even these emergent possibilities in biotechnology. There’s argument, there’s disputation. It’s a process that is moving forward. To me, it feels very different from what we think of as mastery.

Q: What moral principles should be brought to bear, moving forward? You are a proponent of moving ahead full tilt, but what ethical and moral principles should be considered?

A: Let me step back in terms of the process. First of all, I think it’s unrealistic, if you just step back and look at what’s going on—the idea that we actually have the ability to say yes or no, this is going to happen or is not going to happen, is just silliness. This is going to move forward very, very aggressively. You can just see it in all of the energies that are being devoted towards furthering this process, although not necessarily acknowledging the powers that are involved in what is emerging. So it’s not a question about should we allow this to proceed or not. That’s a silly question, because obviously it’s going to move forward. To me, it’s about trying to do things and to guide the process and make it one that is in as much of alignment as we can with our values and the things that we cherish. There are many different answers to those questions from different groups of people and different individuals. Allowing, as well, acknowledging that there is profound turbulence and change that is occurring today, and best preparing ourselves to adjust and handle that change and realizing that values will change, that people will change. There was a lot of complaint about video games and about technology: Is this going to diminish our humanity in some sense? Who’s complaining about this stuff? It’s generally not the kids. If I look back at my great-grandparents and how they would respond to the world today, they wouldn’t be very happy with it. It would be, “It’s great, the things you have, but people don’t know their neighbors, families don’t stay together, you travel all over, people’s conversations at dinner are interrupted by a phone call”—all these sorts of things that are unfamiliar to them. And yet for me I think what a wonderful time to be alive! I wouldn’t want to go back to some previous simpler era with all of the positives and also all of the negatives associated with it. I think that if we look forward, our great-grandchildren are going to look in the same way at this period—to acknowledging that central to our humanity [are] the possibilities of change and redefining ourselves. It’s an acceptance, in many ways, of the inherent shifts and the difficulties that we will be dealing with, and just trying to do it in ways that are very positive, that feed the possibilities and the opportunities for people to develop their most human qualities, to realize themselves. I have a great deal of respect for individuals and the choices that they make. When they make choices about their families I think, by and large, they’re trying to do the right things. They’re the ones that suffer the consequences. In my view, the most damaging evils that are perpetrated upon us are through some abstract notion about good, where we’re willing to sacrifice individuals in the present for some great vision of an improved or perfect future. So, to me, it’s to avoid those sorts of things and to have some humility about our ability to see and to understand a time that we really can’t see very clearly, to allow these sorts of things to occur. To me, what we need is information. To act with wisdom doesn’t require going off and getting together a group of elders and saying how can we best handle this technology, because it comes from a place of ignorance. No one really understands what’s happening. What we need to do is—wisdom comes from knowledge that usually comes at a cost. It’s purchased, so not trying to stifle people’s ability to experiment and to try and do what they think will enhance our selves, in one way or another. By “enhance ourselves” I mean enhance our lives, make positive contributions to who we are and to how we interact with one another, because I think we will basically select what we find of value and will reject things that aren’t of value. So it protects ourselves in many ways. I think that putting that kind of stuff in place is the safest way ultimately to proceed; not to try and draw lines and say we should not cross this line because it feels so unfamiliar, so strange, so odd.

Q: You feel there is a moral responsibility to push ahead?

A: To be brave. We have possibilities before us that previous generations have only dreamed of. I’ve really dreamed of the idea of being able to alter human lifespan, of being able to prevent disease in profound ways, to enhance various qualities that we have. Who knows what will be of value and what won’t be? But I certainly feel that it would be a conceit for me to say that I know what we should do and what is of benefit for humanity as a whole and for the human enterprise. How crazy is that? My vision—and I think about these things all the time—and I actually think that the world that emerges fifty or a hundred years from now will be a place that I probably personally would be quite uncomfortable with because it’s quite unfamiliar. I would love to see it, but I don’t think it would be necessarily a place that would resonate with me in a variety of ways. I wouldn’t have said that twenty years ago. You see older individuals who seem out of touch with new developments and you say, “Oh that would never happen with me! I can stay in tune. I can keep in contact with this emerging edge of novelty.” It’s very, very difficult, because the things that we’re familiar with, that resonate with us, are things that are often displaced. The biggest changes occur when a generation dies and a new generation begins to be the dominant one. So it’s very odd. I don’t understand. If you take something that could be the most profound change that could occur, which would be substantial extension of the human lifespan—say we were to double human lifespan—you would think this would be radical in that it would change virtually every institution, it could change the way we relate to one another, it would seem to have very profound consequences. Yet, at the same time, it would be very conservative, because the tastes of those people would probably not alter. And so people would want to hold back changes that would otherwise have occurred when they died. So how do you decide how it all plays out? I don’t think you can; not in advance. So, to me, it’s let’s see where it goes. Make the best choices that we can for real problems that are here and now and ones that we can see in the near-term future. But beyond that, let’s be open to creating possibilities for others to make choices about. That’s the way I see it. To me, I find it sad that so many people, in the face of such wondrous things that are occurring, feel afflicted by a vision that we are destroying the world in some sense, which is, to me, almost criminal; that we take all of this bounty around us and that we hold it as an affliction, when anybody in a prior era would say, “What wondrous things!” We should be happy. We should be enjoying that there is all this bounty. Somebody can take an iPod and have all the world’s music at their beck and call in an instant. What an amazing thing! That we can talk with people across the globe, that we actually can be cured of many, many diseases—these are very wonderful things, and that’s why things don’t change that much, because we take it all for granted. Now with that as a baseline, we say, “But there’s still bad things in the world.” How horrible is that? To me, it’s amazing that we can even envision a place at this point where many, many of the age-old afflictions of humankind are potentially manageable. What a step that is! Of course, it doesn’t come quickly.

Q: Would it trouble you if some of the technology that’s used to help Alzheimer’s patients was also used to enhance the memory of a child, for example, by a parent who wants a child to do better in school?

A: No. If we could enhance our memories, to me that superficially seems desirable. It’s not clear that it would be of as much value as we want, or that it’s as necessary, since we have all sorts of electronic devices that are essentially memory-enhancers, but they’re adjuncts to ourselves rather than alterations of our own biologies. Is it troubling that we carry around devices that expand our memories dramatically? No, not for me. Any time there is a reduction in some disease process, in some affliction which we can all support, the possibility exists of other enhancements. There aren’t sharp lines, in my view, between enhancement and therapy. A perfect example of that is therapeutic enhancements where if you were to improve your immune system so that your immune system was twice as good as it had been for any previous human being; that’s an enhancement, but it’s also therapeutic in that it would protect you from a variety of diseases. I think there are all sorts of blurred lines in that realm. So I would look at individual applications. In the abstract, one might be able to say it seems like this would be desirable or undesirable, but probably you won’t really know until certain individuals try them. And what is desirable for one person might be considered to be undesirable for another. I tend to leave things up to individuals’ choices, to individuals’ making choices about themselves.

Q: Is there a point at which you think it goes beyond choice and things go too far?

A: Right now, with the sort of possibilities of altering, for example, the genetics of an embryo, we’re making choices in a position of being a guardian for a potential future life. There would be some things that probably most of us would agree would be not only great to do, but probably should be done—maybe protection against certain kinds of diseases. There are other things that we would say, “This is beyond the pale,” something that would diminish or damage that future life in ways that we understand. Then I think there will be a whole bunch of stuff that well-intentioned people would have significant differences of opinion about whether it is of benefit or not. I would say, for those things, who’s going to make those choices? I would tend to leave those choices to the individuals, or the guardians, who will be most affected by what happens—and will gain us knowledge about, in fact, whether they are of value or whether they are damaging. So I would tend not to give much weight to the arguments that people make about “This may be good for the individual, but for society as a whole it will be a negative,” because those arguments can be perverted in all sorts of ways. They’re almost impossible to argue against, and they really reflect about our rather opaque visions of the future. So the idea that this is going to change the relationships of individuals with one another, if an individual is allowed to enhance him or herself, then what are the third-degree-removed consequences of that? I think those are relatively meaningless.

Q: Michael Sandel, again, argues against altering the relationship between parent and child, where the child becomes almost a consumer product.

A: I think that those kinds of arguments about what the nature of the relationship between parent and child will be because of the use of technology are very difficult, and I think they tend to be quite false. When people talk about having children as becoming a manufacturing process almost, I don’t think they have a clue about what it is to have a child. You can talk about what one is doing in conception, but there’s a nine-month pregnancy that’s going on. It’s a messy process. Having a child that is growing up and that is forming under your wing—this is not a manufacturing process. Parents sometimes hope that it could be more predictable, but I just see that as very unlikely. Or sometimes arguments are made that if there were cloning, then the cloned individual would not see him or herself as being unique. They would not see themselves as an individual. That’s just empty conjecture, in my view. We certainly have the examples of clones—those are identical twins. Some of them are very tight relationships; some of them fight like cats and dogs. Individual personal relationships and the way we deal with the world are so various. I think to make those kinds of assumptions is silliness, in many ways. I don’t think that should be a major factor in setting policy, because if in fact those are negatives, then we’ll find out soon enough. And we should do so while only very few people are making such choices. The problem is that those are easy to conjure up, those kinds of scenarios, whereas the scenario of people [finding] this of value to their lives, in subtle ways, in diverse ways—who responds emotionally to that argument? I think biologically we are very equipped to respond to the technology gone wild, to great threats. That’s why all the Hollywood movies are about some technology that has escaped and almost destroys us and then we get them back in the box, or we get it back in the box, but not quite, for the sequel. So that’s something we really respond to, and for obvious reasons. It’s really good for our survival in environments where there are clear and immediate dangers. But in terms of putting credence into some abstract vision of what society will be and what our roles will be and what the values of that will be, what our values there will be, and how we’ll hold that, I think, are very, very false.

An example of the kinds of choices that we might make in the future, and that we can make in the present, are screening embryos to make choices about various kinds of traits—personality, temperament—or simply matters of gender, choosing a boy or a girl. So many of the arguments about—and there are many that oppose the idea of choosing the gender of a child. They usually point out the gender imbalances that exist in China, or possibly in India, where there aren’t even high technologies being employed there; it’s simply a matter of basically ultrasound and abortion. And they are very driven by the natures of those societies and the way they devalue boys and girls. It turns out that, in the developed world, of those who make gender selection there is a very slight preponderance of girl babies that are chosen. But they are almost equal. I ask myself who is being injured if a parent, for whatever reason, does not want to have a baby boy, or does not want to have a baby girl—and there are going to be a variety of reasons for that. Is it the child that is being damaged by being the gender of choice of that parent? I don’t think so. If that parent wants to have a baby girl instead of a baby boy, the girl isn’t being damaged. If anything is occurring, the child of the unwanted gender is going to be mistreated, in some way or other, or treated as of less value. So I don’t see that as a problem. If we allow that to occur, and we begin to see larger social problems such as occur in some countries, then we can deal with that. This isn’t something that is going to happen overnight. It takes many, many years for these changes to occur. So that’s an example of a very profound choice. What about temperament and personality? Who is being injured if parents have a predilection for certain types of personality and temperament, if they would be more comfortable or think they really would prefer to have a child who is a little more outgoing, or who is more introverted, or who is a little brighter, or whatever those traits are—who sleeps through the night, a very selfish choice. If there were any risk involved, very few parents would do those sorts of choices. And if there is no risk involved, which there really wouldn’t be for embryo screening, then I think that it’s very unlikely that there’s going to be anyone that’s really damaged by that, other than on a philosophical level, that we’d feel that parents are making choices about their children.

Q: So what if someone actually selected a baby that’s going to sleep through the night or be a little smarter?

A: In my view, the idea that someone—a prospective parent—would make some choice about the possible temperament and personality of their future offspring—which is natural that they would do—in a way that they can relate to more fully, that they think will resonate with more—I don’t see that anyone is going to be damaged by that. I think that a lot of choices, especially by parents who are making a choice about a first-time child, probably this will be one of the many falsities about their relationship with their child that they will see, because they’re going to love their child anyway. To me, I don’t see it as anything that is going to be damaging to anyone. And so I would allow people to proceed with those sorts of choices. And if one begins to have problems that emerge, I think it would be great to monitor the results of those sorts of choices that people made and what the consequences are—for the child, for the family—and we can begin to see whether there are problems. But how can you say that you would only allow those choices to be made for certain types of disabilities? Is a child with cystic fibrosis any less lovable? Is a child with trisomy [Down syndrome] any less lovable? So then we’re led into the uncomfortable position of saying we’re going to draw this line. If it’s about temperament and personality, we don’t want to go there. But as long as it’s just getting rid of a child with some infirmity, of some sort of potential health problem, then we’re comfortable with that. To me, I find that troubling, because then it really is saying that, at some level, prospective future humans are expendable. We’re making that as a societal statement. And at other levels, for other kinds of traits, they’re really not. So I just don’t see anything very damaging about that. I ask myself about all of these technologies.

To me, the question is if this were happening to me, how would I feel about it? When people talk about parents making choices about temperaments and personalities of their children, often people are thinking, “If my parents had been choosing, would I exist? Would I be one of the chosen?” This is a reasonable thing to question. But if one already existed, and you were told, “You know, your parents made a choice that they wanted to have somebody that was kind of outgoing like you are and kind of bright,” or whatever it is, “and how do you feel about that?,” you’re already kind of the winner of the lottery. Are you going to say, “No, I feel diminished, because my personality was, in some sense, the product of choice?” I don’t think so. If you look at children that are adopted and you ask them when their adoptive parents told them how they were chosen and they said, “Oh, we loved you more than any other child! We saw you and you had this about you or that about you, and we chose you actively because we wanted you”—that’s much preferable to “We just picked you at random. You were there and so we took you in.” So, to me, it’s not clear at all that that would be viewed as a diminution by a child. In any event, it’s easy to conflate knowledge about ourselves with choice, because the genetics revolution is making it so that we will soon know about ourselves at a very early age whatever genetics has to tell us about ourselves. So children are going to have to deal with this in the future. To me, it’s kind of natural that we would want to use this information in ways that we consider to be advantageous for our kids. We do it after they’re growing up. Parents have designs for their children that may be out of synch with who they really are.

I feel that life is really a gift, but not from anyone in particular. I think it’s amazing, but there’s a process involved. I feel very grateful for the opportunities I have, for who I am, for what I am. I’m not religious. I have a sense of the spirituality of the world and of the process by which the universe is unfolding, but I don’t believe in a deity that has any interest in my personally, or that was involved in the creation of this universe. And so to me it’s almost awe-inspiring that such a thing exists, rather than the easy answer: Oh, well, something created it as it is. Then who created that something? I see no evidence of such a deity externally, and I still feel a great sense of awe and wonder about who we are and about our place in the universe.