DR. JOSEPH DUTKOWSKY (Orthopedic Surgeon): This is a young person who has a genetic missing piece of I think genetic 6 chromosome.

BOB FAW, correspondent: In a busy clinic in rural upstate New York, orthopedic surgeon Dr. Joseph Dutkowsky sees hundreds of children and adults disabled by disorders which leave them crippled or deformed. Or in the case of 19 year old Omer King Jr., blind and deaf from a metabolic dysfunction.

DUTKOWSKY: (speaking to patient) And we are going to pull. One, two, three.

FAW: As a doctor, everything Dutkowsky does is informed by his deep Catholic faith.

DUTKOWSKY: (speaking to nurse) Let’s get Jr. out here.

Was it St. Francis who said, “To preach the Gospel at all times, use words if necessary.” And so, you do it with your actions. People don’t need for me to preach at them. People don’t need for me to lecture them. They need, they need for me to care. They need for me to walk in with the love of God and to try and share it in any way that I can.

FAW: Whether treating Jr. or two married cerebral palsy patients, Josie and Chris Rosa.

DUTKOWSKY: (to Chris Rosa) You look like you should be bringing in an aircraft with that on it or something.

(to Josie Rosa): What you up to? You’re looking well today.

JOSIE ROSA: Yeah. We got to talk.

DUTKOWSKY: We got to talk. We can talk. That’s for sure.

FAW: Dr. Dutkowsky is unfailingly patient, willing to listen no matter how long it takes.

JOSIE: I know this might sound strange but can you test me for osteoarthritis?

DUTKOWSKY: (to Josie) Yeah. I’m happy to do that.

Patients like this, they need me to listen to them. They need somebody who cares enough to listen to their story, because they all have a story, they all have a need.

FAW: 57 year old Dutkowsky was an engineer when he says he got the calling to become a doctor.

DUTKOWSKY: I applied to medical school and I wrote my essay. I wrote that I wanted to take some of this technology and figure out a way to help people with disabilities. Now there’s nobody disabled in my family. There was nobody that I knew of who had a disability that I was thinking about when I did it. So I, I would take that as a Holy Spirit moment.

(to Jeremiah): Run, run, run back.

FAW: Most days here, Dutkowsky sees 25 to 30 patients like 8 year old Jeremiah Harrington, born with a club foot. For each patient, Dutkowsky uses an old-fashioned, leisurely approach rarely encountered in modern medical practice today.

DUTKOWSKY: (to Jeremiah) Can I look at your feet? Can I look at your feet? Thank you.

From a spiritual standpoint what I try and do as a physician is that even if I can’t cure the situation, even if I can’t cure the condition, if even I can’t make it all go away, if they’re being overburdened with that cross, if I can just hold up a corner sometimes, it might make it light enough for them to be able to carry it and move on.

FAW: Here in the country, he does more than just listen, give injections and comfort to anxious parents. Every Monday at the Bassett Medical Center in Cooperstown, he operates on severely disabled children and before each surgery, he prays.

DUTKOWSKY: It’s an overwhelming responsibility. And if I try and go in there on my own I run so many risks of failure. But if I come in and I and ask God to be with me and help me, that even in those cases where it might not work out perfectly, I’m with him and I can be in peace.

(while driving): I was born and raised in the country. I love being out here.

FAW: Dutkowsky isn’t anchored to the country though. Every week, crucifix nearby, he drives into New York City to see patients, three hours plus on the road often spent in prayer.

DUTKOWSKY: It’s a prayer to the Holy Spirit. It’s “Holy Spirit, soul of my soul, I adore thee. Enlighten, guide, strengthen and console me. Tell me what to do and command me to do it.”

FAW: Here, anywhere for that matter, Joseph Dutkowsky is not reluctant to display his faith.

DUTKOWSKY: Good morning, good day. Hello, God bless you. How you doing?

EMILY: Good.

FAW: But he never imposes his beliefs on anyone.

DUTKOWSKY: I’m not out there to tell them what to believe. But if I make that opening, and it’s important to them, then it can be part of their care.

FAW: It is a ministry he takes each week to New York Presbyterian Morgan Stanley Children’s Hospital where at the Cerebral Palsy Center he sees patients like 10 year old Devon Ramsaram.

HARICHARD RAMSARAM (Devon’s father): After this shot, can we send him to school tomorrow?

FAW: Dutkowsky hopes the medical community will learn, from treatments pioneered here, how to treat cerebral palsy patients not just when they’re young but also as they grow older.

DUTKOWSKY: Country doctor, coming down to wonderful, you know, one of the finest medical centers in the world. I was way out of my comfort zone. But what’s the risk? If I fail, yeah, I got a little egg on my face. Big deal. But if we succeed, we can move the world.

JENNIFER SNYDER: (to Dr. Dutkowsky) He can’t get comfortable.

FAW: Two year old Nathan has a rare congenital disorder. His mother Jennifer feels about the same as most parents do when it comes to Dr. D as he is affectionately called.

SNYDER: He listens, yes. He’s a listener. He understands. He takes the time to educate a person such as myself.

CHRIS ROSA: A lot of doctors don’t listen. They just want to do what they gotta do for you and go away. Just because we may look funny doesn’t mean you should talk over us or through us.

FAW: It’s not like that with Dr. D though is it.

JOSIE ROSA: No, No. Because Dr. Dutkowsky would never treat us any different. He treats us with respect and decency.

FAW: And knowing that Dutkowsky is a man of faith reassures many, even non-Christians like Devon’s father Harichard Ramsaram.

HARICHARD RAMSARAM: Well it does, it does make me feel comfortable because it means that he has some sense of responsibility in what he does. You know what I’m saying? Because whoever believes in God does have a sense of caring, guidance. You know what I’m saying?

FAW: Treating so many young disabled patients might shake a person’s faith in a merciful God.

(to Dr. Dutkowsky): Do ever ask yourself why did God let that happen?

DUTKOWSKY: No, I don’t, because what I see when I see Omer, I go in that room and I feel love. It’s an energy from outside that draws me in.

FAW: There are bodies that are, forgive me, misshapen, malformed, twisted, crippled, and you see in that the likeness of God?

DUTKOWSKY: Yes, I do. I see the image and likeness of God in every one of those individuals.

FAW: For Dr. Dutkowsky then, faith and medicine intersect, complement one another. Seeing affliction, he also finds something meaningful.

DUTKOWSKY: There are days I go home with tears in my eyes because suffering is real. But sharing suffering is a gift. The depth of that love, the depth of that commitment, the depth of working with individuals like that, that’s the privilege.

FAW: Dutkowsky says he doesn’t heal, that only God can do that. In the meantime, this old-fashioned man of faith and modern man of science continues a ministry to both body and soul.

DUTKOWSKY: All right, God love you.

FAW: For Religion & Ethics NewsWeekly, this is Bob Faw in Delphi, New York.

LUCKY SEVERSON, correspondent: This is Liam. Everybody likes Liam. Hard not to, that smile under the hat he never takes off. And this is his loving mom, Kathleen Hilferty, who knew from the beginning that something was terribly wrong with Liam.

KATHLEEN HILFERTY: I knew something was wrong because of the breathing. He couldn’t eat at the same time. He couldn’t drink and breathe at the same time.

SEVERSON: Liam is 12. This is his twin brother, Joseph, who is about twice as big as Liam. From day one, his mother was desperate to find out exactly what was wrong with Liam so she could get him treated.

HILFERTY: I wanted at least to have a name to it, so I could say I did the best possible thing for my child, or I gave it the best possible care.

SEVERSON: For 12 agonizing years Kathleen was looking for an answer and recently got one from Dr. Ian Krantz at the Children’s Hospital of Philadelphia, who had sequenced Liam’s genome.

DR. IAN KRANTZ (Medical Geneticist, Children’s Hospital of Philadelphia) And we not only found an answer in him, but we found the same answer in a number of other children, and we have a new diagnosis. We are understanding it, how to treat it better.

SEVERSON: The discovery of Liam’s genetic defect underscores how rapidly and how important the science of sequencing the human genome has become in modern medicine, especially when it comes to children. When researchers first mapped the human genome, it took almost 10 years and cost $3 billion. That was less than 10 years ago. Today the process takes three weeks, and the price tag is rapidly approaching $1,000.

Nancy Spinner heads the division of genomic diagnostics at Children’s Hospital of Philadelphia.

NANCY SPINNER, Ph.D (Genomic Diagnostics, Children’s Hospital of Philadelphia): For parents whose kids have some serious birth defects or congenital abnormalities, you really want to understand what’s causing it. You want to know is there something that you should be doing. I think moms feel very guilty, because when they have a child with a birth defect, then they say was it something I did in the pregnancy?

SEVERSON: Dr. Krantz and Nancy Spinner are a husband-and-wife team who are the principal investigators of federally funded research to help develop guidelines for doctors and patients. Unlike earlier genetic tests, sequencing the genome reveals a child’s entire genetic makeup, including their predisposition to disease that might occur later in life. And it raises some ethical questions: What should parents know, and what knowledge might cause more pain than gain?

SPINNER: Now we are looking across the entire genome, and we have this enormous challenge: How much of it should we report back? What should we tell people? How are they going to use the information?

DR. KRANTZ: The problem we are having now is that there are no guidelines to say what should be reported back, who should be tested, who shouldn’t be tested?

SEVERSON: (to Dr. Krantz) Who should be told?

DR. KRANTZ: Who should be told about this information, exactly.

We are very good at diagnosing and not so great at treating genetic disorders or preventing things from happening later in life. But I think knowledge is powerful, and having information can in the short term affect parental decisions, reproductive decisions. It can affect lifestyle choices later on.

SPINNER: There have already been examples of people who have been tested, seen a predisposition to diabetes, and start to immediately get screened for it and find out that they have diabetes much earlier. That can save many dollars in health care costs, because you can treat things before they become bad.

SEVERSON: Scientists say that for diseases diagnosed early and then treated, sequencing can indeed save lives. But should doctors tell parents when tests show that their child will eventually fall victim to early adult onset disease like Alzheimer’s, for which there is no known cure?

SPINNER: And we have already seen some cases where we find some things that are damaging that tell that you are at very, very high risk for an adult onset disorder that’s going to be bad, and there’s no treatment, so we can’t really think of a reason to give that information to people. And I think right now we are trying to learn what should we be giving and what shouldn’t we be giving, because our main goal is not to cause any harm or additional stress to families.

SEVERSON: The Hunter family in New Jersey wanted any information they could get about their 14-year-old daughter, Amanda. She suffers from Crohn’s disease and serious cognitive impairment, and her condition appeared to be regressing. Like all children, Amanda’s genome contains 22,000 genes that hold tantalizing information that could save or prolong her life. Her mother, Laurie, wanted some answers.

LAURIE HUNTER: I love that people are able to say “it is what it is” until you are living in that world. And that motherly instinct tells you that something is not right. You’re going to stop at nothing until you find out what you can do to help that child.

SEVERSON: What if you test for one thing and find something else? When Amanda’s genome was sequenced, doctors discovered what they call an “incidental finding,” something they weren’t looking for, a deletion, seven genes missing from a chromosome. The deletion didn’t explain her impairment, but it indicated she was susceptible to cancer. And then her mom got some news that may have saved her life.

HUNTER: When Amanda was diagnosed with that deletion the natural course is to test the parents, so her father and I were tested, and it turned out that I carried that same deletion. So I’ve gone through the same series of tests. I’ve had a full body MRI. They found a lesion just above my diaphragm.

SEVERSON: It’s a slow growing cancer and treatable if detected early enough.

HUNTER: When they told me that they found had no explanation for the issues I was concerned about, my immediate reaction was I wish that I hadn’t know, but now, yes, I am glad because the condition is a cancer, you know, can cause cancerous tumors. The tumors must be surgically removed in order to avoid further complications, and I want to be here for my children. I need to be here for my children.

SEVERSON: She gave birth to her second daughter, Kailyn, after undergoing an amniocentesis which erroneously showed that Kailyn was normal. Laurie knew the first week that Kailyn was not normal, and after doctors sequenced her genome, she learned that Kailyn has a rare non-hereditary disease called Wolf-Hirschhorn Syndrome. Her four-year-old son Ryan’s genome has also been sequenced, and he appears to be in good health. For some parents gaining knowledge of their children’s genome before they are born would help them be better prepared in case their child has special needs, but it will undoubtedly encourage some parents to choose abortion.

SPINNER: We have some patients who we have followed who have used it for prenatal diagnosis in such a way to avoid having affected children.

SEVERSON: Dr. Krantz and Nancy Spinner are most concerned that the science has few guidelines, including safeguards for patient’s privacy.

DR. KRANTZ: We live in a capitalistic society. Often, when something is technically feasible and fiscally feasible, it is offered, and there are for-profit companies now who are offering this testing to the individual, so you can go out yourself and pay the money and get your genome sequenced. The problem now is it’s the thousand-dollar genome, but it’s the million-dollar interpretation because you can get the sequence but understanding what it does takes hundreds of hours of manpower to interpret and understand, and we’re not even that good at it.

SEVERSON: As for Dr. Krantz and his wife Nancy and their three children…

DR. KRANTZ: I have to say that neither Nancy or I or anyone in our family has had their genome sequenced yet, not because we wouldn’t be interested but I don’t think we really subscribe to the recreational sequencing of genomes, but if there was a medical concern I don’t think we would hesitate.

SEVERSON: For Kathleen, even though the news about Liam was not good, just knowing seems to have made a huge difference.

HILFERTY: I guess a miracle, I would say, because I waited so long, and as he was getting sicker I didn’t want him to pass away, because I would feel so guilty that I didn’t do everything I could have. Now that I have a name, I know there’s no cure for him, but he can help so many other kids.

SEVERSON: It’s the promise of help for kids like Liam that drives the science that is going so fast the road map with guidelines and warning signs can’t keep up. And as the technology progresses, the ethical issues will become even more difficult.

For Religion & Ethics NewsWeekly I’m Lucky Severson in West Chester, Pennsylvania.

FRED DE SAM LAZARO, correspondent: Early each morning in the chapel of St. Damien’s Children’s Hospital, the shrouded bodies of infants—and one adult on this day—are counted, the names written down for prayers that follow at daily Mass.

REV. RICHARD FRECHETTE: Anybody that dies in our arms, as they say in Creole, in our place, then their body is first brought to the chapel so that the very next Mass we have the prayers for the dead and for their peace and for the transformation of their life to eternity and for the strength and courage of their family.

DE SAM LAZARO: Father Rick Frechette spends much of his day attacking the infant mortality he sees so literally each morning. He’s the founder of one of the largest medical care facilities for children and many adults in Haiti. It’s grown by necessity, often out of tragedy. Frechette is a member of the Community of Passionists, a global Catholic order, and he began 25 years ago with what seemed a more straightforward mission: a shelter and school for orphans. Today, 800 children are housed at several centers. This one, taking in the overflow, functions out of converted shipping containers. The shelter’s young managers themselves grew up here. Billy Jean is one. He was brought at age three to NPH, the orphanage’s local acronym. Today, he works to master English and is in law school.

BILLY JEAN: My mother became pregnant very early, about 16 years old, and my father took off, and then my mother couldn’t take care of me. She heard about NPH and she decided to put me there…

DE SAM LAZARO: His mother visits occasionally, he says, but the orphanage is very much his family.

REV. FRECHETTE: That’s our goal, to restore the family over one generation, to raise the children together so they have memories of their own childhood, restored childhood, and that later in life they become aunts and uncles to each other’s children and their family regenerates after a generation. That’s our goal, so we have community of families that have been broken by tragedy.

DE SAM LAZARO: The tragedy of Haiti’s AIDS epidemic, beginning in the nineties, brought big change for the organization and Frechette himself. HIV was bringing in very ill children that the orphanages were ill-equipped to care for.

REV. FRECHETTE: That really engraved itself hard on my memory. Seeing such terrible things and honestly not having a clue, not having a clue as to what to do.

DE SAM LAZARO: Frechette received permission from his order to go to medical school, a multiyear commitment which he completed in his mid 40s. Back in Haiti, his newly-acquired expertise, combined with astute fundraising, resulted in a modern pediatric hospital. It expanded with a new building in 2006, the largest of its kind in the country, with a 22-bed center for neonatology.

DR. JACQUELINE GAUTIER (Medical Director): Neonatology is a luxury for Haiti.

DE SAM LAZARO: Dr. Jacqueline Gautier is the medical director.

DR. GAUTIER: We have central oxygen. We can offer CPAP, which is external ventilation.

DE SAM LAZARO: (to Dr. Gautier) So on any given day, you have 22 kids in here who would not have lived were it not for this facility?

DR. GAUTIER: Correct. All the 22s are not very intensive. Half of it. Half of them.

DE SAM LAZARO: Many of these premature births result from conditions like hypertension or diabetes in the mothers. For them, a maternity unit was added in 2010 after the capital’s major hospital for high risk pregnancies was destroyed.

DR. GAUTIER: Fortunately, 2010 we were not really damaged by the earthquake. It was a few cracks. A few cracks only.

DE SAM LAZARO: The quake did not damage this hospital, but it quickly overwhelmed it.

DR. GAUTIER: The yard was transformed into a trauma center. We had patients everywhere.

DE SAM LAZARO: In a few weeks, Frechette says the decision was made to use donations that were pouring in to start a new adult hospital. Ten months later, a cholera ward had to be added after the deadly outbreak that killed nearly 5,000 people in its first year.

REV. FRECHETTE: So we kind of mushroomed out in response to all of these problems. I think the surprise to everybody, including to us, is that we could do it all pretty much without batting an eyelash. And the real wonder of it, to tell you the truth, this is a country of no infrastructures practically, and it’s a country of failed NGOs.

DE SAM LAZARO: He says three years after the quake, despite billions of dollars given to thousands of NGOs—non-government organizations—the rebuilding has been painfully slow.

REV. FRECHETTE: There’s too much disjointedness. It’s goodwill, and it should be recognized fully as that and appreciated, but it doesn’t get channeled in a way that makes sense, and in fact it’s a way that gets disruptive.

DE SAM LAZARO: Many smaller NGOs, often church-based, have come and gone as their funding allowed. Bureaucracy has slowed larger agencies as they’ve planned major projects in housing, clean water and sanitation. Some 360,000 earthquake victims remain displaced in tent camps. For it’s part, Frechette’s organization took in $9 million in earthquake-related donations. Its approach now is focused on community.

RAPHAEL LOUIGENE (Project Manager): (translation) Organizations come in with their own ideas and do things their own way. The way that Fr. Rick works is we don’t come into a community and give our idea of what to do and how to do it. We listen to the community, listen to their needs because they know them the best, and then we work together to accomplish it.

DE SAM LAZARO: In the sprawling Port au Prince slum called Cite Soleil, the group is partnering with the community to build homes to replace the sea of shacks and squalor. They’re simple two room structures built on the principle that if you wait to do things right, nothing will get done for years, prolonging the suffering.

REV. FRECHETTE: The way that we look at it and explain it to our donors, we’re investing in the purchase of time. You know, they’re simple block structures, we make most of the blocks ourselves. They’re simple aluminum roofs. It’s more towards normal than anything that they have known, but we’re just buying time while the people with big money and big plans, an interwoven network of organizations can do a proper urban development. That’s what we’re doing.

DE SAM LAZARO: They’re also doing health care here. A new facility is being built in Cite Soleil. All told, about 1,800 Haitians work for the mission begun by Frechette. Hundred of thousands have been served in orphanages, schools and hospitals. Funding comes from private individuals, foundations, and government grants. This year, Frechette was awarded the one million dollar Opus Prize, given to a faith-based social entrepreneur by the Minnesota-based Opus Foundation.

Frechette himself does not see his work in charitable or heroic terms.

REV. FRECHETTE: Rather than saying, I gave you this chance, I say, I was fortunate. I had that chance. It came to me. I didn’t make it. And we want that same chance to come to you so that we have the same chance. We’re people who care by being the bridge between resources that have benefited us in our life for our education and well-being, and we just want to be the bridge for letting that happen by people who have their own capacity and dreams.

DE SAM LAZARO: A long road, he admits, where success is built one small stretch at a time.

For Religion & Ethics NewsWeekly, this is Fred de Sam Lazaro in Cite Soleil, Haiti.

FRED DE SAM LAZARO, correspondent: Minutes after delivering a slightly premature infant by C section, Dr. Nayna Patel was back in her office and on the phone to the parents.

Dr. Nayna Patel: Congratulations, it’s a baby girl. Where are you, in Mumbai right now?

DE SAM LAZARO: They were en route from their home in England and didn’t reach the small town of Anand, India in time to watch a surrogate mother give birth to their child.

Dr. Patel: Surrogate is also fine. The baby is also fine. We have taken the picture.

DE SAM LAZARO: Dr. Patel has delivered some 400 surrogate babies since 2004. Her clinic implants embryos in surrogates she recruits from the area and pays around $7,000 for a pregnancy carried to term. Biological parents come from across India and around the world. Kirshner Ross-Vaden came here from Colorado to pick up her baby girl named Serenity. She was born four weeks premature, but after a week in neonatal intensive care she was ready to be discharged. Serenity’s 46-year-old mother traveled here with her nine-year-old son. She had tried unsuccessfully in recent years to conceive. Surrogacy was her last hope and India her first choice. The cost—$10,000 to $15,000 all told—is a fraction of what it is in the United States, and in America, she added, surrogacy contracts are not always air-tight.

KIRSHNER ROSS-VADEN: You can sign a hundred documents. It doesn’t matter. If that surrogate changes her mind she can sue you for that child, and oftentimes she will win, and coming here to India, these women, they don’t want my child. It’s very cut and dry. They do not want my child. They want my money, and that is just fine with me.

DE SAM LAZARO: It’s not fine with everyone.

DR. ARTHUR CAPLAN (University of Pennsylvania): The contracts usually are written, to be blunt, to protect the wealthy people who are commissioning the baby, so that if the woman suffers an injury, if the woman has a health problem due to childbirth, if there’s a long-term chronic condition, then what?

DE SAM LAZARO: University of Pennsylvania ethicist Arthur Caplan worries the relationship is inherently lopsided between poor, minimally literate women and well-heeled couples who commission them to have their children. For example, surrogates in India are routinely implanted with up to five embryos to improve the chances of a pregnancy. In the US, clinics usually implant no more than two, sometimes three.

DR. CAPLAN: Why would you use three, four, five embryos in India? Because you don’t want the couple to have to come back. It’s expensive, even for a rich person so you’re trying to maximize the chance of pregnancy, even if it might compromise the interests of the babies.

DE SAM LAZARO: Dr. Patel concedes that implanting five embryos heightens the risk for infants and mother and says she is now lowering the number to three or four. But she says the downside of fewer embryos is a lower pregnancy success rate. When multiple embryos develop into viable pregnancies, Dr. Patel’s policy is to reduce them by selective abortion. Aside from possible religious concerns, this process could present medical risk to the surviving fetuses.

DR. PATEL: Parents—yes, there are some who say right from the beginning, “Doctor, put less embryos because we are not for reduction, and we don’t this to happen.” So in those cases we definitely never transfer more than two. But there are certain parents who don’t have any objection to this, and surrogates—we don’t allow them to carry more than two.

DE SAM LAZARO: Dr. Patel insists that her facility protects the interests of surrogates as much as the clients of her commercial surrogacy program and the infants she delivers.

DR. PATEL: We do a lot of psychological counseling for the surrogate and the family before we recruit them. We explain to them the procedure of IVF, what all they’ll have to undergo. If she has had any complications during her previous pregnancy, we will ask her not to become a surrogate, because the same can repeat this time, to make it very sure and safe for her.

DE SAM LAZARO: The moment their pregnancies are confirmed, surrogates are required to move into this home run by Dr. Patel. They’re offered skills training in things like tailoring, but mostly it’s a quiet, sedentary life. The women who spend nine months in this surrogate hostel have all experienced childbirth with their own biological children. It’s a prerequisite for becoming a surrogate. What very few of them have experienced with those previous pregnancies is any kind of prenatal care. That’s in sharp contrast to the pampering they get here: meals provided and medical attention, should they need it, round the clock. Dr. Patel acknowledges the irony but says it is part of a thorough surveillance to ensure smooth pregnancies, for both surrogate and parents’ sake.

DR. PATEL: We have a fetal medicine specialist who checks all the surrogates every three weeks. We have been able to detect minor congenital malformations which we inform the couple can be treated post-delivery without any impact on the baby. We have had patients whose surrogates had babies with Down syndrome, which was detected, which was confirmed with amniocentesis, and we have aborted those babies after the consent of the couple.

DE SAM LAZARO: Well in advance, she says, parents are consulted on decisions like pregnancy termination. Similarly, parents must accept their babies, once born, whether healthy or not. Surrogates we spoke to talked about building a new home and using their money for their children’s education. The money—$7,000-$8000—would otherwise take them decades to earn. Most say they were happy to have helped infertile couples. The woman who bore baby Serenity who we met earlier, admitted to some sorrow at her separation.

DHANA: You can’t help it when you’ve carried a baby for nine months. I’d like to see how she does in the future.

ROSS-VADEN: I do have her address, so I can get a hold of her. And I hopefully will be able to maintain some kind of a relationship with her.

DE SAM LAZARO: We caught up with Serenity’s mother in Mumbai, about 500 miles from Dr. Patel’s clinic. She and son Brandon were holed up in a hotel awaiting DNA test results and myriad documents to satisfy the Indian and US governments that the infant could leave the country.

ROSS-VADEN: Am I living happily ever after now? I certainly hope so. I hope that I can get her home, and I hope that she is a happy, healthy little baby, and that is what I will have—a healthy, happy little girl.

DE SAM LAZARO: But will every surrogacy story end happily? Right now, India has only voluntary guidelines, and it’s not clear whether future laws would be adequately enforced, and standards vary widely. For example, Dr. Patel says she only serves infertile patients. But some clinics offer surrogates to healthy parents who, for career or convenience, want to avoid pregnancy. Ethicist Caplan worries about where all this is leading.

DR. CAPLAN: We may get into situations where people start to say, as genetic knowledge improves, you know, I’m not infertile but I’d like to make a baby with traits or properties that I want to avoid or that I desire. That day is coming. I think it’s important to keep in mind, as we watch the evolution of surrogacy as an international activity, what is really something that a tiny handful of people use who suffer from infertility tomorrow can be what more people are interested in because they have a more eugenic, more perfectionist interest in making their children.

DE SAM LAZARO: For her part, Dr. Patel plans a major expansion of her one-stop surrogacy shop, a leader in what’s now a half-billion-dollar industry in India. She makes no apologies for making a lucrative living and insists that she, the surrogates, and the new parents all come out winners.

For Religion & Ethics NewsWeekly, this is Fred de Sam Lazaro in Anand, India.

Editor’s Note: Lyn Lusi died of cancer on March 17, 2012.

FRED DE SAM LAZARO: There are few images of war’s destruction in the eastern Congolese city of Goma. Little was built in the first place. For two decades, regional militias have clashed over the minerals here. U.N. troops have brought some order but their reach—and mandate—are limited. So is the Congolese army’s effort to assert control.

A series of peace agreements and two democratic elections have brought some stability here, although very little development. There’s still virtually no paved road in this whole country. What has continued unabated is an epidemic of sexual violence. The United Nations says the Democratic Republic of Congo is the worst place on earth to be a woman.

One place where you get an idea of what that means is a refuge called HEAL Africa.

Women work to shake off unspeakable atrocities they have faced. The trauma has left most of them with injuries that render them incontinent. This woman wears a mask to conceal her maiming at the hands of militiamen who raided her home one night about a year ago.

ANNONCIATA: My older daughter escaped from them. they told me to go get her. And I said she’d escape from you, how could I ever catch her. Since I wouldn’t give them my daughter, they hit me on the head with a machete and after I fell down they used the same machete to cut off my lips.

DE SAM LAZARO: A volunteer health worker brought her to HEAL Africa. It is the only specialty care hospital in all of Eastern Congo.  It was started 12 years ago by British-born Lyn Lusi and her Congolese husband, devout Christians who’d served the region for years before that as medical missionaries.

LYN LUSI(Co-Founder, HEAL Africa): Well, my husband was an orthopedic surgeon. He finished in Belgium in ‘84, and to this day he’s still the only one, the only orthopedic surgeon in the east of the country.

DE SAM LAZARO: Dr. Jo Lusi has performed thousands of surgical operations—fixing everything from club feet and cleft palates to fistulas, the vaginal, sometimes rectal tearing that comes from rape trauma or obstructed labor. HEAL Africa has trained nearly 30 young Congolese doctors, paying for their education elsewhere in Africa. Its bare bones emergency and intensive care are the only such services in a region of eight million people—supported by various private and international government grants. Seven hundred children with HIV get life-saving antiretroviral drugs here. But Dr. Lusi says all this is just one part of a much larger idea.

DR. JO LUSI (Co-Founder, HEAL Africa): When you serve human, I don’t see you here like a human. I see you like an image of God, so to do that you have to be holistic. You have to be total, you have to know what about the spirit, about the flesh, about the soul. Here the people are lacking everything. They don’t have food; absolute poverty. They are exploited. They are perishing because of lack of knowledge. They are perishing because of the lack of justice. So me and my wife said OK, how do we do a holistic system?

LYN LUSI: HEAL is an acronym, it stands for health, education, action in the community, and leadership development, and all of those are components of a healthy society.

DE SAM LAZARO: For many patients who come initially for medical care, healing is a years-long process of rebuilding a life. This shelter serves women whose fistulas have not healed—about a quarter of such cases.

BASENYA BANDORA: It is very different here from back in village. People were laughing at me: “She’s smelly, she was raped.” Here people know I am a complete person.

DE SAM LAZARO: Women are taught to sew, make baskets, and raise small animals, and they are allowed to dream.

BANDORA:  I want to have a little shop, and I will make bread and I will sit there with my sewing machine and people will bring me things to sew.  I will make baskets.  If I can have a little house, that would be very nice.

DE SAM LAZARO:  For now, for practical purposes, such dreams are pure fantasy, thanks to lingering health problems and also militiamen who continue to raid villages with impunity. Annonciata frequently sees the men who maimed her, but she reacted viscerally to a suggestion she might report them to the police.

ANNONCIATA: Uh uh uh uh! I’m terrified, they would kill me. Only God can punish them for what they did.

DE SAM LAZARO: But HEAL Africa has begun working to bring a more immediate justice to victims of rape. In partnership with the American Bar Association, local lawyers work to apprehend suspects and put them through the legal system here. It is flawed and corrupt but Lyn Lusi says only when Congolese begin to buy into it will it begin to work for them.

LYN LUSI: I would always encourage our legal aid to work ten times more on the issue of bringing the community in line with the law so that they appreciate what the law is trying to do and that they agree with it and that there’s social pressure, there’s a a desire within the community for zero tolerance of sexual violence, of any sort of violence.

DE SAM LAZARO: That’s what brought this 15-year-old girl and her father to the legal clinic to bring charges against a young man who raped her while she went to collect water for the family.

PATRICE KIHUJHO: I want him not only to be put in prison but I also want him to pay for the damages he caused. Last year, I turned 75 years old. When we were growing up, we never saw this kind of behavior. When you liked a girl, we would get married. I am really astonished. I’m not sure what’s going on, how they can take little girls and assault them.

DE SAM LAZARO: Lyn Lusi thinks it’s a consequence of fighting that has raged for two decades in Eastern Congo, destroying any sense of community.

LYN LUSI: You have seen your village destroyed, you’ve seen your people killed, you’re a young man with no future, I mean you have every reason to fight and every reason to go off and join the militia. There are also those militias that will kidnap children and take them into their armies and just to reinforce their ranks. Children are extremely good soldiers in that they have no fear, and they have no conscience.

DE SAM LAZARO: Where does one begin to repair this? The Lusis say they have worked to tap the enduring faith of most Congolese.

LYN LUSI: Here is a mandate to care that’s in the Muslim community, that’s in the Christian community, and it’s present in every single locality in Congo. You could say that probably 95 precent of Congolese will go to a place of worship once a month at least. So this is an amazing power within the community, and if we knew how to mobilize people correctly, around their mandate to care, then you can make a big impact on a social problem.

DE SAM LAZARO: HEAL Africa has gathered religious leaders and other community elders into so-called Nehemiah Committees. These gatherings address sources of violence early on, mediating local business disputes or competing land claims before they escalate. Lyn Lusi says it’s a start.

LYN LUSI: I have no illusions that we’re dealing with major issues that are pulling Congo apart. I don’t think HEAL Africa is going to empty the ocean, but we can take out a bucketful here and a bucketful there. There is so much evil and so much cruelty, so much selfishness and it is like darkness. But if we can bring in some light, the darkness will not overcome the light, and that’s where faith is. We believe that.

DE SAM LAZARO: For her work, Lusi was awarded the 2011 Opus Prize, a one million dollar award given by the Minnesota-based Opus Foundation to a faith-driven social entrepreneur.

For Religion & Ethics NewsWeekly, this is Fred de Sam Lazaro in Goma, Democratic Republic of Congo.

LUCKY SEVERSON, correspondent: Ray Kurzweil may not be a household name, but the blind know who he is. He invented the first reading machine and then reduced its size to a hand-held gadget. Kurzweil will be remembered more as a man on a mission to tell the world what life will be like in the age of technology. Microsoft billionaire Bill Gates said he is the best in the world at predicting the future, and what a world he predicts.

RAY KURZWEIL: This is a design of a robotic red blood cell. We are going to put these technologies inside us, blood-cell-size devices that will augment our immune system, make us a lot healthier, destroy disease and dramatically push back human longevity, go inside our brains and actually enable us to remember things better, solve problems more effectively. We are going to become a hybrid of machine and our biological heritage. In my mind, we are not going to be transcending our humanity. We are going to be transcending our biology.

SEVERSON: Kurzweil has written several books. One of the most recent, called “The Singularity Is Near,” predicts that by the year 2050 nonbiological artificial intelligence will surpass human intelligence, creating a hybrid of man and technology.

KURZWEIL: What I am predicting is that we will have machines—we are going to need a different word because these are not like the machines we are used to. These are going to be machines that will seem as human, as real, as conscious, as any actual human being.

SEVERSON: Even if nonbiological or artificial intelligence created in places like MIT is not as close to “singularity” or matching human intelligence, as Kurzweil believes, it’s close enough that scientists and ethicists are now saying we need to take a serious look at its ramifications. Professor Christian Brugger is a bioethicist at Saint John Vianney Theological Seminary in Denver. Brugger disagrees with Kurzweil that humans can ever come close to perfection with technology.

PROFESSOR CHRISTIAN BRUGGER (Saint. John Vianney Theological Seminary): I don’t think that the technology is the problem. What I have concerns about is the philosophy that stands behind it, the idea that somehow we are going to be able to overcome human limitation or we’re going to overcome death.

SEVERSON: What troubles Brugger the most is the notion that technology will one day replace God.

BRUGGER: If we start to think about technology as a kind of savior, is it going to overcome our misguided ambitions? Is it going to overcome those kinds of prejudices that cause us to hate our neighbor? To many of us who follow a religion, we’d say that God would help us to overcome those things.

SEVERSON: Kurzweil argues that it’s human nature for mankind to utilize technology to overcome human limitations.

KURZWEIL: We are the species that does change ourselves. We didn’t stay on the ground. We didn’t stay on the planet. We didn’t stay with the limits of our biology. If you want to speak in religious terms you can say that’s what God intended us to do.

SEVERSON: Kurzweil bases his predictions on what he calls the exponential growth of artificial intelligence in the fields of genetics, nanotechnology, and robotics.

KURZWEIL: Informational technology is growing exponentially, not linearly. Our intuition says it grows like this: 1, 2, 3, 4, 5—thirty steps later you’re at 30. The reality is that it grows 2, 4, 8, 16, and 30 steps later you are at billion.

(giving a speech): When I was a student at MIT, I went there because it was so advanced at that time it actually had a computer, and it costs tens of millions of dollars. It took up half a building. The computer that I carry around and that we all carry around is a million times less expensive. It’s a thousand times more powerful.

SEVERSON: John Donoghue is a professor of neuroscience and engineering and director of the Brown University Institute for Brain Science. He says his work has not progressed exponentially. But in only 10 years he’s been able to implant sensors in the brains of paralyzed patients enabling them to operate a computer, type, run a robotic limb simply by thinking, sending out brain signals.

PROFESSOR JOHN DONOGHUE: The value of the technology is first for people who are severely paralyzed. The first step is to give them any control at all. They can’t do anything without help from someone else. People want and feel some sense of pride in taking care of themselves so anything we can restore is a great step.

SEVERSON: Neuroscience has yielded other life altering advances. For instance, there are now over 75,000 Parkinson patients worldwide who’ve had tiny electrodes implanted in their brains. Doctors say the operation significantly reduces tremors and allows patients to rely less on medications.

KURZWEIL: By the way, nobody is picketing, protesting, oh, people putting computers in their brains—that that is somehow unnatural or defies the way things should be.

SEVERSON: Bioethicist Brugger worries that science will soon cross the line to where brain implants will not simply heal patients, but enhance their ability to think and compete.

BRUGGER: If we move in this direction of radical human enhancement, are we going to develop those who are and those who aren’t? The enhanced and the unenhanced? I mean, Lord, we can’t even find the money to get everyone braces who needs braces.

KURZWEIL: When the technologies are only affordable by the rich they actually don’t work very well. Consider mobile phones. Fifteen years ago somebody took out a mobile phone in the movie. That was a signal this person is very powerful and wealthy, and they didn’t work very well. Now 5 billion people out of 6 billion have mobile phones, and they actually work pretty well.

COLIN ANGLE (CEO of iRobot): A lot of people worry about one day there will be a knock on the door, and there will be a robot, and you would say where did that come from? And I will tell you that the future is going to be much stranger.

SEVERSON: Colin Angle is the cofounder and CEO of iRobot, better known as the creator of the Roomba, the floor cleaning robot or the PackBot robot used to disarm roadside bombs in Iraq and Afghanistan, and soon to be released—robots that can keep track of grandma and remind her when it’s time to take her meds.

ANGLE: We call it a physical avatar, and so that these robots would allow a doctor to visit a patient in their own home without ever having to leave his doctor office. These robots are meant to be surrogates for people, so the personality of the doctor will be the personality of the robot.

BRUGGER: I think that iRobots are wonderful, if they can do the vacuuming for me so I can read a good book. I’m happy with that. But iRobots are not my wife, and they are not my children. They are not even an animal.

SEVERSON: Angle doesn’t believe robots will ever replace humans, but he says notwithstanding the science fiction stories of robots run amok, society needs them.

ANGLE: Throughout history there are many different situations where technology exists and can be used for good or evil, and I think that as robots become more capable we need to be careful about using robots to help society.

DONOGHUE: The classic scary story is “The Matrix,” of course, where you plug in and you live in this other reality.

SEVERSON: The reality where computers take over the world:

(from the movie “The Matrix”): “We marveled at our own magnificence as we gave birth to AI.” “AI? You mean artificial intelligence?” “A singular consciousness that spawned an entire race of machines. We don’t know who struck first, us or them.”

SEVERSON: Kurzweil himself worries about technology falling into the wrong hands.

KURZWEIL: The same technologies that are being used to reprogram biology away from heart disease and cancer, presumably good things, could be deployed by a bioterrorist to reprogram a biological virus to be more destructive, and that’s actually a specter that exists right now.

SEVERSON: He says he’s working with the military to develop a system to detect rogue viruses, something like the virus protection found in today’s computer software. But he sees the good society can gain from artificial intelligence far outweighing the bad.

KURZWEIL: That was the family religion. It was personalized: You, Ray, can find the ideas that will change the world.

SEVERSON: Kurzweil has patented over two dozen inventions, including the first music synthesizer, which he sold to Stevie Wonder. President Clinton awarded him the National Medal of Technology, and few have more faith in technology than Ray Kurzweil.

KURZWEIL: Computers are already better than humans at logical thinking. It is our emotional intelligence, the ability to be funny, to get the joke—that is the cutting edge of human intelligence. That’s the most sophisticated, complicated thing we do, and that’s exactly the heart of my prediction that these computers will match us in emotional intelligence, which includes our whole moral system.

BRUGGER: I don’t think that will ever be reached because now we are dealing in the realm of the spirit. If the entire realm of the spirit that has been spoken about in the history of poetry and literature and philosophy and theology is reducible to electrical synapse, then we can reproduce it eventually in a machine, because electricity is at the basis of the machine. I deny that premise. I think that there is more to human beings than reducible to measurable stimuli, and in that regard I don’t think that machines are ever going to be able to be human.

SEVERSON: Undaunted by his critics and skeptics, Kurzweil is so convinced that artificial intelligence will one day enable man to live forever he is doing everything he can to be around when it happens.

SONYA KURZWEIL (making a toast): Well, here’s to living forever. That’s not just a salutation in our family.

KURZWEIL: I want to live indefinitely, and actually I think we all do. People say, oh, I don’t want to live forever, 100 would be great. When they get to 100, they don’t want to die tomorrow.

SEVERSON: Kurzweil is so determined to live “indefinitely.” He takes as many as 200 supplements each day, says this regimen made it possible to reverse both his diabetes and his age. His most recent full-blown checkup results show he has the body and mind of a 40-year-old. Kurzweil is 62 and striving for immortality.

For Religion & Ethics NewsWeekly, I’m Lucky Severson in Boston.