Transcripts For WHUT Religion Ethics Newsweekly 20130811 :

Transcripts For WHUT Religion Ethics Newsweekly 20130811

Build for peace and mitigate conflict, we have to understand the religious dimensions of all of those sectors and frankly in the past we probably havent had the capacity we should have in our diplomacy. He said they will not shy away from addressing the places where religion is part of the problem. Its not just dealing with the good religious people and ignoring the negative aspects of religious, religion in politics. So its going to be very dicey, its going to be very complicated. We have solve some sophistication about how to engage. Particularly in those areas where religion may be a source of conflict. In other news, humanitarian officials are sounding the alarm about the impact of a massive drought in a subsarahan nation of namibia. Unicef, the United Nations childrens agency, said 100,000 children are at risk of malnutrition. Namibia is suffering the worst drought in 30 years, with women and children bearing the brunt. The countrys president has declared a state of national emergency. At the vatican, pope francis continued urging catholics to reject consumererism. Again this week he said wealth doesnt bring true happiness. Some conservative catholics are voicing concern that francis doesnt spend enough time publicly condemning abortion. But prominent boston cardinal, sean omalley, defended the pope. Saying the emphasis on loving compassion provides the context for the churchs stand against abortion. He said quote, we oppose abortion, not because were mean and oldfashiod, but because we love people and that is what we must show the world. We have a report today on the ethics of genome sequencing. Finding out a childs entire genetic makeup. That could reveal defects that might cause disease or disabilities later in life. But should doctors tell parents everything they find out . Would parents even want to know . Lucky severson has our story. 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, who knew from the beginning that something was terribly wrong with liam. I knew something was wrong. Because the breathing, he couldnt eat at the same time. He couldnt drink and breathe at the same time. 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. I wanted to at least 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. For 12 agonizing years, kathleen was looking for an answer. And recently got one from dr. Ian krants at the Childrens Hospital of philadelphia. Who had sequenced liams genome. 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 were understanding it, how to treat it better. The discovery of liams genetic defect underscores how rapidly and how important the science of sequencing the human genome has become in modern medicine. Especially when did comes to children when researchers first mapped the human genome, it took almost ten years and cost 3 billion. That was less than ten years ago. Today, the process takes three weeks, and the pricetag is rapidly approaching 1,000. Nancy spinner heads a division of genomic diagnose sticks at Childrens Hospital of philadelphia. For parents whose kids have some serious birth defects or congenital abnormalities. You really want to understand whats 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, they say, was it something i did in the pregnancy. Dr. Krants and nancy spinner are the husbandandwife team who are the principal investigators. Unlike earlier genetic tests, sequencing the genome reveals a childs 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. Now were 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. The problem were having now is there are no guidelines to say what should be reported back. Who should be tested, who shouldnt be tested. Who should be told. Who should be told about this information, exactly. Were 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 shortterm affect parental decisions, reproductive decisions, it can affect lifestyle choices later on. Theres already been examples of people who have been tested, seen a predisposition to diabetes and starts to immediately get screened for it. And find that you know, find out that they have diabetes much earlier. That can save many dollars in Health Care Costs because you can start, you can treat things before they become bad. Scientists say 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 alzheimers . For which there is no known cure . And weve already seen some cases where we find some things that are damaging. That tell you that youre at very, very high risk for an adultonset disorder thats going to be bad. And theres no treatment. So we cant really think of a reason to give that information to people. And i think right now, were trying to learn what should we be giving and what shouldnt we be giving. 0 our main goal is not to cause any harm or additional stress to families. The Hunter Family in new jersey wanted any information they could get about their 14yearold daughter, amanda. She suffers from Crohns Disease and serious Cognitive Impairment and her condition appeared to be regressing. Like all children, amandas genome contains 22,000 genes that holds tantalizing information that could save or prolong her life. Her mother, laurie, wanted some answers. I love that people are able to say it is what it is. Until youre living in that world. And the motherly instinct tells you somethings not right. Youre going to stop at nothing until you find out what you can do to help that child. What if you test for one thing and find Something Else . When amandas genome was sequenced, doctors discovered what they call an incidental finding, something they werent looking for. A deletion. Seven genes missing from a chromosone. The deletion didnt explain her imparent, but it indicated she was susceptible to cancer. And then her mom got some news that may have saved her life. 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 carry the same deletion. So ive gone through the same series of tests. I had a full body mri. They found a lesion just above my diaphragm. Its a slowgrowing cancer and treatable, if detected early enough. When they told me that what they found had no explanation for the issues i was concerned about, my Immediate Reaction was i wish that i hadnt known. 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. She gave birth to her second daughter, kaelin, after undergoing a test which erroneously showed that kaelin was normal. Laurie knew the first week that kaelin was not normal. And after doctors sequenced her genome, she learned that kaelin has a rare, nonhereditary disease called wolf syndrome. Her 4yearold son, ryans genome has also been sequenced and he appears to be in good health. For some parents, gaining knowledge of their childrens 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. We have some patients who have we followed who have used it for prenatal diagnosis, in such a way to avoid having affected children. Dr. Krants and nancy spinner are most concerned that the science has few guidelines. Including safeguards for patients privacy. We live in a capitalistic society. Often when something is technically feasible and fiscally feasible. It is offered and there are forprofit company who is are offering this testing to the individuals. So you can go out, yourself, and pay t money and get your genome sequenced. The problem now is the 1,000 genome, but its the 1 million interpretation. Because can you get the sequence, but understanding what it does takes hundreds of hours of manpower to interpret and understand. And were not even that good at it. As for dr. Krants and his wife nancy and their three children i have to say neither nancy or i or anyone in our family has had their genome sequenced yet. And not because we wouldnt be interested, but i dont think we really subscribe to the recreational sequencing of genomes. If there was a medical concern, i dont think we would hesitate. For kathleen, even though the news about liam was not good, just knowing seems to have made a huge difference. I think its a miracle, because i waited so long. And as he was getting sicker, i didnt want him to pass away. Because i would feel so guilty that i didnt do everything i could have. Now that i have a name. I now theres no cure for him, but he can help so many other kids. Its the promise of help for kids like liam that drives the science that is going so fast, the roadmap with guidelines and warning signs cant keep up. And as the technology progresses, the ethical issues will become even more difficult. For religion ethics newsweekly, im lucky severson in westchester, pennsylvania. Grammy awardwinning artist, bobby mcferrin, is probably best known for his 1980s feelgood hit dont worry, be happy. But hes also a composer and conductor who has released albums in a variety of genres. Hes delving into religious music with his latest project. It includes fra diggsal africanamerican spirituals and religious songs. I spoke to him about music and faith. Swing low sweet chariot tentime grammy awardwinning artist, bobby mcferrin, believes music has a transcendent power. Have you ever listened to a piece of music and for some reason, you just cant understand, you simply burst into tears . Music has a way of communicating in a way that language does not. It can go past language. In his concert, the genreblending artist is known for his unique style of wordless improvisations, using his voice and his body as accompanying instrument. Im not so much into people being wowed over my technique or what i can do. Stuff like that. Thats just a vehicle for me. Thats just a vehicle for my spirit. Mcferrin says his Christian Faith permeates everything he does. But its particularly evident in his new album spirit yall which includes his interpretation of classic africanamerican spirituals and several devotional songs that he wrote. The project honors the legacy of his father, Robert Mcferrin senior, the first africanamerican to sing a title role at the metropolitan opera. His senior mcferrin also released an album of spirituals, deep river in 1957. I never heard my father pray. I know that he got on his knees many times before i went to bed at night and prayed. But i always heard him pray whenever he sang these spirituals. Every time i see his face mcferrin says songs like every time i feel the spirit still resonate today. I certainly try to pray them as im singing them. Thats important. And the hope is that when people hear these pieces, that theyll carry them home with them and then theyll inspire them to begin a spiritual journey or to continue on it. Mcferrin, whose grandfather was a baptist minister, grew up in the episcopal church. When i was 16, i wanted to become a monk. A catholic monk . An anglican monk. In the anglican church, the episcopal church. I was very attracted to the life of quiet structure. He says he gave up on the idea in his early 20s, when he realized he was meant to be a singer. But the religious impulses remain. Im still a very quiet guy. And i love the scriptures, i still read the bible through, you know, over and over and over again. Because you always find things there. You know, that you hadnt seen before. I could read the same verse 1,000 times, but the 1,001st time i read it, ill find something in it i hadnt seen before. Mcferrin says when hes not traveling, he attends an episcopal church. But he doesnt like narrow labels. I dont really think of myself as a religious person per se, but more of a spiritual person, who follows christ, who follows jesus as my spiritual master. Dont worry be happy the 63yearold musician is perhaps best known for his 1988 hit, dont worry, be happy. In subsequent years, hes conducted classical orchestras and released albums featuring styles from across the musical spectrum. He frequently works with young people, trying to help them see the power of music as well. Its a lesson he says he learned at an early age. My moer knew all about this when i was very young, my mother knew how music was a healing balm. Because whenever i was sick, she would give me two things. She would give me medicine for my aches and pains and she would give me music for my spirit. Theres been times when i walked on stage ill, not thinking i could actually go on and do my performance. And i would walk offstage well. Music does have incredible power to rearrange your insides, you know. Rearrange your thoughts. Heal your body. Mcferrin says he sees the spiritual all around him. Just being is a religious experience. The spiritual experience. Just being is holy. The lord is my shepherd mcferrins Favorite Book in the bible is the psalms. Several years ago he wrote a song based on the psalm 23. But in his version, the love of god takes on a feminine form. She rights my wrongs the song has been adopted by choirs across the country, including this one called singing quaker women plus other faithful friends. Mcferrin says the song was inspired after he and his choir were rehearsing in a church and began discussing the many male images in the bible. This seemed to make sense, people forget you know, a fathers love and then theres a mothers love, which complements the fathers love and they fit together nicely. So thats why i wrote it. The new album has a song he wrote based on psalm 25, verse 15. Well you know the mind is forever on the lord spiritual also includes another feminine reference to god. Shes got the whole world in her hands in his concerts such as this one at st. Lewiss concert hall, mcferrin always encourages the audience to sing along. Often pulling people up on the stage to join him. I like to think that regardless of how you come into the concert hall, at the beginning, youll leave differently. I think thats part of my Job Description as an artist. Is moving people to make important changes in their lives. Another part of his Job Description he says, is moving people to joy. If theres any one thing i want, its for people to feel that sense of joy. The joy that i feel just being able to sing. And getting a roomful of strangers to sing together . What a joyful experience that is for me. I love it. Im leaning on your arm, yes indeed, lord mcferrin says he believes god speaks through his music. But he says that doesnt make him unique. God doesnt speak through me and not through you for some reason. He speaks to everyone. And we in turn, can open up our mouths or open up our hands or our minds or whatever, our profession, and let god speak through us to other people. My father used to say the lord has entrusted me with a talent. Its not my gift. The lord has entrusted me with a talent and i absolutely feel that way. That hes given me this gift to share with other people. To uplift hearts. I feel better so much better since i let he said while his new album comes out of his Christian Faith, he says those of other faiths he hopes will be uplifted by his spirit. [ cheers and applause ] tributes flooded in this week for robert bellah, the prominent socialologist of religion who died at the age of 86. The longtime professor at the university of california berkeley was widely respected for his study of the role of religion in public life. And particularly, americas tradition of civil religion. Among his bestknown works was the influential habits of the heart First Published in 1985, and still required reading in Numerous University programs. Finally, on our calendar, on august 15th, japanese buddhists observe obon, and also on august 15th, roman catholics celebrate the assumption of the virgin mary. Which they believe mary at the end of her life on earth was assumed into heaven, body and soul. And there are more mary celebrations this week in carthage, missouri, where tens of thousands of mostly vietnamese catholics gather where they offer thanks for the freedoms they have in america. Thats our program for now, im kim lawton, you can follow us on twitter and facebook where id love to connect with you as well. Watch us any time on the pbs app for iphones and ipads and visit our website, where theres always much more, including audio and video podcasts of this program. Join us at pbs. Org. As we leave you, more music from bobby mcferrin. [ cheers and applause ] major funding for religion ethics newsweekly is provided by the lilttlly endowment. An indianapolisbased private family foundation, dedicated to its founders interest in religion, Community Development and education. Additional funding also provided by mutual of america. Designing customized individual and Group Retirement products. Thats why were your retirement company. And the corporation for public broadcasting. And welcome to beautiful charlotte, north carolina, where the homecoming family has gathered for an oldfashioned tent revival homecoming. How marvelous. Filmed on the grounds of the historic billy graham library, this musical celebration honors the long tradition of tent revivals that impacted countless lives throughout the 1950s and 60s. Yes, i need thee every hour. We were joined by some very special guests who were there at the very start of the tent revival tradition, plus a wonderful lineup of renowned artists, featuring . And many more. Gaither music group is pleased to present tent revival homecoming. All come ye sinners, lost and lonely. Jesus blood can make you free, for he saved the worst among you when he saved a wretch like me. And i know, yes, i know jesus blood can make the vilest sinner cle

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