Four random articles.
Jul. 7th, 2007 01:02 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
conuly
One on abortion and genetic testing by Amy Harmon
Genetic Testing + Abortion = ???
By AMY HARMON
SARAHLYNN LESTER, 32, considers herself a supporter of abortion rights. She gives money to the National Abortion Rights Action League and volunteers for Planned Parenthood.
But as a woman who continued a pregnancy after learning that her child would have Down syndrome, she also has beliefs about the ethics of choosing, or not choosing, certain kinds of children.
“I thought it would be morally wrong to have an abortion for a child that had a genetic disability,” said Ms. Lester, a marketing manager in St. Louis.
As prenatal tests make it possible to identify fetuses that will have mental retardation, deafness, early-onset Alzheimer’s disease and a range of other conditions, such personal deliberations are adding a new layer to the fraught political debate over abortion.
Abortion rights supporters — who believe that a woman has the right to make decisions about her own body — have had to grapple with the reality that the right to choose may well be used selectively to abort fetuses deemed genetically undesirable. And many are finding that, while they support a woman’s right to have an abortion if she does not want to have a baby, they are less comfortable when abortion is used by women who don’t want to have a particular baby.
“How much choice do you really want to give?” asked Arthur Caplan, chairman of the department of medical ethics at the University of Pennsylvania School of Medicine. “That’s the challenge of prenatal testing to pro-choicers.”
For many women and their partners, the decision to terminate a pregnancy after a prenatal diagnosis of a serious genetic defect can be harrowing, often coming after a painful assessment of their own emotional and financial resources.
And there is widespread support for such an option: 70 percent of Americans said they believe that women should be able to obtain a legal abortion if there is a strong chance of a serious defect in the baby, according to a 2006 poll conducted by the National Opinion Research Center.
“This issue underscores the importance of families making personal, private decisions without political interference,” said Nancy Keenan, president of Naral Pro-Choice America, in a statement. “The decision should be with women, their families, and their doctors.”
But as more tests become available for conditions that do not involve serious disabilities, childhood diseases or death in early childhood, the emerging ethical questions may inject more nuance into a perennially polarized discussion.
“It will capture where the mainstream of Americans are on prenatal testing and abortion,” Dr. Caplan added. “Which is, some reasons seem good, and some don’t.”
Traditional anti-abortion advocates, from conservative politicians to Pope Benedict, have in recent months criticized the growing use of prenatal testing as a subtle form of eugenics. But the specter of fetuses being selectively targeted for elimination also has the potential to disturb solid supporters of abortion rights.
Some disabilities rights advocates, for example, are pressing the need to reconcile protecting abortion rights with a democratic imperative to embrace human diversity.
“If the response is simply, ‘You all are just anti-women’s-right-to-choose,’ I think that misses some of the important disabilities rights issues that are being raised,” said Andrew Imparato, president of the American Association of People With Disabilities.
Mr. Imparato said he was disturbed to learn recently that in several states with legislative efforts to restrict abortion rights, groups like Planned Parenthood often lobby for an exemption for women who learn their child would have a disability.
But he said that the person who alerted him was a Planned Parenthood lobbyist who was herself troubled by the tactic because it seemed to run counter to the progressive political agenda that supports both choice and tolerance of human difference.
“You’ve got these two basic liberal values on a kind of collision course,” said Rayna Rapp, an anthropologist at New York University who has studied attitudes toward prenatal testing.
Ms. Rapp argues that it doesn’t need to be that way. One solution, she said, is to make sure the world is a more welcoming place for people with disabilities. Other disabilities rights advocates emphasize the need to educate prospective parents about the positive aspects of raising disabled children.
Still, social policy may be unable to sway a seemingly strong personal preference for avoiding children with perceived genetic defects. About 90 percent of women who learn they are carrying a fetus with the extra 21st chromosome that causes Down syndrome choose an abortion. Studies have shown that many women choose to abort for diagnoses of less serious conditions.
And a growing number of fertile couples are using in vitro fertilization to gain greater control over the genetic makeup of their children. Under a procedure known as preimplantation genetic diagnosis, doctors screen embryos for a high risk of developing breast cancer or arthritis, and implant only embryos with the desired genetic makeup.
The questions may only become murkier if testing extends to traits like homosexuality or intelligence.
But Kirsten Moore, president of the pro-choice Reproductive Health Technologies Project, said that when members of her staff recently discussed whether to recommend that any prenatal tests be banned, they found it impossible to draw a line — even at sex selection, which almost all found morally repugnant. “We all had our own zones of discomfort but still couldn’t quite bring ourselves to say, ‘Here’s the line, firm and clear’ because that is the core of the pro-choice philosophy,” she said. “You can never make that decision for someone else.”
The rhetoric of “choice,” however, can take on a more troubling resonance when it comes to selecting children with new reproductive technologies, disabilities rights advocates say. “It so buys into this consumer perspective on our children,” said Marsha Saxton, a senior researcher at the World Institute on Disability in Oakland, Calif., who is an abortion rights supporter.
With a new, more conservative Supreme Court, which has just upheld a law banning a procedure critics call partial-birth abortion, disabilities rights advocates say they fear that the reproductive rights movement sees such discussions only as an opening to abortion opponents.
“The fear is that this will be used as an excuse to limit women’s access to abortion,” said Sujatha Jesudason, associate director of the Center for Genetics and Society, a nonprofit group promoting limits on reproductive technology. “But as these selective technologies are getting popularized we need to try to agree on a set of principles without giving up the fight for reproductive rights.”
If that doesn’t happen, some abortion rights supporters say they are worried that their opponents may hijack the discussion.
“Some religious conservatives say that they trust God to give them the child that is meant to be,” wrote Ann Althouse, a law professor in Madison, Wis., who identifies herself as an abortion rights supporter on her legal blog. “But isn’t there something equivalent for social liberals? Shouldn’t they have moral standards about what reasons are acceptable for an abortion?”
Another one by Amy Harmon, this one on knowing our genetic code.
6 Billion Bits of Data About Me, Me, Me!
By AMY HARMON
JAMES D. WATSON, who helped crack the DNA code half a century ago, last week became the first person handed the full text of his own DNA on a small computer disk. But he won’t be the last.
Soon enough, scientists say, we will all be able to decipher our own genomes — the six billion letters of genetic code containing the complete inventory of the traits we inherited from our parents — for as little as $1,000.
Just what we will do with the essence of who we are once we bottle it, however, is likely to be as much a social experiment as a scientific one.
As thousands of people decode their DNA over the next few years, they are likely to find themselves facing a genetic mirror whose reflection changes on an almost daily basis.
The more genomes that scientists have to work with, the more they can learn about them. So staying on top of your own health outlook may begin to resemble checking the performance of your stock portfolio. One day you find you have a gene that puts you at risk for diabetes; the next it’s one that may make you live longer.
“Nobody quite knows how to manage expectations in such a rapidly changing and deeply personal field,” said George M. Church, a Harvard Medical School geneticist who directs the Personal Genome Project. “The picture is getting more and more complete, but along the way there’s going to be a lot of, ‘You told us this last week and now you’re telling us this!’ ”
By the end of the summer, Dr. Church’s research project promises to deliver sequences to its first 10 volunteers. Unlike Dr. Watson, whose complete genome cost $1 million, the project’s volunteers will receive the one percent of their genome currently deemed most useful at a cost of $1,000.
One start-up company, 23andme, recently announced plans to provide affordable chunks of their DNA to individual consumers, along with tools to help them keep track of and understand their genetic information.
And technology companies like Illumina, Applied Biosystems and 454 Life Sciences, which solicited Dr. Watson’s DNA to prove its abilities, say the price of a complete human genome has already dropped to $100,000. They are competing for a $10 million “X prize” to sequence 100 human genomes within 10 days. (Dr. Watson’s took about two months.)
Those who have signed up to be sequenced as part of the competition include Paul Allen, co-founder of Microsoft; the astrophysicist Stephen Hawking; the television interviewer Larry King; and the financier Michael Milken.
“It’s the start of an era of comparative individual genomics,” said J. Craig Venter, who as president of the Celera Corporation sequenced much of his own genome in 2000 and recently completed it. “Hopefully we’ll have tens of thousands to compare in the next year or two.”
Dr. Venter said he consulted his genetic profile every time a new announcement of a gene discovery came out. Just last month, having read a report in this newspaper about a gene that raises the risk of heart disease, he found that he indeed carried the mutation.
He might have guessed that from his family history, but knowing his individual risk, rather than a statistical average, is a stronger motivator to change, Dr. Venter said. Because of another risk gene he carries for heart disease, he altered his diet and has been taking a cholesterol-lowering drug for several years.
“Now we can do something to alter what might have been our genetic destiny,” he added.
Beyond heart disease, there are a growing number of genes already known to influence predispositions to common diseases like breast and colon cancer, depression and dementia.
There are other reasons to unravel your genome. Embracers of nature over nurture may sift through their 20,000 genes to find an explanation for personality traits thought to have a partial genetic basis — like early rising, risk-taking, shyness and addiction.
And the curiosity is unlikely to be restricted to our own genetic code. A generation of personally motivated amateur geneticists may seek out others who have similar traits and similar quirks in their genetic code, hoping to deduce a connection.
Friends and families, too, may begin to compare notes.
“You can imagine a family who won’t let someone marry their daughter until they examined her prospective husband’s genome,” Dr. Watson suggested at a news conference on Thursday. “You’ll want to know what your mate is going to have.”
The mate, of course, may not want to know himself. Dr. Watson told the company that sequenced his genome not to reveal to him the status of one gene known to predispose people to Alzheimer’s disease. “Who wants to know that?” he said.
But Dr. Watson, 79, may yet learn that his genome contains Alzheimer’s risk genes that may be discovered tomorrow or next month or next year. On the other hand, he may find that he carries genes that offset the risk. Or both.
Moreover, because the way genes influence health and behavior depends heavily on their interaction with the environment, what our genome can tell us may change depending on lifestyle choices.
People who learn they carry a higher genetic risk of Type II diabetes, for instance, may see that risk increase if they start to gain weight. A gene that makes it difficult for some people to sweat in extreme heat might not matter to you if you live in Seattle. But if you are thinking of moving to Miami, knowing it exists in your genome could prove useful.
The lack of established medical authorities to interpret or filter such information could cause deep discomfort, some experts caution. And the technology is quickly outpacing social debate over how it should be handled.
“Some people are going to have information that they don’t know what to do with,” said Angela Trepanier, president elect of the National Society of Genetic Counselors. “And that can do more harm than good.”
Still, the early boosters of the personal genome say the best bet for improving individual health care is not only to embrace genetic knowledge about ourselves, but to share it with others.
If hundreds of thousands of people make their genomes public — along with personal information about their ancestry, their health history, what they look like, what they do and where they live — they argue, scientists will finally be able to draw meaningful correlations between variations in DNA sequence and any trait that has even a partial genetic basis, from what drugs we should take to what foods we like to eat.
As that happens, everyone with a sequenced genome will learn how the new findings affect them.
“Let’s sequence prominent Texans,” Dr. Watson said at the press conference in Houston last week. “What we really want now is a lot of data.”
Until then, even Dr. Watson, who posted his genome on the Internet last week, has to wait. At a ceremony marking the occasion, he stared at the disk containing his genome for a few seconds, then stuck it in his pocket.
A fascinating one on shamanism in Korea.
Shamanism Enjoys Revival in Techno-Savvy South Korea
By CHOE SANG-HUN
SEOUL, South Korea — Yang Soon-im says she began communicating with the spirits of mountains and ancient warriors more than 50 years ago, when she was only 7. But it was decades after that, when her son miraculously survived a knife wound, that she decided she had no choice but to become the spirits’ full-time channel with the living — a mudang, or shaman.
“I found her sitting on the roof chanting at 4 a.m.,” her husband, Choi Jong-sam, 62, said of that day about 25 years ago. “She was puffing away at four packs of cigarettes. She said her mountain gods had saved our son in a sort of bargain. I slapped her face to help her get her wits back.
“Then her eyes blazed like those of a wild dog about to bite a man.”
The deal Ms. Yang struck with her spirits eventually paid off in other ways. Now 60, she is one of the most sought-after shamans in Seoul — a leading member of a profession that has survived centuries of ridicule and persecution and is now enjoying a seemingly incongruous revival in one of the world’s most technologically advanced countries.
There are an estimated 300 shamanistic temples within an hour of Seoul’s bustling city center, and in them, shamans perform their clamorous ceremonies every day. They offer pigs to placate the gods. They dance with toy guns to comfort the spirit of a dead child. They intimidate evil spirits by walking barefoot on knife blades.
“We used to do our rituals in hiding,” said Ms. Yang, who performs two or three rites on a busy day. “Our customers kept it secret from even their own relatives. Now we have no shame performing in public. I can hardly take three days off a month.”
Korean shamanism is rooted in ancient indigenous beliefs shared by many folk religions in northeast Asia. Most mudangs are women who say they discovered their ability to serve as a mediator between the human and spirit worlds after emerging from a critical illness. They believe that the air is thick with spirits, including those of dead relatives, a fox in the hills behind a village, an old tree or even a stove. These spirits interact with people and influence their fortunes.
So when tradition-minded Koreans are inexplicably sick or have a run of bad luck in business or a daughter who cannot find a husband, they consult a shaman.
“If I contact the spirit of a man who died of stomach cancer, I get stomach pains for days,” said Kim Hong-kyung, 33, who has conducted rituals with Ms. Yang. “If I deal with the spirit of a woman who died during labor, my belly balloons like a pregnant woman’s.”
In an election year like this one, the most famous shamans are fully booked. Politicians, whether Christian or Buddhist, flock to them, asking, for instance, whether relocating their ancestors’ remains to a more propitious site might ensure victory.
“Look around,” said Kim Myung-soon, 41, a mudang who, in a recent ritual, decapitated a chicken with her bare hands. “So much of nature has been ruined. Spirits of trees and rocks are displaced and haunt humans because they have nowhere else to go. No wonder the country is a mess.”
Shamans were demonized by Christian missionaries and driven underground during Japanese colonial rule. The military governments that came after the Korean War disparaged them as charlatans and often banished them from villages, burning their shrines. But today, even many who regard shamanism as superstition acknowledge it to be an important repository of Korean culture, because the rituals have preserved traditional costumes, music and dance forms. Recent governments have documented and promoted the rituals as “intangible cultural assets.”
There are an estimated 300,000 shamans, or one for every 160 South Koreans, according to the Korea Worshipers Association, which represents shamans. They are fiercely independent, following different gods, sharing no one body of scriptures. And they are highly adaptable. When the Internet boom hit South Korea, shamans were among the first to set up commercial Web sites, offering online fortune-telling. Many younger shamans maintain Web logs.
“In our latest survey, we found 273 categories of gods venerated by Korean shamans. If you look into the subcategories, you find 10,000 deities,” said Hong Tea-han, a professor at Chung-Ang University in Seoul who researches shamanism. “Korean shamanism is a great melting pot. It never rejected anything but embraced everything, making endless compromises with other religions and social changes. That explains why it has survived thousands of years.”
There are shamans who venerate Jesus, the Virgin Mary, even Park Chung-hee, the late South Korean military strongman. Under the pro-American military governments of the 1970s, there were shamans who took Gen. Douglas MacArthur as their deity. When MacArthur’s spirit possessed them, they donned sunglasses, puffed on a pipe and uttered sounds that some clients took for English.
“Until perhaps 10 or 15 years ago, we had quite a few shamans who prayed before the MacArthur statue here,” said Aegibosal, a shaman in Inchon, the port city where MacArthur’s troops landed in 1950. “You don’t see any of them any more.”
Shamanism’s eclecticism has influenced Korean attitudes toward religion, helping make South Korea one of the world’s most pluralistic countries — a place where Buddhism, Confucianism and Christianity coexist peacefully and often overlap, said Yang Jong-sung, a senior curator at the National Folklore Museum of Korea.
“Korean shamanism is very, very materialistic and this-worldly, as Koreans tend to be,” the curator said. “I don’t think a Christian pastor can succeed here if he only talks about heaven and does not hint at health and material prosperity.”
In a recent ritual, Ms. Yang and two associates spent hours carefully stacking their altar with fruits, dried fish and rice cakes. They decorated their room with portraits of gods and unpacked a suitcase full of brightly colored costumes they changed into at different stages of the rite.
Their customer, a 51-year-old nurse, wanted the shamans’ help in getting a divorce from her unfaithful husband. Instead, for 5 million won, or $5,400, the shamans promised to help them reconcile.
Ms. Yang’s diagnosis: the husband had turned into a “horsefly that sucks bone marrow out of your spine,” because the couple had been cursed by a baby she had aborted, an uncle who committed suicide and a well her family had filled years before.
Ms. Yang and the nurse embraced and sobbed when the nurse’s dead mother, whom she had not mentioned to the shamans, spoke through Ms. Yang. Then Ms. Yang’s younger associate, Chung Joon-ha, 42, a former army sergeant, danced with knives and a lump of raw pork in his mouth, his eyes rolling back into their sockets.
“We are like a hospital,” he later said. “We do surgery on people’s bad luck.”
And one on modern librarians
A Hipper Crowd of Shushers
By KARA JESELLA
ON a Sunday night last month at Daddy’s, a bar in Williamsburg, Brooklyn, more than a dozen people in their 20s and 30s gathered at a professional soiree, drinking frozen margaritas and nibbling store-bought cookies. With their thrift-store inspired clothes and abundant tattoos, they looked as if they could be filmmakers, Web designers, coffee shop purveyors or artists.
When talk turned to a dance party the group had recently given at a nearby restaurant, their profession became clearer.
“Did you try the special drinks?” Sarah Gentile, 29, asked Jennifer Yao, 31, referring to the colorfully named cocktails.
“I got the Joy of Sex,” Ms. Yao replied. “I thought for sure it was French Women Don’t Get Fat.”
Ms. Yao could be forgiven for being confused: the drink was numbered and the guests had to guess the name. “613.96 C,” said Ms. Yao, cryptically, then apologized: “Sorry if I talk in Dewey.”
That would be the Dewey Decimal System. The groups’ members were librarians. Or, in some cases, guybrarians.
“He hates being called that,” said Sarah Murphy, one of the evening’s organizers and a founder of the Desk Set, a social group for librarians and library students.
Ms. Murphy was speaking of Jeff Buckley, a reference librarian at a law firm, who had a tattoo of the logo from the Federal Depository Library Program peeking out of his black T-shirt sleeve.
Librarians? Aren’t they supposed to be bespectacled women with a love of classic books and a perpetual annoyance with talkative patrons — the ultimate humorless shushers?
Not any more. With so much of the job involving technology and with a focus now on finding and sharing information beyond just what is available in books, a new type of librarian is emerging — the kind that, according to the Web site Librarian Avengers, is “looking to put the ‘hep cat’ in cataloguing.”
When the cult film “Party Girl” appeared in 1995, with Parker Posey as a night life impresario who finds happiness in the stacks, the idea that a librarian could be cool was a joke.
Now, there is a public librarian who writes dispatches for McSweeney’s Internet Tendency, a favored magazine of the young literati. “Unshelved,” a comic about librarians — yes, there is a comic about librarians — features a hipster librarian character. And, in real life, there are an increasing number of librarians who are notable not just for their pink-streaked hair but also for their passion for pop culture, activism and technology.
“We’re not the typical librarians anymore,” said Rick Block, an adjunct professor at the Long Island University Palmer School and at the Pratt Institute School of Information and Library Science, both graduate schools for librarians, in New York City.
“When I was in library school in the early ’80s, the students weren’t as interesting,” Mr. Block said.
Since then, however, library organizations have been trying to recruit a more diverse group of students and to mentor younger members of the profession.
“I think we’re getting more progressive and hipper,” said Carrie Ansell, a 28-year-old law librarian in Washington.
In the last few years, articles have decried the graying of the profession, noting a large percentage of librarians that would soon be retiring and a seemingly insurmountable demand for replacements. But worries about a mass exodus appear to have been unfounded.
Michele Besant, the librarian at the School of Library and Information Studies at the University of Wisconsin-Madison, said the Association of Library and Information Science statistics show a steady increase in library information science enrollments over the last 10 years. Further, at hers and other schools there is a trend for students to be entering masters programs at a younger age.
The myth prevails that librarians are becoming obsolete. “There’s Google, no one needs us,” Ms. Gentile said, mockingly, over a drink at Daddy’s.
Still, these are high-tech times. Why are people getting into this profession when libraries seem as retro as the granny glasses so many of the members of the Desk Set wear?
“Because it’s cool,” said Ms. Gentile, who works at the Brooklyn Museum.
Ms. Murphy, 29, thinks so, too. An actress who had long considered library school, Ms. Murphy finally decided to sign up after meeting several librarians — in bars.
“People I, going in, would never have expected were from the library field,” she said. “Smart, well-read, interesting, funny people, who seemed to be happy with their jobs.”
Maria Falgoust, 31, is also a founder of Desk Set, which took its name from the 1957 Katharine Hepburn-Spencer Tracy romantic comedy. A student who works part time at the library at Saint Ann’s School, she was inspired to become a librarian by a friend, a public librarian who works with teenagers and goes to rock shows regularly.
Since matriculating to Palmer, Ms. Falgoust has met plenty of other like-minded librarians at places such as Brooklyn Label, a restaurant, and at Punk Rope, an exercise class. “They’re everywhere you go,” she said.
Especially in Greenpoint, where Ms. Murphy and Ms. Falgoust live about 10 blocks from each other and where there are, Ms. Falgoust said, about 13 other librarians in the neighborhood.
How did such a nerdy profession become cool — aside from the fact that a certain amount of nerdiness is now cool? Many young librarians and library professors said that the work is no longer just about books but also about organizing and connecting people with information, including music and movies.
And though many librarians say that they, like nurses or priests, are called to the profession, they also say the job is stable, intellectually stimulating and can have reasonable hours — perfect for creative types who want to pursue their passions outside of work and don’t want to finance their pursuits by waiting tables. (The median salary for librarians was about $51,000 in 2006, according to the American Library Association-Allied Professional Organization.)
“I wanted to do something different, something maybe more meaningful,” said Carrie Klein, 36, who used to be a publicist for a record label and for bands such as Radiohead and the Foo Fighters, but is now starting a new job in the library at Entertainment Weekly.
Michelle Campbell, 26, a librarian in Washington, said that librarianship is a haven for left-wing social engagement, which is particularly appealing to the young librarians she knows. “Especially those of us who graduated around the same time as the Patriot Act,” Ms. Campbell said. “We see what happens when information is restricted.”
Ms. Campbell added that she became a librarian because it “combined a geeky intellectualism” with information technology skills and social activism.
Jessamyn West, 38, an editor of “Revolting Librarians Redux: Radical Librarians Speak Out” a book that promotes social responsibility in librarianship, and the librarian behind the Web site librarian.net (its tagline is “putting the rarin’ back in librarian since 1999”) agreed that many new librarians are attracted to what they call the “Library 2.0” phenomenon. “It’s become a techie profession,” she said.
In a typical day, Ms. West might send instant and e-mail messages to patrons, many of who do their research online rather than in the library. She might also check Twitter, MySpace and other social networking sites, post to her various blogs and keep current through MetaFilter and RSS feeds. Some librarians also create Wikis or podcasts.
At the American Librarian Association’s annual conference last month in Washington, there were display tables of graphic novels, manga and comic books. In addition to a panel called “No Shushing Required,” there were sessions on social networking and zines and one called “Future Friends: Marketing Reference and User Services to Generation X.”
On a Saturday, after a day of panels, a group of librarians relaxed and danced at Selam Restaurant. Sarah Mercure nursed a blueberry vodka and cranberry juice and talked about deciding on her career after hearing a librarian who curated a zine collection speak. Pete Welsch, a D.J., spun records and talked about how his interest in social activism, film and music led him to library school.
But some librarians have found the job can be at odds with their outside cultural interests.
“I went to see a band a few weeks ago with old co-workers and turned to one and said ‘Is it just me or is this really, really loud?’ ” said Ms. Klein, the former publicist. Her friend, she said, “laughed and said, ‘You have librarian ears now.’
Genetic Testing + Abortion = ???
By AMY HARMON
SARAHLYNN LESTER, 32, considers herself a supporter of abortion rights. She gives money to the National Abortion Rights Action League and volunteers for Planned Parenthood.
But as a woman who continued a pregnancy after learning that her child would have Down syndrome, she also has beliefs about the ethics of choosing, or not choosing, certain kinds of children.
“I thought it would be morally wrong to have an abortion for a child that had a genetic disability,” said Ms. Lester, a marketing manager in St. Louis.
As prenatal tests make it possible to identify fetuses that will have mental retardation, deafness, early-onset Alzheimer’s disease and a range of other conditions, such personal deliberations are adding a new layer to the fraught political debate over abortion.
Abortion rights supporters — who believe that a woman has the right to make decisions about her own body — have had to grapple with the reality that the right to choose may well be used selectively to abort fetuses deemed genetically undesirable. And many are finding that, while they support a woman’s right to have an abortion if she does not want to have a baby, they are less comfortable when abortion is used by women who don’t want to have a particular baby.
“How much choice do you really want to give?” asked Arthur Caplan, chairman of the department of medical ethics at the University of Pennsylvania School of Medicine. “That’s the challenge of prenatal testing to pro-choicers.”
For many women and their partners, the decision to terminate a pregnancy after a prenatal diagnosis of a serious genetic defect can be harrowing, often coming after a painful assessment of their own emotional and financial resources.
And there is widespread support for such an option: 70 percent of Americans said they believe that women should be able to obtain a legal abortion if there is a strong chance of a serious defect in the baby, according to a 2006 poll conducted by the National Opinion Research Center.
“This issue underscores the importance of families making personal, private decisions without political interference,” said Nancy Keenan, president of Naral Pro-Choice America, in a statement. “The decision should be with women, their families, and their doctors.”
But as more tests become available for conditions that do not involve serious disabilities, childhood diseases or death in early childhood, the emerging ethical questions may inject more nuance into a perennially polarized discussion.
“It will capture where the mainstream of Americans are on prenatal testing and abortion,” Dr. Caplan added. “Which is, some reasons seem good, and some don’t.”
Traditional anti-abortion advocates, from conservative politicians to Pope Benedict, have in recent months criticized the growing use of prenatal testing as a subtle form of eugenics. But the specter of fetuses being selectively targeted for elimination also has the potential to disturb solid supporters of abortion rights.
Some disabilities rights advocates, for example, are pressing the need to reconcile protecting abortion rights with a democratic imperative to embrace human diversity.
“If the response is simply, ‘You all are just anti-women’s-right-to-choose,’ I think that misses some of the important disabilities rights issues that are being raised,” said Andrew Imparato, president of the American Association of People With Disabilities.
Mr. Imparato said he was disturbed to learn recently that in several states with legislative efforts to restrict abortion rights, groups like Planned Parenthood often lobby for an exemption for women who learn their child would have a disability.
But he said that the person who alerted him was a Planned Parenthood lobbyist who was herself troubled by the tactic because it seemed to run counter to the progressive political agenda that supports both choice and tolerance of human difference.
“You’ve got these two basic liberal values on a kind of collision course,” said Rayna Rapp, an anthropologist at New York University who has studied attitudes toward prenatal testing.
Ms. Rapp argues that it doesn’t need to be that way. One solution, she said, is to make sure the world is a more welcoming place for people with disabilities. Other disabilities rights advocates emphasize the need to educate prospective parents about the positive aspects of raising disabled children.
Still, social policy may be unable to sway a seemingly strong personal preference for avoiding children with perceived genetic defects. About 90 percent of women who learn they are carrying a fetus with the extra 21st chromosome that causes Down syndrome choose an abortion. Studies have shown that many women choose to abort for diagnoses of less serious conditions.
And a growing number of fertile couples are using in vitro fertilization to gain greater control over the genetic makeup of their children. Under a procedure known as preimplantation genetic diagnosis, doctors screen embryos for a high risk of developing breast cancer or arthritis, and implant only embryos with the desired genetic makeup.
The questions may only become murkier if testing extends to traits like homosexuality or intelligence.
But Kirsten Moore, president of the pro-choice Reproductive Health Technologies Project, said that when members of her staff recently discussed whether to recommend that any prenatal tests be banned, they found it impossible to draw a line — even at sex selection, which almost all found morally repugnant. “We all had our own zones of discomfort but still couldn’t quite bring ourselves to say, ‘Here’s the line, firm and clear’ because that is the core of the pro-choice philosophy,” she said. “You can never make that decision for someone else.”
The rhetoric of “choice,” however, can take on a more troubling resonance when it comes to selecting children with new reproductive technologies, disabilities rights advocates say. “It so buys into this consumer perspective on our children,” said Marsha Saxton, a senior researcher at the World Institute on Disability in Oakland, Calif., who is an abortion rights supporter.
With a new, more conservative Supreme Court, which has just upheld a law banning a procedure critics call partial-birth abortion, disabilities rights advocates say they fear that the reproductive rights movement sees such discussions only as an opening to abortion opponents.
“The fear is that this will be used as an excuse to limit women’s access to abortion,” said Sujatha Jesudason, associate director of the Center for Genetics and Society, a nonprofit group promoting limits on reproductive technology. “But as these selective technologies are getting popularized we need to try to agree on a set of principles without giving up the fight for reproductive rights.”
If that doesn’t happen, some abortion rights supporters say they are worried that their opponents may hijack the discussion.
“Some religious conservatives say that they trust God to give them the child that is meant to be,” wrote Ann Althouse, a law professor in Madison, Wis., who identifies herself as an abortion rights supporter on her legal blog. “But isn’t there something equivalent for social liberals? Shouldn’t they have moral standards about what reasons are acceptable for an abortion?”
Another one by Amy Harmon, this one on knowing our genetic code.
6 Billion Bits of Data About Me, Me, Me!
By AMY HARMON
JAMES D. WATSON, who helped crack the DNA code half a century ago, last week became the first person handed the full text of his own DNA on a small computer disk. But he won’t be the last.
Soon enough, scientists say, we will all be able to decipher our own genomes — the six billion letters of genetic code containing the complete inventory of the traits we inherited from our parents — for as little as $1,000.
Just what we will do with the essence of who we are once we bottle it, however, is likely to be as much a social experiment as a scientific one.
As thousands of people decode their DNA over the next few years, they are likely to find themselves facing a genetic mirror whose reflection changes on an almost daily basis.
The more genomes that scientists have to work with, the more they can learn about them. So staying on top of your own health outlook may begin to resemble checking the performance of your stock portfolio. One day you find you have a gene that puts you at risk for diabetes; the next it’s one that may make you live longer.
“Nobody quite knows how to manage expectations in such a rapidly changing and deeply personal field,” said George M. Church, a Harvard Medical School geneticist who directs the Personal Genome Project. “The picture is getting more and more complete, but along the way there’s going to be a lot of, ‘You told us this last week and now you’re telling us this!’ ”
By the end of the summer, Dr. Church’s research project promises to deliver sequences to its first 10 volunteers. Unlike Dr. Watson, whose complete genome cost $1 million, the project’s volunteers will receive the one percent of their genome currently deemed most useful at a cost of $1,000.
One start-up company, 23andme, recently announced plans to provide affordable chunks of their DNA to individual consumers, along with tools to help them keep track of and understand their genetic information.
And technology companies like Illumina, Applied Biosystems and 454 Life Sciences, which solicited Dr. Watson’s DNA to prove its abilities, say the price of a complete human genome has already dropped to $100,000. They are competing for a $10 million “X prize” to sequence 100 human genomes within 10 days. (Dr. Watson’s took about two months.)
Those who have signed up to be sequenced as part of the competition include Paul Allen, co-founder of Microsoft; the astrophysicist Stephen Hawking; the television interviewer Larry King; and the financier Michael Milken.
“It’s the start of an era of comparative individual genomics,” said J. Craig Venter, who as president of the Celera Corporation sequenced much of his own genome in 2000 and recently completed it. “Hopefully we’ll have tens of thousands to compare in the next year or two.”
Dr. Venter said he consulted his genetic profile every time a new announcement of a gene discovery came out. Just last month, having read a report in this newspaper about a gene that raises the risk of heart disease, he found that he indeed carried the mutation.
He might have guessed that from his family history, but knowing his individual risk, rather than a statistical average, is a stronger motivator to change, Dr. Venter said. Because of another risk gene he carries for heart disease, he altered his diet and has been taking a cholesterol-lowering drug for several years.
“Now we can do something to alter what might have been our genetic destiny,” he added.
Beyond heart disease, there are a growing number of genes already known to influence predispositions to common diseases like breast and colon cancer, depression and dementia.
There are other reasons to unravel your genome. Embracers of nature over nurture may sift through their 20,000 genes to find an explanation for personality traits thought to have a partial genetic basis — like early rising, risk-taking, shyness and addiction.
And the curiosity is unlikely to be restricted to our own genetic code. A generation of personally motivated amateur geneticists may seek out others who have similar traits and similar quirks in their genetic code, hoping to deduce a connection.
Friends and families, too, may begin to compare notes.
“You can imagine a family who won’t let someone marry their daughter until they examined her prospective husband’s genome,” Dr. Watson suggested at a news conference on Thursday. “You’ll want to know what your mate is going to have.”
The mate, of course, may not want to know himself. Dr. Watson told the company that sequenced his genome not to reveal to him the status of one gene known to predispose people to Alzheimer’s disease. “Who wants to know that?” he said.
But Dr. Watson, 79, may yet learn that his genome contains Alzheimer’s risk genes that may be discovered tomorrow or next month or next year. On the other hand, he may find that he carries genes that offset the risk. Or both.
Moreover, because the way genes influence health and behavior depends heavily on their interaction with the environment, what our genome can tell us may change depending on lifestyle choices.
People who learn they carry a higher genetic risk of Type II diabetes, for instance, may see that risk increase if they start to gain weight. A gene that makes it difficult for some people to sweat in extreme heat might not matter to you if you live in Seattle. But if you are thinking of moving to Miami, knowing it exists in your genome could prove useful.
The lack of established medical authorities to interpret or filter such information could cause deep discomfort, some experts caution. And the technology is quickly outpacing social debate over how it should be handled.
“Some people are going to have information that they don’t know what to do with,” said Angela Trepanier, president elect of the National Society of Genetic Counselors. “And that can do more harm than good.”
Still, the early boosters of the personal genome say the best bet for improving individual health care is not only to embrace genetic knowledge about ourselves, but to share it with others.
If hundreds of thousands of people make their genomes public — along with personal information about their ancestry, their health history, what they look like, what they do and where they live — they argue, scientists will finally be able to draw meaningful correlations between variations in DNA sequence and any trait that has even a partial genetic basis, from what drugs we should take to what foods we like to eat.
As that happens, everyone with a sequenced genome will learn how the new findings affect them.
“Let’s sequence prominent Texans,” Dr. Watson said at the press conference in Houston last week. “What we really want now is a lot of data.”
Until then, even Dr. Watson, who posted his genome on the Internet last week, has to wait. At a ceremony marking the occasion, he stared at the disk containing his genome for a few seconds, then stuck it in his pocket.
A fascinating one on shamanism in Korea.
Shamanism Enjoys Revival in Techno-Savvy South Korea
By CHOE SANG-HUN
SEOUL, South Korea — Yang Soon-im says she began communicating with the spirits of mountains and ancient warriors more than 50 years ago, when she was only 7. But it was decades after that, when her son miraculously survived a knife wound, that she decided she had no choice but to become the spirits’ full-time channel with the living — a mudang, or shaman.
“I found her sitting on the roof chanting at 4 a.m.,” her husband, Choi Jong-sam, 62, said of that day about 25 years ago. “She was puffing away at four packs of cigarettes. She said her mountain gods had saved our son in a sort of bargain. I slapped her face to help her get her wits back.
“Then her eyes blazed like those of a wild dog about to bite a man.”
The deal Ms. Yang struck with her spirits eventually paid off in other ways. Now 60, she is one of the most sought-after shamans in Seoul — a leading member of a profession that has survived centuries of ridicule and persecution and is now enjoying a seemingly incongruous revival in one of the world’s most technologically advanced countries.
There are an estimated 300 shamanistic temples within an hour of Seoul’s bustling city center, and in them, shamans perform their clamorous ceremonies every day. They offer pigs to placate the gods. They dance with toy guns to comfort the spirit of a dead child. They intimidate evil spirits by walking barefoot on knife blades.
“We used to do our rituals in hiding,” said Ms. Yang, who performs two or three rites on a busy day. “Our customers kept it secret from even their own relatives. Now we have no shame performing in public. I can hardly take three days off a month.”
Korean shamanism is rooted in ancient indigenous beliefs shared by many folk religions in northeast Asia. Most mudangs are women who say they discovered their ability to serve as a mediator between the human and spirit worlds after emerging from a critical illness. They believe that the air is thick with spirits, including those of dead relatives, a fox in the hills behind a village, an old tree or even a stove. These spirits interact with people and influence their fortunes.
So when tradition-minded Koreans are inexplicably sick or have a run of bad luck in business or a daughter who cannot find a husband, they consult a shaman.
“If I contact the spirit of a man who died of stomach cancer, I get stomach pains for days,” said Kim Hong-kyung, 33, who has conducted rituals with Ms. Yang. “If I deal with the spirit of a woman who died during labor, my belly balloons like a pregnant woman’s.”
In an election year like this one, the most famous shamans are fully booked. Politicians, whether Christian or Buddhist, flock to them, asking, for instance, whether relocating their ancestors’ remains to a more propitious site might ensure victory.
“Look around,” said Kim Myung-soon, 41, a mudang who, in a recent ritual, decapitated a chicken with her bare hands. “So much of nature has been ruined. Spirits of trees and rocks are displaced and haunt humans because they have nowhere else to go. No wonder the country is a mess.”
Shamans were demonized by Christian missionaries and driven underground during Japanese colonial rule. The military governments that came after the Korean War disparaged them as charlatans and often banished them from villages, burning their shrines. But today, even many who regard shamanism as superstition acknowledge it to be an important repository of Korean culture, because the rituals have preserved traditional costumes, music and dance forms. Recent governments have documented and promoted the rituals as “intangible cultural assets.”
There are an estimated 300,000 shamans, or one for every 160 South Koreans, according to the Korea Worshipers Association, which represents shamans. They are fiercely independent, following different gods, sharing no one body of scriptures. And they are highly adaptable. When the Internet boom hit South Korea, shamans were among the first to set up commercial Web sites, offering online fortune-telling. Many younger shamans maintain Web logs.
“In our latest survey, we found 273 categories of gods venerated by Korean shamans. If you look into the subcategories, you find 10,000 deities,” said Hong Tea-han, a professor at Chung-Ang University in Seoul who researches shamanism. “Korean shamanism is a great melting pot. It never rejected anything but embraced everything, making endless compromises with other religions and social changes. That explains why it has survived thousands of years.”
There are shamans who venerate Jesus, the Virgin Mary, even Park Chung-hee, the late South Korean military strongman. Under the pro-American military governments of the 1970s, there were shamans who took Gen. Douglas MacArthur as their deity. When MacArthur’s spirit possessed them, they donned sunglasses, puffed on a pipe and uttered sounds that some clients took for English.
“Until perhaps 10 or 15 years ago, we had quite a few shamans who prayed before the MacArthur statue here,” said Aegibosal, a shaman in Inchon, the port city where MacArthur’s troops landed in 1950. “You don’t see any of them any more.”
Shamanism’s eclecticism has influenced Korean attitudes toward religion, helping make South Korea one of the world’s most pluralistic countries — a place where Buddhism, Confucianism and Christianity coexist peacefully and often overlap, said Yang Jong-sung, a senior curator at the National Folklore Museum of Korea.
“Korean shamanism is very, very materialistic and this-worldly, as Koreans tend to be,” the curator said. “I don’t think a Christian pastor can succeed here if he only talks about heaven and does not hint at health and material prosperity.”
In a recent ritual, Ms. Yang and two associates spent hours carefully stacking their altar with fruits, dried fish and rice cakes. They decorated their room with portraits of gods and unpacked a suitcase full of brightly colored costumes they changed into at different stages of the rite.
Their customer, a 51-year-old nurse, wanted the shamans’ help in getting a divorce from her unfaithful husband. Instead, for 5 million won, or $5,400, the shamans promised to help them reconcile.
Ms. Yang’s diagnosis: the husband had turned into a “horsefly that sucks bone marrow out of your spine,” because the couple had been cursed by a baby she had aborted, an uncle who committed suicide and a well her family had filled years before.
Ms. Yang and the nurse embraced and sobbed when the nurse’s dead mother, whom she had not mentioned to the shamans, spoke through Ms. Yang. Then Ms. Yang’s younger associate, Chung Joon-ha, 42, a former army sergeant, danced with knives and a lump of raw pork in his mouth, his eyes rolling back into their sockets.
“We are like a hospital,” he later said. “We do surgery on people’s bad luck.”
And one on modern librarians
A Hipper Crowd of Shushers
By KARA JESELLA
ON a Sunday night last month at Daddy’s, a bar in Williamsburg, Brooklyn, more than a dozen people in their 20s and 30s gathered at a professional soiree, drinking frozen margaritas and nibbling store-bought cookies. With their thrift-store inspired clothes and abundant tattoos, they looked as if they could be filmmakers, Web designers, coffee shop purveyors or artists.
When talk turned to a dance party the group had recently given at a nearby restaurant, their profession became clearer.
“Did you try the special drinks?” Sarah Gentile, 29, asked Jennifer Yao, 31, referring to the colorfully named cocktails.
“I got the Joy of Sex,” Ms. Yao replied. “I thought for sure it was French Women Don’t Get Fat.”
Ms. Yao could be forgiven for being confused: the drink was numbered and the guests had to guess the name. “613.96 C,” said Ms. Yao, cryptically, then apologized: “Sorry if I talk in Dewey.”
That would be the Dewey Decimal System. The groups’ members were librarians. Or, in some cases, guybrarians.
“He hates being called that,” said Sarah Murphy, one of the evening’s organizers and a founder of the Desk Set, a social group for librarians and library students.
Ms. Murphy was speaking of Jeff Buckley, a reference librarian at a law firm, who had a tattoo of the logo from the Federal Depository Library Program peeking out of his black T-shirt sleeve.
Librarians? Aren’t they supposed to be bespectacled women with a love of classic books and a perpetual annoyance with talkative patrons — the ultimate humorless shushers?
Not any more. With so much of the job involving technology and with a focus now on finding and sharing information beyond just what is available in books, a new type of librarian is emerging — the kind that, according to the Web site Librarian Avengers, is “looking to put the ‘hep cat’ in cataloguing.”
When the cult film “Party Girl” appeared in 1995, with Parker Posey as a night life impresario who finds happiness in the stacks, the idea that a librarian could be cool was a joke.
Now, there is a public librarian who writes dispatches for McSweeney’s Internet Tendency, a favored magazine of the young literati. “Unshelved,” a comic about librarians — yes, there is a comic about librarians — features a hipster librarian character. And, in real life, there are an increasing number of librarians who are notable not just for their pink-streaked hair but also for their passion for pop culture, activism and technology.
“We’re not the typical librarians anymore,” said Rick Block, an adjunct professor at the Long Island University Palmer School and at the Pratt Institute School of Information and Library Science, both graduate schools for librarians, in New York City.
“When I was in library school in the early ’80s, the students weren’t as interesting,” Mr. Block said.
Since then, however, library organizations have been trying to recruit a more diverse group of students and to mentor younger members of the profession.
“I think we’re getting more progressive and hipper,” said Carrie Ansell, a 28-year-old law librarian in Washington.
In the last few years, articles have decried the graying of the profession, noting a large percentage of librarians that would soon be retiring and a seemingly insurmountable demand for replacements. But worries about a mass exodus appear to have been unfounded.
Michele Besant, the librarian at the School of Library and Information Studies at the University of Wisconsin-Madison, said the Association of Library and Information Science statistics show a steady increase in library information science enrollments over the last 10 years. Further, at hers and other schools there is a trend for students to be entering masters programs at a younger age.
The myth prevails that librarians are becoming obsolete. “There’s Google, no one needs us,” Ms. Gentile said, mockingly, over a drink at Daddy’s.
Still, these are high-tech times. Why are people getting into this profession when libraries seem as retro as the granny glasses so many of the members of the Desk Set wear?
“Because it’s cool,” said Ms. Gentile, who works at the Brooklyn Museum.
Ms. Murphy, 29, thinks so, too. An actress who had long considered library school, Ms. Murphy finally decided to sign up after meeting several librarians — in bars.
“People I, going in, would never have expected were from the library field,” she said. “Smart, well-read, interesting, funny people, who seemed to be happy with their jobs.”
Maria Falgoust, 31, is also a founder of Desk Set, which took its name from the 1957 Katharine Hepburn-Spencer Tracy romantic comedy. A student who works part time at the library at Saint Ann’s School, she was inspired to become a librarian by a friend, a public librarian who works with teenagers and goes to rock shows regularly.
Since matriculating to Palmer, Ms. Falgoust has met plenty of other like-minded librarians at places such as Brooklyn Label, a restaurant, and at Punk Rope, an exercise class. “They’re everywhere you go,” she said.
Especially in Greenpoint, where Ms. Murphy and Ms. Falgoust live about 10 blocks from each other and where there are, Ms. Falgoust said, about 13 other librarians in the neighborhood.
How did such a nerdy profession become cool — aside from the fact that a certain amount of nerdiness is now cool? Many young librarians and library professors said that the work is no longer just about books but also about organizing and connecting people with information, including music and movies.
And though many librarians say that they, like nurses or priests, are called to the profession, they also say the job is stable, intellectually stimulating and can have reasonable hours — perfect for creative types who want to pursue their passions outside of work and don’t want to finance their pursuits by waiting tables. (The median salary for librarians was about $51,000 in 2006, according to the American Library Association-Allied Professional Organization.)
“I wanted to do something different, something maybe more meaningful,” said Carrie Klein, 36, who used to be a publicist for a record label and for bands such as Radiohead and the Foo Fighters, but is now starting a new job in the library at Entertainment Weekly.
Michelle Campbell, 26, a librarian in Washington, said that librarianship is a haven for left-wing social engagement, which is particularly appealing to the young librarians she knows. “Especially those of us who graduated around the same time as the Patriot Act,” Ms. Campbell said. “We see what happens when information is restricted.”
Ms. Campbell added that she became a librarian because it “combined a geeky intellectualism” with information technology skills and social activism.
Jessamyn West, 38, an editor of “Revolting Librarians Redux: Radical Librarians Speak Out” a book that promotes social responsibility in librarianship, and the librarian behind the Web site librarian.net (its tagline is “putting the rarin’ back in librarian since 1999”) agreed that many new librarians are attracted to what they call the “Library 2.0” phenomenon. “It’s become a techie profession,” she said.
In a typical day, Ms. West might send instant and e-mail messages to patrons, many of who do their research online rather than in the library. She might also check Twitter, MySpace and other social networking sites, post to her various blogs and keep current through MetaFilter and RSS feeds. Some librarians also create Wikis or podcasts.
At the American Librarian Association’s annual conference last month in Washington, there were display tables of graphic novels, manga and comic books. In addition to a panel called “No Shushing Required,” there were sessions on social networking and zines and one called “Future Friends: Marketing Reference and User Services to Generation X.”
On a Saturday, after a day of panels, a group of librarians relaxed and danced at Selam Restaurant. Sarah Mercure nursed a blueberry vodka and cranberry juice and talked about deciding on her career after hearing a librarian who curated a zine collection speak. Pete Welsch, a D.J., spun records and talked about how his interest in social activism, film and music led him to library school.
But some librarians have found the job can be at odds with their outside cultural interests.
“I went to see a band a few weeks ago with old co-workers and turned to one and said ‘Is it just me or is this really, really loud?’ ” said Ms. Klein, the former publicist. Her friend, she said, “laughed and said, ‘You have librarian ears now.’
