Sunday, April 25, 2010

‘Informed Consent’ and the Ethics of DNA Research


Published: April 23, 2010

The cultural gap between the impoverished Havasupai Indians who view their blood as sacred and the Arizona State University researchers who helicoptered in to their Grand Canyon home to collect it was at the heart of a lawsuit over the scope of a genetic study that ended last week with a settlement for the tribe.

But the case, scientists and bioethicists said, serves as a cautionary tale about the equally significant gap between scientists and all research subjects, who often seem to hail from different cultures even when the surface differences are less apparent.

As troubling questions, some involving other lawsuits, have surfaced recently among a range of research subjects who have learned that their genetic material is being used in ways they weren’t consulted about, scientists are debating how to better apply the principle of “informed consent” to large-scale genetic research. At stake, they say, is the success of such research, which relies on voluntary participation by increasingly large numbers of human subjects.

Some have proposed an international tribunal akin to the Helsinki human rights agreement, which would lay out the ethical obligations to research participants. Others suggest staying in touch with subjects so they can be consulted on new projects — and because under current practices they tend to learn of breakthroughs based on their own DNA only if they become close readers of scientific journals.

Courts have ruled that individuals do not have a property right to their cells once they are taken in the course of medical care, but they do, under federal guidelines, have a right to know how they will be used. Complicating matters is the increasing impossibility of ensuring that DNA data can remain anonymous. Do participants need to be told that their privacy cannot be guaranteed? Can “blanket” consent up front do the trick, or is even that misleading because researchers can’t adequately describe the scope of studies they have yet to design? Is it O.K. to use DNA collected for heart research to look for genetic associations with intelligence, mental illness, racial differences?

For one thing, “we have to communicate a hell of a lot better to the public what is going on when we put their specimens in our biobanks,” said Stephen J. O’Brien, a geneticist who runs the Laboratory of Genomic Diversity at the National Institutes of Health.

At issue in the Havasupai case was whether an Arizona State geneticist had obtained permission from tribal members to use their DNA for anything other than finding clues to Type 2 diabetes. More than 200 of the 650-member tribe signed a consent form stating that their blood could be used to “study the causes of behavioral/medical disorders,” but many said they had believed they were donating it only for the study of diabetes, which tribal members suffer from at extraordinarily high rates.

When they learned years later that the DNA samples had been used to investigate things they found objectionable, they felt betrayed. Researchers had investigated genes thought to be associated with schizophrenia, a condition the tribe considered stigmatizing, and traced the tribe’s ancestral origins to Asia, contradicting traditional stories holding that the Havasupai had originated in the Grand Canyon.

Dr. O’Brien said he sympathized with the position of Dr. Therese Markow, the geneticist who had overseen the research at Arizona State and who insisted she had received consent from her subjects. But it was her responsibility, Dr. O’Brien added, to make sure her subjects actually understood.

He noted that a similar question arose much more recently about what should be done with some 200,000 DNA samples that government-funded scientists had collected for studies of specific diseases. His own laboratory, for instance, has gathered DNA from thousands of AIDS patients who gave permission for it to be used in studying the genetics of H.I.V.

Should the samples be made available in a public database, so other federally funded researchers can use them for additional studies? After all, they were collected at considerable taxpayer expense. On the other hand, what if patients disliked the purposes it was used for?

“What if someone decides to use them to look for a gene for homosexuality?” Dr. O’Brien said. “They might be pretty surprised to learn that.”

Most likely they would never find out. (The Havasupai learned of the research Dr. Markow had done only because another professor at the university made a tribe member aware of it.) But what if they did find out?

That happened in Texas, when a newspaper report tipped parents off to the fact that the drops of blood taken from newborns in the hospital for screening in state laboratories — a legally mandated practice that can stave off disease and save lives — were being stored and made available to scientists for other research.

“The irony is if you had asked me, I probably would have consented,” said Andrea Beleno, a legal aid attorney in Austin, Tex., who was among those who sued the state health agency. “I would love for there to be a cure for breast cancer, which runs in my family. I would love for there to be a cure for diabetes. The way the state went about it just made me distrustful.”

It didn’t help to learn from another newspaper report, after the state settled the case, that some of the samples had been provided to a database used by the military to improve the interpretation of forensic DNA evidence.

“I’m not much of a conspiracy theorist,” said Ms. Beleno. “I would have laughed if someone said the state has a multimillion-person DNA database and they’re sending samples to the U.S. military.”

The state’s resulting decision to destroy the samples, legal advocates said, was a loss for science that could have been prevented.

Some marginalized groups have shied away from genetic research for historical reasons like the infamous Tuskegee syphilis study on African-Americans. As a result, said Marcus Feldman, a Stanford geneticist, those who may have the least access to medical care are also those whose genetics scientists know the least about.

Studies have estimated that most individuals — perhaps more than 90 percent — are willing to allow their data to be used for a range of biomedical research. It is when they are not asked that problems arise.

Rebecca Skloot, author of a book that recounts how cells taken by doctors from a black woman with cervical cancer in the 1950s became a vital tool for medicine, said people ask at every stop on her book tour how they can find out what is being done with the blood or biopsy they may have left at a hospital.

“There is this sense of, ‘it’s a piece of my body, and I want to know what’s happening to it,’ ” said Ms. Skloot, whose book, “The Immortal Life of Henrietta Lacks,” has become a best seller.

Some advocates for patients have criticized a paternalism among scientists who may tend to believe they are working to benefit humanity and prefer not to slow down, or spend grant money, to explain their work. But part of the problem may also be that communicating with the public is not what scientists are trained to do.

“If you go to a hospital and you don’t speak English, you’re going to get a translator,” said Ms. Skloot. “If you go to the hospital and you don’t speak science, you’re not, and in a way, that’s what people need.”

For pragmatic reasons and ethical ones, some researchers are trying out new models. In pursuit of the huge volume of research participants that appear to be necessary to find the many gene variants that contribute to common diseases like diabetes, the Children’s Hospital Boston, for instance, is pioneering a project that lets researchers report whatever they find directly to the subjects, a practice that has been considered impractical in the past, and fraught with ethical issues of its own.

With that as incentive, they hope to enroll nearly every family that walks through the door in a study that makes their medical records, as well as their DNA, available to researchers.

Over the first six months of the project, genetic counselors have spent as much as an hour with each family.

“We talked a lot about how this kind of information can be shocking and nerve-racking, and the things people can find out,” said Chellamal Keshavan, 21, a senior at Wheelock College in Boston. Then, readily, she gave her consent.

Tuesday, April 06, 2010

Wilma Mankiller, former Cherokee Chief, is Dead at 64 - Obituary

By Sam Howe Verhovek

Published: April 6, 2010

Wilma Mankiller, who as the first woman to be elected chief of a major American Indian tribe revitalized the Cherokee Nation’s tribal government and improved its education, health and housing, died Tuesday at her home near Tahlequah, Okla. She was 64.
The cause was pancreatic cancer, said Mike Miller, a tribal spokesman.

Ms. Mankiller was the Cherokee chief from 1985 to 1995, and during her tenure the nation’s membership more than doubled, to 170,000 from about 68,000.

While many Cherokees live in a 14-county area around the tribal capital of Tahlequah, in eastern Oklahoma, its members are spread throughout the 50 states. The current tribal membership is 290,000, making it the second-largest tribe in the country after the Navajo.

Ms. Mankiller was admired for her tenacity, having fought off two serious diseases, lymphoma and a neuromuscular disorder called myasthenia gravis; recovered from kidney failure that would have killed her had not an older brother given her one of his kidneys; and survived a head-on automobile collision in 1979 that forced her to endure 17 operations and years of physical therapy.

“We are better people and a stronger tribal nation because of her example of Cherokee leadership, statesmanship, humility, grace, determination and decisiveness,” Chad Smith, the Cherokees’ principal chief, said in a statement on the tribe’s Web site. “When we become disheartened, we will be inspired by remembering how Wilma proceeded undaunted through so many trials and tribulations.”

Wilma Pearl Mankiller was born on Nov. 18, 1945, in Tahlequah. She was the sixth of 11 children reared by Charley Mankiller, a full-blooded Cherokee, and the former Clara Irene Sitton, who is of Dutch-Irish descent. (The Cherokees accept anyone as a member who can link any part of his or her ancestry to a member of the original tribe.)

She spent her early childhood on a 160-acre tract known as Mankiller Flats, given to her grandfather as part of a settlement the federal government made for forcing the Cherokee to move to Oklahoma from their tribal lands in the Carolinas and Georgia in the 1830s. The name Mankiller comes from a tribal military rank.

Though Ms. Mankiller later recalled that she had never really felt poor growing up, the family’s home had no electricity, indoor plumbing or telephones.

In 1956, the family moved to San Francisco as part of a relocation policy of the Bureau of Indian Affairs. Its aim was to move Indians off federally subsidized reservations with the promise of jobs in America’s big cities. Ms. Mankiller’s father became a warehouse worker and union organizer.

In an interview with The New York Times in 1993, Ms. Mankiller described the move as “my own little Trail of Tears,” a reference to the forced removal of Cherokees from the Southeast by federal troops during the winter of 1838-39.

In 1963, she married Hugo Olaya, an Ecuadorean businessman, and later became the mother of two daughters, Gina and Felicia.

Her life changed, she said, when a group of young Indian demonstrators took over Alcatraz to call attention to the government’s treatment of Indians. They claimed the island “in the name of Indians of all tribes,” and during their 19-month occupation Ms. Mankiller visited them frequently and raised money for their cause.

She began taking night courses at Skyline College and San Francisco State University while working as a coordinator of Indian programs for the Oakland public schools. After her marriage ended in divorce, she returned with her daughters to live on her grandfather’s land in Oklahoma in 1977.

Soon she began volunteering in tribal affairs and leading campaigns for new health and school programs, like Head Start. She landed a job as economic stimulus coordinator for the Cherokee Nation, emphasizing community self-help. She also earned a bachelor’s degree in the social sciences from Flaming Rainbow University in Stilwell and took graduate courses in community planning at the University of Arkansas.

In 1981, she founded the community development department of the Cherokee Nation and, as its director, helped develop rural water systems and rehabilitate housing. Her successes led the tribe’s principal chief, Ross Swimmer, to select her as his running mate in his re-election campaign in 1983. Their victory made her the first woman to become deputy chief of the Cherokee Nation.

When Mr. Swimmer resigned two years later to become assistant secretary for Indian Affairs at the Department of the Interior, she succeeded him as principal chief. She won office in her own right in 1987 and in 1991 was re-elected with 83 percent of the vote.

As the tribe’s leader, she was both the principal guardian of centuries of Cherokee tradition and customs, including legal codes, and chief executive of a tribe with a budget that reached $150 million a year by the end of her tenure. The money included income from several factories, gambling operations, a motel, gift shops, a ranch, a lumber company and other businesses as well as the federal government.

One of her priorities was to plow much of this income back into new or expanded health care and job-training programs as well as Head Start and the local high school.

Even after she left office in 1995 because of her health problems, Ms. Mankiller remained a force in tribal affairs, frequently sought out for counsel and helping to mediate a bitter factional fight between her successor and other tribal leaders that had threatened to become a constitutional crisis in the Cherokee Nation. She also was a guest professor at Dartmouth College.

In addition to her mother, she is survived by her husband, Charlie Soap; her daughters, Gina Olaya and Felicia Olaya, both of Tahlequah; several brothers and sisters, and four grandchildren.

In 1998, President Bill Clinton awarded Ms. Mankiller the Medal of Freedom, the nation’s highest civilian honor.

Her life story was chronicled in “Mankiller: A Chief and Her People” (St. Martin’s Press, 1993), which she wrote with Michael Wallis. She was also the author and editor of “Every Day Is a Good Day: Reflections by Contemporary Indigenous Women” (Fulcrum Publishing, 2004).

William Grimes contributed reporting.

Indian Tribes Go in Search of Their Lost Languages


Published: April 5, 2010

As far as the records show, no one has spoken Shinnecock or Unkechaug, languages of Long Island’s Indian tribes, for nearly 200 years. Now Stony Brook University and two of the Indian nations are initiating a joint project to revive these extinct tongues, using old documents like a vocabulary list that Thomas Jefferson wrote during a visit in 1791.

The goal is language resuscitation and enlisting tribal members from this generation and the next to speak them, said representatives from the tribes and Stony Brook’s Southampton campus.

Chief Harry Wallace, the elected leader of the Unkechaug Nation, said that for tribal members, knowing the language is an integral part of understanding their own culture, past and present.

“When our children study their own language and culture, they perform better academically,” he said. “They have a core foundation to rely on.”

The Long Island effort is part of a wave of language reclamation projects undertaken by American Indians in recent years. For many tribes language is a cultural glue that holds a community together, linking generations and preserving a heritage and values. Bruce Cole, the former chairman of the National Endowment for the Humanities, which sponsors language preservation programs, has called language “the DNA of a culture.”

The odds against success can be overwhelming, given the relatively small number of potential speakers and the difficulty in persuading a new generation to participate. There has been progress, though, said Leanne Hinton, professor emerita at the University of California, Berkeley, who created the Breath of Life program in California in 1992 to revive dormant languages in the state.

Representatives from at least 25 languages with no native speakers have participated in the group’s workshops so far, she said. Last month Ms. Hinton and a colleague at Yale received a federal grant to create a similar program based in Washington, D.C.

Of the more than 300 indigenous languages spoken in the United States, only 175 remain, according to the Indigenous Language Institute. This nonprofit group estimates that without restoration efforts, no more than 20 will still be spoken in 2050.

Some reclamation efforts have shown success. Daryl Baldwin started working to revive the dormant language of the Miami Nation in the Midwest (part of the Algonquian language family), and taught his own children to speak it fluently. He now directs the Myaamia Project at Miami University in Ohio, a joint effort between academics and the Miami tribe.

Farther east is Stephanie Fielding, a member of the Connecticut Mohegans and an adviser on the Stony Brook project. She has devoted her life to bringing her tribe’s language back to life and is compiling a dictionary and grammar book. In her eyes language provides a mental telescope into the world of her ancestors. She notes, for example, that in an English conversation, a statement is typically built with the first person — “I” — coming first. In the same statement in Mohegan, however, “you” always comes first, even when the speaker is the subject.

“This suggests a more communally minded culture,” she said.

Now in her 60s, Ms. Fielding knows firsthand just how tough it is to sustain a language effort over time, however. She said she was still not fluent.

“In order for a language to survive and resurrect,” she said, “it needs people talking it, and for people to talk it, there has to be a society that works on it.”

Chief Wallace of the Unkechaug in Long Island already has a willing student from a younger generation. Howard Treadwell, 24, graduated from Stony Brook in 2009 with a linguistics degree. He will participate in the Long Island effort while doing graduate work at the University of Arizona, where there is a specialized program researching American Indian languages.

Mr. Treadwell is one of 400 registered members of the tribe, which maintains a 52-acre reservation in Mastic, on the South Shore. The Shinnecocks have about 1,300 enrolled members and have a reservation adjacent to Southampton.

Robert D. Hoberman, the chairman of the linguistics department at Stony Book, is overseeing the academic side of the project. He is an expert in the creation of modern Hebrew, the great success story of language revival. Essentially unspoken for 2,000 years, Hebrew survived only in religious uses until early Zionists tried to update it — an undertaking adopted on a grand scale when the State of Israel was established.

For the American Indians on Long Island the task is particularly difficult because there are few records. But Shinnecock and Unkechaug are part of a family of eastern Algonquian languages. Some have both dictionaries and native speakers, Mr. Hoberman said, which the team can mine for missing words and phrases, and for grammatical structure.

The reclamation is a two-step process, the professor explained. “First we have to figure out what the language looked like,” using remembered prayers, greetings, sayings and word lists, like the one Jefferson created, he said. “Then we’ll look at languages that are much better documented, look at short word lists to see what the differences are and see what the equivalencies are, and we’ll use that to reconstruct what the Long Island languages probably were like.” The Massachusett language, for example, is well documented with dictionaries and Bible translations.

Jefferson’s Unkechaug word list was collected on June 13, 1791, when he visited Brookhaven, Long Island, with James Madison, later his successor in the White House. He wrote that even then, only three old women remained who could still speak the language fluently.

Chief Wallace said he had many more records, including religious documents, deeds and legal transactions, and possibly a tape of some tribal members speaking in the 1940s.

“When we have an idea of what the language should sound like, the vocabulary and the structure, we’ll then introduce it to people in the community,” Mr. Hoberman said.

While it may seem impossible to recreate the sound of a lost tongue, Mr. Hoberman said the process was not all that mysterious because the dictionaries were transliterated into English.

“Would someone from 200 years ago think we had a funny accent?” Mr. Hoberman asked. “Yes. Would they understand it? I hope so.”

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Former Cherokee Nation Chief Wilma Mankiller Dies

OKLAHOMA CITY (AP) -- Former Cherokee Nation Chief Wilma Mankiller, one of the few women ever to lead a major American Indian tribe, has died. She was 64.

Tribal spokesman Mike Miller said Mankiller, who became one of the nation's most visible American Indian leaders during her 10 years as chief of the Cherokee Nation of Oklahoma, died Tuesday.

Mankiller had battled lymphoma, breast cancer and several other health problems. On March 2, 2010, Mankiller's husband, Charlie Soap, announced that his wife had stage 4 metastatic pancreatic cancer.

As the first female chief of the Cherokees, serving from 1985 to 1995, Mankiller led the tribe in tripling its enrollment, doubling employment and building new health centers and children's programs.

Her first taste of federal policy toward Indians came in the 1950s when her family participated in a government relocation program and ended up in a housing project. As chief, she took Indian issues to the White House and met with three presidents: Ronald Reagan, George H.W. Bush and Bill Clinton. Mankiller earned a reputation for facing conflict head-on.

She met snide remarks about her surname -- a Cherokee military title -- with humor, often delivering a straight-faced, ''Mankiller is actually a well-earned nickname.''

Continual struggles with her health appeared not to deter her. A 1979 car accident nearly claimed her life and resulted in 17 operations. She developed a muscular disorder called myasthenia gravis and underwent a kidney transplant in 1990.

Mankiller used some hospital stays to work on her autobiography with Michael Wallis called ''Mankiller: A Chief and Her People,'' which came out in 1993.

After the announcement that she had pancreatic cancer, Mankiller said she was ''mentally and spiritually prepared for this journey.''

''I learned a long time ago that I can't control the challenges the creator sends my way, but I can control the way I think about them and deal with them,'' she said in a March 2010 statement released by the tribe.

''On balance, I have been blessed with an extraordinarily rich and wonderful life, filled with incredible experiences.''

Mankiller succeeded former Chief Ross Swimmer, who left at midterm in 1985 for a job in the Bureau of Indian Affairs. She was re-elected in a landslide four years later, with 83 percent of the vote. She decided not to seek re-election in 1995 and accepted a teaching position at Dartmouth College in Hanover, N.H., where she held an honorary degree.

Among her other honors was a Presidential Medal of Freedom -- the nation's highest civilian award -- presented by Clinton in 1998.

Born at W.W. Hastings Indian Hospital in Tahlequah, Mankiller moved with her family to San Francisco in the 1950s when their farm in Adair County failed. The pledge of opportunity turned out to be a life of poverty in a housing project.

She married Ecuadoran accountant Hector Olaya in 1963, and they had two daughters, Felicia, born in 1964, and Gina, born in 1966.

Mankiller moved back to her family's land in Oklahoma after divorcing Olaya in 1975, and she married Soap in 1986.

In 1969, she got what she called ''an enormous wake-up call'' and took her first step into Indian activism by participating in the 19-month occupation of Alcatraz Island.

Seventy-nine Native Americans took over the site of the former federal prison to protest a policy that terminated the federal government's recognition of tribal sovereignty and the exclusion of Indians from state laws. The policy was based on the belief that Native Americans would be better off if they assimilated as individuals into mainstream American society. Federal officers removed the remaining protesters in June 1971.

As chief, Mankiller was less of an activist and more of a pragmatist. She was criticized for focusing almost exclusively on social programs, instead of pushing for smoke shops and high-stakes gaming.

In her autobiography, Mankiller said she wanted to be remembered not just for being the tribe's first female chief but for emphasizing that Cherokee values can help solve contemporary problems.

''Friends describe me as someone who likes to dance along the edge of the roof,'' she wrote. ''I try to encourage young women to be willing to take risks, to stand up for the things they believe in, and to step up and accept the challenge of serving in leadership roles.''

A memorial service has been scheduled for Saturday at 11 a.m. at the Cherokee Nation Cultural Grounds in Tahlequah.