BlogEthics Purdue

With Help, Conductor and Wife Ended Lives

July 15, 2009

By JOHN F. BURNS

LONDON — The controversy over the ethical and legal issues surrounding assisted suicide for the terminally ill was thrown into stark relief on Tuesday with the announcement that one of Britain’s most distinguished orchestra conductors, Sir Edward Downes, had flown to Switzerland last week with his wife and joined her in drinking a lethal cocktail of barbiturates provided by an assisted-suicide clinic.

Although friends who spoke to the British news media said Sir Edward was not known to have been terminally ill, they said he wanted to die with his ailing wife, who had been his partner for more than half a century.

The couple’s children said in an interview with The London Evening Standard that on Tuesday of last week they accompanied their father, 85, and their mother, Joan, 74, on the flight to Zurich, where the Swiss group Dignitas helped arrange the suicides. On Friday, the children said, they watched, weeping, as their parents drank “a small quantity of clear liquid” before lying down on adjacent beds, holding hands.

“Within a couple of minutes they were asleep, and died within 10 minutes,” Caractacus Downes, the couple’s 41-year-old son, said in the interview after his return to Britain. “They wanted to be next to each other when they died.” He added, “It is a very civilized way to end your life, and I don’t understand why the legal position in this country doesn’t allow it.”

Sir Edward, who was described in a statement issued earlier on Tuesday by Mr. Downes and his sister, Boudicca, 39, as “almost blind and increasingly deaf,” was principal conductor of the BBC Philharmonic Orchestra from 1980 to 1991. He was also a conductor of the Royal Opera House at Covent Garden in London, where he led 950 performances over more than 50 years.

Lady Downes, who British newspapers said was in the final stages of terminal cancer, was a former ballet dancer, choreographer and television producer who devoted her later years to working as her husband’s assistant.

“After 54 happy years together, they decided to end their own lives rather than continue to struggle with serious health problems,” the Downes children said in their statement.

British families who have used the Zurich clinic in the past have said that Dignitas charges about $6,570 for each assisted suicide.

Scotland Yard said in a statement on Tuesday that it had been informed on Monday “that a man and a woman” from London had died in Switzerland, and that it was “looking into the circumstances.” The information that prompted the police inquiry appeared to have been given voluntarily by the Downes family, which, Caractacus Downes said, “didn’t want to be untruthful about what had happened.”

“Even if they arrest us and send us to prison, it would have made no difference because it is what our parents wanted,” he said.

Attempting suicide has not been a criminal offense in Britain since 1961, but assisting others to kill themselves is. But since the Zurich clinic run by Dignitas was established in 1998 under Swiss laws that allow clinics to provide lethal drugs, British authorities have effectively turned a blind eye to Britons who go there to die.

None of the family members and friends who have accompanied the 117 people living in Britain who have traveled to the Zurich clinic for help in ending their lives have been charged with an offense. Legal experts said it was unlikely that that would change in the Downes case.

But British news reports about the Downeses’ suicides noted one factor that appeared to set the case apart from others involving the Dignitas clinic: Sir Edward appeared not to have been terminally ill. There have been at least three other cases similar to the Downeses’, in which a spouse who was not terminally ill chose to die with the other.

Sir Edward was known for his support for British composers and his passion for Prokofiev and Verdi. After studying at the Royal College of Music in London, he joined the Royal Opera House in 1952. His first assignment was prompting the soprano Maria Callas. He traveled widely as a conductor and became music director of the Australian Opera in the 1970s.

Friends of Sir Edward said that his decision to die with his wife did not surprise them. “Ted was completely rational,” said Richard Wigley, the general manager of the BBC Philharmonic. “So I can well imagine him, being so rational, saying, ‘It’s been great, so let’s end our lives together.’ ”

Jonathan Groves, Sir Edward’s manager, called their decision “typically brave and courageous.”

But even among those who support decriminalizing assisted suicide, Sir Edward’s death raised troubling questions. Sarah Wootton, chief executive of Dignity in Dying, said in a BBC interview that the growing numbers of Britons going abroad to die, and the manner of their deaths, made it more urgent to amend Britain’s laws. There are “no safeguards, no brakes on the process at all,” she said.

The British Medical Association voted this month against legalizing assisted suicide, or lifting the threat of prosecution from “friends and relatives who accompany loved ones to die abroad.” Last week, the House of Lords defeated a bill that would have allowed people, subject to safeguards, to travel abroad to help people choosing to die.

Source: www.nyt.com

July 16th 2009 Posted to Euthanasia, Europe, Spring 2009

Comments Off

Bioethicists Call For Heightened Oversight of Genetic Ancestry Testing

July 02, 2009

Newsletter: GenomeWeb Daily News

NEW YORK (GenomeWeb News) – More guidance and oversight are needed to make sure that genetic ancestry tests are carried out ethically and accurately, according to a policy paper appearing online today in Science.

A team of bioethics and anthropology researchers from Stanford University, the University of California at Berkeley, the University of Texas at Austin, New York University, and the University of Wisconsin argued that a sound public policy should be developed around existing genetic ancestry testing recommendations — such as those issued by the American Society for Human Genetics at its annual meeting last fall.

“The ASHG statement identifies key issues surrounding the science of ancestry estimation and represents an important first step,” lead author Sandra Soo-Jin Lee, a researcher at the Stanford Center for Biomedical Ethics, and her co-authors noted. “However, an effective public policy for the growing market of genetic ancestry tests must build on the ASHG’s recommendations and must generate specific mechanisms and approaches.”

Genetic ancestry is increasingly entering research and recreational realms. For instance, Lee and her colleagues noted that such tests are currently being used for everything from biomedical and forensics research to genealogical studies and immigration control.

Some direct-to-consumer genetic testing companies are relying on genetic ancestry information, too, not only to help interpret the risk posed by specific genetic variants, but in some cases to offer consumers a glimpse at their ancestry and family history.

“Despite the proliferation of companies providing genetic ancestry information, DTC genetic ancestry tests fall into an unregulated no-man’s land, with little oversight and few industry guidelines to ensure the quality, validity, and interpretation of information sold,” Lee and her co-authors wrote.

In their policy paper, the researchers focused on issues related to the responsibility and accountability of those collecting samples and doing genetic tests, the need to come up with standard ways to assess genetic ancestry data, and the role of government agencies, if any, in developing DTC genetic ancestry test guidelines.

The team highlighted ethical issues that can spring from DNA sample collection and reuse, using the Havasupai Tribe as an example. In that case, researchers from Arizona State University and elsewhere came under fire for allegedly using samples collected for diabetes research for additional studies of schizophrenia, human migration, and inbreeding. The tribe’s lawsuit against the Arizona Board of Regents was dismissed in 2007 but re-instated by an appeals court last November.
“It is a scientific imperative that we enact enforceable policies that determine what constitute responsible and accountable collection and secondary use of DNA samples,” Lee and her colleagues argued.

They noted that previously collected genetic samples aren’t considered human subjects research by the US Department of Health and Human Services’ Office for Human Research Protections, leaving a gray area with respect to informed consent and other requirements.

The team also touched on the need to develop common terms for sharing genetic ancestry information between academic researchers, research subjects, industry representatives, consumers, and others.

Finally, the researchers contend that specific systems should be put in place to enforce genetic ancestry guidelines. For their part, the authors called on agencies such as the Federal Trade Commission, the US Food and Drug Administration, and the US Centers of Disease Control and Prevention to increase oversight and regulation of ancestry testing.
“New regulations … will help shape how practitioners are able to communicate genetic ancestry testing results to consumers,” the authors concluded. “Political will and leadership toward addressing fundamental differences in perspectives may ultimately determine whether a gold standard for genetic ancestry testing can be achieved.”

source: http://www.genomeweb.com/dxpgx/bioethicists-call-heightened-oversight-genetic-ancestry-testing?emc=el&m=435036&l=6&v=7fc0c79c02

July 06th 2009 Posted to Genetics & Religion, US, Spring 2009

Comments Off

With Help, Conductor and Wife Ended Lives

Bioethicists Call For Heightened Oversight of Genetic Ancestry Testing

Around here

Archives

Categories

Meta