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Below are noteworthy bioethics news that may be of interest. Indian Tribe Wins Fight to Limit Research of Its DNA
 Seven years ago, the Havasupai Indians, who live amid the turquoise waterfalls and red cliffs miles deep in the Grand Canyon, issued a "banishment order" to keep Arizona State University employees from setting foot on their reservation - an ancient punishment for what they regarded as a genetic-era betrayal. Members of the tiny, isolated tribe had given DNA samples to university researchers starting in 1990, in the hope that they might provide genetic clues to the tribe's devastating rate of diabetes. But they learned that their blood samples had been used to study many other things, including mental illness and theories of the tribe's geographical origins that contradict their traditional stories.
The geneticist responsible for the research has said that she had obtained permission for wider-ranging genetic studies.
Acknowledging a desire to "remedy the wrong that was done," the university's Board of Regents on Tuesday agreed to pay $700,000 to 41 of the tribe's members, return the blood samples and provide other forms of assistance to the impoverished Havasupai - a settlement that legal experts said was significant because it implied that the rights of research subjects can be violated when they are not fully informed about how their DNA might be used. Continue reading
Vatican to Finance Adult Stem Cell Research
 The Vatican is pushing for research of adult stem cells as an alternative to the use of embryonic stem cells, which the Catholic Church opposes because it maintains that the destruction of the embryo amounts to the killing of human life.
On Friday, the Catholic Church threw its support and resources behind the study of intestinal adult stem cells by a group of experts led by the University of Maryland School of Medicine. The group wants to explore the potential use of those cells in the treatment of intestinal and possibly other diseases, and is seeking an initial $2.7 million to get the project going, officials said."This research protects life," Cardinal Renato Martino said during a meeting with Italian and American scientists and health officials to outline the project. "I want to stress that it doesn't involve embryonic stem cells, where one helps oneself and then throws the embryo away and kills a human life."
The church is opposed to embryonic stem cell research because it involves the destruction of embryos, but it supports the use of adult stem cells, which are found in the bodies of all humans. Human embryonic stem cells are produced from surplus embryos of in vitro fertilization procedures used to help infertile women get pregnant.
Both are prized for their ability to morph into other kinds of cells, offering the possibility of replacing tissue damaged by ailments such as Parkinson's disease.
But adult cells are thought to be less versatile than embryonic ones, and scientists have had more trouble growing adult stem cells in the laboratory than embryonic cells. Still, adult stem cells could be easier to use if they are taken from patients themselves, because the replacement tissue would have less chance of being rejected. Continue reading
Lancet: Sharp Drop in Maternal Deaths Worldwide The number of women dying in childbirth worldwide has dropped dramatically, a British medical journal reports, adding that it was pressured to delay its findings until after U.N. meetings this week on public health funding. A new, separate report by a group headed by the United Nations reached a very different conclusion on maternal mortality, saying the figure remains as high as 500,000 deaths a year. The disagreement reveals the politics behind public health, where progress made in tackling a health problem can jeopardize funding. Public health officials are gearing up to ask for billions of dollars at U.N. meetings. U.N. Secretary-General Ban Ki-moon is holding a press conference later Wednesday in New York to kick off a new global initiative on reproductive, maternal and newborn health. The British medical journal Lancet rushed out a paper on Sunday that found the number of women who die in pregnancy or childbirth has dropped by more than 35 percent over 28 years. Richard Horton, editor of the Lancet, said he was disappointed when maternal health advocates pressured him to delay publishing the report until September, after several critical fundraising meetings. He also wrote a commentary in Lancet on the pressure. "Activists perceive a lower maternal mortality figure as actually diluting their message," he told The Associated Press on Wednesday. "Advocacy can sometimes get in the way of science." Continue reading
Britain Mulls Paying Organ DonorsBritain is considering paying organ donors as a way of increasing the number of transplants carried out in the United Kingdom. A consultation being run by the independent Nuffield Council on Bioethics is canvassing opinions from the public and professionals on different incentives which could be provided to potential donors. Ethicists will examine whether laws prohibiting the collection of eggs and organs from dead people should be eased. Medical experts have suggested that organ donors might also have their funeral expenses paid or jump the queue if they need a transplant themselves. Last year about 3,500 transplant operations were carried out in the UK, but 8,000 patients are waiting for organs. Cancer Research by U.S. Disorganized, Underfunded, Study Says (Bloomberg) - The U.S. government's cancer research network is "approaching a state of crisis" as waste and inefficiency cause 40 percent of late-stage trials it funds to be abandoned before completion, a report found. The government-funded National Cancer Institute's clinical trials group isn't able to effectively study the benefits of new and current treatments, according to the analysis by the Institute of Medicine. Among the report's recommendations is increasing funding for cancer studies, simplifying the process of designing trials, and offering incentives for doctors to do such research. The NCI's network of cancer centers and doctors tests cancer treatments on 25,000 patients a year, with an annual budget of about $145 million, the report said. Cancer kills about 560,000 people in the U.S. each year, the second-biggest cause of death behind heart disease, according to the Centers for Disease Control and Prevention in Atlanta. "If the clinical trial system does not improve its efficiency and effectiveness, the introduction of new treatments for cancer will be delayed and patient lives will be lost unnecessarily," the report said. Continue reading
An Insurer's New Approach to Diabetes
[nytimes] This could be one glimpse of the future of health insurance. The UnitedHealth Group, one of the nation's largest health insurers, is teaming up with the Y.M.C.A. and retail pharmacies to try a new approach to one of the nation's most serious and expensive medical problems: Type 2 diabetes.
Rather than simply continuing to pay ever-higher medical claims to care for its diabetic customers, UnitedHealth is paying the Y.M.C.A. and pharmacists to keep people healthier. The result, they hope, will be lower costs and lower premiums for everyone.
The insurer will announce on Wednesday that it will work with Y "lifestyle coaches" in seven cities to help people who are at risk for diabetes lower their odds of developing the disease by losing just a modest amount of weight. The Y already offers a program that has had success in clinical tests of such efforts, in 16-week programs that help people learn to eat better and exercise. Continue reading
Obama's new Presidential Commission for the Study of Bioethical Issues
[whitehouse] President Barack Obama announced his intent to appoint the following individuals to the Presidential Commission for the Study of Bioethical Issues:
- Lonnie Ali, Member, Presidential Commission for the Study of Bioethical Issues
- Anita L. Allen, Member, Presidential Commission for the Study of Bioethical Issues
- Barbara Atkinson, Member, Presidential Commission for the Study of Bioethical Issues
- Nita A. Farahany, Member, Presidential Commission for the Study of Bioethical Issues
- Alexander G. Garza, Member, Presidential Commission for the Study of Bioethical Issues
- Christine Grady, Member, Presidential Commission for the Study of Bioethical Issues
- Stephen L. Hauser, Member, Presidential Commission for the Study of Bioethical Issues
- Raju Kucherlapati, Member, Presidential Commission for the Study of Bioethical Issues
- Nelson Michael, Member, Presidential Commission for the Study of Bioethical Issues
- Daniel Sulmasy, Member, Presidential Commission for the Study of Bioethical Issues
The Commission for the Study of Bioethical Issues will advise the President on bioethical issues that may emerge from advances in biomedicine and related areas of science and technology. It will work with the goal of identifying and promoting policies and practices that ensure scientific research, health care delivery, and technological innovation are conducted in an ethically responsible manner. These candidates will join the current Chair, Amy Gutmann, and Vice-Chair, James Wagner, as Members on the Commission.
President Obama said, "I am grateful that these impressive individuals have decided to dedicate their talent and experience to this important Commission. I look forward to their recommendations in the coming months and years." Continue reading
Helping Patients Face Death, She Fought to Live
[nytimes] By the time she was 38, Dr. Desiree Pardi had become a leading practitioner in palliative care, one of the fastest-growing fields in medicine, counseling terminally ill patients on their choices.
She preached the gentle gospel of her profession, persuading patients to confront their illnesses and get their affairs in order and, above all, ensuring that their last weeks were not spent in unbearable pain. She was convinced that her own experience as a cancer survivor - the disease was first diagnosed when she was 31 - made her perfect for the job.
In 2008, while on vacation in Boston, she went to an emergency room with a fever. The next day, as the doctors began to understand the extent of her underlying cancer, "they asked me if I wanted palliative care to come and see me."
She angrily refused. She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on.
While she and her colleagues had been trained to talk about accepting death, and making it as comfortable as possible, she wanted to try treatments even if they were painful and offered only a 2 percent chance of survival. When the usual cycles of chemotherapy failed to slow the cancer, she found a doctor who would bombard her with more. She force-fed herself through a catheter and drank heavy milkshakes to keep up her weight. Continue reading Happy Spring, and all the best from New York, |
