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Friday, 7 November 2003     ·     Issue 100
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BIOETHICS: UK authority rules out sex selection

IN THIS ISSUE OF BIO-EDGE

Blowing out 100 candles
UK authority rules out sex selection
Americans debate whether obesity is a disease or a sin
IVF babies more likely to be chimeras with mixed genes
US scientists back creation of bespoke embryos for research
US needs Government regulation of IVF, says think tank
Setting the alarm for women's biological clock
Australian scientists find spinal bifida gene
Survivor of persistent vegetative state speaks out
All pregnant women should get blood test screen for Downs
Scientists reject need for regulation of "dangerous" research
IN BRIEF: Peter Singer; face transplant; EU stem cell reports

Blowing out 100 candles

100th The Australasian Bioethics Information newsletter today celebrates its 100th issue. In the rapidly moving world of science, that makes us one of the world's oldest bioethics information services. As we mentioned before, we are marking the occasion with a name change to "BioEdge". We hope to continue offering you the latest in bioethics news for several hundred more issues. You can help us celebrate by asking your friends and colleagues to subscribe.  

UK authority rules out sex selection

infant Parents should not be allowed to choose the sex of their babies, the UK's IVF regulator has recommended after a year-long public consultation. The head of the Human Fertilisation & Embryology Authority, Suzi Leather, says that there was a "huge public consensus" against selection, except for medical reasons. The Health Secretary, John Reid, backed the decision. "I can confirm that as long as I am secretary of state for health, sex selection will only be permitted on compelling medical grounds," he declared.

The deputy chairman of the HFEA, Professor Tom Baldwin, said that the vast majority of people surveyed believed that children should be allowed to develop without pressure to fulfil parental expectations. Many people described a child as a "gift", he said. "The person who is going to receive a gift doesn't know what kind of gift they are going to get. If we think of children as a kind of gift, then we need to hold back and refrain from this extra step of control that sex selection would introduce."

The HFEA's stand was even welcomed by the head of the British Fertility Society, Professor Alison Murdoch. And the director of the watchdog group Human Genetics Alert, Dr David King, commented, "sex selection is the exercise of sexism at its most profound level -- deciding who gets to live. If you are not prepared to accept and parent both a boy or a girl, you should not be a parent."

The HFEA's recommendations need to be given teeth by government legislation, as the sorting of fresh, non-frozen, sperm is not currently covered by its remit. If this happens, the three centres operating in the UK which offer sperm sorting as a means of sex selection will be forced to restrict their services. Couples who want to choose the sex of their child for "family balancing" reasons will be forced to go abroad for treatment. ~ Telegraph (UK), BBC Nov 12 

Americans debate whether obesity is a disease or a sin

overweight Americans The swelling number of overweight and obese Americans has sparked a debate amongst scientists, advocacy groups, federal agencies, insurance companies and drug makers about whether obesity is a disease or a moral failing. Those in favour say that science has clearly established that obesity is a discrete medical condition. Official classification as a disease would help to destigmatise the condition and remove hurdles to prevention and treatment. Opponents say that obesity is only a risk factor for bad health. Labelling it a disease would distract scarce resources from other programs and medicalise it.

However, the weight of government opinion seems to be shifting toward the disease status. The Internal Revenue Service last year ruled that obesity is a disease for tax purposes, thereby making weight-reduction programs tax-deductible. Health officials are also studying whether weight-control therapies should be covered by public health insurance, a development which makes private insurers nervous.

"We certainly recognise and agree that obesity is a significant problem," says one federal official. "The question is whether losing weight, which people can do without ever seeing a provider [of weight control] is something a health care system ought to pay for."

Underlying the scientific debate is the widely-held belief that obesity is basically a sign of moral weakness. "There are a lot of people who believe obesity is a simple failure of willpower," says the president of the American Obesity Association, Richard L. Atkinson Jr. "In my mind, there's no doubt whatsoever that obesity is a disease. If diabetes is a disease, if heart disease is a disease, then obesity is a disease." ~ Washington Post, Nov 10 

IVF babies more likely to be chimeras with mixed genes

Human chimeras -- people who are a mixture of tissues from two genetically distinct individuals -- may become more common because of IVF treatment. Chimeras result when the cells of twin embryos fuse together. It is extremely rare, but the rate of twinning in IVF is 40 times the normal rate. And Dr Margot Kruskall, of Beth Israel Deaconess Medical Center, in Boston, recently told the New Scientist magazine that fertility drugs can heighten the possibility of fused embryos.

IVF-linked chimerism was first detected in 1998, when a UK team reported the case of an IVF baby who appeared to be male, but had an ovary and a fallopian tube in the left-hand side of his internal reproductive system. A bizarre case of natural chimerism came to Dr Kruskall's attention when a 52-year-old woman discovered that two of her three grown-up sons did not appear to have inherited the genes which were identified from her blood samples. The most likely explanation is that the woman had fused with her non-identical twin as an embryo. In her ovaries, cells of both twins co-existed. ~ Telegraph (UK), Nov 13 

US scientists back creation of bespoke embryos for research

human embryo A group of American bioethicists and scientists has called for a national embryonic stem cell bank to maximise genetic diversity and to ensure that existing stem cell lines are not contaminated by mouse viruses. Sponsored by Johns Hopkins University, in Baltimore, the panel wants to identify and solicit a diverse range of sperm and egg donors, create a range of embryo types and then destroy them for their stem cells.

One concern of the group is that the existing range of Federally- approved stem cell lines has been derived from embryonic stem cells grown on mouse cells. These could conceivably infect humans with mouse viruses. But more controversially, the existing limits on the number of embryonic stem cell lines also restrict the range of racial backgrounds which could be treated with future therapies. Afro-Americans are far more genetically diverse than white Americans and consequently more stem cell lines must be created to cater for them.

"Society may well have to choose what it values more -- ensuring that all benefit safely and fairly from advances in stem cell science, or protecting embryonic human life," said Ruth R. Faden, a Johns Hopkins bioethicist. ~ AP, Nov 11; Johns Hopkins press release, Nov 10

Ironically, the panel made its proposals public on the same day that Pope John Paul II denounced such views. "Any treatment which claims to save human lives, yet is based on human life in its embryonic state, is logically and morally contradictory, as is any production of human embryos for the direct or indirect purpose of experimentation or eventual destruction," he told scientists in Rome. ~ AP, Nov 10 

US needs government regulation of IVF, says think tank

A leading American bioethics think-tank, The Hastings Center, has proposed that the US Government set up a national authority to regulate reproductive medicine. The "Reprogenetics Technologies Board" -- which would resemble the UK's Human Fertilisation and Embryology Authority -- would make policy on experiments with human gametes, set a code of practice for IVF practitioners, and promote public debate about embryo research.

The report reflects concerns in the US that the market is currently the only regulator of reproductive science. The authors of the report agree that the reprogenetics train has already left the station. "But while this train certainly is not going to return to the station," they conclude, "it would be a terrible mistake to act as if its destination were foreordained". ~ The Scientist, Nov 13; Reprogenetics and Public Policy 

Setting the alarm for women's biological clocks

fertility clock A South Australian IVF researcher has developed a test which will tell women how many more years of fertility they have left. Professor Robert Norman, of Adelaide University, told a conference on menopause in Hobart that it would help women to fit babies into their plans for careers and relationships. Women would no longer experience the shock of discovering that they had delayed motherhood too long and were unable to have children naturally.

The diagnostic service combines blood tests which measure hormones produced by the ovaries, indicating the number and quality of eggs, and ultrasound scans which pick up the number of developed eggs. Although the tests have already been used with some IVF patients, further refinements are still needed. "We're still working through the best test and we're working through the best way of counselling people about the results of the test," Professor Norman said. ~ Age, Nov 11 

Australian scientists find spinal bifida gene

Researchers at Royal Melbourne Hospital have discovered a gene which causes the congenital birth defect spina bifida in mice. Further study will identify the same gene in humans, they predict, leading to pre-natal tests for the condition and the possibility of treating it before birth.

Spina bifida is the second most common congenital birth defect and affects 1 in 1000 pregnancies. Although most children with it lead happy and productive lives, it can lead to bladder and bowel disfunction and in severe cases paralysis from the waist down. If it is detected early enough in the pregnancy, most women choose to terminate the pregnancy.

A group in the US has tissue samples from more than 1,000 families affected by spinal bifida. The next step for the Melbourne scientists is to see whether specific changes in the gene can be detected. These would eventually enable doctors to predict couples at risk of having children with spina bifida. ~ Australian, Age, Nov 11 

Survivor of persistent vegetative state speaks out

Kate's Journey A New Zealand woman who appeared to be in a persistent vegetative state for 70 days after a stroke has written a book about her experience. In 1995, 32-year-old California resident Kate Adamson suffered a double brain-stem ponds stroke which left her totally paralysed. After months of convalescence she returned to normal life, although her left side is paralysed. In an interview with Fox Network host Bill O'Reilly Ms Adamson claims that her experience parallels the controversial case of Florida woman Terri Schiavo.

In her book, Kate's Journey: Triumph Over Adversity, she relates her desperation to communicate. "When the feeding tube was turned off for eight days, I thought I was going insane," she told viewers. "I was screaming out, 'don't you know I need to eat?'" It was only her lawyer husband's threat of a lawsuit that persuaded the doctors to put the tube back in. At one point doctors operated on her without enough anaesthetic in the belief that she was a "vegetable", her husband claims, and she felt the pain of the operation. ~ The O'Reilly Factor, Nov 5; www.katesjourney.com 

All pregnant women should get blood test screen for Downs

All pregnant women should receive a blood test for Down Syndrome, not just women over 35, an article in the American Journal of Obstetrics and Gynecology argues. A study of screening methods in England by Dr Rebecca Smith-Bindman, of the University of California at San Franciso, shows that more Down Syndrome children are detected if all women receive a blood test. If it is positive, then it can be followed up with amniocentesis, a procedure which has a 1% risk of miscarriage. ~ AP, Nov 11 

Scientists reject need for regulation of "dangerous" research

Scientists working with technologies which could be used by terrorists should not be regulated, scientists in both the US and the UK have argued. In the US, a National Research Council report recently concluded that existing regulations and self-monitoring are sufficient protection against abuse. In the UK, a Parliamentary committee has suggested that scientists should create an ethical code of conduct to heighten awareness of the potential misuse of their research by terrorists. But Research Council UK expressed doubt that a code of ethics would achieve anything useful.

Concern about terrorism is far from theoretical. An American scientist working on plague, Thomas Butler, of Texas Tech University, is on trial for misusing his samples. Four American Nobel laureates have supported him, saying that the way he has been treated will deter scientists from working in a key area of national security. One of them described the Federal Government's determination to put him behind bars as "McCarthyism". ~ Reuters Health, Nov 12; The Scientist, Nov 5,6 

IN BRIEF: Peter Singer; face transplant; EU stem cell reports

  • Peter Singer Australia's leading bioethicist, Peter Singer, now working at Princeton University, will again venture into political controversy next year with a book entitled "President of Good and Evil: Ethics of George W. Bush". ~ Daily Princetonian, Nov 13

  • Ten Britons have volunteered to become the first in the world to undergo a face transplant. Two teams, from the UK and the US, are competing to be the first to do the procedure. At this stage the biggest obstacle is satisfying critics that the operation is ethical. ~ Evening Standard, Nov 11

  • A comprehensive review of the status quo of embryonic stem cell research has been developed by the European Union. A companion survey reviews the same issues in non-EU countries.  

     

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    Australasian Bioethics Information
    ISSN 1446-2117
    Website:www.australasianbioethics.org
    Director: Dr Amin Abboud
    BioEdge editor: Michael Cook
    New Zealand Associate: Carolyn Moynihan


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