BioEdge 231 -- Tuesday, 12 December 2006

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BioEdge 231: Some disabled parents use IVF to create disabled children

THIS WEEK


bullet 
Some disabled parents use IVF to create disabled children
      Parents feel closer to their offspring
bullet 
Australia legalises therapeutic cloning
      Scientists hope to begin soon
bullet 
NIH scientist pleads guilty to conflict of interest
      Accepted consulting fees without disclosure
bullet 
Stem cells from aborted foetuses could help stroke victims
      Claim by UK company
bullet 
Church-state row in France over stem cells
      Telethon denounced for supporting embryo research
bullet 
IN BRIEF: echoes of Hwang; New Jersey; Queensland ban

SOME DISABLED PARENTS USE IVF TO CREATE DISABLED CHILDREN

An upcoming article in the journal Fertility and Sterility shows that some disabled parents in the US are using pre-implantation genetic diagnosis (PGD) to create children like themselves. The two disabilities mentioned are deafness and dwarfism. A survey of 190 American IVF clinics recently found that 3% had deliberately used PGD at some stage "to select an embryo for the presence of a disability".

Most IVF clinics turn down such requests, but two leading IVF specialists were quoted in the New York Times as saying that they would refer families to more obliging doctors. The Times interviewed Mary Ellen Little, a dwarf who has two daughters with dwarfism. The second was deliberately selected. Some disabled parents feel that having children who share their problems will strengthen family ties.

"The small number of PGD centers selecting for mutations doesn't bother me greatly," writes Dr Darshak M. Sanghavi in an op-ed article. "After all, even natural reproduction is an error-prone process, since almost 1 per cent of all pregnancies are complicated by birth defects -- often by more disabling conditions than dwarfism or deafness." ~ New York Times, Dec 5

Another case of deliberately disabling a child was reported in the Archives of Pediatrics and Adolescent Medicine recently. A six-year- old profoundly retarded girl was given high doses of estrogen to permanently halt her growth so that her parents could care for her at home. She also received a hysterectomy. Her parents wanted to care for her, but were worried about how they could cope as she grew older and bigger.

The decision of the doctors was roundly criticised by women's health activist Dr Adriane Fugh-Berman in the Hastings Center's bioethics forum. "It is unconscionable to use medical skills and tools for purposes that do not in any way benefit the patient. And the ethics committee members who approved this travesty of health care should be forced to have leg-lengthening surgery... If we accept height reduction and organ removal for the convenience of caretakers as an ethical choice, then the path to ethical entropy is laid." ~ Reuters, Nov 1; Bioethics Forum, Nov 6   

AUSTRALIA LEGALISES THERAPEUTIC CLONING

After a year of debate, Australia has legalised therapeutic cloning. In a rare conscience vote (meaning that members of Parliament are not bound by party discipline), a private member's bill passed by a margin of 20 votes. Both the Prime Minister, John Howard, and the newly-elected leader of the Opposition, Kevin Rudd, voted against it, but this had little impact on the way their colleagues voted. The bill had already passed in the Senate.

A last-ditch effort to amend the bill to remove the possibility of using eggs from aborted girls failed. Supporters argued that the bill would then have to be returned to the Senate, where it might end up stranded in yet another debate. In the end, everything medical researchers and the IVF industry wanted was delivered, apart from permission to create hybrid human-animal embryos.

Australia's leading IVF scientist, Professor Alan Trounson, of Monash University predicted that scientists will be using therapeutic cloning within a year to search for cures for chronic diseases. He and other scientists believe that the first application will be drug development. "Drug screening will be where the first real benefits come," said Dr Paul Verma, of Monash. By using human embryonic stem cells, scientists will be able to bypass animal trials and some drug safety trials and the drugs can reach the market sooner and more cheaply.

Although many politicians who supported the bill spoke of cures for loved ones, sometimes choking back tears, those who knew most about the science were more guarded in their optimism. They tended to insist that therapeutic cloning was needed in the short term for drug development and research. Professor Loane Skene, a lawyer and ethicist who chaired a committee which had looked into the issue, was remarkably frank. "It is often said that scientists overestimate what they can achieve in five years and underestimate what they can achieve in 10. So I've been saying to people it won't be us, you and me or our children, it will be our grandchildren [who will benefit from treatments]".

Opponents of the bill, who included several eminent scientists, and a number of doctors, feminists, politicians and church groups -- were bitterly disappointed at the outcome, although it came as no surprise. The director of Australians for Ethical Stem Cell Research, Dr David van Gend, said that politicians had been duped. "Like superstitious peasants they believed the witch doctors who held out hope of miracle cures from cloning. The credulity of these MPs was touching and pitiful. Any disease suffered by any relative became reason enough for them to declare they would not stand in the way of a cure." ~ Sydney Morning Herald, Dec 7; Canberra Times, Dec 8   

NIH SCIENTIST PLEADS GUILTY TO CONFLICT OF INTEREST

A senior US government scientist has pleaded guilty to failing to disclose US$285,000 in payments from the drug company Pfizer. Dr Trey Sunderland of the National Institutes of Health, an expert in geriatric psychiatry, received the money for consulting work on Alzheimer's disease. He had negotiated two five-year contracts with Pfizer without seeking approval and without disclosing it, as required by Federal law.

The maximum penalty for violating conflict-of-interest rules is a year in prison and a US$100,000 fine. Dr Sunderland will probably be told to forfeit what he received. Prosecutors are seeking a two-year suspended sentence. Congressmen are asking why he still has not been fired from his position with the NIH.

No one has been prosecuted for conflict of interest since the early 1990s. Recently, new restrictions on consulting have been introduced by the NIH. Many scientists complain that these are so harsh that they may leave the agency. The regulations bar employees from working for, or owning shares in, drug companies. ~ New York Times, Dec 4; Washington Post, Dec 9   

STEM CELLS FROM ABORTED FOETUSES
    COULD HELP STROKE VICTIMS

A British company has asked American authorities for permission to trial a cure for stroke using brain cells from an aborted foetus. Although opponents of the experiment say that it is a "sick proposal", the company, ReNeuron, says that the foetal cells will multiply rapidly and repair brain areas damaged by strokes. The procedure has already worked with rats, it says.

Safety is a major concern for ReNeuron. The transplanted cells are genetically modified and could potentially multiply wildly and form tumours. However the company says that this is completely under control. It also claims that only one batch of foetal tissue will be needed to treat unlimited numbers of stroke patients. "We only take one single piece of tissue and for that we can grow up enough cells to potentially treat all eligible patients," says Dr Eric Miljan, ReNeuron's head of stem cell discovery. "And we never have to go back to that tissue again. We can provide a renewable source of cells in order to treat a large patient population."

Pro-life lobbyist John Smeaton denounced the proposal. "He told the BBC that "It involves cannibalising an unborn child. It's an unethical in every way - killing one member of the human race to help another." ~ BBC, Dec 5   

CHURCH-STATE ROW IN FRANCE OVER STEM CELLS

"A polemic without precedent" was how Le Monde described an attack by the Catholic Church's hierarchy on a fund-raiser for muscular dystrophy. For about 20 years, the French Muscular Dystrophy Association has run a popular annual telethon to bankroll medical research. Last year it raised US$138 million in donations. However, Cardinal Philippe Barbarin, the archbishop of Lyons, has pointed out that some of the funds will be channelled into human embryonic stem cell research. "For us, these embryos are not things, but human beings," he told journalists. "And from the depths of our faith, we cannot accept that they are selected, destroyed, the objects of experimentation." France allows embryo research on "spare" IVF embryos.

French politicians, who apparently are unaccustomed to denunciations from clerics, unlike their counterparts in "Anglo-Saxon" countries, were infuriated. "It's not up to the church to put any pressure on families who have recourse to genetic diagnoses, and even less to to make the totality of donors feel guilty," said Manuel Valls, a member of parliament and the mayor of the town where the association is based. Even President Jacques Chirac spoke out in support of the telethon. He welcomed 100 telethon leaders to the Elysée Palace and praised them for giving "honour to morality and to the nation".

The conference of French bishops has attempted to make it clear that it was not calling for a boycott of "this work of generosity and solidarity". ~ New York Times, Dec 8   

IN BRIEF: Echoes of Hwang; New Jersey; Queensland ban

Echoes of Hwang: Another article in Science about embryos has been found to contain fraudulent data. Michael Roberts, of the University of Missouri-Columbia, has acknowledged that a former overseas post- doctoral fellow had digitally altered images of mouse embryos for an article in the February 17 issue of the journal. ~ AP, Dec 7

New Jersey: Legislatures are about to approve a US$500 million plan to make New Jersey a centre for human embryonic stem cell research. Of this, $270 million would be spent on building, and $230 for research. ~ Philadelphia Inquirer, Dec 4

Queensland ban: Two hospitals in the Australian state of Queensland have decided not to train Chinese transplant surgeons because of concerns that China uses organs from executed prisoners. The move was prompted by lobbying by the Falun Gong organisation, which claims that organs are being removed from members detained in Chinese prisons. ~ Herald Sun, Dec 5   

  

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Australasian Bioethics Information
ISSN 1446-2117
Website:www.australasianbioethics.org
BioEdge editor: Michael Cook
New Zealand Contributing Editor: Carolyn Moynihan


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