Tuesday, 12 July 2005 ·  Issue 167

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BioEdge 167: Living with locked-in syndrome

IN THIS WEEK'S BioEDGE


bullet 
Living with locked-in syndrome
      New Zealand rugby player tells his story
bullet 
California baby 13 years in the making
      ... after many IVF hiccups
bullet 
Egg market needed, says bioethicist
      Extra cash for poor women
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Missed opportunities with new UK screening test
      Some Down syndrome children might be born
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Should bioethicists accept industry funding?
      Bunfight in bioethics community
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Hundreds of millions lost in California surgery scam
      Crooked clinics organising surgery fraud
bullet 
Selling kidneys in Iraq
      In hard times, doctors ask no questions
bullet 
IN BRIEF: Terri Schiavo; abuse denied

Living with locked-in syndrome

An extraordinary account of life with locked-in syndrome by a young New Zealand rugby player has been published in the British Medical Journal. Nick Chisholm collapsed during a game in 2000. Ever since he has been fully conscious and aware but almost unable to respond. It took his doctors a while to realise that he was not in a vegetative state. "All my senses are normal, if not enhanced (sight and hearing). I'm just left trapped inside this body. All my muscles wouldn't work. Basically I couldn't talk, which went first; then I couldn't walk, eat or excrete." Now he "talks" by spelling out words a letter at a time by staring at letters on a large board.

Despite his incredible disability, Mr Chisholm still wants to live, although he often feels frustrated and angry and has occasionally entertained thoughts of suicide. He has good carers and has made new friends after the accident. He attends his club's rugby matches. And by dint of great effort he has recovered some movement in one of his hands -- enough to give the finger to a doctor who had told him that his condition could never improve.

"Some people say how determined and stubborn I am," he writes. "But to cope with this and to have hope of full recovery you have to be. I could just moan constantly and deteriorate by staying in bed, but I want the old Nick back again, really badly.

"It is definitely a crazy, mixed-up world. I'm just glad to still be alive-most of the time anyway. I accepted the fact that the accident happened, long ago. Shit definitely happens; I just have to make the most of each day in my journey towards recovery." ~ BMJ.com, Jul 9   

California baby 13 years in the making

Laina Beasley and her mother Debbie -- San Francisco Chronicle A California woman has given birth to her third triplet 13 years after the first two were born. It is the longest time that a IVF embryo has been frozen and still resulted in a healthy baby.

The story of Laina Beasley is more than an IVF record. It is a classic example of the myriad complications of assisted reproductive technology. Debbie and Kent Beasley met in the late 80s. They each had children from previous marriages, but together they were unable to conceive. They resorted to IVF at the University of California at Irvine and twins were born. Some embryos were left frozen in the clinic.

In 1995 the Beasleys learned that their fertility doctor, Ricardo Asch, was a crook. He had been taking eggs from women without their consent and creating embryos which he would implant in other women or send to laboratories for research. (The Orange County Register won a Pulitzer Prize for its coverage of the scandal.) The Beasleys were able to retrieve only eight of their 12 embryos. This caused them immense grief, because as devout Christians they regarded each as a human life.

In 1996, Debbie tried to become pregnant again with these embryos. This time she had a severe allergic reaction to the fertility drug Lupron and it took her seven years to recover. Then she tried again to conceive. Her doctor this time was Dr Steven Katz, who has since become the centre of another IVF scandal. Earlier this year Katz was disbarred for having implanted an embryo into the wrong woman and waiting a year to inform his patients about the mix-up. But the Beasleys still think of him as "an amazing, compassionate man". With his help, Laina was born.

Not everyone in the family thought that the new arrival was a good idea. Kent has two children and six grandchildren by a previous marriage and was worried about coping. Debbie's daughter from her first marriage ran away from home for a week when she heard that her mother was pregnant again. ~ San Francisco Chronicle, Jul 5   

Egg market needed, says bioethicist

Some bioethicists want to establish a market for women's eggs to enable embryonic stem cell research to go forward. In an article in the New England Journal of Medicine, a journal which is a muscular supporter of ESC research, Bernard Lo, of the University of California at San Francisco, says that a ban on buying eggs ignores the existence of a competitive market to supply the IVF industry. Some companies regularly place ads in university newspapers for eggs from young, white, well-educated women.

Lo says that a ban discriminates against poor women who might need extra cash to balance their budgets: "This apparently neutral rule that we're not going to pay anybody for research in fact means you are closing off financial opportunities for women of certain socio- economic and ethnic background," he says. "We pay people to undergo risks in other types of research. It doesn't seem fair to have [egg donors] undergo clear medical risks and not offer them something for that." However, the issue is so fraught that even his own university has not authorised paid egg donation. ~ New England Journal of Medicine, Jul 7   

Missed opportunities with new UK screening test

Parents may miss opportunities to abort handicapped children if a new type of prenatal genetic testing is adopted in the UK, complain researchers in the most recent issue of The Lancet. The UK National Screening Committee recommended last year that new screening programs for Down Syndrome do not have to include karyotyping, a process which analyses a person's 23 chromosome pairs but takes up to 14 days to produce. Instead it recommends quicker and simpler tests called FISH or PCR.

Dr John Crolla, of Wessex Regional Genetics Laboratory, says that the new policy will result in substantial numbers of liveborn children with hitherto preventable mental or physical handicaps. This represents, he contends, a substantial change in the outcome quality of prenatal testing offered to couples in the UK. ~ The Lancet, Jul 9   

Should bioethicists accept industry funding?

Industry-funded bioethics articles should not be published by professional journals, a prominent American bioethicist argues in The Lancet. Carl Elliott, of the University of Minnesota, says that mere disclosure of financial interests by his colleagues is unlikely to do away with conflicts of interest. This approach has not succeeded in eliminating bias amongst clinicians -- research shows that doctors who accept gifts are still more likely to prescribe drugs from a generous benefactor, even if they do not believe they have been influenced.

Articles on the ethics of stem-cell research have been funded by Geron, Elliott says, and the ethics of placebo-controlled trials for mood-altering drugs, has been funded by antidepressant manufacturers. "Disclosure policies raise a red flag and should be retained, but they do nothing to eliminate the real problem of industry funding, which is not secrecy but influence-peddling... If bioethics scholarship is to retain any measure of independence and credibility, it will need to take much stronger measures."

Dr Elliott's high-minded campaign to purify bioethics of the taint of undue influence has outraged some of his colleagues. Glenn McGee, editor of the American Journal of Bioethics (which was roundly criticised by Elliott), complained that "the notion that in taking funding from industry I or my colleagues became tools of industry is mean-spirited innuendo and nothing more."

The real problem is quite different, says McGee: "a well developed neo-conservative bioethics 'movement' now, a virtually unadulterated tool of the Bush administration that has most recently busied itself with apologetics for the Bush administration position on stem cell research."

The problem of industry ties to bioethics is clearly not a simple one. As McGee points out, medical schools rely heavily on industry funding, so even Elliott's work has been indirectly funded by industry. And he asserts that he cannot think of a single instance of corporate funding corrupting bioethicists' judgment -- with the possible exception of Republican donations to bolster the case for keeping Terri Schiavo alive. ~ Lancet, Jul 8; blog.bioethics.net   

Hundreds of millions lost in California surgery scam

Doctors are generally assumed to be honest -- but an investigation into massive insurance fraud in southern California shows that this is not always the case. Hundreds of people, many of them recent immigrants unfamiliar with the US health case system, were apparently paid to undergo routine procedures while medical centres pocketed the insurance cheques. According to the New York Times, the FBI estimates that insurers have probably lost US$500 million in this scam. (The National Health Care Anti-Fraud association calculates that 3 or 5 per cent of the US$1.7 trillion spent on American health care in 2003 was lost to fraud - at least $51 billion.)

Earlier this year Blue Cross and Blue Shield companies from several states filed a civil suit against nearly a dozen clinics. They say that these centres recruited people "from across the country to come to the clinics and undergo completely unnecessary diagnostic and surgical procedures, so that the clinics and surgeons could submit phoney insurance claims." Some of the surgery was not only unnecessary but risky.

One couple interviewed by the Times, Julio Hernandez and Sandra Padilla, of Phoenix, visited a clinic in Anaheim several times and were paid about US$400 for each procedure. Then cheques arrived from insurers for tens of thousands of dollars. A lawyer from the clinic told them to hand over the cheques and threatened them with lawsuits, jail and deportation if they did not comply. ~ New York Times, Jul 10   

Selling kidneys in Iraq

Iraq also has a problem with illegal surgery. The issue there is a black market in kidney transplants. Kidney disease is widespread and more than 5,000 Iraqis urgently need transplants. The problerm is acute enough for the Ministry of the Interior to have formed a special section to track down organ gangs. Its head told the UN news agency IRIN that three negotiators and a donor had recently been arrested. The donor had been forced to donate his kidney to pay back money to the gang.

Tapping into the black market is easy, according to IRIN. At the main gate of Bagdad's Karama hospital, a street vendor promises to organise a transplant. "I can get you a healthy kidney," he says. It will cost you US$2,000 to $3,000. You just have to give me your blood type and I will get if for you even before you have finished a cold Pepsi."

Doctors are not necessarily part of the trade, but tend not to ask many questions. "At the end of the day, it is saving a life," says Dr Karima Abbas, a surgeon at Al-Khayal Hospital. "We don't believe in the buying and selling of kidneys, but these are very difficult times in Iraq." ~ IRIN, Jul 6   

IN BRIEF: terri Schiavo; abuse denied

  • Florida governor Jeb Bush has closed state inquiries into the Terri Schiavo case after a review by a state attorney. Prosecutors reviewing the evidence found no new information and said that it was unlikely that criminal acts were responsible for the Terri's collapse and subsequent brain damage in 1990. ~ St Petersburg Times, Jul 8

  • There are no widespread problems in the treatment of terror suspects by military health care workers, the US Army's surgeon- general has said after surveying about a thousand medical personnel. Lt Gen Kevin C. Kiley said that he could not verify allegations that doctors or medics had falsified death certificates or hid evidence of beatings. He admitted that he had found some problems in medical record-keeping and some vague policies, but these were being corrected. ~ AP, Jul 7   

     

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