Monday, April 03, 2006

Doctors Vindicated Over Baby Experiment?

Eight years ago, two UK doctors were suspended from their posts for using an experimental treatment on babies in respiratory distress. Instead of intubating the infants (which is standard practice but can cause damage), they used something called Continuous Negative Extrathoracic Pressure (CNEP), which involved putting a box over the baby's chest to create a vacuum that helps the child expand it's lungs and draw in air. In 1998, two years after they published their research, the doctors became the focus of a governmental inquiry because parents complained that they hadn't consented to the use of experimental treatments on their children. The doctors were suspended, the investigation took years -- it uncovered problems with the trial, but the hospital challenged the parents' complaints, saying they couldn't prove they hadn't been told. Then the whole thing seemed to fade away ...

Now, according to an article in today's Independent, suddenly these doctors are "vindicated" because a study has shown that children treated with CNEP during respiratory distress do no worse -- and in some cases do better -- than children who are intubated: "Now aged 9 to 15, the children treated with CNEP had 'substantially higher' language and visual/spatial skills than those given conventional ventilation, the researchers say." The article quotes Professor Sir Alan Craft, president of the Royal College of Paediatrics, saying that this "'pioneering' research has been subjected to 'unprecedented scrutiny ... many lives have undoubtedly been saved by his research.'"

The fact that CNEP works is great news. But saying that this means the researchers are off the hook is risky logic that raises an old issue: The advance of medicine depends on doing research on humans. If you do unethical research that leads to useful results, does it excuse the research practices? Of course not. There was a huge debate about this surrounding the Tuskegee studies (pictured above) -- Tuskegee researchers uncovered a lot of potentially useful information about the clinical course of syphilis, but they did so at a terrible cost. When the trial ended and the ethical problems were uncovered, those results still existed -- some people believed the results shouldn't be cited in future syphilis research because of how the information was obtained. Others said that was silly -- we can't simply ignore the facts they uncovered. There's a huge literature on this. In the case of Tuskegee, no one talked about the researchers being vindicated because some of their results could be medically useful.

I'm not saying this CNEP study is another Tuskegee: I have no idea what really went on with this research, whether the doctors behaved ethically, or whether parent claims about lack of informed consent are accurate. I'm just sayin, it's dangerous to dismiss ethical issues because of scientific results. The only thing that settles ethical questions is further investigation into the research practices, not positive research results.



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