Parents kept in dark on baby research

Press, 12 June 1986, Page 31

Parents kept in dark on baby research

NZPA-AP London As many as 2000 babies may have medical research performed on them each year without their parents’ knowledge, a doctor has said. “It seems to be a fairly widespread practice in certain special care units, which doctors publicly admit, because, they say, difficulties in obtaining consent from parents are so great that they don’t even make the attempt,” said Dr Richard Nicholson.

The doctor, editor of a report issued by a working group of the Institute of Medical Ethics, said the research was into many aspects of baby care, including nutrition, ventilation, fluid balance and temoerature control.

A variety of procedures was used in the research, ranging from observation and measurement of children to taking blood samples and examining them in a number of ways.

Dr Nicholson said parental permission should be obtained in all but a very few exceptional circumstances, such as to'improve emergency treatment when there would not be time to obtain consent.

He told a press conference: “We are not producing this report because we think there are an awful lot of frightful things happening to children in this country in the name of research.

“We haven’t filled up the report with lots of shock horror stories. But

there are certainly some practices in this country which we felt were unethical.

“Perhaps the origin of that is that there is such confusion between the various guidelines which are available at present for the conduct of research on children.

“There is considerable confusion, and out of that confusion it’s inevitable that some doctors don’t really know precisely what they should or should not do, ethically, in research on children.”

Asked how many cases there were of research done on children without parents’ consent, he said evidence he had received since the report was written “suggests that hundreds, maybe even one or two thousand, babies each

year have research done on them without parental knowledge.” In the report, which followed a three-year study, the working group said it had studied many reports of research on children, “and few were found that described a project that might have been unethical, though there were some projects that could be described as unkind.”

But the report added: “The one problem that has become apparent during the study is the frequency in the United Kingdom with which parents are not informed that their children are involved in a research project and are not, therefore, asked for their consent to their children’s involvement.”