Parents 'in dark' over baby research

[Guest guest]

http://news.bbc.co.uk/hi/english/health/newsid_1070000/1070523.stm

Friday, 15 December, 2000, 02:33 GMT

Parents 'in dark' over

baby research

Most parents are confused by requests to

allow their babies to be used in medical

projects, according to research.

And some parents are being unduly pressurised

to give their consent, it is claimed.

Doctors must get

parental consent for all

medical procedures on

children - and that

consent is not fully

valid unless the adult

has a proper

understanding of the

nature and risks.

But research in The Lancet medical journal

found that a slim majority of parents in nine

European countries, including the UK, had not

fully given their consent.

The researchers discovered that 42 parents

out of a sample of 200 did not fully understand

the procedure or treatment and 43 had simply

not been given enough information.

In a further 21 cases, there was a question

mark over whether parents had been pressured

into signing the consent form.

The study is released just a day after the

publication of a British Medical Association

book giving guidance to doctors on the dos

and don'ts of obtaining consent from patients.

It advises doctors how to decide whether

patients are mentally competent to give

consent, and on the impact of the

recently-introduced Human Rights Act.

Beefed up process

Only 5% of doctors questioned had been given

some form of training about the right way of

seeking consent.

The investigators suggest that the consenting

process could be beefed up by making sure all

staff, including researchers, receive guidance

on how to do it.

In addition, parents should be given written

material about operations or treatments.

Ms Suzette Woodward, assistant director of

clinical governance at Great Ormond Street

Children's Hospital in London, has carried out

her own investigation into the quality of

consenting.

She found that the majority of parents were

satisfied with what they were told, but

thought this might be the result of a good

result in the subsequent operation.

Closer analysis found that a third of parents

wanted more information about the potential

risks or complications.

She told BBC News Online: " I think strongly

that even if they are told about the risks, they

are not absorbing it.

" It needs to be explained in a way that they

can remember it.

" I think doctors and nurses need to be trained

at a very junior level. At the moment they

learn from osmosis which is a shame. "

The issue of consent figures strongly in the

inquiry into the retention of organs from

children who died at Alder Hey Hospital in

Liverpool.

Parents claimed they had not been properly

informed that organs could be kept for

research.

A report into the affair is expected early in the

New Year.

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