Group seeks to furnish facts on stem cells

 

DEBUNKING FALSE medical claims, educating the public and lobbying government will be key aims of a new body launching today, the Irish Stem Cell Foundation.

A group of Irish doctors and scientists has established the foundation and opened a website, www.irishstemcellfoundation.org, that goes live today.

“We are an independent, not-for-profit organisation. We want to give the facts as scientific facts,” stated co-founder Dr Stephen Sullivan, originally from Cork and formerly a researcher in the Harvard Stem Cell Institute in Boston.

He joined with Prof Orla Hardiman, consultant neurologist and epidemiologist at Beaumont Hospital and Health Research Board clinical scientist, and with Prof Louise Kenny, professor of obstetrics at University College Cork and a consultant obstetrician and gynaecologist at Cork University Maternity Hospital, to establish the foundation.

The motivation to form the body came from public confusion about stem cells, Prof Hardiman said yesterday.

The foundation was needed “so that people will understand the benefits and limitations of stem cells”, she stated.

“It will put a degree of reality into the claims made for stem cells in neurological disease. People often have an over-optimistic view of what can be achieved.”

The body would most likely become involved in advocacy, but could also help foster debate on the issues involved, Prof Hardiman said.

“Part of the remit is to offer up a debate on stem cells and also look at the exploitation of patients going abroad.”

Dr Sullivan was scathing about the misleading claims being made for untested stem cell treatments offered abroad.

Many patients were tempted to spend money to receive therapies that had not been shown to be safe.

“These are not even being done in the lab, let alone with patients,” he said.

“It is becoming a huge industry and they are offering treatments that not only are unsubstantiated but are dangerous. People are paying huge amounts of money for a false hope.”

Last April, the parents of a child with a rare medical condition spent €60,000 for controversial stem cell treatments in China.

The child’s mother, Maria Kieran, defended the family’s choice, acknowledging that there was a possibility the treatment would make no difference at all.

Dr Sullivan said the website would provide scientifically accurate, up-to-date information about such treatments and whether they could be trusted.

It would also serve as a source of information for the media, with experts based both here and abroad available to comment on issues raised.

The website will also provide links to other scientifically accurate internet websites such as that for the International Society for Stem Cell Research, he said.

“The idea came from other stem cell networks such as the New York Stem Cell Foundation. They are nodes of experts and there was no node in Ireland,” Dr Sullivan stated.

The long-term aim was to lobby government for the introduction of legislative controls that would open up stem cell research here.

University College Cork’s governors voted last October to agree a code of practice to allow embryonic stem cell research.

Trinity College Dublin is drafting a similar code.