Autism Debate Underscores Research Difficulty, Cost Of Disproving Bad Science

CP – When Dr. Noni MacDonald starts talking about the debate over whether childhood vaccinations cause autism, her words are steeped in anger.

She thinks the public ought to be angry, too.

The source of the emotion? The years of time, effort and research funding that has been spent disproving a piece of British research that last week was repudiated by most of the team responsible for it.

MacDonald and others have nothing but praise for the scientists who
had the courage to formally declare their work did not prove a link between
the measles, mumps and rubella vaccine (called the MMR) and rising rates of
autism.

But she sure does begrudge the resources that 1998 article – and more
importantly, the interpretation placed on it by lead author Dr. Andrew
Wakefield – diverted from other areas of autism research.

“The amount of money that the academic research community has
committed to proving that MMR and autism are not related did not go towards
finding out how we can help autism – and that money should have gone there,” says MacDonald, a professor of pediatrics and microbiology at Dalhousie University in Halifax.

“It hijacked the agenda for people that had a particular axe to
grind. They didn’t have good science behind them and yet, they were given the credibility as if they did. And that, then, distracted people from research
that needed to get done with those dollars.”

Leading autism researcher Jeanette Holden agrees Wakefield’s
publication has had a huge impact on the field – one that persists despite
the retraction.
“A lot has gone into this,” says Holden, a geneticist at Queen’s
University in Kingston, Ont., and head of a Canadian Institutes of Health
Research-funded project involving 60 researchers across Canada and the
United States.

Posing questions, challenging dogma – this is the essence of
research.

And critics of Wakefield’s actions are quick to insist they would never want
to stifle that kind of activity.

“You want challenges all the time. You want to rethink. Nothing is
sacred. But you need to do this with a good, firm foundation,” MacDonald
says.

But bad science can skew the agenda, forcing others to move in to mop
up the mess, soaking up scarce resources in the process.
“Should that be up to other scientists to have to prove a point when
someone is going around claiming something? Well, in actual fact, no, it
shouldn’t be up to us. It should be the people who have the hypotheses,”
says Holden.

Still, in the highly politicized world of academic research, it can
also lead advocacy groups – a major source of research funding – down a side
road, tempting those who need access to the funds to take the detour with
them.

What happened with the MMR debate has happened before. MacDonald
notes that in the late 1980s, a theory emerged that the combined diphtheria,
polio and tetanus shot might play a role in sudden infant death syndrome.

The idea was eventually proved groundless. Later research showed
having babies sleep on their backs dramatically reduced SIDS deaths.
“We spent a lot of money showing that it wasn’t (linked), instead of
trying to figure out how to stop and decrease sudden infant death syndrome,”

says MacDonald, who is also co-editor of Pediatrics and Child Health, the
journal of the Canadian Pediatrics Society.

“I think we would have got to the back-to-sleep thing probably five,
10 years earlier here if we hadn’t got distracted by this. And I don’t know
how many lives we would have saved.”

But while MacDonald sees these pursuits as expensive dead ends, some
in the autism community don’t share her vision.

Lisa Simmermon doesn’t believe the retraction of the Wakefield study,
or the rigorous trials that disproved the claim, represent the final answer
on the issue.

Rather than resenting lost research resources, Simmerman – president
of Autism Society Canada – insists more money ought to be spent looking into
the alleged link between the MMR shot and autism.

The society doesn’t believe vaccinations caused autism in all
children who have the condition, Simmermon says. But it doesn’t rule out the
possibility that in a small proportion of vulnerable children, getting the
vaccination may tip the balance.

“The bottom line is there are issues that have been raised and they
affect people’s decision-making about their own children,” Simmermon
insists.

“For the sake of everybody, we need to try to find out what the real
answers are. That’s not a waste of resources.”

© Copyright 2004 The Canadian Press

Dr Wakefield: His Side of The Story

Many of you will know that Dr Andrew Wakefield, who pioneered
research into a link between autism and the MMR vaccine, was strongly
attacked in the London Sunday Times the other week, as reported in the
previous E-News. In particular he was criticised for receiving funds from a
legal aid charity that was representing parents of children who were
possibly injured by the vaccine. His statement follows in full. Please
circulate it as widely as you can.

“Serious allegations have been made against me and my colleagues in
relation to the provision of clinical care for children with autism and
bowel disease, and the subsequent reporting of their disease. These
allegations have been made by journalist Brian Deer who has expressed, in
front of witnesses, his aim of destroying me.

All but one of the allegations, which are grossly defamatory, have
been shown to be baseless. One allegation remains against me personally.
That is, that I did not disclose to the Lancet that a minority of the 12
children in the 1998 Lancet report were also part of a quite separate study
that was funded in part by the Legal Aid Board.

It is the Lancet’s opinion but not mine that such a disclosure should
have been made since it may have been perceived as a conflict of interest.
This is despite that fact that the funding was provided for a separate
scientific study.

It needs to be made clear that the funds from the Legal Aid Board
were not used for the 1998 Lancet study, and therefore I perceived that no
financial conflict of interest existed.

The Lancet defines a conflict of interest as anything that might
embarrass the author if it were to be revealed later. I am not embarrassed
since it is a matter of fact that there was no conflict of interest. I am,
however, dismayed at the way these facts have been misrepresented.
Whether or not the children’s parents were pursuing, or intended to
pursue litigation against the vaccine manufacturers, had no bearing on any
clinical decision in relation to these children, or their inclusion in the
Lancet 1998 report.

It is a matter of fact that there was no conflict of interest at any
time in relation to the medical referral of these children, their clinical
investigation and care, and the subsequent reporting of their disease in the
Lancet.

As far as the 1998 Lancet report is concerned, it is a matter of fact
that we found and reported inflammation in the intestines of these children.
The grant of £55,000 was paid not me but to the Royal Free Hospital
Special Trustees for my research group to conduct studies on behalf of the
Legal Aid Board. These research funds were properly administered through
the Royal Free Hospital Special Trustees.

The Legal Aid research grant to my group was used exclusively for the
purpose of conducting an examination of any possible connection between the component viruses of the MMR – particularly measles virus – and the bowel disease in these children. This is entirely in line with other studies that
have been funded by the Legal Aid Board (latterly the Legal Services
Commission) and reported in the BMJ. If and when this work is finally
published, due acknowledgement will be made of all sources of funding.
It is unfortunate that, following full disclosure of these facts to the editor of the Lancet, he stated that in retrospect he would not have published facts pertinent to the parent’s perceived association with MMR vaccine in the 1998 Lancet report. Such a position has major implications or the scientific investigation of injuries that might be caused by drugs or vaccines, such as Gulf War Syndrome and autism, where possible victims may be seeking medical help and also legal redress.

Health Secretary John Reid has called for a public enquiry. I welcome this since I have already called for a public enquiry that addresses the whole issue in relation vaccines and autism.

It has been proposed that my role in this matter should be
investigated by the General Medical Council (GMC). I not only welcome this,
I insist on it and I will be making contact with the GMC personally, in the
forthcoming week.

This whole unpleasant episode has been conflated to provide those
opposed to addressing genuine concerns about vaccine safety with an
opportunity of attacking me – an attack that is out of all proportion to the
facts of the matter.

I stand by everything that I have done in relation to the care,
investigation and reporting of the disease that I and my colleagues have
discovered in these desperately ill children.

My family and I have suffered many setbacks as a direct consequence
of this work. As a family, we consider that our problems are nothing
compared with the suffering of these children and their families. For the
sake of these children, this work will continue.”

E-Mail zwack.peter@uqam.ca