14-1190b-innovation-managing-risk-evidence

we had been at such pains to educate the broader public
to understand was something science, of its very nature,
would always stop short of affirming absolutely, regardless
of the amount of research conducted.
In the week leading up to the debate, the media was
once again full of articles expressing alarm at the prospect
of ‘three-parent families’, further suggesting that somehow
the debate had rolled backwards, and that the good
work done in consultation might have been undone.
But it rapidly became apparent that those taking part in
discussion were now markedly better informed, and had
a clearer grasp on the science and the issues it raised,
than three years earlier. And whenever a non-expert
participated in the discussion, they were clearly drawing on
the large amount of non-technical information available on
responsible websites like that of the HFEA.
All the scientific reports were readily available on the
HFEA website, so it was difficult for those urging delay to
argue that not enough research had been carried out to
guarantee the technique’s safety. On the Today programme,
on the day of the debate, Jeremy Farrar, Director of the
Wellcome Trust, responded to the suggestion that the
mitochondria replacement regulations were premature
by stating firmly that the matter had had “unprecedented
scientific scrutiny”.
The debate itself was remarkably level-headed and
well-informed. It confirmed the fact that discussion was
now taking place based on real information, properly
deliberated on and understood by all the protagonists,
whether they supported the delaying motion or not. And
what swayed the argument towards proceeding with
regulations rather than delaying was the clear evidence
that the public had fully participated in the process. As
one contributor concluded:
“We conducted a structured dialogue to consult
members of the public on what they thought. If they
support them, then so should we, in all parts of the
House.” 10
There is now, I think, little doubt that the new
regulations will come into effect before the end of the
present Parliament. And this example of full consultation
will be on the record as evidence that — if carried out
with sufficient care — we can conduct a genuine dialogue
between science, government and the broader public, so
that fears of risk and uncertainty are properly understood
and allayed.
The last word
Proper engagement of the non-scientific public with
complex science, in order to obtain its consent to
innovation which inevitably carries with it uncertainty
and risk, is not achieved lightly. I am proud to have been
associated with a successful example of such a process,
one which is likely to make the United Kingdom the first
country to carry out an IVF procedure bringing hope to
families otherwise unable to have a healthy child. I give
the last word to one of the members of the expert panel
on mitochondria replacement techniques, Professor Peter
This example of full
consultation will be on
the record as evidence
that we can conduct a
genuine dialogue between
science, government and
the broader public.
Braude:
“As a clinician I am aware that inherited mitochondrial
disorders are horrible diseases that can devastate families.
In the absence of any effective treatment, mitochondrial
replacement therapies offer great hope to families afflicted
by mitochondrial disorders.
Implementation of any new medical treatment is never
wholly without risk, and genetic alteration of disease is an
important step for society that should not be taken lightly.
The panel has worked single-mindedly over a period of
more than three years. It is a shining example of evidencebased
regulation.”
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