16 June 2014
ByAppeared in BioNews 758
When the Progress Educational Trust (PET) - the UK charity that publishes BioNews - emerged from the Progress Campaign for Research into Human Reproduction in 1992, I had no idea that I would end up chairing the Trustees for 20 of the last 22 years! I also had no idea in any practical sense about informing the public on advances in assisted reproduction and genetics, and the ethical issues raised by these advances. I only knew that we had to carry the public with us - and some of us had better get on with it.
By this time, clinical research on DNA testing (my area) was linking up with assisted reproduction to develop PGD (preimplantation genetic diagnosis). Incidentally, while many medical professionals think of these as separate, I think the public regard genetics and reproduction as natural bedfellows, if I can put that way. These were the areas on which PET concentrated.
The first PET Trustees were Viscount Craigavon - Janric - who supported us in the Lords, Ginny Bolton, who had been the Campaign President during the passage of the Human Fertilisation and Embryology Bill, and me. I was there because the late developmental biologist Anne McLaren told me to do it and I usually did what Anne suggested. It is fair to say we started with little practical knowledge in either education or public engagement - we learnt as we went along.
I began to ask questions of potential audiences, starting with our children. I favour clarification through diagrams, so I remember being particularly irritated by an over-designed cover for a book on human embryo research that took artistic license to new extremes. It showed an eight-cell embryo the same size as the scalpel blade poised above it, all bathed in a green light. I showed it to my young son. He took one look at the red shadow cast by the scalpel and asked if it was blood! I rest my case.
Countering such Designer Nonsense became a bee in my bonnet that buzzed even louder when I noticed that the cover to 'The Troubled Helix', a book addressing ethical issues in genetics, showed a DNA molecule that was indeed in deep trouble - the four bases were pairing at random (rather than A with T, and C with G, as happens in reality). Successive PET directors, staff and BioNews editors have had to put up with a whole hive full of bonnet bees. I thank them all for their tolerance, but mostly for their huge commitment to PET, hard work and cheerful disposition. It's been fun as well as important to help deliver the benefits of advances in assisted reproduction and genetics to those families and prospective parents that need them most.
One area of particular interest to me has been the long campaign to bring mitochondrial transfer (a new technique to avoid a type of serious genetic condition being passed on from mothers to their children) to clinical trials. This required a combination of scientific vision and embryo research with policy and parliamentary work. I was privileged to be involved in the conference in 1991 when the idea was first floated, and delighted that PET continues to be influential in this matter as I hand over the chair to Fiona Fox. Unlike me starting off as chair all those years ago with 'no idea', Fiona comes with huge experience and lots of ideas for continuing PET's vital work in informing debate on assisted conception and genetics.