National meetings, genes and destiny

We took over a school in North London for the day.  Around 250 adults, 70 children in the creche, 30 8 – 12 year olds in their own specialist workshops and a handful of donor conceived young people over 13.  The buzz as people arrive and make connections with families they have met before, the tentative or anxiously drawn faces of those there for the first time becoming relaxed and chatty as the day wears on, the gorgeous babies giving hope to those still to conceive…all this and much more makes up a DCN national meeting.

The overall message of Professor Marcus Pembrey’s presentation is I think summed up by the phrase, ‘DNA is not destiny’.  There seem to be three factors influencing how inherited genetic traits and tendencies express themselves.  These are the copies of genes inherited from male and female progenitors, the environment in which a child is raised, including in the womb, and the parenting a child receives.  Most of these are plastic, ie. capable of being reversed or altered in some way by changes in parenting or the environment.  It is only the Mendelian genes, where an autosomal dominant mutation of either of an individual’s two copies of a gene causes conditions like Duchenne Muscular Dystrophy or Huntington’s disease, that do not seem to be subject to environmental influence. Most of the current state of knowledge about genetic inheritance is at it’s extremes, in disorders like the ones named above.   It was, however, fascinating to learn that environmental influences can turn some functions of a gene on or off temporarily (until that influence has passed) but that others are affected on a more permanent basis.  It also appears that some people are genetically much more likely to respond to conditions and stimulants in their environment (including parenting), than others.  So if changes occur, such as parents shifting their parenting style, genetically highly responsive children will change their behaviour very quickly.  Professor Pembrey suggested that SuperNanny on TV instinctively picks families with highly responsive children to work with, hence the ‘miracle’ results in short periods of time.  So genetically, some children/people are ‘poised to respond’ whilst others are not.  There are advantages and disadvantages to both positions.

As someone with no scientific education whatsoever, a good bit of Professor Pembrey’s presentation was beyond my understanding and I worried that others would feel that they had not gained enough that they could apply to their situation as donor conception families.  But despite some people admitting there were points at which they ‘zoned out’ most seemed to come away with something that increased their understanding.  As one man said to me, “actually it was the very complexity that I felt was a refreshing counter-balance to all the simplistic stuff you read about genetic inheritance in the press”.

There was little in Professor Pembrey’s talk that was directly to do with donor conception but there was much to be deduced from it.  A direct question at the end about the matching of recipients with donors brought an equivocal response, but it certainly seems that it is only physical characteristics – height, skin colour, eye and nose shape etc. that can be certain of being part of a mixture of inherited characteristics.  It is far less clear that things like personality, intelligence, musical or sporting ability are directly heritable as there are so many epigenetic factors that come into play with regard to the switching on or off of gene function.  Another questioner expressed anxiety about some women needing egg donation who use epigenetics as a way of trying to rub the donor out of the picture in the creation of a child. In response Professor Pembrey agreed that this tendency was worrying and referred to “epigenetics as the new palmistry”.  He added that Progress Educational Trust had applied for funds to run three events, each focusing on one element of the donor triangle – Donor, Recipient and Offspring – and promised that the topic of epigentics and egg donation would be covered in the series.  He invited members to subscribe to Bio-News to keep up to date with all issues relating to assisted reproduction, genetics and embryo/stem cell research.

In summing up he referred back to the title of his presentation, Nature/Nurture: What Do We Really Know, concluding that actually the state of knowledge is still in it’s infancy with so many things still to discover. And maybe, as another questioner said, one of the factors still to be uncovered is some kind of inherent individualism because so many children, donor conceived or not, seem to be so much themselves with traits and talents that apparently have nothing to do with the genes, parenting and environment triangle identified at the beginning of the talk.   So, no simple answers.

The shorter talk after lunch was by DCN member Ted who has a mixed family – one child conceived without donor help and one with the help of a sperm donor.  With the aid of family photos he reflected on his personal experiences of family life with genetic and non-genetic connections.   This spoke to me very movingly as I have a similar family and, like Ted, have also experienced unexpectedly strong feelings on becoming a grandparent for the first time.   Ted has a very warm yet direct style of speaking and he was clear that he valued both the sameness of the looks and personality traits he shares with his daughter and the differences in his son.  They are loved equally but differently.  What has made everything gel in this close family is the openness (or good old fashioned plain speaking as Ted might put it) about changes in relationships – each child was conceived in a different marriage –  secondary infertility, donor conception and the many questions that the two children, now adults, have had over the years.  I couldn’t agree more.

In between these sessions all participants met in two pre-arranged small discussion groups, a general one following Marcus Pembrey’s talk and more specialised ones in the afternoon.  Each had a facilitator who is usually a parent and who often also brings skills in running groups from their own work.  Children join parents for a picnic lunch around tables in the refectory.  And at some point in between Walter vies for the world record in  running the shortest AGM.

Thanks to Nina’s fantastic organisation and hours and hours of ‘below the iceberg’ planning, this meeting was probably the smoothest running of any we have had over the years.  But we are all very experienced now, we know this formula works and the thanks and smiling faces from participants as they left were a great reward.  Members also donated hugely generously to the ever present funding deficit and we will be sharing the proceeds with Progress Educational Trust as a thank-you to Marcus Pembrey.

This morning, Sunday, Walter and I spent a couple of hours with two donor conception parents who were part of a small contingent from Germany who came to Saturday’s meeting.  They are keen to set up an equivalent organisation in their country and were looking to our experiences over the years for hints and tips on right and wrong ways of going about it.  Towards the end one of them asked, “Do you ever get fed up with donor conception issues?”  I answered truthfully that sometimes I would gladly run away and leave it all behind, but that in the end the topic is so fascinating, so personal and so rewarding when we are able to help someone see the light at the end of a very complex tunnel, that I doubt if either of us will ever retire completely.  It’s a privilege to help.

12th June 2012: As a post-script for those of you coming back to this post or looking for something on epigenetics, here is a wonderful site with graphics and text that give excellent explanations of the function of epigenetics in altering gene expression.

http://learn.genetics.utah.edu/content/epigenetics

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About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
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One Response to National meetings, genes and destiny

  1. Anna says:

    Really enjoying your informative blog Olivia! Great work

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