Do Genes Matter?

The other evening the Progress Educational Trust (PET), in partnership with the University of Manchester, put on an event called Do Genes Matter?  There were speakers, a specialist lawyer, someone who runs an online service putting donors in touch with potential recipients, a geneticist and an academic who has recently researched donor conception families.  Both the lawyer and the on-line service person are also parents to donor conceived children, as was the person Chairing.  At the end of the evening the audience were asked for a show of hands to answer the question in the title, Do Genes Matter? The answer, as far as I am concerned, is Yes, No, Sometimes and Not Inevitably.  It’s all very complicated.

PET tends to put on very worthwhile events but for me this evening didn’t really come alive.  The question posed perhaps was too wide or was it that the speakers all approached it from different perspectives?  This mixture should have made for a richer experience but somehow for me it made it more fragmented and less satisfactory.  And as far as I was concerned the elephant in the room was that there was no-one on the panel who had been donor conceived themselves.  Not that one DC adult could have represented the whole spectrum of views of donor conceived people but it would at least have been an acknowledgement that of all the stakeholders in the DC triangle, the people who are the result of decisions made by others, have the right to have their view represented.

I wrote the above couple of paragraphs on Friday evening.  Fast forward to Sunday afternoon and I now know that there was at least one donor conceived person in the audience who did not feel able to speak because for her genes matter a great deal.  Her perspective can be viewed here http://daughterofadonor.com/?p=2840

But for the moment let’s go back to what the speakers who did make up the panel said.  The lawyer, who runs a firm specialising in fertility related law, gave examples of a couple of extremely complicated cases which had gone to legal proceedings and where judges in different levels of court had both given precedence to genetic connections and chosen to ignore them.  As a parent of donor conceived children and someone who sees families by donor conception as clients, she was clear that it is warm, supportive and positive parenting that makes the difference to children.

The woman who runs the on-line service – described elsewhere by a prominent HFEA staff member as “the ethical face of on-line sperm donation introduction services” – wanted there to be less distinction between the legal rights and safeguards of clinic based services and those where donor and recipient meet via the internet.  She believes those who need sperm donation (essentially lesbian families in the case of this service) require both the freedom that is possible by meeting a donor on-line and more safeguards in the form of advice with regard to expectations of roles and responsibilities between recipients and donor and more rights for offspring.   In particular she is a strong advocate for a register that would enable recipients and offspring to trace donors in the future and enable half-siblings to know each other.  Currently, sperm donation that takes place outside a licensed clinic does not fall under HFEA regulation and because of this details of all parties, including resulting children, are not included on the register held by the HFEA.

The geneticist  I suspect would not be considered a friend by donor conceived people who believe in the importance of genetic links and particularly the value of having medical histories.  And parents who want to choose their donor down to the last matching detail, were unlikely to be pleased with what she had to say either.  Essentially her message was that as all human beings share 99.9 per cent of their genes, there is a little point in trying to select donors for intelligence, musical or sporting ability because of both the random way in which gene selection occurs and because of the epigenetic impact of environment both inside and outside the womb.  Apart from single gene disorders such as Duchenne Muscular Dystrophy, which can be inherited from one parent, most other serious diseases and conditions need a copy of the mutated gene to be present in both the man and the woman contributing to the make up of the child and, once again, the environment can influence whether or not that gene is triggered.  As long as a good family history is taken at the time of donation, and the donor is clearly told that he or she should update their medical history should something significant come to light- and be given a simple way to do this – then a history of something like coronary heart disease or most cancers, for instance, should not make any difference to resulting children.  It is the nurture they receive and the way their lives are lived that will have the greatest impact on their health.

The researcher’s key message probably was that donor conception families struggle with both the concepts and the language around donor conception a lot of the time.  They particularly struggle with how much emphasis to put on the genetic/non-genetic aspect of relationships and, as was illustrated by a couple of quotes, will often use in the same sentence language which is both deterministic about the role of genes and completely sanguine about a donor conceived child being the child of both parents (when one is infertile or a lesbian couple).  Openness was universally (in those researched) considered  to be ‘the right thing to do’ but often found more difficult to act on…particularly when it came to sharing information with others rather than with children.  The researcher, Carole Smart, whose book with Petra Nordquivst called Relative Strangers I have blogged about before, did not, however, see these mixed feelings as pathological in any way but instead a symptom of people doing their very best in a complex situation to get things as right for the children as they could.  This very much mirrors the stance that both Walter and I have taken and is followed by the Donor Conception Network.  Mixed feelings are absolutely inevitable as we recognise the significance of genes sufficiently to feel a moral compunction to tell our children about their origins- and I would say these days to make sure that they take the lead in language used and the seeking of information – but also claim that genes and genetic connections are insignificant in the making of warm family bonds.  Those families that can manage these mixed feelings are those that are likely to be successful at raising open-minded and resilient children who are able to integrate and manage the fact of being donor conceived in a way that does not damage them.  Those that cannot may find their own troubled feelings being visited on their children.  As I said at the beginning, genes both matter a lot and not at all.

PET events always only allow speakers ten minutes each and considerable time for audience participation and debate.  A mother of a donor conceived daughter spoke about the obsession that some people had with genes and was clear that nothing like that occurred in her family, insisting that her daughter couldn’t care less.  It was passionately said and I worried a little about how difficult in might be for the daughter to voice even a mildly different view.  A donor conceived adult spoke, confirming that genes didn’t mean much to her but wanting something about donor conception to be on the agenda at school (one of DCN’s current thoughts too).  A counsellor asking about her clients pre-occupation with the intelligence of donors was told that knowing a donor had a high IQ or had been to university could not possibly predict, let alone guarantee, high intelligence in a child.  There were lots of legal questions and an idiot (but rather scary) clinic doctor who clearly sent people abroad for donation in order to avoid their details being recorded on the HFEA register and people ‘having’ to tell their children.

This event was not PET’s finest hour.  With a topic of such depth – and really it is the nature/nurture debate by any other name – and speakers with such diverse perspectives, it was only possible to skim the surface and without the voice of donor conceived people it lacked personal engagement and power.  But we should always keep trying.  The topic is not going to go away.

For a much fuller, and possibly more accurate description of this event, see http://www.bionews.org.uk/page_423312.asp?dinfo=2uL952VlWahLy5RT8ZNOYW3g&PPID=421705

 

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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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13 Responses to Do Genes Matter?

  1. TAO says:

    Pray tell how a geneticist can state: “Apart from single gene disorders such as Duchenne Muscular Dystrophy, which can be inherited from one parent, most other serious diseases and conditions need a copy of the mutated gene to be present in both the man and the woman contributing to the make up of the child and, once again, the environment can influence whether or not that gene is triggered.” when not all genes or gene combinations for common diseases have been found, nor for most of the 7,000 odd rare diseases that have a genetic foundation. Those wanting to bury their heads in the sand that environment changes everything – I’m the third in a direct line to have suffered the same event within a small margin of age, I survived is the only difference in outcome.

    And just how can you get ‘donor’s’ to update important family health history, and if they do, is there a dedicated service to transfer the information? If yes, to what lengths? Have they always educated and mandated that updated history happens? Does it happen? What happens if the ‘donor’ passes away, and his, or other family health history evolves, but the ‘donor’ didn’t disclose his donation to his family? It all sounds good on paper but what is the reality, how often does it happen, how many updated histories are forwarded each year compared to how many DC exist?

    It amazes me just how similar the paths are between adoption and donor conception – just decades apart, despite the statement made decades ago that it would completely different…

    • Liz says:

      “how a geneticist can state: “Apart from single gene disorders such as Duchenne Muscular Dystrophy, which can be inherited from one parent, most other serious diseases and conditions need a copy of the mutated gene to be present”

      Pretty much everyone carries genetic errors, but severe birth defects are luckily rare because in most cases you need two errors to manifest the disorder. Otherwise you remain a carrier.

      Environmental events, like viruses, can “turn on” genes. There’s speculation that some brain conditions, like PANDAS or other mental diseases, might be triggered by strep throat in children.

      Illness, such as cancer or heart attacks, seem to result from the body plus environment. (Many cancers aren’t are result of genetics.) Not getting enough sleep and sedentary behaviour place people at something like 5 times the risk to develop these types of illnesses. It’s important for the public to understand the risk difference.

      I don’t want to downplay genetic illnesses. Some people who are members of high risk groups get tested to see if they are carriers because of the seriousness of these diseases.

      • TAO says:

        and yet Liz, you did not answer a single one of my queries in my comment, specifically breezing right by the fact that not all disease causing genes have been identified. I spoke nothing of birth defects unless you consider genes that are known to cause breast cancer as a birth defect (example). I know about recessive, and autosomal inheritance, reduced penetrance as well, and what the different transmission type each bring about. I’m sure environmental plays a role in some, it didn’t for me, or, other adoptees as well. It’s something that DC and Adoptive parents want to cling to but it isn’t guaranteed, in fact the science regarding it is just in it’s infancy. Genes matter, and the lack of family health history that is often available, if only, we could access it, matter.

        • Liz says:

          “I spoke nothing of birth defects unless you consider genes that are known to cause breast cancer as a birth defect (example).”

          Briefly, though, this isn’t what is commonly known as a birth defect. They are carrying the mutation, but the cancer doesn’t manifest in 100% of carriers.

          • TAO says:

            You are the one that inserted birth defects…

            • Liz says:

              Yes, I misunderstood because I thought you were talking about diseases like those discussed in the below quote:

              “how a geneticist can state: “Apart from single gene disorders such as Duchenne Muscular Dystrophy, which can be inherited from one parent, most other serious diseases and conditions need a copy of the mutated gene to be present”

    • Liz says:

      how a geneticist can state: “Apart from single gene disorders such as Duchenne Muscular Dystrophy, which can be inherited from one parent, most other serious diseases and conditions need a copy of the mutated gene to be present”

      I apologize for not articulating myself well enough. I was trying to answer the need for a copy, and to explain why that’s a good thing, as we all carry recessive errors. This is not my area of expertise, and I am clearly not communicating well.

      You may want to ask a geneticist your questions.

      • Liz says:

        I don’t mean to say it’s a good thing if a copy shows up! That’s horrible if a copy shows up.

        I meant to say it’s fortunate we need two copies, or genetic diseases would manifest at a much greater rate, because none of us have clean genomes.

        • TAO says:

          Liz, the entire text within the ” “‘s were part of Olivia’s post – I was simply pointing out all that was omitted with that statement made in my opinion for parents to feel secure.

          • Liz says:

            Ok, it sounds like I’m confused by your point, and I don’t understand why a geneticist would care about the secure feelings of parents. It sounded like standard genetic-speak to me.

      • Liz says:

        Tao,

        Oh, I see now why we’re talking past each other. I apologize for the multiple posts.

        The geneticist used the phrase “gene disorder.” It sounds like we are defining that term in different ways, and talking past each other as a result.

    • oliviasview says:

      Just want to make it clear that the quote you took from my blog, viz “Apart from single gene disorders such as Duchenne Muscular Dystrophy, which can be inherited from one parent, most other serious diseases and conditions need a copy of the mutated gene to be present in both the man and the woman contributing to the make up of the child and, once again, the environment can influence whether or not that gene is triggered.” was NOT a direct quote from the geneticist on the panel. It was my edited version of approximately what she said. Like Liz, this is not my area of expertise and it is possible I got it wrong, but the general message certainly was that a history of common disorders, such as heart disease and many cancers, is not a good reason to not accept someone as a donor.
      I agree that we need to make it easier for donors to up-date their medical history as medical events occur for them or become known about in their family of origin. I’m not quite sure where you are based, but the HFEA in the UK are putting much more emphasis on this right now. Historically it has not been easy for donors to do.

  2. marilynn says:

    Olivia you said “and more rights for offspring.” Can you please elaborate on what you or they mean by “more rights” ? Specifically more than whom? More than you or me or who exactly? And rights are supposed to be equal are they not? Shouldn’t people who are donor offspring have exactly the same rights to the same information about their biological families as anyone else? For instance a person who is the offspring of an unmarried couple is factually in an identical situation as someone who is a donor’s offspring: their bio parents are not married to one another. The offspring of the donor has no right to have their bio parent’s name on their birth record and no right to support from that parent and no right to the vital records of that parent or their other relatives where as the offspring of the non donor has such a right that if their rearing parent were to fall on hard times and approach the state for financial assistance which all parents are entitled, the state would actively seek out every possible person who could be that person’s bio parent in order to test them (free of charge) or test their relatives (free of charge) if they tried to hide. When the person who is the offspring of a non donor unmarried parent gets that state search and test assistance they will name the person who tests positive on their birth record and hold them accountable as a parent. I know at least 30 donor offspring that would very much like the state’s assistance in seeking out and testing potential fathers. Could they please have “more rights” than they do currently?

    And if you think they should not have those rights would you expand upon why they don’t deserve those rights or why it is to their benefit to be denied those rights? Those “more rights”

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