News / parents of donor conceived child

Do Genes Matter? Families Are Studied

 

Fertilization crop

I'm always interested in new studies and research related to human genetics. Especially because we used a donors' genetics to create our children. There is a lot of published research coming out of England that is specifically related to donor conception. I'd like to share this article with you, and wonder what your thoughts are, please feel free to comment below.

Do genes matter? Families under the microscope

02 June 2014   By Petra Nordqvist

Lecturer in Sociology, University of Manchester

Appeared in BioNews 756

There is an increasing tendency to want to explain everything human, from stress, to being gay, or having a zest for life as something that is 'in our genes'. The explosion of biomedical research into genetics recently has had a major impact on popular ideas about what defines a person; 'genetic thinking' has become so hugely influential that human life now seems almost determined by a person's genetic make-up.

This 'geneticisation of society' (1) also filters through to assumptions about family life. There is a tendency to think that genetic relationships are the relationships that really matter in families, whereas non-genetic relationships are less well-recognised as important, and sometimes not even seen as 'real'.

But how do genes and genetic relationships actually matter in the messy and complex world of everyday life? Is there perhaps an argument that we need to think more critically about the supposedly ever-increasing importance of genetic links?

These questions were addressed in the event 'Do Genes Matter? Families and Donor Conception ', co-organised by the Progress Educational Trust and the Morgan Centre at the University of Manchester. It drew together a panel of speakers discussing genetic connections and family life from the legal, sociological and scientific points of view.

The event looked specifically at families through donor conception: families formed using donated eggs, sperm or embryos from a third party. Whereas genetic families might not have to think too hard about what genes mean to them, families by donor conception face a series of questions because they operate outside the framework that family relationships are defined by sharing genetic material. These families therefore offer an interesting viewpoint from which to explore the meaning and importance of genes.

Carol Smart, professor of sociology at the University of Manchester, presented findings from our recently finished sociological study 'Relative Strangers', which looked at how parents as well as grandparents experience the impact of donor conception on family life. She suggested that while people do think genes matter, the way in which they understand what genes are and what they do is far from straightforward. There was no consensus at all about how genes matter or why.

We also discovered that people are able to hold entirely contradictory views at the same time, saying that on the one hand, genes are important, and on the other, they don't matter at all. Smart gave the example of a grandmother who felt that it made no difference that her grandchildren were conceived using donor embryos, and yet wondered if perhaps her grandchildren's taste for olives was due to being conceived from a Spanish donor egg.

Erika Tranfield, co-founder of Pride Angel and member of the panel, suggested that parents and donors in non-clinical donor arrangements hold very different views on the meaning of the genetic relationships that ensue from donor conception, thus adding to the idea that the social meaning of genes is in fact very varied.

The idea that there is a need to question the meaning of genetic connections was taken further by Natalie Gamble of Natalie Gamble Associates. Gamble spoke of how courts of law perceive genetic relationships in families; cases involving donor conception andsurrogacy present some unique challenges to the courts, which are faced with the task of determining how to prioritise relationships. Gamble showed that in recent legal cases genes are both understood to determine relationships, and carry limited significance.

In the light of this complexity, it might be assumed that at least scientists know what genes are and what they do. However, Anneke Lucassen, professor of clinical genetics at the University of Southampton, persuasively argued that even from a scientific point of view, genes and the way they work are infinitely complex. She noted that only a very small proportion of genes can be relied upon to predict a person's characteristics.

The message that emerged with some force on the evening was that genetic connections operate with extraordinary complexity and that the social, scientific and legal meaning of genes is deeply varied and intricate. How we view them, the meaning we attach to them, and how they are understood to matter, shift and change. What emerged from the discussion was that it is important to view genetic relationships as one factor among a multitude of others shaping life and family relationships. The event thus provided a sobering perspective on the seemingly central significance of genes, suggesting that other things matter too.

 

 

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Young People Know A Lot About Genome Sequencing

I'd like to share this article with you. It's another reminder for parents of donor conceived children to inform their child's genetic origins with them from an early age. Technology and the genetic sciences are moving at lightening speed, and is a lot like parenting. Before we know it our young toddlers will be entering high school. Inquisitive minds always search for a path to understanding who they are, let them hear it from you first.

By BioNews Appeared in BioNews 773

Young people are surprisingly well-informed about the basics of genetics and thoughtful about the kind of information they'd like to receive from genome studies, results from an international survey suggest.

'While it's a little premature to start speaking of "genomic natives" as the media does about "digital natives", our results show that young people's understanding of genetics is at least on a par with adults'', said Dr Anna Middleton - senior scientist at the Wellcome Trust Sanger Institute, Cambridge, and co-lead researcher of the GenomEthics study.

Research using whole genome sequencing (WGS) technologies - where all of a person's DNA is decoded - is increasingly common, but there are many dilemmas over what information, if any, should be given to research participants.

The GenomEthics study, run by researchers at the Sanger Institute, seeks to resolve some of these dilemmas by asking people directly what they think via an online questionnaire available at the GenomEthics website.

The questionnaire was not designed with young people in mind, but when the first tranche of completed surveys were analysed, 222 out of the 6,944 respondents were found to be 19 or younger, giving researchers a unique insight into the generation growing up as WGS nears widespread use.

Participants' understanding of genetics was assessed by asking two true-or-false questions: 'A condition is only genetic if more than one family member is affected' (correct answer – false), and 'Some genetic conditions express themselves later in adult life' (true). Young respondents gave correct answers in 75 percent and 95 percent of cases respectively. This did not represent a significant difference from the accuracy of adults' responses.

Furthermore, Dr Middleton says that her preconceived ideas of how young people would answer were scotched in two important areas.

For one, she says, 'I thought young people would be fearless and they'd just want to know everything from the raw data. In fact, they were slightly more likely than adults to be "information discriminators", that is they were slightly more cautious in selecting the information they would like access to'.

It would appear from the survey that whether or not young people wanted access to personal genetic information was largely determined by its usefulness. In other words, they were more likely to want information about a genetic variant predisposing to a preventable medical condition than an unpreventable one.

The second surprise was that, when it came to how they wanted the information to be presented, younger respondents were rather traditional.

'I assumed that younger respondents would mostly want information to be delivered electronically and wouldn't be interested in engaging with health professionals', says Dr Middleton. 'That was not the case at all'.

Indeed, in response to the question 'How should information relating to serious life-threatening conditions be delivered?' 85 percent favoured direct contact with a health professional.

However, despite the reassuring signs from the survey that young people are thoughtful, well-informed and well-prepared for the genomics revolution, Dr Middleton has this message for policymakers: 'Getting genomics onto the school curriculum remains an absolutely urgent issue. It is being introduced and young people need to understand that knowing something about genomics will be relevant for the whole of their lives. Genomics is what connects us all. Not only is it relevant to our health, but it explains who we are'.

'Very soon, the NHS will be embracing genomic data on a large scale and that means that it is likely to crop up during routine engagements with healthcare professionals. At least knowing the basics about genetics will put young people ahead of the game'.

 

Dr Anna Middleton was talking about her work prior to her presentation 'Young people and sequencing technologies: confusion and clarity' given on Tuesday 23 September 2014 at the British Society for Genetic Medicine's annual conference at the Liverpool Arena and Convention Centre.

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