Project:

Kinship and Genetic Journeys: a study of the experiences of families who are referred to paediatric genetics

From October 2008 to May 2012
Project Leader(s): Janice McLaughlin
Staff: Emma Clavering, Erica Haimes, Michael Wright
Sponsors: Economic and Social Research Council

Background

What’s it like for children and their families to be referred for genetic investigation? An increasing number of children with physical and learning disabilities and apparent problems in their development are being seen by geneticists. Such investigations take considerable time, involving ‘watchful waiting’ and discussions with parents and others about family medical history, including the development of family trees and the sharing of family pictures. A significant percentage of children who go through this process will not receive a definitive diagnosis. This project will examine important questions around the interrelationships between paediatric genetics, symbols of family identity, and narratives of future life. What is the social significance of diagnostic encounters over time? What are the long term consequences of living with or without a diagnosis for children, their family as a whole and wider social networks? How is genetic information incorporated into kinship accounts?

This project explored these questions with families using ethnographic approaches, which drew out meaning from the perspective of participants. For this, the research team used longitudinal narrative interviews with parent/carers, children who have been seen by the service, and wider family members and friends; and non-participant observation in both clinical settings and a range of family contexts.

Embedded within ethnography is an emphasis on exploring depth and complexity in people’s relationships to their social and cultural world. Interviews were negotiated by the researcher with each participant, and a range of styles and tools were developed that were appropriate to each person depending on age, relationship, involvement and personal concerns. For example, with the children and young people journals were used so that they could sketch out their ideas in drawings or stories and explain them to us during interviews. The observations (both clinical and family-based) provided opportunities for the research team to consider a range of dynamics conveyed through, for example, overt and subtle interactions between all those present, and the influence of setting and environment.

The impact of such encounters is not always immediately obvious, and there may also be changes in understandings and available knowledge. Hence it was important that the research followed families both over a period of time, and looking back in retrospect at events over several years. The research team followed 26 families in total, some of whom were new referrals to a Genetics Service and others who had been seen some time in the past - whether they received a diagnosis or not. The research, then, has aimed to capture a range of experiences and understandings that will contribute to critical disability studies, the sociology of the family and social anthropology.

Updates

 

February 2012

An international symposium from the project was held on 23rd and 24th February in the Great North Museum, Newcastle upon Tyne entitled Medical and Scientific Understandings of Childhood Difference: Framings, Representations and Imaginaries.  Click here for the Symposium brochure

The symposium themes reflected on how new understandings and representations of children are being produced across various medical disciplines. For example, a range of studies are exploring the interrelationships between genetics, neural pathways, cell chemistry and the environment in shaping the development of children’s cognitive, emotional and physical capabilities. The focus of much of this work is on those children whose development, at whatever stage, is different from the norm and identifying the key factors in understanding that variation. The medical aims of developing such understandings are multiple, but include seeking ways to: remove the source of difference if possible (through Pre-implantation Genetic Diagnosis [PGD] for example); limit the degree of difference in development a child will experience (through early intervention in speech and language therapy or physical therapy for example); predict the future possibilities for a child (through attempting to improve the ability of genetics and other areas to be able to offer prognosis as well as diagnosis); and provide ‘better’ explanations to children and those around them for why they are different (which also feed into familial ‘negotiations’ with support services to recognise their child’s needs).

What the symposium sought to do was explore these medical developments in the context of campaigns and debates from different support groups and disability groups calling for a range of societal and healthcare responses for children with complex illness and impairment issues, some of which can be degenerative, and most of which raise significant dilemmas for quality of life in the present and in the future. We brought together leading academics across anthropology, sociology, philosophy and social policy from the US, New Zealand and the UK, alongside those involved in clinical practice and supporting families who have a child with complex health needs.

January 2012

The Project Findings Report, which summarises the key themes to emerge from the study, is now available. 

 

November 2011

 

The fieldwork for the project has now come to an end. Finishing the fieldwork involved spending time with families to explore and summarise both their time in the project and the changes in their lives during their time with us. Drawing such work to an end is always an emotive process and we are forever grateful for the time and perspectives families share with us.  

The main focus of our work now is moving ahead with the dissemination of the findings of the project, both to academic audiences and also to practitioners and families. Our network of contacts in the region and nationally is helping with this. Two journal articles have recently been published in Sociology of Health and Illness and New Genetics and Society and other papers are currently being written. We have also launched the Project Findings Report  which summarises the key themes to emerge from the project.  A paper copy of this can be requested by emailing Janice McLaughlin. The report was launched at a workshop for families and practitioners which we held in October this year. The workshop was supported by both Contact a Family and Unique.  We are continuing to work with both organisations on further dissemination of the findings as well as producing other material that could be useful to other families being seen by genetic services.

We have also begun to present the work to practitioners in Genetic Services and at national conferences, for example the British Human Genetics Society conference earlier this year.

Finally (for now!) an International Symposium entitled 'Medical and Scientific Understandings of Childhood Difference: Framings, Representations and Imaginaries' is currently being planned for February 2012.

 

May 2010 

 

The fieldwork phase of this ESRC project is now well underway. The project focuses on families with children who are referred to paediatric genetics due to a range of problems which may have a genetic aspect. Using ethnographic approaches – combining observations of different social and clinical interactions with interviews done over time – we are working with a range of family members to see how the introduction of genetics as an explanation for the apparent difficulties their child has is affecting family relations and life. The focus this year has been to recruit families to the study and to build up an enabling research relationship with those joining us. This is an intensive period, one which is already leading us to reflect on the complex nature of the family lives we are being introduced to. Already important issues are emerging around the significance of existing family narratives of illness and difference, and notions of what can be inherited and how. We are also increasingly interested in the role of interpretations by clinicians and by family members of the physical features of the child, as they play an important role in establishing what genetic syndrome the child may have. The contrasting interpretations of the clinicians and family members frame such features as either evidence of genetic difference or as belonging and closeness to others in the family.

While the project is in its early days in terms of analysis, we are already linking in with researchers working in the area internationally via conference presentations. For example, we presented at the Society of Medical Anthropology conference at Yale in September, on a panel on paediatric genetics. This is intended as a starting point for an international network on the topic, bringing together research being undertaken in Britain, the United States, and New Zealand. In addition we also presented at the third Vital Politics Conference in London. Our first publication from the project will be a paper examining the ethical and methodological issues of involving children in research, which will be published in Child: Care, Health & Development in 2010.

 

Looking in to the future, the fieldwork will continue for over another year, while we increasingly build our understanding, with families, of the social, cultural and medical processes they are living through.

 

If you would like more information on this project, please contact Emma Clavering (email below).

 

Keynotes and invited talks

  • McLaughlin, J. and Clavering, E.K. (2013) ‘Family connections in genes and stories’, New Families and Genetic Identities: Developments in law, policy and research Conference, London School of Economics, June.
  • McLaughlin, J. (2013) ‘Title to be confirmed’, Genetics, Genomics and Changing Understandings of Nature/Nurture: An Interdisciplinary Workshop, University of Leeds, May
  • McLaughlin, J. and Clavering, E.K. (2013) ‘Families’ experiences of paediatric genetics: Findings from a sociological study’, Association of Genetic Nurses and Counsellors, Spring Meeting, Collingwood College, Durham, April.
  • McLaughlin, J. (2012) ‘Reflections on consenting processes in social research with young people’, Medical Practitioners, Adolescents and Informed Consent Nuffield Seminar. Leeds University, July.
  • McLaughlin, J. (2011) The co-location of digital imagery and embodiment in paediatric genetics, CESAGEN, Cardiff University, 21st of June
  • Clavering, E.K. (2011) ‘Thanks for asking’: What research with children can tell us about self, family, and health, Joint Childhood Studies Group / Culture, Imagination & Practice Research Group / CESAGEN Seminar, Cardiff University. June
  • McLaughlin, J. (2011) 'Families experiences of paediatric genetics: Findings from an ethnographic study'. British Society for Human Genetics Conference, 5th – 7th September, Warwick University
  • McLaughlin, J. (2011) ‘Potential familial and patient responses to gene therapy: lessons from current genetics provision in healthcare’ TREAT-NMD 2011 International Conference, Geneva, Nov.
  • McLaughlin, J. (2009) ‘Modes of care and mothering: How does citizenship and care intersect in the lives of mothers of disabled children?’ ESRC Seminar Series ‘Parenting Cultures’, University of Kent, Canterbury. 8th – 9th January

Conference Presentations

  • McLaughlin, J.,  Wright, M., Haimes, E. and Clavering, E. (2012) Social and Ethical Implications of Families’, Experiences of Paediatric Genetics: Key findings from a UK qualitative study exploring families’ expectations, their responses to diagnosis and their approach to managing the uncertainties of genetic investigations, Poster Presentation, American Society for Human Genetics Conference, San Francisco, November
  • McLaughlin, J. and Verkerk, M. (2012) About Family and Responsibilities, Critical care: advancing an ethic of care in theory and practice Conference, Brighton University, September
  • McLaughlin, J., Clavering, E., Wright, M. and Haimes, E. (2012) ‘Families’ experiences of paediatric genetics: key findings from a qualitative study of expectations, responses to diagnosis and the uncertainties of diagnosis’, Joint meeting of the UK/Dutch Clinical Genetics Societies and Cancer Genetics Group, Spring Conference, 15th-16th March, Newcastle
  • McLaughlin, J. and Clavering, E.K. (2011) ‘Visualising Genetics: Modes of diagnosis and interpretation in the troubling body within paediatric genetics.’ ESA. Sept.
  • McLaughlin, J. ‘Modes of care and mothering: How does citizenship and care intersect in the lives of mothers of disabled children?’ Childhood Conference. Manchester Metropolitan. 5th – 6th April 2011.
  • McLaughlin, J. and Clavering, E.K. ‘Narratives of Othering and Recognition in Paediatric Genetics.’ Narratives of Health and Illness, Uppsala University, Sweden. 16th -17th September, 2010.
  • McLaughlin, J. and Clavering, E.K. ‘Visualising Genetics:  Modes of diagnosis and interpretation in the troubling body within paediatric genetics.’ Conference: EASST, Trento, Italy, 2nd – 4th Sept 2010.
  • Clavering, E.K. and McLaughlin, J. ‘A crisis in the genes? Children and young people’s responses to processes of medical labelling through paediatric genetics.’ European Association of Social Anthropology (EASA) 2010: Crisis and Imagination, Maynooth University, Ireland. 24th - 27th August 2010.
  • Clavering, E.K. and McLaughlin, J. ‘Engagement Spaces: Ethics as Process.’ PEALS 2010 Symposium, Good Practice in Public Engagement: Expertise by Experience. 14th May 2010.
  • McLaughlin, J. and Clavering, E.K. ‘Othering and Recognition in Paediatric Genetics.’ Child, Family and Disability Conference, Manchester Metropolitan University, 28th of April 2010.
  • McLaughlin, J. and Clavering, E.K. ‘Ethnographies of Genetic and Kinship Imaginaries’, Medical Anthropology at the Intersections Celebrating 50 Years of Interdisciplinarity, Society of Medical Anthropology. Yale University, Connecticut, USA. 24th – 27th September 2009.
  • Clavering, E.K. and McLaughlin, J. ‘Ethnographies of Genetic and Kinship Imaginaries’, Vital Politics III. LSE, London. 16th -19th September 2009.
  • McLaughlin, J. ‘Modes of care and mothering: How does citizenship and care intersect in the lives of mothers of disabled children?’ American Sociological Association. San Francisco CA. 8th – 11th August 2009.
  • McLaughlin, J. and Clavering, E.K. ‘Unmaking Children: Exploring the Dynamics of Othering in Disabled Children’s Lives’, Diverse Childhoods in International Contexts: Gender and Other Social Cultural Differences Conference. University of Barcelona, Barcelona. 16th – 18th July 2009.

Project Advisory Group Members

  •    Kathy Rist, Contact a Family, North East England
  •   Bob Mitchell, parent/carer representative
  •   Amanda Leadbitter, parent/carer representative
  •  Joanna Latimer, Reader, Cardiff University School of Social Sciences
  •  Allan Colver, Donald Court Professor of Community Child Health, Sir James Spence  Institute, RVI
  • Peter Dixon, North Tyneside PCT, Deputy Head of Specialised Commissioning, NORSCORE
  • Dan Goodley, Professor of Psychology, Psychology and Social Change Department, Manchester Metropolitan University
  • Andrew Earnshaw, Senior Manager, Genetics and Programme Health, Science and Bioethics Division, Department of Health.

 

Staff

Dr Emma Clavering
Teaching Fellow

Professor Erica Haimes
Professor of Sociology

Professor Janice McLaughlin
Executive Director, PEALS
Publications