Abstract:This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License ePrints-Newcastle University ePrints http://eprint.ncl.ac.uk Digital imagery and child embodiment in paediatric genetics: Sources and relationships of meaning
“…The methodological approach was to follow each family over time, going with them into the different settings of their lives and listening to the perspectives of multiple actors, including parents, siblings, other significant family members and the children who had been referred (other publications have explored the multiple perspectives within families – McLaughlin, 2014). The majority of the families we worked with were recruited as the process of first referral to the genetics service was underway and we followed them through their first consultation and beyond.…”
Section: Methodsmentioning
confidence: 99%
“…Her past is now present – genetically – in her son, emphasizing for her the permanence of her connection to her biological family. To protect her children throughout the interviews, via the photographs and the evidence they provide of visual similarity (Hirsch, ; McLaughlin, ), she highlighted how both the children share many similarities with their father and his side of the extended family. This is both through suggesting that the children take after their father far more than her, but that also they carry a strong resemblance to their dead paternal grandmother: Mother : Yeah, so dad's eyes … they used to think that was our daughter when she was little, it wasn't, it's her dad…and there [points to photograph of daughter] … Looks like her grandmother … When she was younger, [points to photograph of the paternal grandmother as a young girl] that's his mam… .See, they don't look anything like me, the only thing they've got off me is my hair.…”
Section: Present Risky Relationsmentioning
confidence: 99%
“…(Mother and Father, Carr Family, Int 1/1) Her past is now present -genetically -in her son, emphasizing for her the permanence of her connection to her biological family. To protect her children throughout the interviews, via the photographs and the evidence they provide of visual similarity (Hirsch, 2002;McLaughlin, 2014), she highlighted how both the children share many similarities with their father and his side of the extended family. This is both through suggesting that the children take after their father far more than her, but that also they carry a strong resemblance to their dead paternal grandmother:…”
Section: Present Risky Relationsmentioning
confidence: 99%
“…Their work shows us how notions of family are drawn into the work of clinics. This paper adds to such accounts through a slight, but important, difference: instead of examining how family is drawn into genetics within the space of the clinic (which we have examined in other papers (McLaughlin andClavering, 2011, 2012), the focus is on how genetics, once outside the space of the clinic, is drawn into the work of family.…”
Diagnosis in paediatric genetics involves a combination of technologies able to display variation in DNA and clinical discussions with families that concentrate on retrieving family histories. This paper explores the significance of the family tales that genetics brings to the fore. Through discussion of an ESRC‐funded ethnographic study of families referred to a paediatric genetic service, the paper explores how genetics and family history intersect in ‘relations of exchange’ (Latimer, 2013). It draws from sociological work on family that emphasizes the importance of narrative to the formation and maintenance of family ties and the importance of broader social contexts to the kinds of stories that can be told and recognized by others. The paper emphasizes the significance of claims to respectability and value to the narratives people provide of family ties; particularly in contexts where such ties, in the past or the present, are thought of as ‘troubling’. Making reference to research by Skeggs and Loveday (2012), it is argued that an important narrative that is drawn upon, in order to claim respectability, is that of being a good parent who protects their children from socially ‘risky relations’ so that a positive future as a ‘subject of value’ may be possible.
“…The methodological approach was to follow each family over time, going with them into the different settings of their lives and listening to the perspectives of multiple actors, including parents, siblings, other significant family members and the children who had been referred (other publications have explored the multiple perspectives within families – McLaughlin, 2014). The majority of the families we worked with were recruited as the process of first referral to the genetics service was underway and we followed them through their first consultation and beyond.…”
Section: Methodsmentioning
confidence: 99%
“…Her past is now present – genetically – in her son, emphasizing for her the permanence of her connection to her biological family. To protect her children throughout the interviews, via the photographs and the evidence they provide of visual similarity (Hirsch, ; McLaughlin, ), she highlighted how both the children share many similarities with their father and his side of the extended family. This is both through suggesting that the children take after their father far more than her, but that also they carry a strong resemblance to their dead paternal grandmother: Mother : Yeah, so dad's eyes … they used to think that was our daughter when she was little, it wasn't, it's her dad…and there [points to photograph of daughter] … Looks like her grandmother … When she was younger, [points to photograph of the paternal grandmother as a young girl] that's his mam… .See, they don't look anything like me, the only thing they've got off me is my hair.…”
Section: Present Risky Relationsmentioning
confidence: 99%
“…(Mother and Father, Carr Family, Int 1/1) Her past is now present -genetically -in her son, emphasizing for her the permanence of her connection to her biological family. To protect her children throughout the interviews, via the photographs and the evidence they provide of visual similarity (Hirsch, 2002;McLaughlin, 2014), she highlighted how both the children share many similarities with their father and his side of the extended family. This is both through suggesting that the children take after their father far more than her, but that also they carry a strong resemblance to their dead paternal grandmother:…”
Section: Present Risky Relationsmentioning
confidence: 99%
“…Their work shows us how notions of family are drawn into the work of clinics. This paper adds to such accounts through a slight, but important, difference: instead of examining how family is drawn into genetics within the space of the clinic (which we have examined in other papers (McLaughlin andClavering, 2011, 2012), the focus is on how genetics, once outside the space of the clinic, is drawn into the work of family.…”
Diagnosis in paediatric genetics involves a combination of technologies able to display variation in DNA and clinical discussions with families that concentrate on retrieving family histories. This paper explores the significance of the family tales that genetics brings to the fore. Through discussion of an ESRC‐funded ethnographic study of families referred to a paediatric genetic service, the paper explores how genetics and family history intersect in ‘relations of exchange’ (Latimer, 2013). It draws from sociological work on family that emphasizes the importance of narrative to the formation and maintenance of family ties and the importance of broader social contexts to the kinds of stories that can be told and recognized by others. The paper emphasizes the significance of claims to respectability and value to the narratives people provide of family ties; particularly in contexts where such ties, in the past or the present, are thought of as ‘troubling’. Making reference to research by Skeggs and Loveday (2012), it is argued that an important narrative that is drawn upon, in order to claim respectability, is that of being a good parent who protects their children from socially ‘risky relations’ so that a positive future as a ‘subject of value’ may be possible.
Children with unexplained problems in their development can be referred to genetics clinics; the number having such referrals is increasing as new technologies enhance the number of genetic variations that can be identified. From the perspective of the child and their family, this raises a number of issues social science research can help us to understand. In particular issues such as understandings of kinship; feelings of parental responsibility; the uncertainties involved in diagnosis, and the different ways the child is visualised through the stages of diagnosis. As new generation sequencing enters the clinic it is important to consider how what happens to children and their families may both change and stay the same.
The paper explores the concept of recovery; the unexpected material changes that occur to, and within bodies following acquired spinal conditions. The phrase 'acquired spinal conditions' is used as a collective name for the four accounts of recovery that emerged using Participatory Action Research in the north east of England (2010-11). Using two qualitative methods, Photovoice and participatory diagramming, the empirical material examines the role of physiological changes as a way to enrich understandings of disability and the bodily experience of impairment. Three themes, bodily materiality, material objects and fluids became significant during one-to-one and small group interactions with participants. The paper is situated in wider debates in geographies of disability and impairment, focusing on the interplay between different physiological states of being and the bodily changes experienced through recovery. It argues that recovery is the process of negotiating, adapting and adjusting to changes, from the way bodily materiality shifts and fluctuates following accidents and medical interventions, settling over time as participants become aware of bodily changes, to the role of material objects and the fluids that pass back and forth changing bodily interiors. The paper closes with a call for geographies of affect to explore the individual and collective feelings associated with fluids, and the human-animal relations affecting recovery and bodily interiors.
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