Student Profiles

Teresa Finlay

Start date:
October 2011
Research Topic:
Users’ experience of direct to consumer genetic testing for disease risk, and clinicians’ perceptions of its impact on genetic services
Research Supervisor:
Prof A Hedgecoe, Dr M Arribas-Ayllon
Supervising school:
School of Social Sciences,
Primary funding source:
ESRC Studentship

Direct to consumer genetic testing: users’ experiences of testing for disease risk and clinicians’ perceptions of its impact on genetics services.

Direct to consumer genetic testing (DTCGT) for disease risk is now widely available to purchase online to those who have the means. Those in favour of DTCGT champion the rights of individuals to access their genetic information, while many medical professionals think a vulnerable public needs to be protected by regulation. Neither of these views is evidence-based, but they reflect changes in society that the growth in personalised medicine is driving. Using semi-structured interviews, this research will explore UK users’ motivations and expectations of DTCGT for disease risk and its impact on them and their families. In addition it will explore clinical genetics professionals’ perceptions of DTCGT’s impact on users, to draw out the implications of DTCGT for users, professionals and the NHS.

Selected Recent Publications

Finlay TMD, Gibson S, Koch L, Tochetti S (forthcoming) Personal genomics: transparent to whom? IN Rehmann-Sutter C, Dreyer M, Erdmann J (Eds) Genetic Transparency? Ethical and Social Implications of Next Generation Human Genomics, Brill Rodopi, Amsterdam.

 

Chris Goldsworthy

Start date:
October 2013
Research Topic:
Genetic Testing for Sudden Arrhythmic Death Syndrome (SADS) and the British Coronial System
Research Supervisor:
Professor Adam Hedgecoe Dr Nicky Priaulx Professor Dhavendra Kumar
Supervising school:
School of Social Sciences,
Primary funding source:
ESRC Studentship

In the UK post-mortem genetic testing for SADS has been available since 2004; however this technology has yet to be widely employed following suspected SADS related deaths. The implication of this is that many deaths are misdiagnosed and due to the genetic nature of SADS conditions family members are then at risk of suffering the same fate. Whereas an accurate genetic diagnosis could result in family members receiving testing and treatment to prevent the deadly arrhythmia.

This research aims to establish why these tests are not engaged with during the death investigation by Coroners and Pathologists. In this way the research extends debates of the ‘Usefulness’ of genetic testing beyond the clinical setting.
The focus of this research is on the process of post-mortem genetic testing for SADS; from the suspected SADS related death, to the genetic test and cascade screening for family members of the deceased. Utilising the expert accounts of Coroners, Pathologists, and Clinicians, this research hopes to be able to understand why this process is not currently working on a large scale and how it can potentially work in the future.

Lydia Harper

Start date:
October 2013
Research Topic:
An ethnographic study of Leber hereditary optic neuropathy: exploring the experiences and perceptions of children, young adults and their families.
Research Supervisor:
Professor Adam Hedgecoe, Professor Joanna Latimer
Supervising school:
School of Social Sciences,
Primary funding source:
ESRC Studentship

My research will undertake an ethnographic study of a rare genetic eye condition known as Leber hereditary optic neuropathy (LHON). LHON primarily affects young males in their second and third decade; the average age of onset is 15 years old. The condition characteristically results in bilateral sight loss over a period of 6-12 weeks from the initial onset. There is currently no cure for the condition and treatment options to slow the progress of the condition are limited. Qualitative research exploring the organisation and everyday practices of the genetic ophthalmology clinic is absent from the literature. Similarly there has been a dearth of qualitative research undertaken to explore the impact on the lives of children, young adults and their families following a sudden and dramatic loss of sight caused by LHON. This research aims to remedy this by tracking LHON across multiple sites to understand the aetiology and trajectory of the condition, and uncover the multiple interpretations attributed to the condition by clinician and families.

Rhiannon Lane

Start date:
January 2015
Research Topic:
Exploring how causal explanations for mental ill-health shape patient identities within mental health care.
Research Supervisor:
Professor Adam Hedgecoe; Dr. Michael Arribas-Ayllon
Supervising school:
School of Social Sciences,
Primary funding source:
ESRC Studentship

Explanatory models for mental ill-health shape how patients view themselves and their problems, potentially reducing or increasing self-stigma. Previous research on stigma and causal explanations for mental illness has been mostly quantitative and/or experimental. This body of research has mostly considered explanations as either ‘psychosocial’ or ‘biomedical’, ignoring the complex ways in which explanations are communicated, framed, and interpreted, and removing explanations from the social interaction in which stigma is enacted (Goffman, 1963).

The proposed study intends to explore the communication of causal explanations and their role in constructing patient self-narratives. Since professional-patient interactions provide an ideal space in which to explore how causal explanations shape patient identities, observations and audio-recordings of diagnostic and therapeutic consultations within a number of mental health sites will be conducted. In addition, semi-structured interviews will further explore how professional explanations are interpreted by patients. The following questions will be addressed:

How are explanations for mental ill-health communicated in professional-patient interactions and how are they interpreted by patients?

How do professional explanations for mental ill-health shape patients’ understandings of themselves and their problems?

Will Mason-Wilkes

Will Mason-Wilkes
Start date:
October 2012
Research Topic:
Science as Religion and “Elective Modernism”
Research Supervisor:
Prof. Harry Collins, Dr. Robert Evans
Supervising school:
School of Social Sciences,
Primary funding source:
ESRC Studentship

This project will examine the various ways in which science is portrayed in the popular media. It will be suggested that in certain cases science is portrayed in a religious fashion. These portrayals present science garbed in the language and imagery of religion. Religious portrayals of science will be contrasted with other portrayals which can be described as more secular. These differing portrayals will be identified through interpretative media analysis, though some simple summary measures will also be developed. Alongside this, interviews with contributors to the production of media content (e.g. television producers, editors, presenters) will be conducted in order to understand how these differing styles of communication develop. Drawing on the work of Cardiff University’s Knowledge and Expertise in Science (KES) research group the impact of these differing modes of science communication on public perceptions of science will be explored from the perspective of Elective Modernism. Elective Modernism views scientific values, or the ‘formative intentions’ of the scientific community, as having a broader social application in a progressive democratic society. Popular portrayals of science impact upon the values which are attributed to science. This has important implications for the project of Elective Modernism.

Ghazal PourGashtasbi

Ghazal PourGashtasbi
Start date:
October 2015
Research Topic:
Looking the same and different: Growing up with a rare disease and the implications for belonging, identity and self
Research Supervisor:
Professor Joanna Latimer, Dr. Tom Hall, Professor Angus Clarke
Supervising school:
School of Social Sciences,
Primary funding source:
ESRC Studentship

By contributing to a context- and practice-centred research, I intend to explore the life-worlds of young people with genetic disorders, some of which are marked by ‘dysmorphic’ features. By placing particular emphasis on young people as key actors in (rare) syndrome research, the study aims to explore the way(s) young people experience, live and deploy their self in the making while being exposed and involved – wittingly or not – in highly different social formations and shifting contexts. What is of particular interest in all this is both the sociological understanding about how young people experiencing a ‘genetic syndrome’ are challenged in different social settings and relations, that is the clinic, the home and beyond home, and paying closer attention to how bodily features as well as biological relatedness affect their identity and sense of self.

Selected recent publications

PourGashtasbi, G. 2015. Nanotoxicology and challenges of translation. In: Nanomedicine, 10 (20), 3121-3129.

Ian Richard Thomas

Start date:
January 2012
Research Topic:
(Homo)Sex out of the city: The digital cultures of rural men who have sex with men
Research Supervisor:
Dr Matthew Williams & Dr Emma Renold
Supervising school:
School of Social Sciences,
Primary funding source:
ESRC Studentship

This ethnography will explore the digital technologies and techno-practices which compose gay male digital culture as they are experienced by men who have sex with men (MSM) living in rural areas. In addition to these men’s lived experiences, this study will also focus on the role of digital culture in sexual identity performance and subjectivity. The analysis and design will draw on phenomenological and psychosocial approaches in order to be more attentive to embodiment and affectivity when theorising subjectivity. This research adds to our understanding of the entangled processes and practices of men who have sex with men and digital technologies, whilst also lending a new (digital) perspective to discussions of embodiment and nature within rural sexualities.

Selected Recent Publications

Thomas, I. (2011) The Changing Landscape in Kelly, K. (ed) Response to the Labour Party Housing Policy Review: How do we meet families’ aspirations for good housing and a good home? Submission by the Joseph Rowntree Foundation. Joseph Rowntree Foundation: York

Julia Thomas

Julia Thomas
Start date:
October 2015
Research Topic:
Disclosure, distrust and discourse in the public engagement of psychiatric genetics and genomics
Research Supervisor:
Professor Adam Hedgecoe
Supervising school:
School of Social Sciences,
Primary funding source:
ESRC Studentship

Mental ill-health is a national problem, high on the policy-makers agenda, and an important area of scientific research. However, psychiatric genetic research and UK wide anti-stigma mental health campaigns both critically depend on addressing the need for increased public participation.

This research will explore how individuals and groups negotiate the decision making process of psychiatric genetic research participation and the impact on this of the broader movement to public disclosure.

How do public groups engage with the genomic era of mental health research?

What are the barriers to participation?

How does the changing society of public disclosure affect this participation?

The research will provide critical insight into the tensions, resistance, and motivations related to this decision-making process whilst referencing multiple perspectives and past socio-political and scientific influences. The results of this study have the capacity to incorporate a more informed understanding for policy makers and research organisations of the behaviour of potential research participants, particularly in relation to scientific and public discourse, disclosure, and distrust.

I will be drawing on socially engaged/participatory arts practice and social science methods incorporating both quantitative and qualitative insights.

The Science and Technology Pathway is built upon three distinct areas of social scientific research. The first is the sociology of knowledge with a science emphasis, focused on the social nature of scientific and other expertise. The second is the social study of biomedicine, which includes current research on mitochondrial transplant technology, neuroscience and the clinical use of genome sequencing data. The third is understandings of risk, focusing on energy systems research on responsible innovation and sustainable place making, exploring the psychosocial aspects of risk perception, contemporary life and risk practices.

The pathway sits within the interdisciplinary School of Social Sciences at Cardiff University which has a strong track record of international, peer-reviewed publication; it hosts several major disciplinary and methods-focused social science journals. Students on the pathway engage not only with students and staff working in the same field but develop networks with staff and students from other disciplines across the School. The School supports and organises a series of doctoral cohort events including an annual PGR dinner (a social event and celebration of doctoral accomplishment); an annual doctoral student conference (including paper sessions and poster competition); the student-run Postgraduate Café, and various reading groups which meet once a month to discuss a range of topics related to social research, politics and culture.

Students on the ‘1+3’ route complete the specialist module Science, Technology and Society as part of the interdisciplinary Social Science Research Methods Masters programme, alongside core modules tailored to the development of Science and Technology Studies researchers. Subject-specific training and student development continues throughout the doctorate with a wide range of reading and discussion groups, roundtable sessions, seminar series, and data analysis workshops. Amongst others, STS students attend the weekly seminars held by the KES (Knowledge Expertise and Science) research centre and the meetings of the Medicine, Science and Culture (MeSC) Research Interest Group. Both these provide opportunities to present data and/or developing writing, and to practice conference presentations. These meetings are typically attended by a wide range of academics and students and they connect STS students with the broader academic community.