Health Technology & Society (HTS) Projects

Mainstreaming Genetics: Re-contacting patients in a dynamic healthcare environment (Susan Kelly)

Is there a professional duty to re-contact patients for whom providers hold genetic or genomic information? Do patients and health care providers share responsibility for being aware of new development relevant to the patient’s genome? Do different health care specialties now ordering genetic tests share understandings regarding managing genetic information, which in clinical genetics services is understood to have familial as well as individual implications?

Genomics and genetic tests are increasingly being ordered by medical specialties outside of clinical genetics, such as cardiology, oncology and paediatrics, potentially requiring negotiation of norms and practices with regard to storing and communicating information to patients and their families. We hypothesize that mainstreaming genomics in healthcare should be understood as a social rather than a merely technological process, and that professional subcultures across specialties will vary with regard to norms and expectations concerning re-contacting patients. This project will contribute significantly to understanding normative, practice and ethical concerns across medical specialties regarding the holding and communication of genetic information to patients (and possibly family members) accounting for innovation over time.

The overall objective is an interdisciplinary investigation of issues arising with mainstreaming of genomics and genetics in healthcare. Specifically, we will investigate patient and provider expectations and concerns regarding the problem of when/how to re-contact patients when new clinical information becomes available as a result of scientific and clinical advances.

Visit the project website.

Foetal/maternal cell transfer, non-invasive prenatal diagnosis and naturally occurring micro-chimerism (Susan Kelly)

The natural occurrence of populations of cells from genetically different ‘individuals’ in human bodies challenges concepts of cellular and genomic identity that are constitutive of social, cultural and philosophical understandings of the individual. This project is a sociological examination of the developmental trajectory of feto-maternal microchimerism science, the techno-scientific development and ‘production’ of foetal and maternal cells and genetic material, and the ongoing construction of theory/method packages through which prenatal diagnostic goals are intertwined with biomedical platforms and initiated into clinical practice.

The Maternal–Foetal Interface and Gestational Chimerism: The Emerging Importance of Chimeric Bodies, S.E. Kelly, Science as Culture 2012, 21 (2): 233-257.

Health care professional responses to emerging prenatal genetic diagnostic technologies (Susan Kelly & Michael Morrison)

Novel ‘non-invasive’ prenatal diagnosis (NIPD) technologies are currently in the process of moving from research into routine clinical practice. While NIPD promises easier, less invasive, safer and earlier detection of single gene disorders and chromosomal abnormalities, it is also a ‘disruptive technology’, not least in the sense of disrupting established working practices, routines, schedules, norms and values, and division of labour in prenatal care and clinical genetics. The research aims of this project are two-fold; to investigate how NIPD technology is perceived by those currently working in, and embedded within the sociotechnical networks of, prenatal care, and to examine the ways in which these healthcare professionals frame and construct the value of NIPD.

With a particular emphasis on NIPD testing for Trisomy 21 (Down syndrome), we are interested in how participants view the implementation pathways of the emerging technologies, especially with regards to whether NIPD is seen as an adjunct to existing testing methods such as amniocentesis, or as a replacement for them. This research is also intended to be attuned to the issues raised by participants themselves with regard to implementation of this new technology (such as timing within care pathways, training requirements, implications of the ease of obtaining samples for analysis, time and material impacts of molecular analytic requirements, etc).

 

Completed projects

Selling genetic tests online: User perspectives on direct to consumer psychiatric genetic tests (Susan Kelly, Sally Wyatt & Anna Harris)

This project examines the intersection of two important technological developments: genetic testing and the internet. These developments are raising critical questions about patient empowerment, 'democratisation' of science, impacts on health systems, regulation, and the ability of consumers to make health care and lifestyle decisions on their own, or in improved partnership with healthcare providers. The current and imminent introduction of genetic tests for serious psychiatric disorders presents an important arena for examining these and related questions regarding the nature and impacts of direct to consumer (DTC) access to diagnostic and predictive individual genetic information. Our research examines various aspects of DTC genetic testing such as the representation of genetic counselling, customers’ participation in genetic research, genetic narratives of testing, representations of controversial science, trust and various kinds of genetic determinism. Find out more.

Is easier better? Public attitudes towards non-invasive pre-natal testing (Susan Kelly & Hannah Farrimond)

The project aimed to investigate the thinking of ordinary people about these new technological advances so that their views and perspectives could be represented alongside those of the scientists and clinicians who are well-represented in NIPD policy.

• What is the range of public ‘viewpoints’ on or relevant to NIPD in the UK?

bull; What do ordinary people think will be the social and ethical implications of the novel aspects of NIPD: earlier, and less risky diagnosis, done using a blood test and potentially available commercially/direct-to-consumer?

• Is Q-methodology useful as a method with which to investigate relatively unknown emerging technologies?

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Understandings of Type 2 Diabetes in ‘at risk’ families (Hannah Farrimond)

Type 2 diabetes is estimated to affect 2.35 million people in the UK with more than 400,000 undiagnosed. Having a family history of diabetes (one or more first degree relatives with diabetes) increases an individual’s risk by two to five times (Harrison et al., 2003). However, to date, family histories of diabetes have received less attention than other diseases.

This project takes a social psychological approach using social representations theory which emphasises the group and identity dimensions of thought and behaviour. Semi-structured interviews will be conducted with ‘at risk’ individuals and their first-degree relatives. Thematic analysis will identify within-group (intra-family) and between-group (inter-family) differences in representations. The study will produce a theoretically grounded psychological ‘underpinning’ for the design of interventions with ‘at risk’ families in the future. Find out more.

BioARReMe: the Bioeconomy of Assisted Reproduction and Regenerative Medicine (Michael Morrison)

Principal investigator of the BioARReMe project is Dr Vincenzo Pavone of the Institute of Public Policies at the Spanish National Research Council (CSIC) in Madrid. The project team consists further of Dr Michael Morrison (Egenis/HTS research group, Exeter), Dr Flor Arias (University of Extremadura, Spain) and Dr Pilar Nicolás Jiménez (Chair in Law and Human Genome, University of Deusto, Bilbao, Spain).

The project examines the links between two related domains of biomedical activity: Assisted reproduction (AR), which involves the provision of in-vitro fertilisation and related infertility treatments, pre-implantation genetic diagnosis of embryos, and organised donation/collection of human eggs and sperm etc, and regenerative medicine (RM), the innovative attempt to develop and use human cells including stem cells as therapeutic tools to augment the body’s capacity for self-repair. Some notable work in the sociologies of science and medicine has already drawn attention to the close links between the provision of infertility treatment and the supply of human eggs and embryos for stem cell research (SCR) (Franklin, 2006; Roberts & Throsby, 2008) and the similar, though separate, sourcing of foetal tissue for SCR from abortion clinics (Kent, 2008). In this project we aim to step back from these micro-sociological accounts, valuable though they are, and take account of the political, legal, institutional, and economic networks in which these activities are embedded.

In particular we will look at the ways in which predominant political ideas of individual (customer/consumer) choice in medical service provision and the positioning of innovation in the life sciences as a key driver of economic growth have acted to shape the emergence and co-production of AR and RM, while at the same time examining the extent to which  local cultural, regulatory, social, and practical traditions and understandings still play an important role in shaping the actual implementation and trajectories of these domains. In order to illustrate both the continuities and fragmentations the BioARReMe project will involve a comparison of the bioeconomies of AR and RM across two distinct national contexts — Spain and the UK.

Important sub-questions of the project include:

  • How have legal instruments configured individuals as patients, donors, service users etc in ways that facilitate the kinds of bioeconomic relations that are visible in assisted reproduction and RM?
  • What flows of material (stem cell lines, gametes, and other tissues), people (physicians, patients, scientists etc) and practices (techniques, standards, regulatory and legal approaches) can be observed between the bioeconomies of Spain and the UK? How can we map, measure and account for these?
  • What continuities and differences are detectable in the ways people position themselves in relation to different technologies of RM and AR (e.g. through different roles such as donor, patient, regulator, and in different national contexts)?

The BioARReMe project is funded through the Plan Naçional funding scheme in Spain and held its inaugural meeting on 26th January 2012.