Translating genomic risk information to personal understanding
University of Helsinki, Finland
Finland is aiming to be a model country in utilizing genomic information. It is expected that with the help of genome knowledge and data bases health care costs can be cut, new innovations and business opportunities will be created and people can make preventive life style changes. A large-scale pilot project called GeneRISK was launched to further these goals. The aim of GeneRISK was to develop methods to gather, analyse and interpret genome knowledge related to cardiovascular diseases, and utilize the information in public and private health care as well as to provide some information directly to research participants.
The participants of the GeneRISK project received through an internet portal a personal genomic risk score that estimates their risk to have a cardiovascular event during the next ten years. The paper presents results from a focus group research made among these research participants. The analysis focuses on how research participants discuss and translate the information they have received to manageable and understandable knowledge. Translation is a process that involves interpretation, questioning, and sharing of the data. The results are also incorporated to participants’ personal experiences and their previous understandings of heritage, lifestyle, family and personal health history. The paper analyses through the reasoning of the focus group participants, the forms of subjectivities and subjectifications that a genomic risk score and its personal translation create as well as critically reflects the possibilities of these kinds of projects to promote life style changes.
What constitutes public trust in biomedical and genomics research in England?
London School of Hygiene and Tropical Medicine, United Kingdom
The success of biomedical research and subsequently the health care system depends on public trust. A paucity of research describes what public trust actually is. Therefore this study engages with participants’ and public perceptions and experiences of biobank and genomics research to conceptualise public trust. The research findings potentially contribute to health policy.
A secondary analysis of 21 face-to-face interviews with biobank participants and two public focus group interviews about the perception of genomics research was conducted. Data were thematically analysed following inductive coding. Open coding focused on the proximity of the search terms: trust, confidence, hope, believe, belief, faith, and love. The terms similar to trust are used in colloquial speech and were searched to broaden the scope of the search strategy. In an iterative process, conceptualising themes were identified.
This study identifies 15 key themes of public trust. Public trust is conceptualised by an anticipated net-benefit for the public and system, ethical use of data, autonomy and data security in official hands. The government, NHS and leading politicians are all viewed as mutually responsible to build public trust. Further, theory is developed where public trust is a consensus of public discourse in the public sphere.
Policy makers need to take into account the multiple themes identified. If biomedical and genomics research is to work it has to gain public trust. Threats of commercialisation of personal data in combination with a lack of an anticipated public benefit are the main drivers for low public trust in this context.
Giving a meaning to health through biobanks
University Institute of Lisbon (CIES-IUL), Portugal
Biobanks for clinical research purposes are increasingly common for supporting biomedical and basic research worldwide.
This research is focused in understanding how a biobank structure can be changing the concepts of health and illness, in an era of great technological innovation.
In the course of harvesting, collecting, and storing samples, many health professionals, lab technicians, researchers, and healthy and ill donors cross their paths around health and illness experiences.
When a biobank aims to collect samples from both healthy and ill donors, when doctors decide which samples to collect, when data is selected to be associated with the sample, when patients’ associations are asked to actively participate, when samples are released to one investigation instead of the others, what are the embedded meanings of health and illness? How are these conceptions defined in a context where using a large number of samples is becoming a validity and objectivity criteria for clinical investigation?
This research followed the samples’ trajectories, from harvesting to storing, using ethnography as research method, in a Portuguese biobank.
Fieldwork shows that the biobank works both as a centre of samples storage, and a mediator of many social practices. Connecting the world of basic researchers, doctors, patients and health and research organisations, the biobank reveals itself as a complex mixture of interests and paradigms. The complex dynamics around samples suggest that subjectivity plays an important role, not only in the so-called objective making of science, but also in giving diverse meanings to health and illness experiences.
Relations in biomedical research participation: Building a cross-cohort platform in the context of a national health system
University of Cambridge, United Kingdom
This paper examines how participation is re-conceptualised in the landscape of preventative, precision and personalised medicine in the UK. Tailored approaches to experimental medicine are increasingly presented as time and cost effective ways of developing new treatments for clinical care, proactively identifying and targeting the earliest causes of ill-health before long-term damage has accumulated. This is particularly pertinent in a financially constrained national health service. Such research requires a new kind of research participant and recruitment process. Rather than relying on volunteers and clinical recruitment, it requires access to large and sustainable groups of primarily healthy, ‘data rich’ participants. This approach has led to the rise of collaborative initiatives such as Dementias Platform UK (DPUK), which brings together over thirty longitudinal cohort studies with informatics, genomics, and imaging resources. Developing, linking and extending research networks in this way has the potential to change how research participation is conceptualised, managed and experienced.
Based on interviews and focus groups with cohort study participants linked to DPUK, I explore how a variety of relations are evoked to express understanding, experience and expectations of research participation. I specifically focus on how participants draw on personal and familial experiences of health and health care systems in the NHS to explain their engagement with research. Their accounts of health care demonstrate how participants understanding of research participation is embedded within the wider national health care system. These findings have important implications for how we understand willingness and motivation to participate in these evolving research networks.