Bilateral Netherlands: Selling genetic tests online: user perspectives on direct to consumer psychiatric genetic tests
Lead Research Organisation:
UNIVERSITY OF EXETER
Department Name: Sociology and Philosophy
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Organisations
People |
ORCID iD |
| Susan Kelly (Principal Investigator) |
Publications
Anna Harris (Author)
(2012)
Schizophrenia genetics online: Spaces of contestation
Anna Harris (Author)
(2012)
Our beautiful genomes: a thematic analysis of public accounts of online genetic testing
Harris A
(2011)
My Beautiful Genome Lone Frank Oneworld Publications, 2011: Shopping for a soft sweater and a comfy pair of genes
in Genomics, Society and Policy
Harris A
(2013)
Counseling customers: emerging roles for genetic counselors in the direct-to-consumer genetic testing market.
in Journal of genetic counseling
Harris A
(2011)
Conceptualizing Trust in Digital Environments: Health-e Skepticism: Trust in the Age of the Internet
in SSRN Electronic Journal
Harris A
(2014)
Autobiologies on YouTube: Narratives of Direct-to-Consumer Genetic Testing.
in New genetics and society
Harris A
(2013)
THE GIFT OF SPIT (AND THE OBLIGATION TO RETURN IT) How consumers of online genetic testing services participate in research
in Information, Communication & Society
Harris, A.
(2016)
CyberGenetics:Health Genetics and New Media
Harris, A.
(2015)
Autobiologies: Making sense of engagements with healthcare technologies; Autobiologies: Donner un sens aux engagements avec les technologies de soins
in Eä - Journal of Medical Humanities & Social Studies of Science and Technology
Sally Wyatt (Author)
(2012)
Finding participants: How research methodologies define 'users'
| Title | Prevnetive Measures |
| Description | Poem written for our book/project by award winning poet Caolinn Hughes |
| Type Of Art | Creative Writing |
| Year Produced | 2016 |
| Impact | The book itself won an award. |
| Description | We have discovered that the models of the personal genomics industry provide useful insight into key questions engaging researchers, research participants, and other generating and using genomic data. These include consent for participation in research, data sharing, and hybrid subject positions (patient/consumer/participant/citizen). We discovered that trust is key, and examined various ways in which it was located, generated and indicated. We also identified that empowerment is a highly ambiguous inducement to participate in research and data generation and sharing. We discovered that related health professions were responding to critiques of the industry in interesting and challenging ways, with potential changes in professional ethos. We demonstrated that taking the internet as a platform for these activities seriously enables new insights into practices that were previously critiqued only on the basis of the quality of information produced and lack of intervening service provides. These findings suggest to us that the DTCGT industry is highly relevant to understanding directions genomic research is taking, and related ethical issues. |
| Exploitation Route | Our findings may be taken up by policy makers, healthcare professionals and potential consumers of personal genomics, as well as ethicists, researchers and research participants. |
| Sectors | Digital/Communication/Information Technologies (including Software) Education Healthcare Government Democracy and Justice |
| URL | https://www.routledge.com/products/9781138946514 |
| Description | Brocher Foundation Visiting Researcher |
| Amount | € 0 (EUR) |
| Organisation | Brocher Foundation |
| Sector | Charity/Non Profit |
| Country | Switzerland |
| Start | 03/2015 |
| End | 04/2015 |
| Description | Open |
| Amount | € 2,500 (EUR) |
| Funding ID | CoBes/JK/VT/11.079 |
| Organisation | Limburg University Fund (Universiteitsfonds Limburg/SWOL) |
| Sector | Academic/University |
| Country | Netherlands |
| Start | 12/2011 |
| End | 12/2012 |
| Description | Applying the sociology of diagnosis to mental health |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Seminar given to Mental Health Research Group, University of Exeter Medical School. Many practitioners in the audience seeking to learn about the sociology of diagnosis (synergy with another ESRC funded grant in which I participate - a series of workshops across the UK on the sociology of diagnosis, and establishment of a network or consortium of scholars and practitioners around this approach). The seminar provoked questions and discussion of practice. I was in touch with one practitioner concerning relevance to his practice. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Autobiologies on YouTube: New contexts for storytelling about genetics |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Presentation delivered at 'Genetics goes online' workshop, Maastricht University. We organised this international workshop and gave this presentation as well as introductions and commentaries. Stimulated a great deal of discussion, that was fed into the final publication of this talk as a peer reviewed journal article. |
| Year(s) Of Engagement Activity | 2012 |
| Description | Autobiologies on YouTube: New contexts for storytelling about genetics |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Presentation delivered at Department of Health Care Governance departmental seminar, Erasmus University, the Netherlands. The audience included medics and other health care personnel as well as ethicists. This paper has now been published in a peer reviewed journal. |
| Year(s) Of Engagement Activity | 2012 |
| Description | Autobiologies on YouTube: New contexts for storytelling about genetics |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Paper delivered to the Scandinavian network on narratives in medicine/health care at the Faculty of Medicine, University of Oslo. The audience included medics. Stimulated discussion and furthered development of international network. Input incorporated into paper submission, this has now been published in New Genetics and Society. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Engaging with direct to consumer genetics: what is good science? |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Schools |
| Results and Impact | We delivered a two hour module to a 6th form biology class, that was highly interactive and asked students to engage with and evaluate direct to consumer genetic testing products, raising questions both about the social and ethical implications of sharing genetic data online, and evaluating the quality and scientific claims about such products. We were asked for the educational materials we developed for future use. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Genetics goes online |
| Form Of Engagement Activity | Scientific meeting (conference/symposium etc.) |
| Part Of Official Scheme? | No |
| Type Of Presentation | workshop facilitator |
| Geographic Reach | National |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | International workshop organised at Maastricht University. This workshop allowed an international and interdisciplinary group of researchers to share findings on the emerging field of direct to consumer genetics. We organised this workshop and presented as introducers and commentators. The papers sparked extensive discussion. There was a great deal of cross learning and network development. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Intersecting determinisms: Genetics goes online |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Presentation at workshop: Challenges to Researching, Engaging and Governing the Messiness of Convergence, ESRC Genomics Forum An edited book was planned from this activity but we chose to withdraw our paper as we are writing a book from this project separately. |
| Year(s) Of Engagement Activity | 2012 |
| Description | Selling genetic tests online |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Seminar at the Infoscape Research Lab: Centre for the Study of Social Media, Ryerson University. Stimulated discussion and requests for special student seminar on the topic. |
| Year(s) Of Engagement Activity | 2012 |
| URL | http://www.infoscapelab.ca/events/lecture-dr-sally-wyatt-selling-genetic-tests-online |
| Description | Selling genetics online, and the questions this raises |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Seminar deliverd at Egenis, University of Exeter. Sharing information about our ongoing research with colleagues. Increased awareness of our research that has led to other collaborations. |
| Year(s) Of Engagement Activity | 2012 |
| Description | Selling psychiatric genetic tests online |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | Paper delivered at Department of Communication & Culture Colloquium, University of Calgary. Sparked a lot of questions and discussion among students. Did not attempt to gather information about impact among the postgraduate students. |
| Year(s) Of Engagement Activity | 2012 |
| Description | The Soloist: Mental health and stigma in film |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Public event held at the Royal Albert Memorial Museum, Exeter. Public film screening followed by moderated discussion. Involved psychiatrist Daniel Racey, as well as S Kelly. Was funded by the ESRC. After the event, which involved lively discussion, at least one member of the audience was in touch with the PI, Kelly, about a related event being held in the community. Kelly and Racey participated in another film and discussion event directed toward medical students on the topic of mental health. We did not capture audience responses to the original event, but during discussion it was clear that talking about mental health and stigma was important to many audience members, and doing so publically was in itself an intervention into the problem of stigma surrounding mental health conditions. |
| Year(s) Of Engagement Activity | 2013 |
| Description | The gift of spit (and the obligation to return it): How consumers of online genetic testing services participate in research |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Paper delivered at 'Genetics as Culture in a Consumerist Age' - Interdisciplinary Symposium, University of Innsbruck. Maintain contact with an international network of scholars working on this topic. This paper was published afterward in a special issue of Information, Communication and Society, and received a lot of comment and discussion at this meeting. |
| Year(s) Of Engagement Activity | 2011 |
| Description | What can you do with your DNA? |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Schools |
| Results and Impact | Workshop for A-level biology students, King's School, Ottery St Mary, Devon. Sparked questions and discussion afterwards. The educational materials we developed for this activity were requested by the teacher. |
| Year(s) Of Engagement Activity | 2013 |