RESEARCH: Genetic testing goes online

NY DNA image

This research examines the intersection of two important emerging technologies – genetic testing and the internet – through the case of direct-to-consumer genetic testing. This ever-changing industry raises important questions about participatory medicine, commercialisation of healthcare, genetic narratives and trust.

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This research, conducted with Susan Kelly and Sally Wyatt, examines the intersection of two important emerging technologies: genetic testing and the internet. The latter provides consumers with direct access to genetic tests and personal genetic information, potentially unmediated by healthcare professionals. These developments are raising critical questions about patient empowerment, ‘democratization’ 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.

Researchers:

Susan Kelly (University of Exeter), Sally Wyatt (Maastricht University) and Anna Harris (Maastricht University)

Aims and Objectives:

The project was intended to:

1. Evaluate claims concerning consumer empowerment from direct access to personal genetic health information from consumer, patient and provider perspectives.

2. Examine DTC genetic testing internet sites in terms of how products, genetic science, consumers and health information are represented. This analysis will take the form of both content analysis and media-specific analyses, and address what media-specific strategies are engaged by such sites with regard to consumer action.

3. Examine claims and promises being made by developers of psychiatric genetic tests. What tests are likely to emerge in the foreseeable future, in what contexts, and with what promises and limitations?

4. Examine how different user communities, including individuals affected with psychiatric disorders as well as their family members, advocates, and healthcare professionals regard direct-to-consumer genetic testing, specifically with regard to genetic tests for psychiatric disorders. What are the perspectives, concerns, and interests of user communities with regard to these technologies?

5. From the above, evaluate: a) relationships between DTC genetic testing technologies and forms of consensus and controversy in genetic knowledge production, b) potential uses and impacts of DTC genetic testing particularly in psychiatric genetics on individuals and families, and c) potential health system impacts.

See the Maastricht University MUSTS website, the ESRC website or the NWO website for more details.

Outcomes:

Publications

9781138946514

[not related to this project, but related to genetic testing]  von der Lippe, Charlotte, Frich, Jan, Harris, Anna and Solbrække, Kari. (2017) Treatment of hemophilia: A qualitative study of mothers’ perspectives. Pediatric Blood & Cancer 64 (1): 121 – 127.

[not related to this project, but related to genetic testing] von der Lippe, Charlotte, Frich, Jan C., Harris, Anna and Solbrække, Kari Nyheim (2016) Experiences of being a carrier of Fabry disease: a qualitative interview study. Journal of Genetic Counseling 25 (5): 1085–1092.

Harris, Anna, Kelly, Susan E. and Wyatt, Sally (2016) CyberGenetics: Health Genetics and New Media. London: Routledge.

Harris, Anna. (2016) “The ethics of researching images found online” In Ethics for Visual Research: Theory, Methodology and Practice edited by Warr, D., Guillemin, M., Cox, S. and Waycott, J. London: Palgrave Macmillan: 61 – 73

Wyatt, Sally, Harris, Anna and Kelly, Susan E. (2016) Controversy goes online: Schizophrenia genetics on Wikipedia (Science and Technology Studies) 29 (1). Access article here.

Harris, Anna, Kelly, Susan E and Wyatt, Sally (2015) Autobiologies: Making sense of engagements with healthcare technologies. Eä: Journal of Medical Humanities & Social Studies of Science and Technology 7(2).  Access article here.

Harris, Anna, Kelly, Susan E. and Wyatt, Sally (2014) Autobiologies on YouTube: Narratives of direct-to-consumer genetic testing. New Genetics & Society, 33 (1): 60 – 78. Access article here.

Wyatt, S., Harris, A., Adams, S., and Kelly, S. E., ‘Illness online: Self-reported data and questions of trust in medical and social research’, Theory, Culture & Society, July 2013; 30(4): pp. 131-150 (In special issue, Digital Devices: The Social Life of Methods, edited by John Law, Evelyn Ruppert, and Mike Savage.) Access article here.

Harris, A., Wyatt, S., van Heur, B. and Bier, J., ‘Participatory Knowledge Production 2.0?: Critical Views and Experiences’, Special issue of Information, Communication & Society, 16 (2). Access article here.

Wyatt, Sally, Bier, Jess, Harris, Anna, and van Heur, Bas (2013). Introduction to Participatory Knowledge Production 2.0?: Critical Views and Experiences, Special issue for Information, Communication & Society, 16 (2): 153 – 159. Access article here.

Harris, A., Kelly, S. and Wyatt, S., ‘Counseling Customers: Emerging Roles for Genetic Counselors in the Direct-to-Consumer Genetic Testing Market’, Journal of Genetic Counseling, 22(2), April 2013: 277-288. Access article here.

Harris, A., Wyatt, S. and Kelly, S. ‘The gift of spit (and the obligation to return it): How consumers of online genetic testing services participate in research’, Information, Communication & Society, March 2013, 16(2): pp 236-257. Access article here.

Harris, A., ‘Shopping for a soft sweater and a comfy pair of genes’, Genomics, Society and Policy, 7, 2011: 57-64. Access article here.

Kelly, Susan, E, Harris, Anna, and Wyatt, Sally. The medium and the message: Genetic counselling in the direct-to-consumer genetic testing industry. European Journal of Human Genetics 19, Supplement 2, 2011.

Harris, Anna, Wyatt, Sally, and Kelly, Susan E. (2011) Health-e skepticism: Trust in the age of the internet. Available at SSRN: http://ssrn.com/abstract=1921424 or http://dx.doi.org/10.2139/ssrn.1921424

Presentations

Wyatt, Sally, Harris, Anna and Kelly, Susan (2015) Self-reported data in medical and social research, UNIL-Brocher et Séminaire STS, 23 April, Université de Lausanne, Switzerland

Wyatt, Sally, Kelly, Susan and Harris, Anna (2015) Genetics goes online: New genetics meets new media, 7 April, Brocher Fondation, Geneva, Switzerland

Harris, Anna (2014) Autobiologies on YouTube and Other Narratives of Online Genetics, Medicine and the Digital Revolution Workshop, 18 – 19 December, University of Zurich, Switzerland

Harris, Anna (2014) Me, in and on a Tube: Narratives of Online Genetic Testers, Healthism & Self-Care: Reconfiguring Body & Life through Science & Technology Conference, 12 – 13 December, Centre d’études des techniques, connaissances et pratiques, The Sorbonne, France

Harris, Anna, Wyatt, Sally and Kelly, Susan E.  (2013) ‘Finding participants: How research methodologies define ‘users’’, Making and Sharing, Conference on Audience Creativity, Maastricht University, 4-5 July.

Harris, Anna (2013) Autobiologies on YouTube: New contexts for storytelling about genetics, Scandinavian network on narratives in medicine/health care, Faculty of Medicine, University of Oslo, Norway, 15 – 16 January

Harris, Anna, Wyatt, Sally and Kelly, Susan E. ‘Finding participants: How research methodologies define ‘users’’, 2012 Meeting of the Society for Social Studies of Science, Copenhagen, Denmark, 17 – 20 October 2012

Wyatt, Sally, Harris, Anna and Kelly, Susan E. ‘Schizophrenia genetics online: Spaces of contestation’, 2012 Meeting of the Society for Social Studies of Science, Copenhagen, Denmark, 17 – 20 October 2012

Kelly, S.E., Harris, A. and Wyatt, S. ‘Intersecting determinisms: Genetics goes online’, Challenges to Researching, Engaging and Governing the Messiness of Convergence, ESRC Genomics Policy and Research Forum, University of Edinburgh, Edinburgh, Scotland, 27 – 28 September 2012.

Harris, Anna Autobiologies on YouTube: New contexts for storytelling about genetics. Department of Health Care Governance departmental seminar, 17th September 2012, Erasmus University, Rotterdam, The Netherlands

Harris, A., Wyatt, S., and Kelly, S.E., ‘Autobiologies on YouTube: New contexts for storytelling about genetics’, Genetics goes online workshop, Maastricht University, The Netherlands, 12 – 14 September, 2012

Harris, Anna, Wyatt, Sally, and Kelly, Susan E. Active genomes: Examining a participatory turn in genetic research, The Co-Production of Knowledge: Social Media, STS and … Conference, York, UK, 18-20 July 2012

Harris, Anna, Wyatt, Sally, and Kelly, Susan E. Our beautiful genomes: a thematic analysis of public accounts of online genetic testing, Interdisciplinary Conference Communication, Medicine & Ethics, Trondheim, Norway, 28 – 30 June 2012

Harris, Anna, Kelly, Susan E. and Wyatt, Sally Intersecting determinisms: genetics goes online, Genomics in Society: Facts, Fictions & Culture, London, UK, 23 – 24 April 2012

Wyatt, Sally (2012) Selling genetic tests online. Infoscape Research Lab: Centre for the Study of Social Media, Ryerson University, 16 March, Toronto, Canada

Harris, Anna (2012) Selling genetics online, and the questions this raises. Egenis departmental seminar, 20 February, Exeter, United Kingdom

Wyatt, Sally (2012) Selling psychiatric genetic tests online, Department of Communication & Culture Colloquium, Faculty of Arts, University of Calgary, 27 January, Calgary, Canada

Wyatt, Sally, Harris, Anna and Kelly, Susan E. Molecular debates: mapping controversies about schizophrenia genetics on the internet, 2011 meeting of the Society for Social Studies of Science, Cleveland, USA, 2 – 5 November 2011

Kelly, S.E., with Harris, A. and Wyatt, S. ‘The gift of spit (and the obligation to return it): How consumers of online genetic testing services participate in research’, Genetics as Culture in a Consumerist Age – Interdisciplinary Symposium, University of Innsbruck, Austria, 27-29 October 2011.

Kelly, S.E., with Harris, A. and Wyatt, S., ‘Health-e skepticism: trust in the age of the internet’, Oxford Internet Institute Annual Conference, Oxford, 21-23 September 2011.

Kelly, S.E., with Harris, A. and Wyatt, S. ‘The medium and the message: Genetic counselling in the direct-to-consumer genetic testing industry’, European Society of Human Genetics Annual Meeting, Amsterdam, 28-31 May 2011.

Kelly, S., ‘Applying the sociology of diagnosis to mental health’, presentation to Mental Health Research Group, University of Exeter, Medical School, 14 March 2013.

Organised Genetics goes online workshop, Maastricht University, The Netherlands (12 – 14 September, 2012)

Kelly, S. ‘Mental Illness on Film: Stigma and ‘The Soloist’’, film screening and public discussion event with psychiatrist Dr Daniel Racey, Exeter RAMM, 10 May 2013.

Harris A. and Kelly S., ‘What can you do with your DNA?’ Workshop for A-level biology students, King’s School, Ottery St Mary, 17 June 2103.

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About pneumaticpost

I am an anthropologist/sociologist researching medical practices. For more about me, click here.

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