Utilizing Social Media to Study Information-Seeking and Ethical Issues in Gene Therapy

Julie M. Robillard · Louise Whiteley · Thomas W. Johnson · Jonathan Lim · Wyeth W. Wasserman · Judy Illes

28 citations0/0 files storedJournal of Medical Internet Research

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Social Media in Health Education Health Literacy and Information Accessibility Biomedical Ethics and Regulation

Abstract

BACKGROUND: The field of gene therapy is rapidly evolving, and while hopes of treating disorders of the central nervous system and ethical concerns have been articulated within the academic community, little is known about views and opinions of different stakeholder groups. OBJECTIVE: To address this gap, we utilized social media to investigate the kind of information public users are seeking about gene therapy and the hopes, concerns, and attitudes they express. METHODS: We conducted a content analysis of questions containing the keywords "gene therapy" from the Q&A site "Yahoo! Answers" for the 5-year period between 2006 and 2010. From the pool of questions retrieved (N=903), we identified those containing at least one theme related to ethics, environment, economics, law, or society (n=173) and then characterized the content of relevant answers (n=399) through emergent coding. RESULTS: The results show that users seek a wide range of information regarding gene therapy, with requests for scientific information and ethical issues at the forefront of enquiry. The question sample reveals high expectations for gene therapy that range from cures for genetic and nongenetic diseases to pre- and postnatal enhancement of physiological attributes. Ethics questions are commonly expressed as fears about the impact of gene therapy on self and society. The answer sample echoes these concerns but further suggests that the acceptability of gene therapy varies depending on the specific application. CONCLUSIONS: Overall, the findings highlight the powerful role of social media as a rich resource for research into attitudes toward biomedicine and as a platform for knowledge exchange and public engagement for topics relating to health and disease.

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1994Handbook of Qualitative Research 2006The Sage Handbook of Qualitative Research[1]2007The Politics of Life Itself 2006Politics of life itself: biomedicine, power and subjectivity in the twenty-first century 2010Netnography: Doing Ethnographic Research Online 2009Netnography: Doing Ethnographic Research Online 2007Editorial: The New Era of Mixed Methods 2009Social Media Use in the United States: Implications for Health Communication

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