Abstract
Publicly-private; Privately-Public? The Ethics of Self-Disclosure In A Digital Age
This panel will explore how digital technology changes the parameters surrounding self-disclosure and privacy and how this impacts on patients sharing illness stories online. As more patients share personal illness narratives in online blogs and social media, the blurring between public and private raises ethical questions. Is information shared publicly implicitly available to researchers, educators, and the media because it is in the public domain? Or should personal information always be treated privately? Who determines appropriate use of social media when a family member is posting information and not the patient? What are the ethics of research that includes collecting and analyzing patient stories or observing online behaviour without individuals knowing they are being included in research? In an age when technology has outpaced the ethical underpinnings of research and the culture surrounding privacy has changed profoundly, how can we protect against narrative cooptation?
Biography
Marie Ennis-O’Connor is an award-winning health blogger and international conference speaker with a passionate interest in the role of social media in healthcare. She is is co-founder of #BCCEU, Europe’s first breast cancer social media chat and is a founding member of Health2.0 Dublin, part of the Health2.0 international movement. A Stanford Medicine X ePatient scholar, Marie has extensive experience of working with healthcare practitioners and patient advocates and is interested in how both can engage and learn from each other at the level of social media.
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