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Internet Research Ethics for the Social Age

New Challenges, Cases, and Contexts

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Edited By Michael Zimmer and Katharina Kinder-Kurlanda

The continuous evolution of internet and related social media technologies and platforms have opened up vast new means for communication, socialization, expression, and collaboration. They also have provided new resources for researchers seeking to explore, observe, and measure human opinions, activities, and interactions. However, those using the internet and social media for research – and those tasked with facilitating and monitoring ethical research such as ethical review boards – are confronted with a continuously expanding set of ethical dilemmas. Internet Research Ethics for the Social Age: New Challenges, Cases, and Contexts directly engages with these discussions and debates, and stimulates new ways to think about – and work towards resolving – the novel ethical dilemmas we face as internet and social media-based research continues to evolve. The chapters in this book – from an esteemed collection of global scholars and researchers – offer extensive reflection about current internet research ethics and suggest some important reframings of well-known concepts such as justice, privacy, consent, and research validity, as well as providing concrete case studies and emerging research contexts to learn from.

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Chapter Twenty: Negotiating Consent, Compensation, and Privacy in Internet Research: PatientsLikeMe.com as a Case Study (Robert Douglas Ferguson)

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CHAPTER TWENTY

Negotiating Consent, Compensation, AND Privacy IN Internet Research

PatientsLikeMe.com as a Case Study

ROBERT DOUGLAS FERGUSON



INTRODUCTION

Social networking sites have become an invaluable research tool for researchers today. One type of information that is becoming more accessible through the Internet is personal health information. Personal health information (PHI) (Pratt, Unruh, Civan, & Skeels, 2006) refers to documentation about the state of a person’s health, normally collected and under the control of health care practitioners or patients. The use of social networking platforms to collect personal health information brings to the fore unresolved ethical dilemmas around: 1) the collection of informed consent online; 2) compensation for participants’ contributions; and 3) the ability of researchers to guarantee privacy after data collection. To explore these ethical dilemmas, I reflect on ethnographic fieldwork collected as part of an anthropological study on how people relate to their personal health information. Participant observation was conducted over ten months within the Mood Disorders Community on the American patient social networking site and research platform PatientsLikeMe.com (PLM).1 My interactions with users of PLM identified: 1) how the site’s user agreement failed to ensure participation was full and informed, particularly concerning secondary commercial use of data collected on the site; 2) how some participants perceive their participation on PLM as a form of labor, which underscores the importance of selecting appropriate forms of incentive or remuneration; and lastly 3) how...

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