Digital Trespass: Ethical and Terms-of-Use Violations by Researchers Accessing Data From an Online Patient Community

Journal of Medical Internet Research
Emil Chiauzzi, Paul Wicks

Abstract

With the expansion and popularity of research on websites such as Facebook and Twitter, there has been increasing concern about investigator conduct and social media ethics. The availability of large data sets has attracted researchers who are not traditionally associated with health data and its associated ethical considerations, such as computer and data scientists. Reliance on oversight by ethics review boards is inadequate and, due to the public availability of social media data, there is often confusion between public and private spaces. In addition, social media participants and researchers may pay little attention to traditional terms of use. In this paper, we review four cases involving ethical and terms-of-use violations by researchers seeking to conduct social media studies in an online patient research network. These violations involved unauthorized scraping of social media data, entry of false information, misrepresentation of researcher identities of participants on forums, lack of ethical approval and informed consent, use of member quotations, and presentation of findings at conferences and in journals without verifying accurate potential biases and limitations of the data. The correction of these ethical lapses ...Continue Reading

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Citations

May 3, 2019·Current Opinion in Rheumatology·Katja ReuterAtul Deodhar
Nov 7, 2019·Journal of Empirical Research on Human Research Ethics : JERHRE·Chris Norval, Tristan Henderson
May 29, 2019·The American Journal of Bioethics : AJOB·Calvin W L HoKarel Caals
Aug 22, 2020·Yearbook of Medical Informatics·Carolyn PetersenUNKNOWN Section Editors Special Section on Ethics in Health Informatics of the International Medical Informatics Association Yearboo
Aug 22, 2020·Yearbook of Medical Informatics·Harry Hochheiser, Rupa S Valdez
Sep 8, 2020·Journal of the American Geriatrics Society·Nishila MehtaPaula A Rochon
Dec 20, 2019·Journal of Medical Internet Research·Sherry PagotoRan Xu
May 14, 2020·Journal of Adolescent and Young Adult Oncology·Eva De ClercqBernice S Elger
May 15, 2021·Journal of Medical Internet Research·Biswamohan MishraVenugopalan Y Vishnu
May 15, 2021·AJOB Neuroscience·Joshua August Skorburg, Josephine Yam
Jun 22, 2021·The International Journal on Drug Policy·Tim Rhodes, Kari Lancaster
Oct 2, 2021·Journal of Medical Internet Research·Annette Braunack-MayerKylie Sproston

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Methods Mentioned

BETA
scraping

Software Mentioned

OKCupid
PatientsLikeMe
Cambridge Analytica
Google Scholar Alert
CIOMS

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