scholarly journals Digital Trespass: Ethical and Terms-of-Use Violations by Researchers Accessing Data From an Online Patient Community (Preprint)

2018 ◽  
Author(s):  
Emil Chiauzzi ◽  
Paul Wicks
Keyword(s):  
Social Media ◽  
Informed Consent ◽  
Research Network ◽  
Media Ethics ◽  
Computer Data ◽  
Social Media Data ◽  
Media Research ◽  
Social Media Research ◽  
Media Data ◽  
Review Boards

UNSTRUCTURED 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 often involves much effort in detecting and responding to violators, addressing these lapses with members of an online community, and correcting inaccuracies in the literature (including retraction of publications and conference presentations). Despite these corrective actions, we do not regard these episodes solely as violations. Instead, they represent broader ethical issues that may arise from potential sources of confusion, misinformation, inadequacies in applying traditional informed consent procedures to social media research, and differences in ethics training and scientific methodology across research disciplines. Social media research stakeholders need to assure participants that their studies will not compromise anonymity or lead to harmful outcomes while preserving the societal value of their health-related studies. Based on our experience and published recommendations by social media researchers, we offer potential directions for future prevention-oriented measures that can be applied by data producers, computer/data scientists, institutional review boards, research ethics committees, and publishers.

scholarly journals Navigating Big Data dilemmas: Feminist holistic reflexivity in social media research

2018 ◽  
Vol 5 (2) ◽  
pp. 205395171880773 ◽  
Author(s):  
Cheryl Cooky ◽  
Jasmine R Linabary ◽  
Danielle J Corple
Keyword(s):  
Social Media ◽  
Big Data ◽  
Institutional Review Boards ◽  
Social Media Data ◽  
Institutional Review ◽  
Slow Adaptation ◽  
Private Research ◽  
Media Research ◽  
Social Media Research ◽  
Media Data

Social media offers an attractive site for Big Data research. Access to big social media data, however, is controlled by companies that privilege corporate, governmental, and private research firms. Additionally, Institutional Review Boards’ regulative practices and slow adaptation to emerging ethical dilemmas in online contexts creates challenges for Big Data researchers. We examine these challenges in the context of a feminist qualitative Big Data analysis of the hashtag event #WhyIStayed. We argue power, context, and subjugated knowledges must each be central considerations in conducting Big Data social media research. In doing so, this paper offers a feminist practice of holistic reflexivity in order to help social media researchers navigate and negotiate this terrain.

scholarly journals How scientists can take the lead in establishing ethical practices for social media research

2019 ◽  
Vol 26 (4) ◽  
pp. 311-313 ◽  
Author(s):  
Sherry Pagoto ◽  
Camille Nebeker
Keyword(s):  
Social Media ◽  
Scientific Community ◽  
Human Subjects ◽  
Research Misconduct ◽  
The United States ◽  
Ethical Practices ◽  
Social Media Data ◽  
Media Research ◽  
Social Media Research ◽  
Media Data

Abstract Social media use has become ubiquitous in the United States, providing unprecedented opportunities for research. However, the rapidly evolving research landscape has far outpaced federal regulations for the protection of human subjects. Recent highly publicized scandals have raised legitimate concerns in the media about how social media data are being used. These circumstances combined with the absence of ethical standards puts even the best intentioned scientists at risk of possible research misconduct. The scientific community may need to lead the charge in insuring the ethical use of social media data in scientific research. We propose 6 steps the scientific community can take to lead this charge. We underscore the important role of funding agencies and universities to create the necessary ethics infrastructure to allow social media research to flourish in a way that is pro-technology, pro-science, and most importantly, pro-humanity.

scholarly journals Informed, Uninformed and Participative Consent in Social Media Research

2013 ◽  
Vol 55 (6) ◽  
pp. 791-808 ◽  
Author(s):  
Daniel Nunan ◽  
Baskin Yenicioglu
Keyword(s):  
Social Media ◽  
Informed Consent ◽  
Interpersonal Communication ◽  
Online Data ◽  
Consumer Privacy ◽  
The Social ◽  
Media Research ◽  
Social Media Research ◽  
Ethics Guidelines ◽  
Media Data

The use of online data is becoming increasingly essential for the generation of insight in today's research environment. This reflects the much wider range of data available online and the key role that social media now plays in interpersonal communication. However, the process of gaining permission to use social media data for research purposes creates a number of significant issues when considering compatibility with professional ethics guidelines. This paper critically explores the application of existing informed consent policies to social media research and compares with the form of consent gained by the social networks themselves, which we label ‘uninformed consent’. We argue that, as currently constructed, informed consent carries assumptions about the nature of privacy that are not consistent with the way that consumers behave in an online environment. On the other hand, uninformed consent relies on asymmetric relationships that are unlikely to succeed in an environment based on co-creation of value. The paper highlights the ethical ambiguity created by current approaches for gaining customer consent, and proposes a new conceptual framework based on participative consent that allows for greater alignment between consumer privacy and ethical concerns.

Accepting the challenges of social media research

2015 ◽  
Vol 39 (3) ◽  
pp. 281-289 ◽  
Author(s):  
Katrin Weller
Keyword(s):  
Social Media ◽  
Design Methodology ◽  
Publication Output ◽  
Social Media Data ◽  
General Audience ◽  
Content Type ◽  
The Media ◽  
Media Research ◽  
Social Media Research ◽  
Media Data

Purpose – The purpose of this paper is to introduce a new viewpoint series, Monitoring the Media: Spotlight on Social Media Research, by providing an overview of the key challenges in social media research and some current initiatives in addressing them. Design/methodology/approach – The paper considers publication output from disciplines dealing with social media studies and summarises the key challenges as discussed in the broader research community. Findings – The paper suggests that challenges originate both from the interdisciplinary nature of social media research and from the ever-changing research landscape. It concludes that, whilst the community is addressing some challenges, others require more attention. Originality/value – The paper summarises key challenges of social media and will be of interest to researchers in different disciplines, as well as a general audience, wanting to learn about how social media data are used for research.

scholarly journals Sharing selves: Developing an ethical framework for curating social media data

2018 ◽  
Vol 12 (2) ◽  
pp. 196-209 ◽  
Author(s):  
Sara Mannheimer ◽  
Elizabeth A. Hull
Keyword(s):  
Social Media ◽  
Multiple Roles ◽  
Ethical Framework ◽  
Academic Librarians ◽  
Research Practice ◽  
Digital Repository ◽  
Social Media Data ◽  
Media Research ◽  
Social Media Research ◽  
Media Data

Open sharing of social media data raises new ethical questions that researchers, repositories and data curators must confront, with little existing guidance available. In this paper, the authors draw upon their experiences in their multiple roles as data curators, academic librarians, and researchers to propose the STEP framework for curating and sharing social media data. The framework is intended to be used by data curators facilitating open publication of social media data. Two case studies from the Dryad Digital Repository serve to demonstrate implementation of the STEP framework. The STEP framework can serve as one important ‘step’ along the path to achieving safe, ethical, and reproducible social media research practice.

scholarly journals Is It Time to Re-Evaluate the Ethics Governance of Social Media Research?

2018 ◽  
Vol 13 (4) ◽  
pp. 452-454 ◽  
Author(s):  
G. Samuel ◽  
W. Ahmed ◽  
H. Kara ◽  
C. Jessop ◽  
S. Quinton ◽  
...  
Keyword(s):  
Social Media ◽  
Research Ethics ◽  
Ethical Issues ◽  
Real Life ◽  
Ethics Committees ◽  
Research Ethics Committees ◽  
Media Ethics ◽  
Research Institution ◽  
Media Research ◽  
Social Media Research

This article reports on a U.K. workshop on social media research ethics held in May 2018. There were 10 expert speakers and an audience of researchers, research ethics committee members, and research institution representatives. Participants reviewed the current state of social media ethics, discussing well-rehearsed questions such as what needs consent in social media research, and how the public/private divide differs between virtual and real-life environments. The lack of answers to such questions was noted, along with the difficulties posed for ethical governance structures in general and the work of research ethics committees in particular. Discussions of these issues enabled the creation of two recommendations. The first is for research ethics committees and journal editors to add the category of ‘data subject research’ to the existing categories of ‘text research’ and ‘human subject research’. This would reflect the fact that social media research does not fall into either of the existing categories and so needs a category of its own. The second is that ethical issues should be considered at all stages of social media research, up to and including aftercare. This acknowledges that social media research throws up a large number of ethical issues throughout the process which, under current arrangements for ethical research governance, risks remaining unaddressed.

scholarly journals Social Media Research Network: Social Media Toolkit

2021 ◽  
Author(s):  
Akash Shroff ◽  
Chantelle A Roulston ◽  
Marian Ruiz ◽  
Sharon Chen
Keyword(s):  
Social Media ◽  
Science Communication ◽  
Research Network ◽  
Research Groups ◽  
The Social ◽  
Large Audience ◽  
Social Media Platforms ◽  
Media Research ◽  
Social Media Research ◽  
Social Media Presence

The Social Media Research Network was co-founded by Chantelle Roulston and Akash Shroff in August 2021 with the support of Dr. Jessica Schleider and the Lab for Scalable Mental Health (LSMH). Since 2018, LSMH has been recruiting adolescents and parents using social media—primarily Facebook and Instagram. As of September 2021, our social media presence has reached 1.4 million people across the world. More than 35,000 individuals have interacted with our posts and messages and more than 6,000 youth, young adults, and parents have completed our single-session interventions. We wanted to share our current success and improve our processes by forming a collaboration of psychology/adolescent development research labs.The SMRN Social Media Toolkit is designed to consolidate social media experiences and suggestions from various labs into a useful document for others to use. This is by no means an exhaustive list of social media platforms and suggestions. We have limited the toolkit to include the use of Facebook and Instagram, owned and trademarked by Meta Platforms, Inc.. Instagram and Facebook encompass a very large audience (diverse in age, location, and race/ethnicity). The platforms have a lot of overlap and have been successful in research efforts for the authors. This toolkit outlines broad concepts of branding, post design, and post management. It also provides details, suggestions, and tips on how to create an account, gain a following, increase engagement, and more on both Facebook and Instagram. . Lastly, it details the process of using paid Facebook and Instagram advertisements for research purposes (i.e., recruiting participants).The ultimate goal of SMRN is to increase collaboration across research groups so that we can leverage the entire network’s social media presence to improve recruitment, science communication, and outreach efforts for all research groups involved. We hope this document will serve as a preliminary guide for the research groups within the network.

scholarly journals Attitudes and Knowledge of Adolescents in Jordan Regarding the Ethics of Social Media Data Use for Research Purposes

2020 ◽  
Vol 15 (1-2) ◽  
pp. 87-96
Author(s):  
Hiba Wazeer Al Zou’bi ◽  
Moawiah Khatatbeh ◽  
Karem H. Alzoubi ◽  
Omar F. Khabour ◽  
Wael K. Al-Delaimy
Keyword(s):  
Social Media ◽  
Informed Consent ◽  
Online Survey ◽  
Personal Information ◽  
Data Use ◽  
Ethical Aspects ◽  
Social Media Data ◽  
Attitudes And Knowledge ◽  
Media Data ◽  
Research Studies

This study assessed the awareness and attitudes of adolescents in Jordan concerning the ethics of using their social media data for scientific studies. Using an online survey, 393 adolescents were recruited (mean age: 17.2 years ± 1.8). The results showed that 88% of participants were using their real personal information on social media sites, with males more likely to provide their information than females. More than two thirds of participants (72.5%) were aware that researchers may use their data for research purposes, with the majority believing that informed consent must be obtained from both the adolescents and their parents. However, more than three quarters of those surveyed (76%) did not trust the results of research that depended on collecting data from social media. These findings suggest that adolescents in Jordan understood most of the ethical aspects related to the utilization of their data from social media websites for research studies.

Social Media Relationships

2021 ◽  
Author(s):  
Umoloyouvwe Ejiro Onomake
Keyword(s):  
Social Media ◽  
Participant Observation ◽  
Multiple Relationships ◽  
Social Media Data ◽  
For Profit ◽  
Social Media Platforms ◽  
Media Research ◽  
Use Of Social Media ◽  
The Relationship ◽  
Media Data

Ethnography has been used to research various people and topics online, primarily using netnography and digital ethnography. Researchers and businesses employ digital ethnographic methods to access an assortment of social media platforms in order to learn about social media users. Researchers seek to understand relationships between social media users and organizations from both academic and practitioner perspectives. These organizations run the gamut from for-profit businesses, to nonprofits, nongovernmental organizations (NGOs), and government agencies. The specific focus here is on social media research as it relates to businesses. Organizations make use of social media in a variety of ways, but chiefly to market to clients and to gather information on followers; the latter of which, in turn, helps them understand their target markets. While this social media data is both quantitative and qualitative in nature, the emphasis here centers on qualitative data, particularly the ways businesses interact with social media users. While some firms mainly use older forms of one-way marketing that solely focus on disseminating information, other firms increasingly seek ways to interact with customers and co-create products with clients. Additionally, social media users are creating their own communities, formed due to a shared interest in a brand. Companies strive to learn more about their customers through these groups. Influencers also play a role in the relationship between organizations and social media users by linking their own followerships to products and brands. In turn, influencers develop their own relationships with organizations through sponsorships, thus becoming brands themselves. Influencers risk losing their followerships when followers perceive them as no longer accessible or authentic. This change in perception can occur for a variety of reasons, including when followers believe that an influencer has prioritized brand alignment over building connections with followers. Due to multiple relationships with different brands and their followers, influencers must negotiate the ambiguity and evolving nature of their role. As social media and digital spaces develop, so must the tools used by anthropologists. Anthropologists should remain open to incorporating hallmarks of ethnographic research such as fieldnotes, participant observation, and focus groups in new ways and alongside tools from other disciplines, including market and UX (user experience) research. The divide between practitioners and academics is blurring. Anthropologists can solve client issues while contributing their voices to larger anthropological and societal discussions.

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