Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review

Author(s):  
Emily G. Miller ◽  
Amanda L. Woodward ◽  
Grace Flinchum ◽  
Jennifer L. Young ◽  
Holly K. Tabor ◽  
...  
2021 ◽  
pp. 136787792110035
Author(s):  
Mari Lehto ◽  
Susanna Paasonen

This article investigates the affective power of social media by analysing everyday encounters with parenting content among mothers. Drawing on data composed of diaries of social media use and follow-up interviews with six women, we ask how our study participants make sense of their experiences of parenting content and the affective intensities connected to it. Despite the negativity involved in reading and participating in parenting discussions, the participants find themselves wanting to maintain the very connections that irritate them, or even evoke a sense of failure, as these also yield pleasure, joy and recognition. We suggest that the ambiguities addressed in our research data speak of something broader than the specific experiences of the women in question. We argue that they point to the necessity of focusing on, and working through affective ambiguity in social media research in order to gain fuller understanding the complex appeal of platforms and exchanges.


2018 ◽  
Vol 13 (4) ◽  
pp. 452-454 ◽  
Author(s):  
G. Samuel ◽  
W. Ahmed ◽  
H. Kara ◽  
C. Jessop ◽  
S. Quinton ◽  
...  

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.


2018 ◽  
Vol 5 (2) ◽  
pp. 205395171880773 ◽  
Author(s):  
Cheryl Cooky ◽  
Jasmine R Linabary ◽  
Danielle J Corple

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.


Author(s):  
Suay Melisa Ozkula ◽  
Paul Reilly ◽  
Jennifer Hayes

Burgess and Bruns (2015) have linked the computational turn in social media research to a rise in studies that focus exclusively on ‘easy’ data, such as the ‘low hanging fruit’ provided by Twitter hashtags. This paper set out to explore whether this preponderance of easy data and studies focused on the 2011-12 protests is evident in research between 1995 and 2019 through a systematic review of digital activism literature (N = 1444). A particular focus of the review was the extent to which digital activism research revolved around the use of computational digital methods, case studies based in Europe and North America and data gathered from single online platforms (e.g. Twitter). The review showed that most of these studies focused on social movements, campaigns, activists, and parties based in the United Kingdom and United States, and were conducted by researchers based in universities in these countries. In contrast, there were relatively few articles addressing activism, institutions and platforms in non-Western /Global South contexts with the exception of the Arab Spring in 2011. In terms of methodological approaches, traditional research methods and big data digital methods studies were prevalent. In response to the easy data hypothesis, the study found that Twitter was the most researched platform in the corpus, but that digital methods were not as commonly deployed in these articles as traditional methods. Thus, the paper concludes argues in favor of greater diversity in digital activism research in terms of its methods, participants, and countries of origin.


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