Emily Christofides

Hey Mom, What’s on Your Facebook? Comparing Facebook Disclosure and Privacy in Adolescents and Adults:

People of all ages are increasingly exposed to online environments that encourage them to share and connect with others. However, there is a perception that adolescents are particularly susceptible to these cues and share more online than do other age groups. With a group of 288 adolescents and 285 adults, we explored differences and similarities in use of Facebook for information sharing and use of the controls to protect their privacy. Adolescents reported disclosing more information on Facebook and using the privacy settings less than adults. Despite these differences, the results indicated that adolescents and adults were more similar than different in the factors that predicted information disclosure and control. Adolescents spent more time on Facebook, which partially mediated the relationship between group (adolescents vs. adults) and disclosure. Self-esteem partially mediated the relationship between group and information control, with adults having higher self-esteem than adolescents.

Risky Disclosures on Facebook The Effect of Having a Bad Experience on Online Behavior

Social network websites are widely used by adolescents, but disclosing in this environment has inherent risks, as does connecting with others online. In a sample of 256 adolescent Facebook users, the authors explore the relationship between having a negative experience, privacy knowledge, and behavior. Their reports of bad experiences on Facebook are categorized as bullying/meanness, unwanted contact, exposure/unintentional disclosure, and misunderstandings. Adolescents who report having a bad experience are more likely to protect their privacy, and this relationship is mediated by knowledge of the privacy settings. Participants who experience negative consequences are more aware of the risks of online disclosure and how to protect themselves, which results in greater information control. Implications for educating adolescents about privacy and disclosure online are discussed.

Gender stereotyping over instant messenger: The effects of gender and context

Researchers have observed that contrary to the high expectations for online communications, gender stereotyping has not disappeared in this medium, and is sometimes even accentuated. This study aimed to understand the effect of gender over instant messenger, a relatively new and unexplored medium. Instant messenger was chosen because it is a medium that is used most by youth who have grown up communicating online. Participants were interviewed over instant messenger about a potential online support service and were then asked to judge the effectiveness of their interviewer. The interviewer was identified only by a masculine or feminine name and was computer-simulated so as to remove any bias. The topic of discussion was stereotypically masculine or stereotypically feminine. Male participants were found to employ a male superiority heuristic, whereby they judged the male interviewer as more competent, regardless of the context. Female participants were hypothesized to judge the female interviewer as more competent in the feminine context, and the male interviewer as more competent in the masculine context (the context-gender match heuristic), but this hypothesis was not supported. The findings are discussed in the context of previous research on gender stereotyping in online communication.

Teaching Veterinary Professionalism in the Face(book) of Change

Facebook has been identified as the preferred social networking site among postsecondary students. Repeated findings in the social networking literature have suggested that postsecondary students practice high personal self-disclosure on Facebook and tend not to use privacy settings that would limit public access. This study identified and reviewed Facebook profiles for 805 veterinarians-in-training enrolled at four veterinary colleges across Canada. Of these, 265 (32.9%) were categorized as having low exposure, 286 (35.5%) were categorized as having medium exposure, and 254 (31.6%) were categorized as having high exposure of information. Content analysis on a sub-sample (n=80) of the high-exposure profiles revealed publicly available unprofessional content, including indications of substance use and abuse, obscene comments, and breaches of client confidentiality. Regression analysis revealed that an increasing number of years to graduation and having a publicly visible wall were both positively associated with having a high-exposure profile. Given the rapid uptake of social media in recent years, veterinary educators should be aware of and begin to educate students on the associated risks and repercussions of blurring ones private life and ones emerging professional identity through personal online disclosures.

If you build it, they will come: unintended future uses of organised health data collections

AbstractBackgroundHealth research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include:1)Population biobanks, cohort studies, and genome databases2)Clinical and public health data3)Direct-to-consumer genetic testing4)Social media5)Fitness trackers, health apps, and biometric data sensors Ethical, legal, and social challenges of such collections are well recognized, but there has been limited attention to the broader societal implications of the existence of these collections.DiscussionAlthough health research conducted using these collections is broadly recognized as beneficent, secondary uses of these data and samples may be controversial. We examine both documented and hypothetical scenarios of secondary uses of health data and samples. In particular, we focus on the use of health data for purposes of:Forensic investigationsCivil lawsuitsIdentification of victims of mass casualty eventsDenial of entry for border security and immigrationMaking health resource rationing decisionsFacilitating human rights abuses in autocratic regimesConclusionsCurrent safeguards relating to the use of health data and samples include research ethics oversight and privacy laws. These safeguards have a strong focus on informed consent and anonymization, which are aimed at the protection of the individual research subject. They are not intended to address broader societal implications of health data and sample collections. As such, existing arrangements are insufficient to protect against subversion of health databases for non-sanctioned secondary uses, or to provide guidance for reasonable but controversial secondary uses. We are concerned that existing debate in the scholarly literature and beyond has not sufficiently recognized the secondary data uses we outline in this paper. Our main purpose, therefore, is to raise awareness of the potential for unforeseen and unintended consequences, in particular negative consequences, of the increased availability and development of health data collections for research, by providing a comprehensive review of documented and hypothetical non-health research uses of such data.

Company disclosure and consumer perceptions of the privacy implications of direct-to-consumer genetic testing

This study examines the way direct-to-consumer genetic testing (DTCGT) companies communicate privacy information and how consumers understand privacy implications of DTCGT. We first conducted an analysis of DTCGT websites to determine what information they provide regarding the treatment of consumer information and samples. 86 companies offered DTCGT services that could be purchased online from Canada. We then surveyed 415 consumers (180 had purchased, 235 considered but did not purchase DTCGT). While most websites had some privacy information, few provided sufficient information for consumers to make informed purchase decisions. Nearly half of participants reported reading the company’s privacy policy and many felt they received enough information about privacy implications, but their expectations were generally not consistent with company practices. The most common expectation was that the company would share results only with them and destroy their sample after testing. We discuss these issues regarding privacy expectations in the context of DTCGT.

How Do Young People with Cystic Fibrosis Conceptualize the Distinction Between Research and Treatment? A Qualitative Interview Study

Background: Recently, it has been argued that the distinction between medical research and medical care is not as clear-cut as is often implied in research ethics protocols. Young people with cystic fibrosis, a progressive genetic disorder requiring daily management, often grow up participating in biomedical research. Given debates about the importance of the treatment/research distinction, as well as recent challenges to maintaining this distinction, the purpose of this article is to provide empirical evidence about young peoples understanding of their research experiences. Methods: Semistructured interviews were conducted with 19 young people (ages 8 to 18 years) with cystic fibrosis. Interviews focused on their experiences participating in research related to cystic fibrosis, their reasons for participating, and their understanding of the distinction between research and treatment. Qualitative methods were used to analyze patients’ perceived distinction between research and treatment. Results: Some participants clearly distinguished between research and clinical care, using signifiers including the type and nature of procedure, purpose, and voluntariness of the activity. Other participants described research and treatment as connected activities. In some cases they labeled research-related activities as treatment activities, and in other cases their descriptions highlighted the overlapping nature of research and treatment in sophisticated ways. Conclusions: The results of this study support suggestions that the distinction between research and care as upheld by research ethics is not meaningfully sustainable in all contexts. Sometimes participants see research and treatment as separate activities, but in other instances they understand that research and treatment may be closely connected. The results of this study may aid researchers and research ethics boards in helping potential participants to understand the possible impacts of research participation.

How communication context impacts judgments of a potential peer mentor

Abstract Disclosure is a critical element of interpersonal relationships and individuals are often evaluated on what they share with others, whether in personal, professional, or learning contexts. Technology now allows for many different outlets for communicating with other people. We used experimental methods to explore the impact of communication medium (i.e. print diary, online diary, blog, or email) on psychosocial perceptions of a potential peer mentor. Female participants gave more positive mentor ratings on likeability, likeliness to disclose to the mentor, and perceived closeness than did males, but not on judgments of the mentor’s privacy. Participants judged the mentor to be more private when they viewed the print diary than in the online conditions and when reading the online diary than the blog (the least private condition). We also found that women were more likely to reciprocate disclosure when they viewed disclosures in the print condition than in the blog.

The Meanings of Helping: An Analysis of Cystic Fibrosis Patients’ Reasons for Participating in Biomedical Research

Research participants often report wanting to help as a reason for participation, but who they want to help and why is rarely explored. We examined meanings associated with helping among 21 adults with cystic fibrosis (CF)—a group with high participation in research. Meanings included helping to advance research, helping others with CF, helping as their job, helping themselves, helping because they are special, and helping to give back. While some meanings were primarily oriented toward helping others, some also involved hoping for benefits for oneself, and some included feelings of responsibility. Despite indicating that they understood that research is not designed to help them directly, participants nevertheless hoped that it might. We discuss implications for research ethics oversight.