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.

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

BACKGROUND: Health 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 databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) 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. DISCUSSION: Although 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 investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes CONCLUSIONS: Current 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.

Heuristic decision-making about research participation in children with cystic fibrosis.

RATIONALE: Traditional perspectives on informed consent assume that when faced with decisions about whether to participate in research, individuals behave according to principles of classical rationality, taking into account all available information to weigh risks and benefits to come to a decision that is optimal for them. However, theoretical and empirical research in psychology suggests that people may not make decisions in this way. Less is known about decision-making processes as they pertain to participating in biomedical research, particularly when the participants are children. OBJECTIVE: We sought to better understand research decision processes especially in children who tend to participate extensively in research due to chronic illness. METHODS: To learn more about children's decision-making in this context, we interviewed 19 young patients with cystic fibrosis (male n = 7; female n = 12) aged 8-18 years (M = 13 years) at a children's hospital in Canada between April and August 2013. RESULTS: We found that participants generally had a default approach to participation decisions, which they attributed to their parents' attitudes to research, experiences of having grown up participating in research, trusting the researchers, and wanting to help. Most of our participants made the decision to participate in research based on a heuristic with a baseline to say "yes", subject to change based on aspects of the research or particular preferences. In particular, concerns with the procedure, unwillingness to talk about cystic fibrosis, logistical challenges, and perceptions of risk all influenced the decision, as did the perceived importance or personal relevance of the research. CONCLUSION: Our study illustrates that rather than conducting risk/benefit analyses, participants tended to adopt a heuristic-like approach, consistent with decision theories that view heuristic decision-making as ecologically rational.

Reputation management on facebook: awareness is key to protecting yourself, your practice, and the veterinary profession.

From the Social media use by health professionals occurs in a digital environment where etiquette has yet to be solidly defined. The objectives of this study were to explore veterinarians' personal use of Facebook, knowledge of privacy settings, and factors related to sharing personal information online. All American Animal Hospital Association member veterinarians with a valid e-mail address (9469) were invited to complete an online survey about Facebook (e.g., time spent on Facebook, awareness of consequences, types of information posted). Questions assessing personality dimensions including trust, popularity, self-esteem and professional identity were included. The response rate was 17% (1594 of 9469); 72% of respondents (1148 of 1594) had a personal Facebook profile. Veterinarians were more likely to share information on Facebook than they would in general. Trust, need for popularity, and more time spent on Facebook predicted more disclosure of personal information on Facebook. Awareness of consequences and increased veterinary experience predicted lesser disclosure. As veterinary practices use Facebook to improve client services, they need also to manage risks associated with online disclosure by staff. Raising awareness of reputation management and consequences of posting certain types of information to Facebook is integral to protecting the individual, the practice, and the veterinary profession.

Facebook use among early-career veterinarians in Ontario, Canada (March to May 2010).

OBJECTIVE: To explore the nature and content of information publicly posted to Facebook by early-career veterinarians. DESIGN: Cross-sectional descriptive study. Sample-352 early-career veterinarians. PROCEDURES: Publicly accessible Facebook profiles were searched online from March to May 2010 for profiles of early-career veterinarians (graduates from 2004 through 2009) registered with the College of Veterinarians of Ontario, Canada. The content of veterinarians' Facebook profiles was evaluated and then categorized as low, medium, or high exposure in terms of the information a veterinarian had publicly posted to Facebook. Through the use of content analysis, high-exposure profiles were further analyzed for publicly posted information that may have posed risks to an individual's or the profession's public image. RESULTS: Facebook profiles for 352 of 494 (71%) registered early-career veterinarians were located. One-quarter (25%) of profiles were categorized as low exposure (ie, high privacy), over half (54%) as medium exposure (i.e., medium privacy), and 21% as high exposure (i.e., low privacy). Content analysis of the high-exposure profiles identified publicly posted information that may pose risks to an individual's or the profession's reputation, including breaches of client confidentiality, evidence of substance abuse, and demeaning comments toward others. CONCLUSIONS AND CLINICAL RELEVANCE: Almost a quarter of veterinarians' Facebook profiles viewed in the present study contained publicly available content of a questionable nature that could pose a risk to the reputation of the individual, his or her practice, or the veterinary profession. The increased use of Facebook and all types of social media points to the need for raised awareness by veterinarians of all ages of how to manage one's personal and professional identities online to minimize reputation risks for individuals and their practices and to protect the reputation and integrity of the veterinary profession.

Understanding veterinary students' use of and attitudes toward the social networking site, Facebook, to assist in developing curricula to address online professionalism.

Social media is an increasingly common form of communication, with Facebook being the preferred social-networking site among post-secondary students. Numerous studies suggest post-secondary students practice high self-disclosure on Facebook. Research evaluating veterinary students' use of social media found a notable proportion of student-posted content deemed inappropriate. Lack of discretion in posting content can have significant repercussions for aspiring veterinary professionals, their college of study, and the veterinary profession they represent. Veterinarians-in-training at three veterinary colleges across Canada were surveyed to explore their use of and attitude toward the social networking site, Facebook. Students were invited to complete an online survey with questions relating to their knowledge of privacy in relation to using Facebook, their views on the acceptability of posting certain types of information, and their level of professional accountability online. Linear regression modeling was used to further examine factors related to veterinary students' disclosure of personal information on Facebook. Need for popularity (p<.01) and awareness of consequences (p<.001) were found to be positively and negatively associated, respectively, with students' personal disclosure of information on Facebook. Understanding veterinary students' use of and attitudes toward social media, such as Facebook, reveals a need, and provides a basis, for developing educational programs to address online professionalism. Educators and administrators at veterinary schools may use this information to assist in developing veterinary curricula that addresses the escalating issue of online professionalism.

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 one's private life and one's emerging professional identity through personal online disclosures.

More information than you ever wanted: does Facebook bring out the green-eyed monster of jealousy?

The social network site Facebook is a rapidly expanding phenomenon that is changing the nature of social relationships. Anecdotal evidence, including information described in the popular media, suggests that Facebook may be responsible for creating jealousy and suspicion in romantic relationships. The objectives of the present study were to explore the role of Facebook in the experience of jealousy and to determine if increased Facebook exposure predicts jealousy above and beyond personal and relationship factors. Three hundred eight undergraduate students completed an online survey that assessed demographic and personality factors and explored respondents' Facebook use. A hierarchical multiple regression analysis, controlling for individual, personality, and relationship factors, revealed that increased Facebook use significantly predicts Facebook-related jealousy. We argue that this effect may be the result of a feedback loop whereby using Facebook exposes people to often ambiguous information about their partner that they may not otherwise have access to and that this new information incites further Facebook use. Our study provides evidence of Facebook's unique contributions to the experience of jealousy in romantic relationships.

Information disclosure and control on Facebook: are they two sides of the same coin or two different processes?

Facebook, the popular social network site, is changing the nature of privacy and the consequences of information disclosure. Despite recent media reports regarding the negative consequences of disclosing information on social network sites such as Facebook, students are generally thought to be unconcerned about the potential costs of this disclosure. The current study explored undergraduate students' information disclosure and information control on Facebook and the personality factors that influence levels of disclosure and control. Participants in this online survey were 343 undergraduate students who were current users of Facebook. Results indicated that participants perceived that they disclosed more information about themselves on Facebook than in general, but participants also reported that information control and privacy were important to them. Participants were very likely to have posted information such as their birthday and e-mail address, and almost all had joined an online network. They were also very likely to post pictures such as a profile picture, pictures with friends, and even pictures at parties and drinking with friends. Contrary to expectations, information disclosure and information control were not significantly negatively correlated, and multiple regression analyses revealed that while disclosure was significantly predicted by the need for popularity, levels of trust and self-esteem predicted information control. Therefore, disclosure and control on Facebook are not as closely related as expected but rather are different processes that are affected by different aspects of personality. Implications of these findings and suggestions for future research are discussed.