The contested meanings of race and ethnicity in medical research: A case study of the DynaMed Point of Care tool.

Although the use of race and ethnicity for diagnostic purposes remains a controversial practice given the socially contingent meaning of the terms (Bowker and Star, 1999), health researchers continue to report possible relationships between health outcomes and race/ethnicity in the literature. As summaries of these types of studies are incorporated into commercial databases designed to provide medical practitioners with actionable information, there is a risk that the algorithms that drive the databases may unintentionally incorporate racist biases (O'Neil, 2016) in search reports that use race and ethnicity as query terms to identify findings to help in the diagnosis and treatment of particular patients. As a first step to unpacking this risk, we conducted a content analysis of the records and related citation trails in DynaMed's Point of Care (PoC) tool that refer to racial and ethnic research findings. Our analysis demonstrates that DynaMed does not control for how meanings of race and ethnicity are constructed in its entries, does not always accurately represent the nuanced and contingent nature of the findings about race/ethnicity that it cites, and relies on sources that are not always consistent with the 'evidence-based' criterion that the company self-promotes as a feature of its PoC tool. We conclude that, by failing to acknowledge the complex and contradictory ways that race and ethnicity may, or may not, correlate with the risk of a medical ailment, algorithmically-driven tools that use these concepts to establish group risks for medical ailments may unintentionally work to 'resuscitat[e] biological theories of race by modernizing old racial typologies that were based on observations of physical differences with cutting-edge genomic research' (Roberts, 2011: 567).

"I'll use it differently now": using dual-systems theory to explore youth engagement with networked technologies.

OBJECTIVES: Many young Canadians experience high levels of networked connectivity, which some suggest may negatively impact their health. Adult monitoring has not been shown to be an effective long-term strategy for supporting young people in healthy engagement with tech. In this study, we explore the benefits of empowering young people to set healthy goals and monitor themselves. We engage with Shapka's (2019) critique of dual-systems theory, and consider the relationship between the neurological and behavioural systems in relation to adolescent internet use. METHODS: Using a youth participatory action research approach, we co-designed a project with six adolescents to explore the ways that their use of networked technologies was affecting their lives by disconnecting and observing how the lack of networked connectivity changed their experiences. The youth used a media diary to track their use of devices both before and after disconnecting. RESULTS: The main benefit of disconnecting appeared to be having the opportunity to reflect on one's own use of networked devices. This enabled the participants to reconnect in a more intentional way. Findings support Shapka's speculation that dual-systems theory, with a focus on regulation, may not be the most useful way of supporting adolescents in developing healthy habits around their wired tech. CONCLUSION: Adolescent experiences of networked technologies are complex, yet they are able to navigate this landscape with intelligent strategies. Their self-directed exploration of disconnection helped them to become reflexive practitioners who were able to revisit their use of networked technologies with new insights and self-control.

RéSUMé: OBJECTIFS: Les niveaux élevés de connectivité réseau sont courants chez les jeunes Canadiens, ce qui pourrait avoir des effets nuisibles sur leur santé. La surveillance par les adultes n'est pas une stratégie efficace à long terme pour aider les jeunes à établir une relation saine avec la technologie. Nous explorons ici les avantages de donner aux jeunes les moyens de se fixer des objectifs sains et de s'autosurveiller. Nous abordons la critique par Shapka de la théorie des systèmes duels (2019) et considérons la relation entre les systèmes neurologique et comportemental en lien avec l'utilisation d'Internet par les adolescents. MéTHODE: À l'aide d'une démarche de recherche-action participative avec des jeunes, nous avons conçu, en collaboration avec six adolescents, un projet pour explorer les effets de l'utilisation des technologies réseau dans leurs vies en les déconnectant et en observant en quoi l'absence de connectivité réseau modifiait leur expérience. Les jeunes ont noté leur utilisation d'appareils en réseau avant et après la déconnexion dans un « journal médias ¼. RéSULTATS: Le principal avantage de la déconnexion semblait être la possibilité de réfléchir à sa propre utilisation des appareils en réseau. Les participants ont ainsi pu rétablir cette connexion de façon plus intentionnelle. Nos constatations confirment l'hypothèse de Shapka selon laquelle la théorie des systèmes duels, axée sur la réglementation, n'est peut-être pas le meilleur moyen d'aider les adolescents à acquérir de saines habitudes face à leurs appareils en réseau. CONCLUSION: L'expérience des technologies réseau chez les adolescents est complexe, mais avec des stratégies intelligentes, ils réussissent à trouver leur voie. Leur exploration autodirigée de la déconnexion les a aidés à devenir des praticiens réfléchis, capables de retourner à leur utilisation des technologies réseau avec plus de retenue et des vues plus larges.

Consent for use of personal information for health research: do people with potentially stigmatizing health conditions and the general public differ in their opinions?

BACKGROUND: Stigma refers to a distinguishing personal trait that is perceived as or actually is physically, socially, or psychologically disadvantageous. Little is known about the opinion of those who have more or less stigmatizing health conditions regarding the need for consent for use of their personal information for health research. METHODS: We surveyed the opinions of people 18 years and older with seven health conditions. Participants were drawn from: physicians' offices and clinics in southern Ontario; and from a cross-Canada marketing panel of individuals with the target health conditions. For each of five research scenarios presented, respondents chose one of five consent choices: (1) no need for me to know; (2) notice with opt-out; (3) broad opt-in; (4) project-specific permission; and (5) this information should not be used. Consent choices were regressed onto: demographics; health condition; and attitude measures of privacy, disclosure concern, and the benefits of health research. We conducted focus groups to discuss possible reasons for observed consent choices. RESULTS: We observed substantial variation in the control that people wish to have over use of their personal information for research. However, consent choice profiles were similar across health conditions, possibly due to sampling bias. Research involving profit or requiring linkage of health information with income, education, or occupation were associated with more restrictive consent choices. People were more willing to link their health information with biological samples than with information about their income, occupation, or education. CONCLUSIONS: The heterogeneity in consent choices suggests individuals should be offered some choice in use of their information for different types of health research, even if limited to selectively opting-out. Some of the implementation challenges could be designed into the interoperable electronic health record. However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive.

Data protection and the promotion of health research.

This paper challenges the argument that data protection legislation may harm research by unduly restricting the flow of personal health information. I unpack the assumption that privacy is an individual right that must give way to research as a social good, and explore how data protection laws facilitate the flow of information for research purposes. I conclude that researchers should embrace data protection laws because they help construct trust in research practices, mitigate the commercial imperatives that flow from the fact that research is a public-private enterprise and protect the accuracy of data. Good research design should recognize that privacy is a social value and an essential element of psychological health and social relationships. And since research databases do not exist in isolation, researchers must respect the fact that the non-consensual flow of information poses risks of harm, including the secondary use of health research databases for social control, that must be managed.