Disposition toward privacy and information disclosure in the context of emerging health technologies.

ObjectiveWe sought to present a model of privacy disposition and its development based on qualitative research on privacy considerations in the context of emerging health technologies.Materials and methodsWe spoke to 108 participants across 44 interviews and 9 focus groups to understand the range of ways in which individuals value (or do not value) control over their health information. Transcripts of interviews and focus groups were systematically coded and analyzed in ATLAS.ti for privacy considerations expressed by respondents.ResultsThree key findings from the qualitative data suggest a model of privacy disposition. First, participants described privacy related behavior as both contextual and habitual. Second, there are motivations for and deterrents to sharing personal information that do not fit into the analytical categories of risks and benefits. Third, philosophies of privacy, often described as attitudes toward privacy, should be classified as a subtype of motivation or deterrent.DiscussionThis qualitative analysis suggests a simple but potentially powerful conceptual model of privacy disposition, or what makes a person more or less private. Components of privacy disposition are identifiable and measurable through self-report and therefore amenable to operationalization and further quantitative inquiry.ConclusionsWe propose this model as the basis for a psychometric instrument that can be used to identify types of privacy dispositions, with potential applications in research, clinical practice, system design, and policy

Physician preparedness for big genomic data: a review of genomic medicine education initiatives in the United States.

In the last decade, genomic medicine education initiatives have surfaced across the spectrum of physician training in order to help address a gap in genomic medicine preparedness among physicians. The approaches are diverse and stem from the belief that 21st century physicians must be proficient in genomic medicine applications as they will be leaders in the precision medicine movement. We conducted a review of literature in genomic medicine education and training for medical students, residents, fellows, and practicing physicians with articles published between June 2015 and January 2018 to gain a picture of the current state of genomic medicine education with a focus on the United States. We found evidence of progress in the development of new and innovative educational programs and other resources aimed at increasing physician knowledge and readiness. Three overarching educational approach themes emerged, including immersive and experiential learning; interdisciplinary and interprofessional education; and electronic- and web-based approaches. This review is not exhaustive, nevertheless, it may inform future directions and improvements for genomic medicine education. Important next-steps include: (i) identifying and studying ways to best implement low-cost dissemination of genomic information; (ii) emphasizing genomic medicine education program evaluation and (iii) incorporating interprofessional and interdisciplinary initiatives. Genomic medicine education and training will become more and more relevant in the years to come as physicians increasingly interact with genomic and other precision medicine technologies

Physician Communication of Genomic Results in a Diagnostic Odyssey Case Series.

Background and objectivesThe availability of whole genome sequencing (WGS) is increasing in clinical care, and WGS is a promising tool in diagnostic odyssey cases. Physicians' ability to effectively communicate genomic information with patients, however, is unclear. In this multiperspective study, we assessed physicians' communication of patient genome sequencing information in a diagnostic odyssey case series.MethodsWe evaluated physician communication of genome sequencing results in the context of an ongoing study of the utility of WGS for the diagnosis of rare and idiopathic diseases. A modified version of the Medical Communication Competence Scale was used to compare patients' ratings of their physicians' communication of general medical information to communication of genome sequencing information. Physician self-ratings were also compared with patient ratings.ResultsA total of 47 patients, parents, and physicians across 11 diagnostic odyssey cases participated. In 6 of 11 cases (54%), the patient respondent rated the physician's communication of genome sequencing information as worse than that of general medical information. In 9 of 11 cases (82%), physician self-ratings of communication of genome sequencing information were worse than the patient respondent's rating. Identification of a diagnosis via WGS was positively associated with physician self-ratings (P = .021) but was not associated with patient respondent ratings (P = .959).ConclusionsThese findings reveal that even in diagnostic odyssey cases, in which genome sequencing may be clinically beneficial, physicians may not be well-equipped to communicate genomic information to patients. Future studies may benefit from multiperspective approaches to assessing and understanding physician-patient communication of genome-sequencing information

Impacts of personal DNA ancestry testing.

Consumer uptake of direct-to-consumer (DTC) DNA ancestry testing is accelerating, yet few empirical studies have examined test impacts on recipients despite the DTC ancestry industry being two decades old. Participants in a longitudinal cohort study of response to health-related DTC genomic testing also received personal DNA ancestry testing at no additional cost. Baseline survey data from the primary study were analyzed together with responses to an additional follow-up survey focused on the response to ancestry results. Ancestry results were generated for 3466 individuals. Of those, 1317 accessed their results, and 322 individuals completed an ancestry response survey, in other words, approximately one in ten who received ancestry testing responded to the survey. Self-reported race/ethnicity was predictive of those most likely to view their results. While 46% of survey responders (N = 147) reported their ancestry results as surprising or unexpected, less than 1% (N = 3) were distressed by them. Importantly, however, 21% (N = 67) reported that their results reshaped their personal identity. Most (81%; N = 260) planned to share results with family, and 12% (N = 39) intended to share results with a healthcare provider. Many (61%; N = 196) reported test benefits (e.g., health insights), while 12% (N = 38) reported negative aspects (e.g., lack of utility). Over half (N = 162) reported being more likely to have other genetic tests in the future. DNA ancestry testing affected individuals with respect to personal identity, intentions to share genetic information with family and healthcare providers, and the likelihood to engage with other genetic tests in the future. These findings have implications for medical care and research, specifically, provider readiness to engage with genetic ancestry information

Impacts of personal DNA ancestry testing.

Consumer uptake of direct-to-consumer (DTC) DNA ancestry testing is accelerating, yet few empirical studies have examined test impacts on recipients despite the DTC ancestry industry being two decades old. Participants in a longitudinal cohort study of response to health-related DTC genomic testing also received personal DNA ancestry testing at no additional cost. Baseline survey data from the primary study were analyzed together with responses to an additional follow-up survey focused on the response to ancestry results. Ancestry results were generated for 3466 individuals. Of those, 1317 accessed their results, and 322 individuals completed an ancestry response survey, in other words, approximately one in ten who received ancestry testing responded to the survey. Self-reported race/ethnicity was predictive of those most likely to view their results. While 46% of survey responders (N = 147) reported their ancestry results as surprising or unexpected, less than 1% (N = 3) were distressed by them. Importantly, however, 21% (N = 67) reported that their results reshaped their personal identity. Most (81%; N = 260) planned to share results with family, and 12% (N = 39) intended to share results with a healthcare provider. Many (61%; N = 196) reported test benefits (e.g., health insights), while 12% (N = 38) reported negative aspects (e.g., lack of utility). Over half (N = 162) reported being more likely to have other genetic tests in the future. DNA ancestry testing affected individuals with respect to personal identity, intentions to share genetic information with family and healthcare providers, and the likelihood to engage with other genetic tests in the future. These findings have implications for medical care and research, specifically, provider readiness to engage with genetic ancestry information

Measures of empathy and compassion: A scoping review.

Evidence to date indicates that compassion and empathy are health-enhancing qualities. Research points to interventions and practices involving compassion and empathy being beneficial, as well as being salient outcomes of contemplative practices such as mindfulness. Advancing the science of compassion and empathy requires that we select measures best suited to evaluating effectiveness of training and answering research questions. The objective of this scoping review was to 1) determine what instruments are currently available for measuring empathy and compassion, 2) assess how and to what extent they have been validated, and 3) provide an online tool to assist researchers and program evaluators in selecting appropriate measures for their settings and populations. A scoping review and broad evidence map were employed to systematically search and present an overview of the large and diverse body of literature pertaining to measuring compassion and empathy. A search string yielded 19,446 articles, and screening resulted in 559 measure development or validation articles reporting on 503 measures focusing on or containing subscales designed to measure empathy and/or compassion. For each measure, we identified the type of measure, construct being measured, in what context or population it was validated, response set, sample items, and how many different types of psychometrics had been assessed for that measure. We provide tables summarizing these data, as well as an open-source online interactive data visualization allowing viewers to search for measures of empathy and compassion, review their basic qualities, and access original citations containing more detail. Finally, we provide a rubric to help readers determine which measure(s) might best fit their context