How Clinician-Family Interactions Potentially Impact Clinicians' Conceptualization and Discussions Regarding Prognostic Uncertainties.

OBJECTIVES: Little is known about how clinicians perceive prognostic uncertainty. Our study objective was to identify factors that influence how prognostic uncertainty is viewed by physicians, as it relates to their communications with families. DESIGN: Thirty semi-structured interviews with qualitative content analysis (9 surgeons, 16 intensivists, 3 nurse practitioners, and 2 "other" clinicians). We analyzed interviews using qualitative description with constant comparative techniques. SETTING: Open medical, surgical, neurosurgical, and cardiovascular intensive care units (ICUs) in a 900-bed academic, tertiary Houston hospital. INTERVENTIONS: None. MAIN RESULTS: We identified 2 main factors that influence how clinicians perceive prognostic uncertainty and their perceptions about whether and why they communicate prognostic uncertainties to families: (1) Communicating Uncertainty to "Soften the Blow"; and (2) Communicating Uncertainty in Response to Clinicians' Interpretations of Surrogate Decision Makers' Perceptions of Prognostic Uncertainty. We also identified several subthemes. CONCLUSIONS: Clinician-family interactions influence how clinicians perceive prognostic uncertainty in their communications with patients or families. We discuss ethical and clinical implications of our findings.

Parental interest in genomic sequencing of newborns: enrollment experience from the BabySeq Project.

PURPOSE: Newborn genomic sequencing (nGS) has great potential to improve pediatric care. Parental interest and concerns about genomics are relatively unexplored. Understanding why parents decline research consent for nGS may reveal implementation barriers. METHODS: We evaluated parental interest in a randomized trial of nGS in well-baby and intensive care unit nursery settings. Interested families attended an informational enrollment session (ES) with a genetic counselor prior to consenting. Reason(s) for declining participation and sociodemographic associations were analyzed. RESULTS: Of 3860 eligible approached families, 10% attended ES, 67% of whom enrolled. Of 1760 families queried for decline reasons, 58% were uninterested in research. Among 499 families considering research, principal reasons for decline prior to ES included burdensome study logistics (48%), feeling overwhelmed postpartum (17%), and lack of interest/discomfort with genetic testing (17%). Decliners after ES more often cited concerns about privacy/insurability (41%) and uncertain/unfavorable results (23%). CONCLUSION: Low interest in research and study logistics were major initial barriers to postpartum enrollment and are likely generic to many postpartum research efforts. Concerns over privacy and result implications were most commonly cited in decliners after ES. Understanding parental concerns around research nGS may inform future integration of nGS into newborn screening, predictive testing, and pediatric diagnostics.

Do privacy and security regulations need a status update? Perspectives from an intergenerational survey.

BACKGROUND: The importance of health privacy protections in the era of the "Facebook Generation" has been called into question. The ease with which younger people share personal information about themselves has led to the assumption that they are less concerned than older generations about the privacy of their information, including health information. We explored whether survey respondents' views toward health privacy suggest that efforts to strengthen privacy protections as health information is moved online are unnecessary. METHODS: Using Amazon's Mechanical Turk (MTurk), which is well-known for recruitment for survey research, we distributed a 45-item survey to individuals in the U.S. to assess their perspectives toward privacy and security of online and health information, social media behaviors, use of health and fitness devices, and demographic information. RESULTS: 1310 participants (mean age: 36 years, 50% female, 78% non-Hispanic white, 54% college graduates or higher) were categorized by generations: Millennials, Generation X, and Baby Boomers. In multivariate regression models, we found that generational cohort was an independent predictor of level of concern about privacy and security of both online and health information. Younger generations were significantly less likely to be concerned than older generations (all P < 0.05). Time spent online and social media use were not predictors of level of concern about privacy or security of online or health information (all P > 0.05). LIMITATIONS: This study is limited by the non-representativeness of our sample. CONCLUSIONS: Though Millennials reported lower levels of concern about privacy and security, this was not related to internet or social media behaviors, and majorities within all generations reported concern about both the privacy and security of their health information. Thus, there is no intergenerational imperative to relax privacy and security standards, and it would be advisable to take privacy and security of health information more seriously.