BACKGROUND AND OBJECTIVES: There is interest in applying genomic sequencing (GS) to newborns’ clinical care. Here we explore parents’ and clinicians’ attitudes toward and perceptions of the risks, benefits, and utility of newborn GS compared with newborn screening (NBS) prior to receiving study results. METHODS: The BabySeq Project is a randomized controlled trial used to explore the impact of integrating GS into the clinical care of newborns. Parents (n = 493) of enrolled infants (n = 309) and clinicians (n = 144) completed a baseline survey at enrollment. We examined between-group differences in perceived utility and attitudes toward NBS and GS. Open-ended responses about risks and benefits of each technology were categorized by theme. RESULTS: The majority of parents (71%) and clinicians (51%) agreed that there are health benefits of GS, although parents and clinicians agreed more that there are risks associated with GS (35%, 70%) than with NBS (19%, 39%; all P < .05), Parents perceived more benefit and less risk of GS than did clinicians. Clinicians endorsed concerns about privacy and discrimination related to genomic information more strongly than did parents, and parents anticipated benefits of GS that clinicians did not. CONCLUSIONS: Parents and clinicians are less confident in GS than NBS, but parents perceive a more favorable risk/benefit ratio of GS than do clinicians. Clinicians should be aware that parents’ optimism may stem from their perceived benefits beyond clinical utility.

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An increasing number of U.S. news headlines report violence targeting Asian populations and harassment of health care workers, which suggests growing coronavirus disease (COVID-19)-related stigmatization of certain groups across the country. Empirical research characterizing the breadth of COVID-19-related stigma in the U.S. is lacking and yet is critically needed to inform interventions that mitigate known negative health impacts of such stigma. Using mixed methods, we explored experiences of COVID-19-related stigma reported in an online U.S.-based survey conducted in April 2020 (N = 1,366). Forty-two respondents (3.1%) reported experiencing COVID-19-related stigma. Qualitative analysis of open-ended responses revealed that perceived race and ethnicity was the characteristic most frequently connected to experiencing stigma followed by COVID-19 guideline adherence, suspected or confirmed severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, profession or place of employment, and age. Most COVID-19-related stigma connected to race and ethnicity was specific to anti-Asian, specifically anti-Chinese, sentiment. Exploratory quantitative analysis found identifying as Asian (OR = 6.96) and testing positive for COVID-19 (OR = 4.99) were associated with the highest odds of experiencing stigma (all p < .001). Employment as a health care worker and/or first responder, working with COVID-19 patients, being at high-risk of serious illness, or having COVID-19 symptoms (OR range = 2.50–2.94, all p < .01) were also associated with greater odds of experiencing stigma. Together, our quantitative and qualitative results suggest that Asian populations in the U.S. may be disproportionately affected by COVID-19-related stigma. Our findings also suggest associations between experiences of stigma and COVID-19-related health factors and vulnerability. This study may help inform future research that demonstrates the extent of COVID-19-related stigma and interventions to combat adverse effects.

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A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.