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Although still in the early stages of development, the advent of fast, high-output, and cost-effective next-generation DNA sequencing technology is moving precision medicine into public health. Before this shift toward next-generation sequencing in public health settings, individual patients met geneticists after showing symptoms and through limited family screening. In the new era of precision public health, everyone is a possible participant in genetic sequencing, simply by being born (newborn screening), by donating blood (biobanking), or through population screening. These initiatives are increasingly offered to individuals throughout their life and more individuals are encountering opportunities to use DNA sequencing. This article raises awareness of these growing areas and calls for different models of public engagement and communication about genomics, including screening asymptomatic populations, obtaining consent for unspecified and unforeseen future uses of genomic data, and managing variants of uncertain significance. Given that such communication challenges loom large, established norms of practice in genomic medicine and research should be reconsidered.

The PhenX Toolkit ( www.phenxtoolkit.org ), an online catalog of recommended measurement protocols, facilitates cross-study analyses for research with human participants. The PhenX Steering Committee recommended genomic medicine implementation as a new research domain, with the following scope: genomic knowledge and education (both patients and providers); implementation science; changes in management and treatment; return of results; patient outcomes; and ethical, legal, and social issues (ELSI) associated with genomic research. A seven-member expert Working Group convened in October 2019 to identify well-established measurement protocols for a new genomic medicine implementation domain and used the established PhenX consensus process to select measurement protocols for inclusion in the PhenX Toolkit. The Working Group recommended 15 measurement protocols for inclusion in the PhenX Toolkit, with priority given to those with empirical evidence supporting validity. Consortia funded by the National Institutes of Health, and particularly the National Human Genome Research Institute, proved critical in identifying protocols with established utility in this research domain, and identified protocols that were developed through a rigorous process for scope elements that lacked formally validated protocols. Use of these protocols, which were released in September 2020, can facilitate standard data collection for genomic medicine implementation research.

In this issue of the American Journal of Bioethics, Kraft and colleagues (2018) provide important insights into the role trust plays in donor's decisions to contribute data and samples to local bio...

OBJECTIVE/BACKGROUND: Approximately 400,000 adolescents give birth in the US annually. Although one-half experience depressive symptoms, less than 25% comply with referrals for depression evaluation and treatment. The current study tested the effectiveness of an internet based depression intervention on seeking depression treatment. METHODS: Based upon the Theory of Planned Behavior (TPB), the intervention included vignettes, questions and answers, and resources. Before the intervention, immediately after the intervention, and two-weeks later the adolescent mothers (n=151) answered questions related to TPB variables and depression treatment. Data were compared to adolescent mothers (n=138) in the control group. Data were collected in community organizations or home visits for the control group. Adolescent mothers in the intervention group answered questions and completed the intervention from a computer of their choice. RESULTS: The adolescents were primarily African American (89.2%); less than high school educated (51.7%); had given birth in last year (97.1%); with a mean age 18.2 years. The intervention led to significant changes in attitude, perceived control, intention to seek mental health treatment, and actually seeking depression treatment. CONCLUSIONS/DISCUSSION: Untreated postpartum depression dramatically impacts a mother’s relationships with her child, her functioning at work and school, health care seeking behaviors, mothering skills, and her development as well as the development of her child. An Internet based depression intervention is an inexpensive method to increase rates of depression treatment.

As more research studies incorporate next-generation sequencing (including whole-genome or whole-exome sequencing), investigators and institutional review boards face difficult questions regarding which genomic results to return to research participants and how. An American College of Medical Genetics and Genomics 2013 policy paper suggesting that pathogenic mutations in 56 specified genes should be returned in the clinical setting has raised the question of whether comparable recommendations should be considered in research settings. The Clinical Sequencing Exploratory Research (CSER) Consortium and the Electronic Medical Records and Genomics (eMERGE) Network are multisite research programs that aim to develop practical strategies for addressing questions concerning the return of results in genomic research. CSER and eMERGE committees have identified areas of consensus regarding the return of genomic results to research participants. In most circumstances, if results meet an actionability threshold for return and the research participant has consented to return, genomic results, along with referral for appropriate clinical follow-up, should be offered to participants. However, participants have a right to decline the receipt of genomic results, even when doing so might be viewed as a threat to the participants’ health. Research investigators should be prepared to return research results and incidental findings discovered in the course of their research and meeting an actionability threshold, but they have no ethical obligation to actively search for such results. These positions are consistent with the recognition that clinical research is distinct from medical care in both its aims and its guiding moral principles.

Background.Hospitalized premature infants are particularly vulnerable to morbidity and mortality from pertussis. Effective prevention and investigative and control measures are not well described.Objective.To identify the source of nosocomial pertussis in a 2-month-old premature infant in a neonatal intermediate care nursery (ICN) and to critically review the investigation and outbreak control measures.Setting.An ICN and a neonatal intensive care unit.Methods.We queried healthcare workers (HCWs) and family members about cough illness and contacted potentially exposed patients to determine whether they had symptoms of pertussis. Culture and polymerase chain reaction (PCR) testing forBordetella pertussiswere performed by the hospital laboratory with specimens collected from symptomatic patients and HCWs. Levels of pertussis toxin immunoglobulin G antibodies were measured in HCWs with cough of at least 14 days' duration at a public health laboratory. Extensive control measures were instituted.Results.Four ICN HCWs met the clinical case definition for presence of pertussis. Serologic test results were positive for 3 of the HCWs. The primary case patient was a 36-year-old HCW with a cough illness of 3-weeks' duration that was accompanied by paroxysms, whoop, posttussive emesis, and pneumothorax. Among the 4 affected HCWs, the duration of cough illness prior to identification of the infant index patient ranged from 11 to 25 days. Outbreak control measures included isolation of the infant case patient, furlough and treatment of symptomatic HCWs, administration of chemoprophylaxis to contacts, and surveillance for additional cases. Seventy-two infant patients and 72 HCWs were exposed and were given antibiotic prophylaxis. One additional case of pertussis, confirmed by PCR and culture, occurred in a resident physician who declined prophylaxis; she had cared for the index patient but had no contact with symptomatic HCWs.Conclusion.HCWs or patients may serve as the source of pertussis in nosocomial outbreaks, which can result in substantial morbidity and outlay of resources for control measures. Our review suggested that a diagnosis of pertussis should be an early consideration for HCWs with cough illness. Targeted pertussis immunization of HCWs, employee health policies that provide for testing and furlough of HCWs with prolonged cough, and monitoring of HCWs for compliance with infection control measures could reduce the morbidity and costs associated with pertussis outbreaks. These measures will require evaluation of their effectiveness.