RESUMO
On April 24, 2018, a suspect in California's notorious Golden State Killer cases was arrested after decades of eluding the police. Using a novel forensic approach, investigators identified the suspect by first identifying his relatives using a free, online genetic database populated by individuals researching their family trees. In the wake of the case, media outlets reported privacy concerns with police access to personal genetic data generated by or shared with genealogy services. Recent data from 1,587 survey respondents, however, provide preliminary reason to question whether such concerns have been overstated. Still, limitations on police access to genetic genealogy databases in particular may be desirable for reasons other than current public demand for them.
Assuntos
Criminosos , Genética Forense/métodos , Genealogia e Heráldica , Polícia , Adolescente , Adulto , California , Criminosos/legislação & jurisprudência , Bases de Dados de Ácidos Nucleicos/ética , Bases de Dados de Ácidos Nucleicos/legislação & jurisprudência , Feminino , Genética Forense/ética , Genética Forense/legislação & jurisprudência , Privacidade Genética/ética , Privacidade Genética/legislação & jurisprudência , Humanos , Masculino , Linhagem , Polícia/ética , Polícia/legislação & jurisprudência , Inquéritos e Questionários , Adulto JovemRESUMO
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.
Assuntos
Triagem Neonatal/psicologia , Triagem Neonatal/tendências , Pais/psicologia , Adulto , Atitude Frente a Saúde , Feminino , Testes Genéticos/ética , Testes Genéticos/métodos , Testes Genéticos/tendências , Humanos , Recém-Nascido , Consentimento Livre e Esclarecido , Masculino , Triagem Neonatal/ética , Triagem Neonatal/métodos , Seleção de Pacientes/ética , Análise de Sequência de DNARESUMO
For over a decade, the National Aeronautics and Space Administration (NASA) has tracked and configuration-managed approximately 30 risks that affect astronaut health and performance before, during and after spaceflight. The Human System Risk Board (HSRB) at NASA Johnson Space Center is responsible for setting the official risk posture for each of the human system risks and determining-based on evaluation of the available evidence-when that risk posture changes. The ultimate purpose of tracking and researching these risks is to find ways to reduce spaceflight-induced risk to astronauts. The adverse effects of spaceflight begin at launch and continue throughout the duration of the mission, and in some cases, across the lifetime of the astronaut. Historically, research has been conducted in individual risk "silos" to characterize risk, however, astronauts are exposed to all risks simultaneously. In January of 2020, the HSRB at NASA began assessing the potential value of causal diagramming as a tool to facilitate understanding of the complex causes and effects that contribute to spaceflight-induced human system risk. Causal diagrams in the form of directed acyclic graphs (DAGs) are used to provide HSRB stakeholders with a shared mental model of the causal flow of risk. While primarily improving communication among those stakeholders, DAGs also allow a composite risk network to be created that can be tracked and configuration managed. This paper outlines the HSRB's pilot process for this effort, the lessons learned, and future goals for data-driven risk management approaches.
RESUMO
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.
Assuntos
Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Triagem Neonatal , Pais/psicologia , Sequenciamento Completo do Genoma , Adulto , Confidencialidade , Feminino , Humanos , Recém-Nascido , Masculino , Triagem Neonatal/psicologia , Medição de Risco , Discriminação Social , Inquéritos e Questionários , Sequenciamento Completo do Genoma/estatística & dados numéricosRESUMO
The Tele-Lactation Pilot Project (TLPP), 1 of 13 community-based breastfeeding projects implemented in Indiana in 2013 using Centers for Disease Control and Prevention grant funds, explored the feasibility of using videoconferencing technology to provide breastfeeding education and support to low-income women by a centrally located International Board Certified Lactation Consultant (IBCLC). The IBCLC was housed at the Breastfeeding Center at the hospital where the women would deliver; the women receiving the education and support were located at an inner-city community health center (CHC) where they received their primary care. The videoconferencing sessions were juxtaposed with the women's regularly scheduled prenatal and postnatal visits at the CHC. After delivery, the lactation consultant visited the mother and infant in person at the hospital to offer additional support. Overall, 35 mothers were served by the TLPP during the 9-month project period. A total of 134 visits (30-45 minutes each) were conducted (3.8 sessions per woman). At the conclusion of the project, interviews with key participants indicated that the tele-lactation videoconferencing sessions were easy to implement, allowed the IBCLC to reach a wider client base, and allowed the women to receive expert support that they might not have otherwise received. Comments indicated that, in addition to providing education and increasing the women's confidence, the tele-lactation sessions appeared to have decreased the mothers' anxiety about the birthing process and the hospital experience. The TLPP demonstrated that incorporating videoconferencing technology into routine care can help foster collaboration among health care providers and provide mothers with continuous, easily accessible breastfeeding education and support.