ABSTRACT
The increasing availability of novel therapies highlights the importance of screening newborns for rare genetic disorders so that they may benefit from early therapy, when it is most likely to be effective. Pilot newborn screening (NBS) studies are a way to gather objective evidence about the feasibility and utility of screening, the accuracy of screening assays, and the incidence of disease. They are also an optimal way to evaluate the complex ethical, legal and social implications (ELSI) that accompany NBS expansion for disorders. ScreenPlus is a consented pilot NBS program that aims to enroll over 100,000 infants across New York City. The initial ScreenPlus panel includes 14 disorders and uses an analyte-based, multi-tiered screening platform in an effort to enhance screening accuracy. Infants who receive an abnormal result are referred to a ScreenPlus provider for confirmatory testing, management, and therapy as needed, along with longitudinal capture of outcome data. Participation in ScreenPlus requires parental consent, which is obtained in active and passive manners. Patient-facing documents are translated into the ten most common languages spoken at our nine pilot hospitals, all of which serve diverse communities. At the time of consent, parents are invited to receive a series of online surveys to capture their opinions about specific ELSI-related topics, such as NBS policy, residual dried blood spot retention, and the types of disorders that should be on NBS panels. ScreenPlus has developed a stakeholder-based, collective funding model that includes federal support in addition to funding from 14 advocacy and industry sponsors, all of which have a particular interest in NBS for at least one of the ScreenPlus disorders. Taken together, ScreenPlus is a model, multi-sponsored pilot NBS program that will provide critical data about NBS for a broad panel of disorders, while gathering key stakeholder opinions to help guide ethically sensitive decision-making about NBS expansion.
ABSTRACT
Bird-window collisions are the second leading cause of human-related avian mortality for songbirds in Canada. Our ability to accurately estimate the number of fatalities caused by window collisions is affected by several biases, including the removal of carcasses by scavengers prior to those carcasses being detected during surveys. We investigated the role of scavenger behavior in modifying perceived carcass removal rate while describing habitat-specific differences for the scavengers present in a relatively scavenger-depauperate island ecosystem. We used motion activated cameras to monitor the fate of hatchling chicken carcasses placed at building (under both windows and windowless walls) and forest (open and closed canopy) sites in western Newfoundland, Canada. We recorded the identity of scavengers, timing of events, and frequency of repeat scavenging at sites. Using 2 treatments, we also assessed how scavenging varied with 2 levels of carcass availability (daily versus every third day). Scavenger activities differed substantially between forest and building sites. Only common ravens (Corvus corax) removed carcasses at building sites, with 25 of 26 removals occurring under windows. Burying beetles (Nicrophorus spp.) dominated scavenging at forest sites (14 of 18 removals), completely removing carcasses from sight in under 24 hours. Availability had no effect on removal rate. These findings suggest that ravens look for carcasses near building windows, where bird-window collision fatalities create predictable food sources, but that this learning preceded the study. Such behavior resulted in highly heterogeneous scavenging rates at fine spatial scales indicating the need for careful consideration of carcass and camera placement when monitoring scavenger activity. Our observations of burying beetle activity indicate that future studies investigating bird collision mortality near forested habitats and with infrequent surveys, should consider local invertebrate community composition during survey design. The high incidence of invertebrate scavenging may compensate for the reduced vertebrate scavenger community of insular Newfoundland.
