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PURPOSE To provide descriptive and qualitative information about communication in young children with fragile X syndrome (FXS) and about how families react to and accommodate communication differences in their children. METHOD In-depth interviews were conducted with 55 mothers of young children with FXS. Interviewers asked mothers to describe their(More)
As the use of genomic technology has expanded in research and clinical settings, issues surrounding informed consent for genome and exome sequencing have surfaced. Despite the importance of informed consent, little is known about the specific challenges that professionals encounter when consenting patients or research participants for genomic sequencing. We(More)
OBJECTIVE Circumstances surrounding parental availability and decision-making were examined in the setting of a research protocol involving newborn screening (NBS) for fragile X syndrome, in which the institutional review board (IRB) had determined that consent (permission) was required from both parents. METHODS A survey was conducted with 3001 families(More)
OBJECTIVE As technology advances, newborn screening will be possible for conditions not screened today. With an expansion of screening, strategies will be needed to support family adaptation to unexpected and possibly uncertain genetic information provided shortly after birth. METHOD Although candidate conditions for expanded newborn screening will(More)
Background: We evaluated brief combination interventions to simultaneously reduce sexual and injection risks among female sex workers who inject drugs (FSW-IDUs) in Tijuana (TJ) and Ciudad Juarez (CJ) Mexico during 2008-2010, when harm reduction was expanding in TJ, but not CJ. Methods: FSW-IDUs ]18 years reporting recently sharing injection equipment and(More)
This study evaluates the psychometric properties and criterion validity of the Religious Social Support (RSS) Scale in a diverse, representative community sample of new mothers (N = 1,156). Results indicated that two factors best represented the RSS. Criterion validity was established by demonstrating that the RSS was associated with relational and health(More)
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