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1.
J Law Biosci ; 8(2): lsab026, 2021.
Article in English | MEDLINE | ID: mdl-34457316

ABSTRACT

The introduction of behavioral, including psychiatric, genetic information in American courts has gained traction but raises concerns of undue influence on judicial outcomes. We conducted a vignette-based survey of a nationally representative sample of US adults to assess how evidence about a parent's psychiatric genetic makeup and explicit and implicit stigmatizing beliefs about psychiatric conditions may affect key decisions in child custody proceedings. Psychiatric genetic evidence did not affect public perspectives on custody decisions, but it increased the genetic essentialist understanding of psychiatric conditions (regardless of a diagnosis). Explicit stigma was associated with a preference to deny parents with a (or with an alleged) psychiatric condition joint custody. Our newly created Implicit Association Test identified an association between psychiatric conditions and perceived bad parenting. Research to identify effective interventions and educational programs to address genetic essentialism and to reduce bias against people, including parents, with psychiatric conditions is urgently needed.

2.
Genet Med ; 21(11): 2631-2638, 2019 11.
Article in English | MEDLINE | ID: mdl-31092907

ABSTRACT

PURPOSE: Despite ongoing efforts to increase diversity of cohorts in precision medicine research (PMR), little is known about the obstacles to inclusion of blind people and those with low vision ("the blind community") in PMR. The blind community comprises ~10% of the US adult population and its members commonly experience health disparities. Understanding barriers to inclusion of this community is necessary to facilitate their participation. METHODS: An online survey was developed in disability-accessible formats. Key questions included views on PMR; willingness to participate, provide data, and engage in the study; data sharing and consent; and perceived barriers to participation. Analyses describe results for all participants. RESULTS: Two hundred seventy-one blind/low-vision participants completed the survey. Participants expressed strong support for PMR, and willingness to participate in PMR, to provide lifestyle, biological and medical information, to engage with the study, and to have their data shared with other researchers. Preferences for data sharing and consent models varied. Significantly, 65% identified 3-6 barriers to participation, particularly inaccessible transportation, clinics, and facilities; inaccessible information; and attitudinal and institutional barriers. CONCLUSION: Removing the identified barriers is key. Measures that could increase inclusivity of blind people and those with low vision in PMR are suggested.


Subject(s)
Precision Medicine/methods , Visually Impaired Persons/psychology , Adult , Bias , Cultural Diversity , Female , Humans , Male , Middle Aged , Research Design/trends , Research Personnel , Surveys and Questionnaires
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