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NIH Sep 12, 2019 | R01
Prenatal Preparation: Actions and Results
Institution: CASE WESTERN RESERVE UNIVERSITY
FOA Number: PA-17-444
Abstract
PROJECT NARRATIVE Preparation is often cited as a reason for offering and for accepting prenatal genetic screening and diagnosis. However, this term has no clear definition, and thus it is impossible either to prove benefit or to recommend best practices. By assessing the perspectives of stakeholders in prenatal genetic testing and building a conceptual model of preparation, this project will inform clinical practice and policy recommendations for prenatal testing, pre- and post-test counseling, parental decision-making, and support for families who continue a pregnancy with a genetic condition.
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
R01Project Number:
R01HG009668Start Date:
Sep 12, 2019End Date:
Jun 30, 2023PROJECT TERMS:
Advocacy, Advocate, Bioethics Consultants, Child, Clinical, Clinical Management, clinical practice, Clinical Research, Complement, Conflict (Psychology), Counseling, Data, Decision Making, Diagnosis, disability, Down Syndrome, Ethics, expectation, experience, Family, family support, fetal, follow-up, Genetic, Genetic Diseases, genetic disorder diagnosis, genetic information, Genetic Screening, genetic testing, Geographic Locations, Health, improved, Interview, Measures, Modeling, Motivation, Movement, Outcome, Parents, patient advocacy group, Patient Representative, Patients, Policies, Policy Developments, postnatal, Pre-Post Tests, Pregnancy, Pregnant Women, prenatal, Prenatal care, Prenatal Diagnosis, prenatal testing, Preparation, rare condition, Recommendation, Reporting, Research Personnel, Resources, Rest, Right to Life, Services, social, Social Behavior, Social support, socioeconomics, Support Groups, Termination of pregnancy, Testing, Uncertainty, Woman
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