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- Title
Actions and Uncertainty: How Prenatally Diagnosed Variants of Uncertain Significance Become Actionable.
- Authors
Werner‐Lin, Allison; Mccoyd, Judith L. M.; Bernhardt, Barbara A.
- Abstract
The development of genomic technologies has seemed almost magical. Excitement about it, both in medicine and among the public, stems from the belief that genomic techniques will illuminate the causes of health and disease, will lead to effective interventions for both rare and common genetic conditions, and will inform reproductive decision‐making. Novel diagnostic tools, however, are often deployed before targeted therapies are developed, tested, or available and before their psychosocial implications are explored. Newer technologies such as prenatal whole exome screening are seen as offering "decisional autonomy" to expectant parents, although such technologies identify information about genetic sequencing that may not have clear meaning. The "therapeutic gap" between the ability to conduct genetic sequencing and the ability to fully understand what the test results mean, much less what treatments to offer, leaves families with complex and unclear information they cannot act upon with confidence during pregnancy. In this essay, we will consider the psychosocial and ethical implications of such assumptions—and of the uncertain information produced by these technologies—for individuals and families and for societal aspects such as medical service usage and demographic inequities.
- Subjects
CHROMOSOME analysis; PSYCHOLOGICAL adaptation; ANXIETY; CONFIDENCE; GENETIC counseling; INFORMED consent (Medical law); LEARNING; PREGNANCY &; psychology; PRENATAL care; PRENATAL diagnosis; PSYCHOLOGY of Spouses; UNCERTAINTY; DECISION making in clinical medicine; MICROARRAY technology; FAMILY attitudes; PRENATAL bonding
- Publication
Hastings Center Report, 2019, Vol 49, pS61
- ISSN
0093-0334
- Publication type
Article
- DOI
10.1002/hast.1018