TY  - JOUR
AU  - Löwy, Ilana
AU  - Paul, Diane B.
PY  - 2018
DA  - 2018/06/12
TI  - On Objectivity in Prenatal Genetic Care
JO  - OBM Genetics
SP  - 022
VL  - 02
IS  - 02
AB  - We address an ongoing controversy over what health-care providers tell prospective parents about Down Syndrome (DS). In the view of critics, including many parent, disability-rights, and anti-abortion activists, the messages that health-care professionals transmit to pregnant women and their partners are distorted. OB-GYNs, primary-care providers, clinical geneticists, midwives and other medical professionals generally believe that the quality of life for individuals with DS and their families is poor. The critics maintain that, on the contrary, those with personal experience of DS are almost always satisfied with their lives. They believe that providers’ biases, directly or indirectly communicated to prospective parents, explain high rates of pregnancy termination for DS. If the information were unbiased, the argument goes, these rates would fall.
Objectivity in this context is assumed to mean the provision of information by those with experiential knowledge, who know what it is like to live with a particular condition. In practice, that means information prepared by organizations that advocate on behalf of affected individuals and their parents. But we argue that there is reason to be skeptical of the assumption that substituting the perspective of advocacy groups for those of medical professionals will realize the goal of achieving objectivity in prenatal care, and we suggest alternative strategies aimed at more effectively advancing that cause.
SN  - 2577-5790
UR  - https://doi.org/10.21926/obm.genet.1802022
DO  - 10.21926/obm.genet.1802022
ID  - Löwy2018
ER  -