Genetic Counseling and the Disabled: Feminism Examines the Stance of Those Who Stand at the Gate

Abstract

This essay examines the possible systematic bias against the disabled in the structure and practice of genetic counseling. Finding that the profession's "nondirective" imperative remains problematic, the authors recommend that methodology developed by feminist standpoint epistemology be used to incorporate the perspective of disabled individuals in genetic counselors' education and practice, thereby reforming society's view of the disabled and preventing possible negative effects of genetic counseling on the self-concept and material circumstance of disabled individuals.

Controlling sickle cell disease in Ghana ethics and options

“…Genetic counselors and others have expressed doubt about whether it is theoretically or practically possible to have non-directive counseling. The very nature or process of prenatal counseling, some argue, presupposes an implicit bias to abort selectively any fetus deemed “defective” [ 13 ].…”

“…How then can genetic counseling be non-directive and offer mothers’ free choice? The non-directiveness of genetic counseling is underlined by the fact that the very act of giving information on fetal defects and disabilities within a medical setting with abortion being offered as an alternative makes abortion itself a “live option” [ 13 ]. More often than not, pregnant women undergo these tests without being aware that they may opt out of it especially when obstetricians suggest prenatal testing as part of routine anternatal care.…”

“…It seemed as though every time I turned around another physician was asking me whether or not anyone had discussed my options with me”. “Options” has clearly become a euphemism for “abortion” [ 13 ]. It seems therefore that for many people, counseling itself offers a message.…”

Life in Three Deaths

“…In many obvious ways, the category of citizenship has been subjected to shifts in biological science and biotechnology, fields that directly attempt to understand and control life processes, including the coming into being of ongoing racist, eugenic, and genetic projects (including embryo selection, euthanasia debates, the Human Genome Project, genetic counseling, etc.) that actively aim to demarcate the healthy, competent, and desirable citizen (Dowbiggin, 1997;Ekberg, 2007;Gould, 1996;Kevles, 1995;Lemke, 2002;Patterson & Satz, 2002;Raz, 2009;Wendel-Hummell & Craig, 2009). This intersection between citizenship and the biological gives rise to the phenomenon of the biocitizen, or one whose citizenship is constituted as and through the biological (Rose & Novas, 2003).…”