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Fetal screening and selection (FSS) services offered in the context of prenatal care have been criticized for decades. One important objection has charged that the utilization of FSS expresses disparagement toward the lives, value, and experiences of people with disabilities. Critiques of this expressivist objection to FSS attempt to challenge the interpretability of FSS decisions, or emphasize the importance of autonomy in defending FSS services against concerns about social injustice. The following discussion of sociomedical research demonstrates that FSS practices are too often derivative of inaccurate and disparaging models of disability and disability experience. A disregard for the disability experience and sustained ignorance of disability issues are evident in medical attitudes, practice, education, and research. Thus, critiques of the expressivist objection do not hold up when examined in the context of actual practices.
Acknowledgments
This work was prepared for partial completion of the Donnelley Family Disability Ethics Scholars program at the Rehabilitation Institute of Chicago. Great thanks are owed to the staff and educators of that program for the work that they do in highlighting the ethical conflicts inherent to the relationship between medical and disability communities generally, and in providing a context for engaging those topics with nuance, patience and sensitivity. I offer a special thank you to Kristi L. Kirschner, MD, Debjani Mukherjee, PhD, Tod Chambers, PhD, Teresa Savage, PhD, RN, Brian G. Skotko, MD, MPP, and Cecelia Roscigno, PhD, RN, CNRN, for their substantive comments and suggestions on the content and scope of this and earlier versions of the project. Finally, I thank Carole Klein-Alexander, MALS, MBA; Elizabeth Zalman, BA; Jessica Cambry, BA; Elizabeth Lenaghan, PhD; and Harvey Wolf, DDS, MPH, for their editorial comments on construction and technical aspects of earlier drafts. The ideas and opinions expressed here are not necessarily held by these editors; the responsibility for any shortcomings in the research, argument, or writing belongs to the author alone. A previous form of this work was submitted for and awarded the 2010 Sarah Baskin Award for Excellence in Research in the Clinician/Clinician Researcher category by the Rehabilitation Institute of Chicago. This project was not funded and presents no conflicts of interest.