Document Type

Article

Publication Date

2009

Abstract

The twenty-fifth anniversary of the Baby Doe Rules offers a valuable opportunity to reflect on how much has changed during the past two-and-one-half decades and how much has stayed the same, at least in situations when parents and physicians face the birth of an infant who comes into the world with its life in peril.

The most salient changes are the medical advances in the treatment of premature infants and the changes in social attitudes towards and legal protections for people with disabilities. The threshold at which a prematurely delivered infant is considered viable has advanced steadily earlier into pregnancy, and the interventions developed to ameliorate the effects of premature delivery have become more — but not fully — effective, as discussed by other symposium participants. During the same period, Congress passed the Americans with Disabilities Act (ADA), providing individuals with disabilities with broad protection against discrimination, and it recently reaffirmed its intent that the ADA be broadly construed in the ADA Amendments Act of 2008. Despite the advances in medical treatment and in legal protections for and societal attitudes regarding people with disabilities, however, the law regarding treatment decisions for newborns with disabilities has remained remarkably static.

Changes in the past twenty-five years in neonatal medicine and in the legal and social discourse regarding disability have led to increased complexity in teasing out how medical treatment choices at the beginning of life implicate disability concerns. This Essay describes that increased complexity and how it relates to the disability concerns that originally prompted the enactment of the Baby Doe Rules. It will then proceed to suggest how analogizing these decisions to rescue situations might inform our thinking about how to give disability concerns their due. The Essay will close by suggesting that a richer conception of the Baby Doe Rules as part of child welfare law may help us situate a role that disability advocacy might play in influencing-if not controlling-how these complex situations unfold. The Essay's purpose is not to provide answers the questions that vex medical providers about the legal limits on parental and provider decision-making, but simply to offer a perspective on the nature of the questions we should ask.

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