Prader-Willi Syndrome: the ethics and legality of treatment

A central characteristic ofpeople with PraderWilli Syndrome (PWS) is an apparent insatiable appetite leading to severe overeating and the potentialfor marked obesity and associated serious health problems and premature death. This behaviour may be due to the effects of the genetic defect resultingfrom the chromosome 15 abnormalities associated with the syndrome. We examine the ethical and legal dilemmas that can arise in the care ofpeople with PWS. A tension exists between a genetic deterministic perspective and that of individual choice. We conclude that the determination of the capacity of a person with PWS to make decisions about hislher eating behaviour and to control that behaviour is of particular importance in resolving this dilemma. If the person is found to lack capacity, the common law principles of acting in a person's "best interests" using the "least restrictive alternative" may be helpful. Allowing serious weight gain in the absence of careful consideration of these issues is an abdication of