Advocacy Issues: Sexuality.

Providing a quality life for a person with PWS has layers of complexity and ethical issues that are not easily resolved. The rights and responsibilities regarding sexuality will continue to require a combination of an open mind, common sense, and ongoing dialogue among parents, caregivers, and most importantly, the person with Prader-Willi syndrome. Perhaps the primary question remains: Who has the right to make these decisions? As with the general population, when considering the issue of sexuality for those with PWS, every parent, every caregiving agency, every ruling judge, and indeed, every culture and every involved person has a different opinion regarding what is fair and appropriate and correct. Ultimately the decision must hinge on "what is best" for the person with PWS. And, just as often, what is best may not be what is "wanted" by that person or easiest for those providing care. This chapter has dealt briefly with several dimensions of the sexuality issue: the need to recognize the facts and fictions surrounding our beliefs about sexuality and people with PWS; the increased risk for abuse associated with those with disabilities; and the complexity and challenges of supporting individuals with PWS in fulfillment of their hopes, dreams, and wishes. There are many ethical and legal questions surrounding the issue of healthy sexuality and sexual expression for those with PWS. Where care is shared between families and providers, both parties must come together with the individual to determine what makes sense for that person at a particular point in time. There are no easy or right or wrong answers-no simplifying blacks or whites—just shifting shades of gray. [ABSTRACT FROM AUTHOR]