The low utilization of curative strategies for SCD appears to be partly attributable to a lack of information about the technologies available to facilitate transplantation. Ethical reservations, while present, were not static and did not preclude patients' and parents' desire to be informed. We discuss the implications of these perceived barriers to the dissemination of advanced medical technologies for SCD.

Crediting scientific discovery for prolonging life is pervasive in biomedical histories of the genetic blood disorder, sickle cell disease. This includes the preventive strategies, such as newborn screening, that have underwritten the success of its life-extending interventions. Newborn screening is a technology that relies not only upon intact health infrastructures but also expertise and enhanced vigilance on the part of caregivers to anticipate complications while they are still open to circumvention. This paper posits that even after overcoming institutional barriers to make newborn screening equitably available, care and vigilance are resources that are themselves subject to what i term anticipatory politics, where structural conditions also stratify expectations for the future, including the affective appeal of medical innovations. This paper elaborates the paradigm of anticipatory politics through an ethnographic examination of newborn screening to connect the comprehensive care practices that have improved survival for sickle cell disease, and as the burden of mortality shifts to young adulthood, to expose how those who are resourced to care for these futures preferentially stand to benefit from preventive interventions.

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4536 Background Allogeneic hematopoietic cell transplantation (HCT) is the only proven cure for pediatric patients with sickle cell disease (SCD). Because rates of disease-free survival are highest with human-leukocyte-antigen-(HLA)-matched siblings, the paucity of suitable donors has limited its use. Hundreds of cases of HLA-matched embryo selection have been reported using in-vitro fertilization (IVF) combined with pre-implantation genetic diagnosis (PGD) for diseases that are significantly less prevalent than SCD. Despite the wide availability of these procedures, few families of children with SCD have undergone IVF and PGD for HCT purposes. Objective To elicit SCD patient and caregiver understandings of SCD, IVF, PGD, and HCT, including their opinions on using these technologies to produce genetically ideal HCT donors for existing children with SCD. Methods Adult patients and parents of children with the Hb-SS genetic variant of SCD were recruited from outpatient pediatric hematology clinics and the pediatric inpatient unit of a New York City hospital. Participants first completed a questionnaire and received written information on IVF, PGD, and HCT. A 40-minute, semi-structured interview was conducted at a following appointment. Individual interviews were recorded, transcribed, and analyzed using qualitative methods with three independent coders. Results To date, 23 participants have completed the interview process. In this ethnically diverse sample, 14 participants had Medicaid, 5 had Medicare, 3 had private medical insurance, and 1 had no insurance. 7 participants were unaware of HCT as a potential cure for pediatric SCD, and 17 did not realize IVF and PGD could be combined to prevent SCD before pregnancy. Only 2 had heard of IVF/PGD being used to select HLA-matched embryos for potential HCT of an existing child with SCD. After receiving basic information, the participants unanimously supported discussing them to all SCD families as a potential cure of SCD. As anticipated, a significant minority (6) of participants expressed strong ethical, religious, and/or moral misgivings about undergoing IVF/PGD for HCT purposes and stated that, if offered, they would likely decline the procedures. However, the majority of participants (17) concluded that, while the rights of the donor child should be considered, the potential to perform curative HCT for a child with SCD would justify their decision to undergo IVF and PGD. Regardless of their position, all participants identified the primary barrier to accessing IVF and PGD as financial. Interestingly, preliminary data analysis suggests that the procedures would increase in acceptability if IVF and PGD were made financially accessible via medical insurance coverage. Conclusions The selection and implantation of HLA-matched embryos for the purpose of collecting ideal umbilical cord blood for HCT has engendered worldwide debate. However, these discussions rarely incorporate the perspectives of those who would directly benefit from these procedures: people who suffer from diseases curable by HCT or have children who do. Though our single-institution study was limited by our reliance on hypothetical scenarios to elicit participants' opinions, our interviews voiced the attitudes that 23 SCD patients or their families had about IVF, PGD, and HCT. As anticipated, opinions were divided. Yet, regardless of their beliefs, the sample unanimously claimed that lack of awareness and high cost are the two fundamental barriers that patients and families affected by SCD face to accessing these procedures. These findings suggest not only that medical professionals have neglected to adequately educate the SCD population about available treatment options, but that medical insurance has failed to provide adequate coverage for preventive procedures and curative therapies for SCD patients. Only through increased patient education and more comprehensive medical insurance can SCD families make informed decisions that could impact the prognosis of their, or their children's, disease. Disclosures: No relevant conflicts of interest to declare.

Convention Relating to the Status of Refugees-as somebody who, "owing to a well-founded fear of being persecuted for reasons of race, religion, nationality, membership in a particular social group, or political opinion, is outside the country of his nationality, and is unable to or, owing to such fear, is unwilling to avail himself of the protection of that country." 1 Recent estimates suggest that there are approximately 50 million displaced persons worldwide, including internally displaced persons (who have not crossed international borders) and refugees. 2 Health care professionals engage with these populations in numerous ways, ranging from personal, clinical encounters with refugee patients to participation in international medical interventions. Good intentions and sound medical knowledge, however, are not sufficient to provide the health care required by this community of patients. With their history of displacement, persecution, fragmentation of cultural and familial structures, and violation of human rights, displaced persons have a more complicated biopsychosocial profile than most patients in the United States. 3 By becoming more aware of the various issues that affect members of displaced communities, health care providers may become better at confronting their acute and long-term health problems. Furthermore, the health care issues that apply to these populations may also apply to others who do not exactly fit the United Nations definition. Illegal residents or immigrants, those who have been internally displaced, and asylees who do not yet have official refugee status, for example, may benefit from the approaches and perspectives described for refugees. This issue of MS JAMA examines the special problems faced by refugees and displaced persons. Richard Mollica provides a model for how to incorporate the patient's trauma story into the primary care medical interview, so that this essential part of this story is not missed. Health care professionals must take into account the complicated perspectives of culture, human rights, and the ethical problems of international intervention. Stevan Weine proposes a more active engagement with the ramifications of culture in health care interventions, particularly as it pertains to the patient's family and local physicians. Alejandro Moreno and colleagues review the epidemiology of human rights violations in displaced populations and suggest how these might be addressed through the education of physicians and an awareness of human rights violations in the clinical encounter. Gina Jae interviews Philip Gourevitch, the author of We Wish to Inform You That Tomorrow We Will Be Killed With Our Families, a powerful and critical analysis of the genocide and refugee crises in Rwanda in 1994. Ferid Agani examines the mental health system of Kosova after the war and NATO interventions of 1999, focusing on the importance of recognizing local institutions in the rebuilding that goes on after such crises.

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