Northern California's Experience

Abstract

Future plans involve continued expansion of cord blood screening in the Bay Area until no babies with hemoglobin diseases are missed. Modification of screening and trait follow-up procedures will continue as necessary to allow screening of increased numbers despite limitations in funding. To reduce the need for intensive trait follow-up by the center, we will continue to develop community resources. There must be more general public information about hemoglobin traits, more well-run prenatal testing and counseling programs, and continued education of health care professionals. It is also essential to assess the effect of hemoglobin trait notification on the involved families. A definitive trait follow-up study could help state public health departments design optimal screening programs that provide satisfactory trait follow-up without detrimental psychologic effects or prohibitive expense. Historical studies of the effects of trait screening at other times or in other ethnic groups for different diseases may not be applicable to our population. For example, in trait follow-up today, initial parental anxiety when notified of an abnormal blood test in the baby more often involves fear of acquired immunodeficiency syndrome than fear of sickle cell disease. Most people now can be reassured about the difference between trait and disease and about the fact that their baby with trait is healthy. Clearly, the level of public knowledge has increased since the early years of screening because of the sickle cell center's educational outreach as well as general exposure to information on television and in public school curricula. These impressions should be documented by studies to assess the levels of understanding and anxiety in families before and after counseling. In addition, information concerning the 17% of individuals who make appointments but never appear for counseling and the 28% who are not contacted by either telephone or mail would be useful. There is no way of knowing how many of these people simply do not need or want counseling, how many never receive the information, and how many avoid further contact because of inappropriate anxiety. Tracking these individuals would be a major undertaking, beyond the scope of current staffing, but an important future study.