Prenatal genetic services: toward a national data base.

Abstract

The availability of prenatal genetic services in the US was assessed in a 1990-91 survey. Prenatal screening services are offered in 46 of 51 states, and 47 states have prenatal counseling and diagnostic services available. Comprehensive national and regional data collection and reporting for prenatal genetic services has been conducted by the Council of Regional Networks for Genetic Services (CORN) in cooperation with the 10 regional genetic services networks since 1985. The results of CORN data collection on prenatal genetic services in 1989 and 1990 are presented. A 60% participation rate was achieved in 1989 for the more than 400 reporting units. In 1990, 227 of the 302 prenatal-clinical genetic reporting units contacted (75%) were able to supply data. 135 (92%) of the 146 laboratory reporting units provided data. In 1989, data were collected on more than 124,000 prenatal patients, accounting for almost 303,000 individual prenatal clinical services, including counseling and medical procedures, such as ultrasonography, amniocentesis, and chorionic villus sampling. Almost 920,000 laboratory tests, including blood studies, amniotic fluid tests, and chorionic tissue tests were performed in 1989 by a laboratory of the reporting unit. The 1990 figures indicated 12-30% increased in patients and reported services. 73% of prenatal genetic patients were white; below the percentage of white women aged 15-54 years nationally. The percentages of patients of Asian Pacific Islander ancestry and of other races were higher than in the national figures for women of reproductive age. Advanced maternal age continued to be the leading reason for referral to prenatal genetic services, although the percentage has decreased from 1989 to 1990. The percentage of patients for whom indication for service was unknown more than tripled between 1989 and 1990. CORN has made significant progress toward the development of a national system of reporting genetic services.