Ethical Challenges in Information Disclosure and Decision-making in Prenatal Testing: A Focus Group Study of Chinese Health Professionals in Maternal and Child Health Services.

Abstract

The international community has proposed a comprehensive strategy to prevent congenital abnormalities. And China, with a high incidence of congenital diseases, has implemented measures including prenatal screening and diagnosis to reduce the morbidity of congenital abnormalities. However, ethical challenges arise in the practice of prenatal screening and diagnosis among healthcare professionals. Five focus group discussions were conducted with twenty-four health professionals working in maternal and child health services in Hunan Province, China, to explore the ethical challenges they encountered in prenatal testing decision-making and information disclosure practices, as well as their views on these challenges. Participants were selected through purposive sampling, ensuring maximum demographic diversity. Three main themes were identified: 1) balancing between information disclosure and privacy protection; 2) patient-oriented decision-making and tensions within family-oriented decision-making; 3) the disparity between the limited help clinical ethics committees (CECs) can provide and professionals' need for CECs. Ethical norms for information disclosure and autonomous decision-making within prenatal screening and diagnostic institutions must be established. Utilizing CECs is crucial to guide professionals in delivering prenatal testing services while simultaneously focusing on targeted improvement of communication skills among these professionals.