stigma, vulnerable population, abortion, value conflicts, congenital disorders, qualitative interviews, clinicians
Congenital disorders, or birth defects, are conditions present at birth that can lead to mild or severe disabilities or death.2 In Southeast Asia, approximately 8 million infants are born with these conditions annually, and approximately 90,000 related deaths occur.3 Whether to abort a fetus with a congenital disorder is a decision with many ethical dimensions, requiring discussion between clinicians, pregnant people, and, sometimes, their families.
The diagnosis of severe birth defects (e.g., neural tube defects, anencephaly) generally require that a health professional explain the diagnosis to parents and provide medical advice about potentially terminating the pregnancy. For birth defects in which the severity is unclear, such cases could raise conflicts for both clinicians and patients as they navigate these diagnoses. Moral beliefs may differ between health professionals and the affected families.
A researcher designed a qualitative interview study to assess the associated attitudes and experiences of health professionals who work in genetic counseling and are involved in the diagnosis and treatment of birth defects, as well as in related health care services. Five questions were included in the interview guide: 1) If a fetus is detected to have a birth defect, under what conditions should the child be birthed or aborted? 2) Who should decide whether a fetus with a birth defect is birthed or aborted? 3) In actual cases, who makes the final decision, and how are such decisions made? 4) What is your general attitude toward birth defects? and 5) How would you explain birth defects to a pregnant woman and her family members?
Preliminary results indicated that the severity of a congenital disorder was a primary consideration for health professionals considering whether to recommend birthing or aborting a fetus. Other influential factors included a family’s economic circumstances as related to not only health outcomes but also the availability and consumption of health care resources.
The study also indicated that other factors play a role, such as personal values, social context, and cultural norms. Health professionals based in primary care centers tended to offer explicit advice to families, whereas specialists at maternal and child health care centers tended to provide medical information instead of specific advice. Some professionals considered it necessary for only a pregnant person and their spouse to be consulted, but others left the decision to the family (i.e., the parents of the mother as well as any other relatives close to the affected couple). On the occasion where families had dissenting decisions, health professionals were unclear on what to do.
Questions
When conducting research on a sensitive topic addressing the personal beliefs of health professionals, how can the privacy of interviewees be protected so as not to raise any adverse workplace consequences for research participants?
Given these preliminary results, what additional questions seem appropriate regarding the ethical training and decision-making of health professionals? Is it ethically appropriate to inquire as to whether health professionals are making counseling decisions based on personal perspectives, local norms, or cultural factors? What might be the repercussions of such an inquiry?
As preliminary data indicate variations in health professionals’ willingness to offer direct guidance on abortion depending on whether they work in primary care centers versus maternal and child health care centers, what should be done with these findings? Is it ethical to share such data publicly? Might it adversely affect interviewees and their willingness to participate in future surveys? Under what conditions would it be ethically appropriate to share this information?
Note
1. This case study was developed with support from the National Institutes of Health Fogarty International Center Masters Level Bioethics Program at Central South University in Changsha, China under award number R25 TW007700 and the Major Scientific and Technological Projects for Collaborative Prevention and Control of Birth Defects in Hunan Province (2019SK1010, 2019SK1011). The content does not represent the views of the funding organizations.
