Conveying the status of a female DMD carrier foetus - A dilemma

This case study discusses the question of whether or not the information that a female foetus is a carrier of Duchene Muscular Dystrophy (DMD) should be conveyed to expecting parents. As only a female foetus can be a carrier of DMD, conveying the information of its carrier status would effectively disclose the sex of the foetus, which is against the provisions of the Pre-conception and Pre-natal Diagnostic Techniques Act (PC-PNDT Act), 1994. The Act states that the gender of the foetus may not be conveyed except in those cases where the foetus (itself) has genetic or metabolic disorders, chromosomal abnormalities or congenital malformations including sex-linked disorders. Further, while the Medical Termination of Pregnancy Act (MTP Act) permits termination of foetuses with certain abnormalities or diseases, it does not permit termination of a foetus with carrier status of a disease. We suggest that suitable modifications may be made to the PC-PNDT Act as also to the MTP Act.