Refusing to provide a prenatal test: can it ever be ethical?

Delatycki seems to suggest that testing is offered to those parents who have yet to make a decision as to whether or not to go through with the pregnancy.¹ In this situation, however, if the test is negative and the parents subsequently choose to have the baby, has not the child suffered the same breach of rights and confidentiality even though the result itself is negative? Surely the ethical implication is the same.

This makes the idea of judging the relative autonomy of parents versus the autonomy of the child seem rather beside the point. In a system where we have given parents the precedence to decide on the right of the child to exist, it is unrealistic, as Duncan and Foddy have suggested,¹ to set terms on their decision. Despite the breach of the child's rights, this is not where the ethical difficulty stems from—this is no different from other situations when we as a profession have to decide on the ascendancy of rights, such as the rights of the patient versus public interest. Instead, what Delatycki is suggesting is that we provide this test only in cases where it validates the medical profession by allowing it to take further action in the lives of the parents and future family. Where our medical knowledge is powerless to intervene or prevent the inevitability of Huntington's disease, then the knowledge of the possibility of that disease is categorised as potentially harmful and therefore irrelevant to the parents.

This goes a bit further than mere paternalism or abuse of power. It reveals the darker side of medical assumption. The offering of the test is being on the argument that the medical profession has the right to control not just the immediate clinical scenario but the disease entity and its psychosocial impact. Duncan and Foddy cannot entirely avoid this either. Both sides refer to research on the psychological implications, whether for or against testing. This underestimates the value that should be placed on parents themselves having the right to determine how these factors inform their decisions. Knowledge is in our power to divulge, and it is not necessarily up to the profession to define all of its wider impact.