News Release

Legal and ethical concerns over prenatal diagnosis

Prenatal diagnosis requests for Huntington’s disease when the father is at risk and does not want to know his genetic status: clinical, legal, and ethical viewpoints BMJ Volume 326, pp 331-3

Peer-Reviewed Publication

BMJ

Hospital genetics units occasionally receive requests from women for prenatal tests for Huntington's disease when their male partners are at risk but do not want to know their genetic status for the disease. In this week's BMJ, researchers discuss the legal and ethical concerns that these cases raise.

Cases like these pose considerable ethical and legal dilemmas for clinicians, write the authors. Does the right of the pregnant mother to know the status of her fetus outweigh the right of the father at risk to not know his genetic status?

In a clinical ethics consultation, the lawyer and ethicist presented the clinical team with their ideas on the subject and had the team reconsider its procedures in light of the different viewpoints.

The clinical team's preferred course of action was to test the male partner first, and, if he was found to have the mutation, to offer prenatal diagnosis. Alternatively, exclusion testing (testing to exclude the risk of the condition in the fetus) preserves the man's preference to not know his status for being at risk. Both these options involve the man in the decision making processes, thereby meeting his needs for information and emotional support.

Should clinicians breach confidentiality to directly determine the views of the man who is at risk? Under Australian law, decisions about prenatal testing can be made solely by the mother. The father's consent (or even knowledge) is not required because the law states that these are tests on her body, explain the authors.

The final decision of whether or not the test should be done is up to the judgement of clinicians; a court will not override their decision, regardless of the woman's wishes.

There is no easy answer to such requests, say the authors. The law in Australia and the United Kingdom may need to be reconsidered and perhaps clarified by legislation, while clinical teams need to deal with them on the basis of the individual circumstances.

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