Analysis And Comment Ethical debate

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

BMJ 2006; 333 doi: http://dx.doi.org/10.1136/bmj.38950.645799.55 (Published 16 November 2006) Cite this as: BMJ 2006;333:1066
  1. Rony E Duncan, research officer1,
  2. Bennett Foddy, PhD candidate2,
  3. Martin B Delatycki, director3
  1. 1Centre for Adolescent Health, Murdoch Children's Research Institute, Royal Children's Hospital, Parkville, Vic 3052, Australia
  2. 2Ethics Unit, Murdoch Children's Research Institute, Royal Children's Hospital
  3. 3Bruce Lefroy Centre for Genetic Health Research, Murdoch Children’s Research Institute, Royal Children’s Hospital
  1. Correspondence to: M Delatycki martin.delatycki{at}ghsv.org.au
  • Accepted 17 August 2006

A couple in which the man carries the mutation for Huntington's disease request prenatal testing during their first pregnancy. Though they would not terminate an affected pregnancy, they would like the information. There is no treatment available that can change the course of the disease so the diagnosis will not result in medical benefit for the child

Introduction

Huntington's disease is an autosomal dominant lethal neurodegenerative disorder, with a mean age of onset of 37 years.1 There is no treatment that modifies the natural course of the disease. Prenatal genetic testing can raise difficult ethical issues for clinicians.

The International Huntington Association and the World Federation of Neurology have published guidelines on the provision of predictive genetic testing for Huntington's disease.2 Two aspects of these guidelines are relevant. Firstly, recommendation 2.1 states that “the test is available only to individuals who have reached the age of majority.” This stance is echoed in guidelines published by human genetics societies internationally.3 4 Secondly, recommendation 7.2 states that “the couple requesting antenatal testing must be clearly informed that if they intend to complete the pregnancy if the fetus is a carrier of the gene defect, there is no valid reason for performing the test.”

Here we present two opposing professional views about the ethics of the courses of action available in this case.

Not to test

In about 95% of cases the onset of Huntington's disease is in adulthood.1 All major human genetic societies recommend against testing minors for genetic disorders that have their onset in adulthood and for which no preventive treatment exists.3 4The recommendation is based on two principles. Firstly, individuals should be able to make an autonomous decision about whether or not to have predictive testing at a time when they are intellectually and emotionally capable of making …

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