The right to genetic ignorance

People should be free to choose whether to be informed about risk factors in their genomes, or those of their children

THE age of genomic medicine is dawning. Whole-genome sequencing is starting to transform the diagnosis of rare inherited diseases, and within a few decades it could be a routine part of medical care (see "Your genomic future: Personalised medicine is here ").

But an ethical row has broken out on this new frontier. In June, the American College of Medical Genetics and Genomics published guidelines arguing that people having their genome sequenced should be informed if the results show defects in any of 56 genes linked to 24 serious diseases (Genetics in Medicine, vol 15, p 565).

The idea is to flag up known risks that could be mitigated ? although in some cases that could require drastic action. The list includes mutations in the BRCA1 gene that earlier this year prompted movie star Angelina Jolie to have a double mastectomy to reduce her risk of developing breast cancer.

The intentions are laudable, but routine disclosure may not always be welcome. Imagine that you are seeking the cause of a mysterious condition that has brought your child to death's door. Do you want to worry about other potential problems that may not pose a risk until later in life? And if there are unwelcome surprises, you and other relatives may carry the same defects. Do you want to be burdened with that knowledge?

Experience so far suggests that most people will opt to learn everything that a sequence has to say. But if, after counselling, a family decides there are some risks they would rather not explore, should they not have that right? That's why the guidelines have kicked off a storm, and why some clinics are instead giving families extensive genetic counselling to help them decide what information to request.

The authors of the guidelines counter that lengthy counselling will be impractical once sequencing goes mainstream. They also argue that the guidelines are little different to standard practice in radiology ? where a shadow on an X-ray that might be a tumour would always be reported to the patient.

Maybe so, but genome sequencing is not yet standard. It seems premature to do anything other than provide people with the knowledge to make informed choices, and then respect their decisions.

This article appeared in print under the headline "The right to ignorance"

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