I’ve Inherited a Fatal Disease. Can I Tell My Sister’s Children About Their Risk?

February 8, 2020

Illustration by Tomi Um

Ethicist

I’ve Inherited a Fatal Disease. Can I Tell My Sister’s Children About Their Risk?

The magazine’s Ethicist columnist on overruling your sibling to tell her children about their genetic predisposition to a terminal illness and more.

By Kwame Anthony Appiah

I have been struck by a fatal disease, inherited from my father. I have children, who know they have a 50-50 chance of inheriting the disease from me.

I have several siblings. One has children of her own. She has so far refused to be tested on the off chance that she, too, has the gene. This means that her children don’t know anything about the cause of my disease. There are interventions that could protect any future grandchildren, but her children don’t know they are in danger of passing the disease along.

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I have been tempted to tell my sister’s children myself, but I know this would result in a major breach in our relationship (a real loss to me). What is my ethical responsibility here?

Read the Ethicist’s reply here.

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