[Avodah] NYT Ethicist

[Rich, Joel]

NYT Ethicist - What would halacha be?

Q.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.

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? Name Withheld

A. ... The trouble isn't that your sister refuses to be tested. That's
her choice. ... The trouble is that she wants to prevent her children from
knowing what she already knows. By keeping them in the dark, she's robbing
them of the ability to make their own choices. And here's a critical
point. Even if they declined to be tested themselves, simply knowing
that they're at risk would enable them to protect any children they might
have in the future, through "nondisclosure testing." Clinics can conduct
pre¬implantation embryo screening without sharing the results with the
at-risk parent... Preserving your own uncertainty is defensible; putting
others in jeopardy is not... As painful as a breach in your relationship
with your sister would be, it's clear that your sister's misguided plan is
itself weighing heavily on you. Urge her to level with her children about
the facts. (She could implore them not to tell her if they are tested
and get a positive result.) Were she still to refuse, tell them yourself.

KT
Joel Rich