[SCD-FORUM] 134E Genetic testing Dr. Schwartz

[SCD Symposium]

My view is that the rules should be changed. Once we identify someone with
an LQTS disease-causing mutation that implies - unless we are dealing with
a de novo mutation - that other relatives (probably 50% of the siblings
with their descendants) will be affected. To prevent the communication
means that people at risk for sudden death (either as a direct evolution of
LQTS or because the patients receive even non cardiovascular QT prolonging
drugs) are not placed in a postion to avoid their death. This should be
regarded as a criminal act, and not part of the right to privacy. Some
proper action should be prepared by our scientific community providing the
evidence to the legislators that withholding this information may cause
many deaths. I don't think that we should remain passive when we know that
information exists that could save the life of several individuals and that
this vital information is denied to innocent people simply because a
relative decides in this way. I find it incredible that soemone considers
more important the so-called privacy of some single person than the life of
many individuals. Just talk to the parents of children who died suddenly
because an uncle decided to keep the information on the disease for
himself!
Some discussion on this point would be useful.
Peter J. Schwartz