Do I have the right to waive genetic information?

Patients have the right to waive genetic information or to determine the scope of
communication of these findings themselves. As genetic diagnoses can also cause psychological
distress, patients have two basic options for
notification of genetic findings: Either notification of all
genetic analysis results or selected notification of genetic results relevant to
treatment (SOD1 for treatment with Tofersen; FUS mutations for the
ongoing clinical trial in FUS-ALS). A German study on the preferences of ALS patients showed that almost half (48.8%) opted for limited notification of genetic
findings, particularly with a focus on mutations that open up a treatment option.