Banked Samples and HD Testing

From The Embassy of Good Science
Cases

Banked Samples and HD Testing

What is this about?

A woman brushes off her most recent diagnosis, Huntington disease (HD), and resists her doctor’s recommendations to tell her family about the diagnosis. By not disclosing this information to her family, they would not know that they might want to get tested for HD. Prior to diagnosis, the woman and her family provided genetic samples to a research database to investigate a genetic disease unrelated to HD. Since the database project required written consent for using samples in future research, the doctor wonders if he can run tests for HD on the stored samples that would include the materials of the woman and her family.

For whom is this important?