It was a big decision, and Kathy Giusti saved the conversations about it for quiet moments. A phone call catching up with her mother. A car ride with her children. A backyard party celebrating a high-school graduation.
Ms. Giusti wanted to discuss the complex, intimate and sometimes life-changing choice that many families will have to make in the coming years: whether to get your genes sequenced and then share the data.
Ms. Giusti, 56 years old, is a well-known cancer advocate and proponent of data sharing. She and her identical twin sister, Karen Andrews, founded the Multiple Myeloma Research Foundation in 1998, two years after Ms. Giusti was diagnosed with the disease, a rare and incurable cancer of the plasma cells.