In Duchenne dystrophy, for example, the insurer will likely learn of the disorder anyway. Reich says she doesn't release such information without the written permission of the client or parent. Then there's the matter of privacy within a medical institution. You really can't guard against people finding out things you don't want them to know. At this time, there are no federal regulations that offer certain, comprehensive medical privacy.
State laws vary.
An Individual Decision Pam Rhatigan says she doesn't know exactly what she'd have done 19 years ago if she'd had all the information about her disorder that's available today. She does believe that all decisions surrounding genetic testing and childbearing are highly individual and depend on more than the sum of the information presented. I don't think there's any right or wrong decision, no matter what the situation is. Among the factors in her own decision were her recently completed doctorate in clinical psychology, her husband's profession as an engineer, a stable home and income, and strong religious faith. Probably a lot of our decision was also based on faith.