It is a good idea for parents of children with DSDs or intersex conditions to keep a copy of their children’s medical records. Also, some adults with intersex conditions or DSDs want to see their records so they can understand more about their childhood treatment. However, some people have reported difficulty in obtaining medical records when the patient has an intersex condition or DSD.
In the past it was common to keep information about diagnosis or treatment secret from the patient and sometimes from the parents. Some medical providers may be unaware of new ethical and legal standards that require sharing of information with patients and their representatives.
For more information, see AIC’s pamphlet Questions & Answers About Medical Privacy Rights For Parents of Children with DSDs or Intersex Conditions.