This is OII-UK’s latest position on medical privacy, from the statement published on the original OII website.
OII’s policy concerning intersex, medical diagnoses and health information.
OII is very sensitive to the individual’s right to privacy concerning medical information and does not require any release of medical information or any diagnosis to be a member of our support groups. OII members are instructed not to ask for a medical diagnosis from any member, leaving each member free to volunteer such information and share that information with others as they feel fit. There are many reasons for this.
- Intersex is a sensitive issue and many people may wish to have support without sharing private information about their bodies and medical histories.
- Many intersex people do not have an actual medical diagnosis because many intersex people are born with intersex variations for which there are no current explanations or diagnoses.
- Some intersex people do not have a medical diagnosis because many intersex people were raised in ignorance without medical disclosure about their variation, with signs of their variation having been re-engineered and their medical records destroyed before adulthood.
- Many people do not have the money to pay for the tests involved to get an accurate diagnosis.
- OII does not consider intersex an illness and therefore no diagnosis is needed.
- OII considers intersex to be anyone who is born with a body that is not considered typical according to the norms in effect for standard male or female.
Also, OII considers it unethical, especially for those who are medical experts or employed within medical institutions to speak about diagnoses of the members of this group without their consent. Speaking about the diagnoses of people on OII’s board without access to personal medical records and/or their consent is not only unethical, it is a violation of their right to privacy of medical information, especially when such information is disseminated by medical experts and other staff of medical institutions.