A new article just published in theJournal of Pediatric Endocrinology and Metabolism makes a compelling case for getting rid of all medical terms based on the root “hermaphrodite.” The authors (including twoISNAstaff members and threeISNA Medical Advisory Board members) explain the problems with terms like “pseudo-hermaphroditism” and “true hermaphroditism.”

Why get rid of these terms? Because:

• These terms are stigmatizing to patients and their families. We should all be working to reduce stigma, not add to it through medical care.
• People with intersex are nothermaphrodites, and they are not helped by being labeled this way.
• These terms imply a kind of hierarchy of “real” and “fake” intersex people, which is unhelpful and illogical.
• These terms attract people with sexual fetishes and fantasies that, frankly, we as a patient advocacy organization are not interested in hearing from.
• The system of labeling intersex people according to the mere presence or absence of certain gonadal tissues (as the “pseudo/true hermaphroditism” system does) predates the modern sciences of genetics and endocrinology. It causes confusion among doctors and patients because it fails to reflect all that we now know matters.

The authors of theJPEM article suggest that new systems of intersex nomenclature and taxonomy be developed to completely replace the old “five sex” model. Specifically they suggest that the replacement taxonomic system:

• should enhance, not complicate, the use of medical informatics in research and clinical practice;
• should recognize that diagnosis and taxonomy inform, but do not determine, gender assignment and/or gender identity;
• should not include the words ‘hermaphrodite’, ‘hermaphroditism’, ‘sex reversal’, or other easily misunderstood terms;
• should label the condition rather than the person;
• should not confuse physicians and patients;
• should make clear that diagnosis does not simply dictate therapy.

The authors end by suggesting that it would be better to use specific etiology-based diagnoses (likeAIS, 5-alpha reductase deficiency, etc.) along with an umbrella term. Which umbrella term? In our travels in the last few months, we notice there seems to be an emerging consensus around usingdisorders of sex development, abbreviatedDSDs. This seems to be a term that doctors and many patient advocates can agree encompasses all of the conditions we atISNAhave traditionally labeledintersex.

For the full article, see:
DregerAD, Chase C, Sousa A, GruppusoPA, Frader, J. “Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale.”J Pediatric Endocrinol Metab. 2005 Aug: 18 (8): 729-33.

If your library doesn’t have this article readily available, request it through their interlibrary loan services. If you still can’t find it,contact us and ask for a copy.