Dear Editor,

As a member of the International Consensus Conference on Intersex, and an affected adult, I supported the new nomenclature, which replaces both "intersex" and "hermaphrodite" with "disorders of sex development" (DSDs). But it would be a mistake to consider "DSD" to be a synonym for either "intersex" or "hermaphrodite."

Medical management of intersex has been treated as if it were utterly different from other areas of medicine and, as a result, has lagged behind while other areas have benefited from advances in ethics and in the use of evidence. The Consensus Statement is a welcome first step in bringing the treatment of conditions affecting sex development into conformity with the rest of medical practice.

The older terms "intersex" and "hermaphrodite" clearly label the whole person, not a medical condition that the person has. Awkward constructions like "hermaphroditism" and "intersex conditions" are attempts to circumvent this problem Further, the older terms imply a gender identity, and often one that contradicts the patient's actual gender identity.

"Disorders of sex development" is not a synonym for the older terms: it refers to the underlying physiology that causes the atypical sex anatomy. With the new nomenclature, a patient with, for example, partial Androgen Insensitivity Syndrome will not be labeled *a* male pseudo-hermaphrodite, nor *an* intersexual. Rather, the patient *has* an endocrine disorder, one of the endocrine disorders that affects sex development. Some individuals with this genetic disorder have male gender identity, some female, and indeed some have a more complex and less common gender identity. Precisely because of the broad range of possible identities, and because people do not experience their gender identity as a disorder, it is imperative that the nomenclature for the underlying cause of the atypical sex anatomy *not* imply any gender identity.

"Disorder" is a word commonly used in medicine. The causes of atypical sex anatomy include genetic disorders and endocrine disorders. Use of the word "disorder" in the new nomenclature makes clear that DSDs are similar in many ways to other, more familiar disorders.

That is, the principles of medical ethics must apply. For example:

* Deceiving or misleading a patient about her condition is not acceptable;

* The importance of using evidence to determine interventions applies (e.g. the performance of surgery based on a "belief" is not acceptable);

* DSDs are conditions that the patient will live with during [throughout] their entire lives.

* Medicine can help, but no intervention (including appearance altering surgeries during infancy) will eliminate the condition.

A euphemism like "variation" would fail to make these implications clear, and would allow the single-minded focus on gender to the exclusion of other health issues and the need for psychosocial support to continue.

Dear Editor,

The Consortium on Disorders of Sex Development (“DSD Consortium”) has recommended that in venues where the medical care of infants is considered, the term "Disorders of Sex Development" and the initialism “DSD” be used in favor of the term “intersex.” While both “DSD” and “intersex” are “umbrella” terms (meaning that they encompass people born with a variety of discrete conditions but having important features in common), the former has recently been adopted to aid in classifying conditions involving sex development. Prior to the adoption of “DSD” as the preferred term, there was apparently some confusion about whether certain medical conditions properly fell under the heading of “intersex.” The Consortium's avowed aim in preferring “DSD” is to support improved medical care for children born with such conditions. To that end it has produced two publications entitled Clinical Guidelines For The Management of Disorders of Sex Development In Childhood and Handbook for Parents, both of which employ “DSD” nomenclature almost exclusively.

A large and diverse number of adults treated for these same conditions have spearheaded this movement for improved care. They are committed to an open, honest and productive dialog between the medical community on the one hand, and patients and their families on the other. Many if not most of these adults have adopted, and prefer to continue to identify with, the term “intersex” as a way of classifying their conditions and to speak about their bodies and their experiences. They find the word “intersex” empowering because it provides a sense of community and allows people with many different conditions to band together to work toward better medical care and social justice.

There is a splendid and powerful array of narrative and poetry, prose and biography, and websites and scholarly publications which reflect the many facets of what it is like for individuals to be born and raised, and now living, as intersex individuals. Many of these works have been incorporated into compelling anthologies which have resulted in a long overdue voice for the silenced, a point of entry into the experience for the non-intersex world, and a shift in the medical care of children born with such conditions. Some of these writings may seem frank, raw and perhaps even bitter, no doubt in part because in the past there was less appreciation by the medical community of the psychological needs of intersex patients. These works remain relevant for the current generation of children and their parents who are confronting the challenging issues described in the Parents Handbook.

It would be a mistake to to advocate that “intersex” be replaced with “DSD” within such community, in the same way that people with a variety of different conditions identify themselves using terms which may vary from the terms employed by their health care providers. For example, instead of using a diagnosis such as “achondroplasia,” many individuals with such conditions have banded together using the term “Little People” because it reflects their history, culture, and real-life experience.

It would also be regrettable if the term "Disorder of Sex Development" were to be adopted even in a clinical setting for other than an interim period until a more appropriate term is adopted. DSD embraces the notion that morphology trumps identity, and that intersex is a pathology. It is not mere political correctness which compels a change from "Disorder" to "Variation" as proposed by Dr. Diamond and Professor Beh. Instead, such change is a beginning point in having medicine reorient its thinking about the validity and acceptability of intersex bodies in their natural state.

It is equally important that as we look forward, intersex support and advocacy groups don’t abandon the term “intersex” even as they may work in tandem with the medical community to adopt a new nomenclature. "Intersex" is a term which gives meaning and purpose to, and reflects the courage and determination of, a community which has dedicated itself—often at considerable personal risk—to seeking improvements in care and widespread awareness and acceptance.

Sherri Groveman Morris is an attorney, intersex patient advocate, former member of the Board of Director of the Intersex Society of North America and Founder of the US branch of the AIS Support Group.

Dear Editor,

I am concerned about the promotion of terminology that reinforces a notion of disorder for people who are intersexed. I prefer a term such as variation or atypicality.

I am concerned that people who have not had access to proper diagnostic work-ups available now will be excluded from appropriate treatment: people such as myself who may have had experimental interventions many years ago, but became alienated through such interventions and subsequent examinations. The failure to treat people appropriately because they fall outside an arbitrary category can be as problematic as treating people inappropriately.

I floated a survey on the title of this letter on the internet recently (it is still ongoing), and out of over 60 respondents, less than 10% endorsed the use of this new terminology. This ratio of 1-9 was consistent for people who identified themselves as intersex and who had experienced medical intervention for such in childhood.

It would appear that this terminology is being adopted with minimal consultation in relation to those who will be affected by it who are in a position to speak now. Part of the thrust of some proponents appears to be precisely because it will exclude some people from treatment (as we have seen in one or two previous responses).

Cryptorchidism, hypospadias, growing up unaware of inherent infertility, the early-onset of undiagnosed osteoporosis along with other such problems are not trivial; some of the attempted treatments for some of these in the past has not been fun either. Finding out the consequences of having such problems later in life simply because of some other medical problem, when they could have been treated much earlier had there been proper disclosure is no joke. Having been told that such symptoms have nothing to do with intersex, have an unknown cause, or haven't existed because the medical notes were lost, etc., I am not encouraged that the adoption of new terminology will make this sort of situation any better for people in the future.

Whilst the tone and content of the guidance for DSD is laudable, how far this will have any authority to affect practice is unclear. If people are specifically excluded from coverage, it is hard to see how practice in those cases can be expected to be any different from what has gone on in the past. Many underdeveloped males will not have a 'disorder', they will still be males who need fixing in certain ways to ensure they become 'proper' men, and as far as I can see there will be no reason to consider their feelings on this.

I am concerned that this approach on adoption of this terminology in relation to a vulnerable patient-group appears to run contrary to current trends in medicine, where such views are usually taken into account. It is more reminiscent of a bygone era where patients had things done to them with only limited discussion, because the Doctor always knew best.

I am also concerned that by classifying something as disorder, not only will it serve to exclude some from appropriate treatment, it will help justify experimental treatments carried out on some retrospectively, and justify inappropriate experimental treatments on some in the future.

Michelle