 Mindy is an associate professor of clinical surgery at Albert Einstein College of Medicine and was appointed to serve on the American Academy of Pediatrics Committee on Bioethics this year. She graduated from the Emory School of Medicine, completed the general surgery residency at the University of Illinois in Chicago and fellowship training in pediatric surgery at the University of Michigan in Ann Arbor. In 1992, she joined the section of pediatric surgery at the University of Chicago and later joined the McLean Center faculty after completing her surgical ethics fellowship at the McLean Center in 2009. In 2011, she joined the Division of Pediatric Surgery at Montefiore and she asked me to pronounce it correctly in Dubronx and is the program director of the general surgery residency at Montefiore in Dubronx. She's currently in the Einstein Cardoza Masters of Science and Bioethics program and the title for her talk today is, quote, can we talk about sex? Mindy? Thank you, thank you for the invitation and the privilege of participating in this conference and my only disclosure is I have no relation to Dr. Ruth. So I'm gonna tell you a story. In 1993, early in my career as a pediatric surgeon, I was performing an elective inguinal hernia repair on a three-year-old girl. She had a right-sided inguinal hernia and the operative plan was to repair the right side and then explore the left side because of the high instance of bilaterality in females less than five years of age. And the other point that was emphasized during my training was to open the hernia sac and deliver up either a fallopian tube or an ovary to confirm that the patient was a genotypic female, XX. When I opened the right hernia sac, I withdrew a testis, not a fallopian tube or an ovary and when I explored the other side and opened the left hernia sac, I retrieved the other testis. I then passed an instrument through the hymen and determined that the patient had a shortened blind end in a vagina. This confirmed clinically the diagnosis of a non-veralized male with androgen insensitivity syndrome, a cause of male pseudo-homaphroditism. I then planned to perform bilateral orcheectomy to avoid the future development of malignancy in these intra-abdominal testis. Prior to proceeding with that procedure, I consulted a pediatric endocrinologist with decades of experience. He agreed with my diagnosis of my operative plan and then asked me what I planned to tell the patient's mother. I explained that I would not refer to the gonads as testis, simply gonads. I planned to tell her that her daughter's gonads were abnormal and would not produce eggs and then planned to obtain informed consent for the gonadectomy. Then after the procedure, I planned to explain that her daughter did not have a uterus and would not be able to have children. When comfortable, her daughter would be taught how to insert a vaginal dilator to lengthen her vagina and that she would be able to have intercourse and be sexually active. He agreed with these points and then he made the following recommendation. Do not tell the mother that her child is XY. Mothers and daughters fight and you would not want this information revealed in a moment of rage. He also planned to see the child in his clinic. The mother agreed to gonadectomy and after the procedure we discussed her daughter's inability to have children due to the fact that she lacked gametes and a uterus and her future sexual functioning. We also discussed the referral of the pediatric endocrinology clinic. I did not discuss the fact that her daughter was a genotypic male with an XY karyotype. This child was assigned female gender of birth because she had female external genitalia and was being raised female. There was no indication for any surgical intervention that would convert her to a male phenotype. There are three types of differentiation required for sexual reproduction. Gonadal for the production of gametes, genital for the conveyance of gametes to a point of fertilization and behavioral for the urge to behave sexually. Gender or sexual identity, a person's self-representation as a male or female is essentially established in all children by three years of age. And sexual identity is separate from sexuality which occurs later. Sexual ambiguity and gender uncertainty are unsettling for parents and physicians. The baby born with ambiguity regarding its sex or as in this case, the child that is found to have a discrepancy between their presumed sex and their genotype raises many ethical issues for parents and physicians. In reviewing and analyzing this case in my mind over the past 20 years, the ethical issue remains the issue of disclosure of the genotype to the patient's mother. The ethical guidelines at stake include beneficence, autonomy, and non-maleficence. In 1993, I thought I was being beneficent by following the recommendation of my consultant. For this parent and outpatient inguinal hernia pair had become complicated by the necessity for gonadectomy and being confronted by the fact that her daughter had no reproductive potential. I thought I was acting in the best interest of both the patient and her mother by limiting the amount of information and hopefully allowing for the comprehension of the difficult message delivered. I knew that the pediatric endocrinologist and a support group would be additional resources for further explanation, clarification, alleviation of fears, and reassurance. This may have been a rationalization, alleviating me of the burden of delivering information that I was unprepared to deliver, specifically her daughter's male genotype. I had never encountered this type of case during my fellowship and I felt very much unprepared to deal with the mother's reaction to this information. In following my consultant's recommendation, I was complying with his paternalistic approach to this case. There was an imbalance in power in the doctor-patient-parent relationship. I had information to disclose and I determined what was disclosed. And having knowledge of the karyotype would not have resulted in a change in this child's gender assignment. She'd been raised as a girl under the assumption that she was XX. Inspection of birth revealed unequivocal female external genitalia. It was simply full disclosure. This mother had a right to know this information. I thought that my actions were benefiting or preventing or mitigating harm to the mom and the patient. In retrospect, I'm concerned that I was maleficent in feeling to disclose the child's karyotype to the mother because I was compromising the parent's autonomy in the decision-making process. The surgical management of intersex conditions raises questions as to whether intersex is a disease or a malfunction about the basis for treatment decisions and the authority of parents and others, such as religious authorities, to make irrevocable decisions for children. These questions remain incompletely answered and have highlighted the need for evidence-based outcome studies and have contributed to the shift from paternalistic physician-centered decision-making to patient-centered decision-making. In 1953, Dr. John Morris, a gynecologist, published a seminal paper describing the clinical anatomic and histologic features of 82 cases of the syndrome of testicular feminization. He stated, quote, from the psychosexual aspect, these patients are definitely female. He argued against the disclosure of the genotype. It goes without saying that it would be unwise to inform the patient of the true state of affairs. It seems only necessary to state that childbearing is impossible. Morris's paper and recommendation of non-disclosure of the genotype set the tone for decades in the management of patients with complete androgen insensitive syndrome. And I'm gonna use the acronym CAIS from this point on. In 1988, the ethical debate of whether to disclose the genotype to the parents and patient with CAIS was reviewed. The arguments explore issues of paternalism and deception. The question of whether disclosure to the parent of the patient's genotype could result in potential unnecessary harm to the patient was raised with the concern that the genotype could be disclosed in a moment of anger. This concern was shared by the pediatric endocrinology consultant, in my case. This argument was countered with the concern of the potential consequences should the patient learn her genotype in an inappropriate and uncontrolled fashion. The parents and patient may feel deceived by their physician's non-disclosure of the patient's genotype. It was concluded at that debate that physicians must stress the fact that being a female doesn't depend on gonads or chromosomes, but rather her feminine self-image with respect to social roles and sexuality. In 1992, in a 24-year retrospective review from a single children's hospital of 21 patients with testicular feminization, the authors, pediatric surgeons, stated that the results of the chromosomal analysis were given only if the parents asked for the information. A review by the American Academy of Pediatrics and Committee on Genetics in 2000 illustrated the paternalistic concealment-centered model. Intersex was viewed as a rare anatomical abnormality requiring immediate medical attention. The urgency was rationalized to minimize medical, psychological, and social complications. However, the evidence substantiating that surgery performed for cosmetic reasons during infancy relieves parental distress and improves the parental child bond is lacking. In contrast, patient-centered care includes expeditious assessment, decision-making, and gender assignment without the urgency for cosmetic surgical intervention. The current emphasis of surgical management is functional outcome rather than cosmesis. It's now established practice in 2013 to disclose the genotype at the time of diagnosis of CAIS. Failure to disclose the genotype as it relates to the diagnosis may result in the patient learning about her diagnosis in an unsupported setting. For example, via the internet, the possibility of the patient discovering her genotype in an inappropriate matter is not a theoretical concern. In 2012, the US Olympic team had more female athletes than male athletes. Despite this advance, a masculine-appearing female athlete may face investigation for hyperangogenism and have her eligibility to compete as a woman challenged. In 2009, Caster Semenya, a runner whose physical appearance associated with fast-finishing times in attaining the gold medal in the 800-meters 2009 World Championships, prompted gender examination to determine if she had an unfair competitive advantage. After significant public scrutiny, she was cleared to resume international competition in 2010. The results of the gender tests were not revealed for privacy reasons. The International Olympic Committee's sex verification policy, in attempt to determine who is eligible to compete as a female to avoid unfair competitive advantage, may publicly challenge a female athlete's femininity, sexuality, gender role, and role in society. Imagine an athlete being told that she cannot compete as a woman, even though she's been raised as a woman, views herself as a woman, and until this event has had a female role in society. The necessity of gonadectomy in CIS is accepted, however, the timing remains controversial. The testes are normal and not dysgenetic and malignant degeneration prior to puberty is rare. The current recommendation is to allow for the natural progression of puberty, performing gonadectomy once final height and breast development have been attained. Performing gonadectomy in the post-puberty minor will require disclosure in order to obtain informed consent from the parents and ascent from the teenager. The Intersex Society of North America recommends the following patient-centered model. Following diagnostic workup, newborns with intersex should be given a gender assignment as boy or girl. Gender assignment is simply assigning a label and does not involve surgery. Procedures necessary to sustain the health of the child should be performed. Genital normalizing surgery should not be performed until the child can make an informed decision. The surgery can result in the excision of tissue that may be needed for subsequent reconstruction. This patient-centered paradigm highlights that the person with an intersex condition has the right to self-determination regarding their body, particularly since the surgical procedures are not reversible and the risks are substantial. Newborn gender assignment is preliminary. The child may decide later in life to change their gender assignment. As a matter of fact, a law went into effect last month, allowing German parents to register their newborn babies as neither male nor female if they were born with ambiguous genitalia. The German Ethics Council urged the change to alleviate hasty parental decision-making and possible premature commitment to surgery immediately after birth. Judith Butler, in Doing Justice for Someone, notes that the intersex movement challenges the societal ideal of gender dysmorphism. When a continuum exists between male and female, she asks her readers to consider being less rigid in the classification of gender. But one difficulty with the establishment of a continuum of gender is the practicality of gender assignment. When a baby's born, the first questions that asked is, is it a boy or a girl? Societal rigidity in viewing gender as male or female is reflected in the current International Olympic Committee's sex verification policy. And it's interesting that one of our former fellows, Hillel Gray, made this statement. Besides sports, religion is another domain that is permitted to treat people differently because of their sexual identity. Think about it. In the orthodox community, you have to know the sex. Who's gonna perform the mitzvahs and where do you sit in the synagogue? Prior to the acceptance of a continuum between male and female, society must have the vocabulary to have the conversation about gender. The term intersex implies somewhere between male and female. Although my patient was defined as intersex, there was no ambiguity in terms of her gender assignment. She was assigned female gender birth based on the female features of her external genitalia and was raised female. Terms such as intersex, pseudomathrodite and sex reversal are perceived as potentially pejorative by patients and can be confusing to both physicians and parents. The AAP Consensus Statement in 2006 on the management of intersex disorders proposes the term disorders of sexual development defined as congenital conditions in which development of chromosomal, gonadal or anatomic sex is atypical. The focus must be on how to disclose the information, not whether to disclose the information. Surgical education is a process that leads to the acquisition of a fund of knowledge, the clinical integration and application of this knowledge, technical skills and the development of surgical judgment. The pediatric surgical trainee expands their surgical repertoire, attaining the expertise to manage congenital anomalies, tumors and other conditions specific to infants and children. Although the perioperative and surgical management may be mastered, the delivery of information regarding congenital anomalies, tumors or unexpected findings at operation may be challenging to the trainee that's not had the exposure to these cases or the opportunity to shadow in attending. This aspect of training, the acquisition of templates to disclose information is highly variable. I had no previous exposure to the manage of a child with an intersex disorder during my fellowship. This case necessitated informing a parent of unexpected findings at operation and raised an ethical conflict for me regarding complete disclosure of the diagnosis to the parent. As we equip our pediatric surgical trainees with the knowledge and technical skills to care for infants and children, we must also enable them with the templates for effective communication with patients and their families. As physicians, we must be equipped with a vocabulary to not only disclose the medical information to our patients and families, but to impart reassurance and convey certainty. The conversation about gender will require the evolution of our vocabulary regarding gender. Thank you. We have time for a question or comment or two. Just a question. I wanna thank you for addressing this incredibly important issue that really gets very little time, I think, in medical ethics discussions. One voice that I just wonder how you've encountered and how it's informed you has been the voice of the individuals who grow up with this condition and their parents. I mean, I know some of the change that's happened in the treatment of patients with intersex conditions has it been because of activists within the intersex community or individuals who suffer from this? And I wonder how that's informed your work or if there's any formal research or writing or anything from individuals with this condition. Thank you for your question. I think there's been a tremendous awareness created by the New England Journal article that came out several years ago regarding children that had ambiguous genitalia. And it was amazing when they became teenagers that several of them had ambiguity about their assigned gender and sexual identity. And it created an awareness that we really need to have a form of self-determination for these children. In terms of my own practice, I think just open disclosure and the consensus within my division of pediatric surgery, everyone's in agreement. Thank you very much, Wendy.