February 13, 2013
This paper will focus on the parents of intersex children, and their role in determining their child’s sex through the means of surgery. Intersex is a term for a variety of conditions that lead to atypical development of physical sex characteristics; it may also be referred to as ‘disorders of sexual development’, or DSD. Affecting about one in every 2,000 babies born in the United States, considering the obscurity of such conditions, intersex is somewhat of a rarity in the medical world. Due to their ambiguous, “abnormal” looking genitalia, most parents are quick to assign intersex children a sex, specifically through invasive surgery. Parents and doctors alike are apt to make such acquiescent assignments either to fulfill a societal standard in an effort to “normalize” the child, or to squelch the unproved assumption that an intersex condition can be a threat to the child’s well-being. Surgeries, the sole concrete means of culminating a child’s sex, are extremely invasive. Since the individuals regarded in this paper are babies or very young children, in most cases they are given no say regarding their methods of treatment, a clear violation of autonomy. Because the child has virtually no say in such surgical measures, he/she is at the risk of psychological and self-identity crises in his/her future. Some intersex individuals feel that after having undergone a surgery, they have been assigned the wrong sex; in many of these cases, a patient may opt to undergo another surgical procedure in order to reverse their sex. Therein lays the dilemma of reversibility, a process both stigmatized and physically trying. Patients hoping to reverse intersex procedures must endure mental evaluations and hormone treatments, capped off with an obtrusive surgery; all because of a parent’s decision. Due to the physical and mental anguish circulating around such an assignment, should the parents of an intersex child be able to determine their child’s gender?
Judy Beck’s parents had tried for years to conceive a child. After three miscarriages and a stillbirth, they were close to giving up. When they finally got pregnant and were able to carry the baby to term, the Becks were overjoyed. When people asked them their hopes for the baby’s future, they shrugged it off; all they wanted, they said, was for the baby to be healthy. They got their wish, and the baby was, in fact, healthy; little did they know, however, when they prayed for the baby to be healthy, they were really asking for the baby to be “normal”. Judy was born with an androgenic disorder, causing some cells in her body to have the XY genotype and others to have the XO. After five weeks of surgery and study, doctors were still unable to come to a consensus on Judy’s sex. So, her parents came to the culminated decision that she would be raised a girl. Cases like Judy, though uncommon, are not unheard of; approximately 0.018% of individuals will be born with ambiguous genitalia. These individuals have DSD (disorders of sexual development), which can either be caused by genetic changes or by maternal androgenic exposure. In some cases, a child with DSD is proven to be clearly more male than female- or vice versa- but other conditions of intersex are far more obscure. Common disorders of sexual development include congenital adrenal hyperplasia- caused by an overproduction of hormones in the adrenal gland causing masculinization of genitals in female infants- and androgen insensitivity syndrome- caused by genetic defects on the X chromosome, which make the body unable to respond to the hormones that produce a male appearance. Because of the otherwise “abnormal” appearance of their children’s genitals, parents and doctors may make hasty decisions in regard to assigning that child a sexual identity. This can either be accomplished by simply calling the child male or female, or by means of invasive surgery.
A traditional method introduced in the early 60s, founded on the principles that “immediate sexual determination” (Weismeann) would improve individuals’ fertility later in life, as well as their mindset, suggests that an early surgery is fundamental. It can also be argued that parents and doctors are so quick to culminate a child’s sex to fulfill a societal norm, or conform to the traditional definition of either ‘male’ or ‘female’. This method has become quite controversial because it is a clear violation of the autonomy of a child; because they are, in fact, small babies, most intersex individuals who are assigned a sex or forced to go into surgery having virtually no say in the matter. Now, although the traditional approach is still widely used today, its usage is waning; long-term studies have not supported the method, with few data suggesting the effectiveness of a reconstructive surgery. Data has also proven that there are “no apparent connections between the appearance of an individual’s genitalia and their gender role decisions later in life” (Weismeann). Finally, there are no links between gender identity and psychosexual orientation that seem to be attributed to early genital surgery. If studies have proven the waning effectiveness of such assignments and surgeries, along with the clear violation of the children’s autonomy, there must be a more efficient way to go about dealing with intersex individuals.
The Patient’s Bill of Rights is a list of the rights of patients most recently published by the American Hospital Association. The Patient’s Bill of Rights offers some guidance and protection to patients by stating the responsibilities that medical providers have toward them and their families during hospitalization. Though the Bill isn’t a legally binding document, it is one that is extremely valued and revered amongst the medical community. The Patient’s Bill of Rights offers the following: Information for patients; choice of patients’ providers and plans; patients’ access to emergency services; patients’ ability to take part in treatment decisions; Respect and non-discrimination; confidentiality of health information; the option of complaints and appeals; and consumer responsibilities. Since many of these provisions pertain more to the individual patients- as opposed to those who make their medical decisions for them- one that I would like to focus on is treatment-making decisions.
The Patient’s Bill of Rights clearly states that each individual is entitled to take part in their own treatment decisions. This ensures that patients will be able to either confirm or refuse a treatment, and have the opportunity to legally choose who can speak for them if they cannot make their own decisions. Needless to say, legally, all children under the age of 18 are still under the medical conservatorship of their parents. In cases of children inflicted with intersex conditions, especially infants, this may be problematic, because parents are given the sole right in choosing their child’s sex. When children are surgically conformed into the sex of their parents’ choosing, the rights of intersex patients are truly violated.
The Patient’s Bill of Rights even equates a patient’s forced unwanted medical procedure to battery. A traditional method to going about intersex children was to assign them with a gender as soon as possible; this approach is based on three primary assumptions. The first is that gender ambiguity is imposable, meaning it can be forcibly assigned. The second opinion is the stance that fertility maintenance is important, and assigning a specific sex to a child will help shape its sexuality in the future. The final criterion is the idea that a satisfactory cosmetic surgery will provide for a sense of fulfillment and happiness later on in the individual’s life.
Something especially important to consider are the motives of parents and doctors alike. Many parents are quick to assign their children a sex because they feel a societal norm must be filled. In retrospect, parents will do whatever it takes in order to have a “normal” child. The mind-set of parents who have an intersex child must be taken into account. Clearly, after giving birth to a baby with a disorder of sexual development, one may feel confused and their decision-making abilities may be compromised; this is why it is especially important for families to receive sound advice from medical professionals. Because parents are the guardians of their children, it is assumed that they are granted the power to make all of their decisions for them; but what is the best decision? For starters, parental discretion is necessary. The child is to be respected as another major player in decision-making process. It has been determined that children are able to make their own decisions at the ages five to six; medical professionals alike have begun to suggest prolonging making such a decision regarding their sex until they reach that age. Though many say that children gain their decision-making abilities at such a young age, it is also argued that during late childhood, and early adolescence, children become more opinionated about their own decisions based on a more considerable amount of life experiences. In addition to parental discretion, a good parent-child relationship is necessary; not easy, however, and must be worked for. Due to the psychological trauma of DSD, parents must be sympathetic. And finally, the outcome of surgery should be evaluated and inform future treatment recommendations.
There has been much debate over two models proposed by the Intersex Society of North America (ISNA). The Concealment-Centered Model and Patient-Centered Model both provide conflicting points of view on the treatment of individuals with intersex. For example, the Concealment-Centered Model argues that a “normalizing” surgery should be performed as soon as possible because intersex is a psychosocial emergency; the longer you wait, the greater the trauma on the individual. It is argued that a decision of sex should be determined at a rather young age because of the psychological trauma ambiguity may have on one’s psyche. Parents and peers might be uncomfortable with a child with ambiguous genitalia. Social institutions and settings like locker rooms, public restrooms, daycare centers, and schools will be brutal environments for an “abnormal” child. The person with an intersex condition might later wish that her or his parents had chosen to have her or his genitals “normalized”. While the Concealment-Centered Model arguably caters more to a societal standard, the Patient-Centered-Model, on the other hand, believes that social distress is a reason to change society, not the bodies of children.
Another relevant ethical issue in the treatment of individuals with DSD is the concept of effectiveness. Judy, of the case previously mentioned, is a prime example of this issue. As a child, Judy never truly felt confident in her own body; never able to fully accept herself as just a “tomboy”, she felt isolated from her peers, and very much alone. Incredibly inhibited by her own body and the mysterious medical condition that she, the patient, knew nothing about, Judy grew increasingly conflicted about her identity. Coming to the conclusion that she could not live a life as a woman, yet undergoing numerous procedures in the attempt to make that determination a reality, Judy felt there was no way out: so, she attempted suicide. After countless hospital stays and multiple therapy sessions, Judy concluded that the sex her parents and doctors had assigned her years before had been incorrect. In 1998, after years of struggling with her identity, Judy decided to transition from female to male, through a testosterone-based method, as well as reconstructive surgery. Effectiveness of an intersex surgery must be taken into serious consideration, because it is relatively unclear as to the way an individual will respond to their previously-determined sex. Cases like Judy’s are not unheard of; many intersex individuals feel as if their parents and doctors have assigned them the wrong sex, and they are living a lie. It is important to distinguish the difference between ‘sex’ and ‘gender.’ Sex refers to the biological and physiological characteristics that define men and women, while gender refers to the socially constructed roles, behaviors, and attributes that a given society considers appropriate for men and women. While sex as more of a concrete, physical description, gender is a bit obscure; while someone can be a particular sex, this does not necessarily confine them to a specific gender. The transgender community is the perfect example of this idea- even though an individual may be a particular sex, it does not necessarily confine them to that sex’s gender identity. Data has also proven that there are no apparent connections between the appearance of an individual’s genitalia and their gender role decisions later in life. Technically, there are no links between gender identity and psychosexual orientation that seem to be linked to early genital surgery. Therefore, parents, with the full consent of their children, should withhold a surgery for as long as possible in order to prevent an ineffective culmination of one’s sex.
Though it may seem desirable to many, what would happen if an individual with ambiguous genitalia is actually satisfied with the condition of their genitals; what if an individual chooses to withhold sexual determination? Though one may think the withholding of such a corrective surgery would be outlandish, it is, in fact, not necessarily unheard of. Cochlear implants are electronic instruments, surgically implanted in deaf individuals. They provide a sense of sound to those who are sound-impaired. Cochlear implants have become a topic of much debate over recent years. For adults who have been living as deaf individuals all their lives, they have learned to communicate and function in both the hearing and non-hearing communities. Many don’t think it is necessary to correct something that they don’t really even consider to be a problem. This can be considered a direct correlation to intersex patients. Many may feel that because they have lived in that specific state for such a long time, it is their “normal”; why would someone change something about themselves that they deem to be natural and just? Because many of these cases are dealing with young children, not just adults who have lived as deaf individuals for some time, for parents of hearing-impaired children, this is also an issue to consider; just like in cases of intersex, if a child is born deaf, its parents are given the sole right to determine any treatment decisions. If they opt for a cochlear implant, the socialism of the child will most definitely be influenced by how their parents chose to handle the situation. Another parallel to the stigma may pose for an alternative view: what if an individual feels satisfied with a childhood intersex surgery? Completely plausible and definitely relevant, best-case scenarios like these have proven to be rather unheard of, perhaps because of the negative stigma regarding such early surgeries, or the opinion of many that the surgeries are not ethical.
How can the “ultimate best” for an individual be defined? Does an ultimate best even exist? Though it is guaranteed that parents love their children and truly do want what’s best for them, in reality, how can they determine the body their child lives in? Regardless of whether or not a sexual determination is made, the path of each intersex child is virtually irreversible: their reproduction, sexuality, physical and mental integrity, formation of their self-identity, and familial relationships are all affected in multiple facets. Due to the sensitivity and scope of intersex conditions, it is pertinent to establish careful, considerate principles and recommendations in the treatment of said conditions. The purpose of this principle is to “respect the child’s self-determination and well-being, but also treat his or her parents as affected persons who themselves require help and support” (Weismeann). The well-being of child and future adult must be fostered- this entails that patients will receive the utmost respect throughout the process. In addition, the rights of child / adolescent to participate in and/or self-determinate decisions that affect them now or later- overall, the child has full say; he or she, once at an appropriate decision-making age should be allowed to express his or her own sex, and whether or not he or she would like to undergo a surgery at all. Finally, respect must be granted to the family and parent-child relationship- intersex is a family condition. It is vital to make sure the family of an intersex individual is supportive and loving of the child’s condition, and respects whatever decision he or she may make regarding their own sex. Because of everything at stake, it could be stressed that it is in the child’s best interest to withhold sexual culmination; once a child possesses his or her own decision-making abilities, he or she may make the decision for themselves. This determination would be based off of the assumption that he/she has found a sense of fulfillment, and individuality, and the reassurance that they have their own voice.
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Nita Whelan is a junior at Kent Place School. She originally applied for The Bioethics Project 2012: The Medically Modified Human because having never taken an ethics course at Kent Place, she believed that along with the scholars from the Hastings Center, she could obtain the epitome of ethical knowledge. Little did she know, along with the incredible experience of learning about ethical dilemmas, Nita would also develop a passion for biomedical issues- something that she did not originally anticipate. Nita chose to focus her project on the parents of intersex children, and inquiring upon whether or not they should be able to determine their child’s sex. Prominent issues in the project include autonomy and reversibility. Nita has thoroughly enjoyed her experience thus far!