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Published in 'The Hastings Center Report' October/November 1988. The Hastings Center, 255 Elm Road, Briarcliff Manor, NY 10510 (http://www.thehastingscenter.org/publications.html).
Ms. D, a sixteen-year-old female appears in her physician's office concerned that she has not yet menstruated. A series of tests reveals that the girl has an XY genotype, a genetic abnormality called testicular feminization that occurs in approximately one in 50,000 females. Ms. D has precancerous testes that require surgical removal, and an operation on her vagina is necessary for her to engage in intercourse. However she is and always will be infertile. Although cases of testicular feminization present some phenotypic variability, it is very likely that Ms. D will not exhibit additional genetically related abnormalities. Individuals with her condition are phenotypically female and exhibit heterosexual/homosexual patterns at the same rate as XX females.
Her physician, Dr. P, is concerned about what information to disclose to Ms. D. He believes that he should inform her about her precancerous condition, and that this condition along with her vagina will require surgery. Dr. P further believes that Ms. D should be informed of her permanent infertility. However he is hesitant to disclose the genotype information, reasoning that informing a sixteen-year-old girl in the middle of puberty that she is "really a guy" would be completely insensitive. Since the information cannot be used in any way to correct the condition, he would like to postpone disclosing the genetic information until she is twenty-one.
Dr. P is also considering withholding the genetic information from Ms. Ds parents, in part because they might convey it to their daughter. In addition, he has heard that some parents of children with this condition become emotionally distraught and reject the child as a freak.
What kind and amount of information should be disclosed to Ms. D? Is nondisclosure compatible with the requirement to obtain informed consent prior to surgery? To what extent should Ms. Ds parents be informed of the situation?
by Brendan P. Minogue and Robert Taraszewski.
Brendan P Minogue is a Professor of Philosophy at Youngstown State University, Youngstown, OH. Robert Taraszewski practices medicine at Western Reserve Health Care System, Youngstown, OH.
Withholding information is occasionally a salutary practice in medicine, especially when the information is irrelevant to the care and general welfare of the individual. Cardiologists, for example, can easily identify statistical abnormalities within the heart, but they infrequently reveal these findings if the abnormality is irrelevant to care and if the information in all likelihood will harm the patient. In short while medical paternalism is frequently wrong, it is not unconditionally wrong. Nondisclosure of information is unjustifiable paternalism when such action genuinely reduces the patients freedom to act in accordance with what he or she considers his or her own best interest. In this case, the question is how Ms. Ds interests could be advanced by knowledge of her genetic identity. Since all of her immediate problems can be addressed without revealing the information about her genetic abnormality, it seems probable that no significant benefit would result from full disclosure. Furthermore, significant and unnecessary harm associated with the confusions of puberty could follow from full disclosure.
Does Ms. D nevertheless have sufficient information to make an informed decision about consent to surgery? Informed consent is a complex concept involving at least four elements: voluntariness, physician disclosure, patient comprehension, and patient competence. Since there is no evidence of coercion, the question of voluntariness is irrelevant. Since Dr. P is withholding information and since Ms. D consequently will not be aware of an aspect of her condition, disclosure and comprehension figure prominently in this case. Furthermore, as Ms. D is a minor, competence is an important consideration.
Since the central issue is one of withholding information, we can address the issues of disclosure and comprehension jointly. If Dr. P has no ethical obligation to disclose the information, then Ms. D has no ethical right or claim against him to convey the information. In short, we can address the comprehension problem by addressing the disclosure issue. A variety of standards of disclosure seek to define adequate disclosure, of which the three most common are the professional the reasonable person, and the subjective.
According to the first criterion, we must ask Would a typical physician act differently from Dr. P? The answer is No! Some, of course, might inform her, but disclosing the information is by no means customary within the profession. Given the second standard we must ask, Would a hypothetical reasonable person want this information revealed to her at this, time? Probably not. What reasonable person would needlessly choose to make a bad situation worse?
The subjective standard, however, allows for the possibility that Ms. D's informational needs might be unique, because of some personal quality or characteristic. For example, some individuals would simply want to know this genetic information. No explanation or justification or interpretation is required. They would just want to know at this time. But not all people would make such a request, and the central question therefore is whether Dr. P is obligated to determine to which class Ms. D belongs. Caring physicians do try to understand their patients as unique individuals and attempt to respond on the basis of that uniqueness, but Dr. P is not obligated to pry into Ms. D's consciousness to discover all of her unique feelings, especially when this would require him to reveal the information that he is morally reluctant to reveal. In short, the subjective standard obligates Dr. P only if he has knowledge about a unique belief; in the absence of such knowledge the physician has no obligation to inform his patient. Thus, on the most common standards of disclosure Dr. P has no obligation to convey this genetic information.
The competence issue is more problematic. Strictly speaking, as a minor the requirements of informed consent do not apply to Ms. D. But Ms. D's parents are her legal guardians and, as such, their consent to surgery is usually viewed as necessary. Is it obligatory to disclose the genetic information to them? This raises difficult issues because many parents would not keep this information from their daughter and could thereby cause her harm. Even the most caring and well-meaning of parents may say things during moments of anger or confusion that are very harmful to their children.
Yet as guardians, they are to act in a way that will secure the wishes and/or the welfare of their child. Can Ms. D's welfare be fully secured without informing her parents of the genetic information? The case itself presents insufficient evidence to indicate whether Ms. D's welfare would be increased or decreased if her parents had full knowledge of her abnormality. Further, Ms. D has probably never indicated her wishes on this matter, hence her parents would not be in any position to express them. In short, if we take seriously the function of guardians to secure the wishes and welfare of minors and, if neither function can be secured by disclosing Ms. D's genetic identity to her parents, then there seems no sound ethical reason to disclose this information in these circumstances.
by Sherman Ellas and George J. Annas.
Sherman Elias is director of the Division of Reproductive Genetics and Professor of Obstetrics and Gynecology at the University of Tennessee, Memphis, TN. George J. Annas is Utley Professor of Health Law and Chief, Health Law Section, at Boston University Schools of Medicine and Public Health.
The dilemma in this case is whether Dr. P should be totally truthful with Ms. D and her parents. He believes that all would be better served with a modified version of the truth. After all, as a physician, Dr. P should strive to prevent pain, emotional as well is physical, not inflict it. Irrespective of his good intentions, however, there are practical, legal, and ethical problems with Dr. Ps plan. Practically, it is unrealistic to believe that Ms. D will not ultimately learn the details of her having testicular feminization syndrome. From the onset it will be difficult to maintain the charade. Dr. P plans to inform Ms. D that she has a precancerous condition and will require surgery.
A precancerous condition of what? she will certainly ask.
Your gonads will have to be removed, Dr. P answers.
My what? Gonads? You mean my ovaries?
Does Dr. P answer Yes? No? Well, sort of? He will also inform her of her permanent infertility.
Infertile! Why can't you leave my gonads alone until I have had at least one child, say in my early twenties? What is the chance of my developing cancer, anyway?
The risk is low, probably no higher that 5 percent if they are removed before age twenty-five. But thats not the only problem. You also don't have a uterus.
I don't have a uterus! Does that mean I will never have menstrual periods either?
What exactly is my condition called?
If Dr. P gives her condition a label at all, he will likely use the term androgen insensitivity syndrome rather than testicular feminization syndrome. But given any name, there is a distinct possibility that Ms. D will go to a library and look it up.
And what if Dr. Ps incomplete disclosure succeeds? Can it be maintained when Ms. D is finally admitted to the hospital? The way for her to learn she has testicular feminization syndrome is certainly not when the intern conducts a preoperative evaluation the evening before surgery, or if she happens to glance at her hospital chart.
Informed consent raises two basic issues. The first is, who can consent to the surgery. Since Ms. D is sixteen she is legally a minor. Nonetheless, there is good reason to suspect that she can understand the nature and consequences of the decision to have surgery, in which case she is a mature minor and could legally make this decision herself. The potential difficulty of dealing with this diagnosis makes it preferable to have Ms. D's parents involved in the decision. If she adamantly refuses, the doctor should honor her choice, but (assuming there is little or no risk in waiting) he would be justified in postponing the surgery until her 18th birthday. Even if the physician wants the parents' consent for the operation, it should never be done without the consent of Ms. D as well.
Accordingly, she needs to be told all of the information necessary to provide an informed consent: the recommended surgery and the reasons for it, the risks and benefits, the alternatives, and the likely outcomes, including problems with recuperation. She may, for example, want to postpone the surgery until the summer, or until after high school graduation, so that her friends and classmates will not question her about it.
This is her decision to make, but she can only do so if she is properly informed about what is at stake.
A much more difficult question is whether Dr. P owes a duty to other family members who may not be aware of the risk of this X-linked recessive disorder. Since the condition is not terminal and probably would not cause a couple to decide against having children (although they may elect prenatal diagnosis for sex determination and, when it becomes available, specific diagnosis of testicular feminization syndrome), it is unlikely that any court would find a legal duty to disclose on the part of the physician. On the other hand, the physician should certainly encourage Ms. D to discuss this fully with her parents, and encourage her parents to discuss it with the mothers family as well.
Ethically, is Dr. Ps withholding of information deception? Can we distinguish not telling the whole truth from lying? Perhaps there is a difference between giving misinformation and withholding information, but it is thin. Knowingly providing false information is morally wrong; such behavior erodes the underlying assumption that the physician is the patients advocate. If Ms. D or her parents learn that they had been dealt with in less than a truthful manner, this might destroy the physician-patient-family relationship. And once deceived, it would be unlikely that they would ever have confidence that Dr. P would be forthright in the future. Moreover, they may also perceive testicular feminization as an even greater problem than it really is.
The issue of deception seems to center on whether the information withheld will be important to Ms. D or her parents. One measure of its importance, would be the potential consequences should Ms. D or her parents learn of the true nature of testicular feminization in an inappropriate and uncontrolled fashion. Admittedly, disclosure entails the risk of Ms. D having a gender identification crisis or her parents rejecting her as a freak. We believe that it would be far better and ultimately in everyone's best interest to explain the testicular feminization syndrome to Ms. D and her parents in a sensitive, but fully accurate fashion. Dr. P must stress the fact to Ms. D that being a female does not simply depend on how her gonads or chromosomes appear under a microscope, but rather her feminine self-image with respect to social roles and sexuality. In this setting Dr. P would also have the opportunity to provide emotional support and if necessary, arrange for psychological consultation.
In conclusion, by dealing with Ms. Ds diagnosis of testicular feminization syndrome in a truthful manner, everyone's interests will ultimately be best served.