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The whole truth and nothing but the truth?

The Whole Truth and Nothing But the Truth? 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 tests 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 rates 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 to Ms. D until she is twenty-one.

Dr. P is also considering withholding the genetic information from Ms. D's 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. D's parents be informed of the situation?
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Title Annotation:physician disclosure of testicular feminization to adolescent girl; includes commentary
Author:Minogue, Brendan P.; Taraszewski, Robert; Elias, Sherman; Annas, George J.
Publication:The Hastings Center Report
Date:Oct 1, 1988
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