|
|
|
|
|
Footnotes
|
* |
|
Hazel
Beh is an Assistant Professor of Law at the William S. Richardson
School of Law, University of Hawaii. Milton Diamond is a Professor of
Anatomy at the John A. Burns School of Medicine, University of Hawaii.
The authors thanks Kenneth Kipnis, Sylvia Law, Julie Greenberg and
Sherri A. Groveman for reviewing and discussing early drafts or
excerpts.
|
[1] |
|
Intersexed
individuals are those that are born with biological features
simultaneously typically male or female. For instance they might have
one ovary and one testes or gonads that contain features of both
ovarian and testicular tissue, they can have chromosomes of XXY, XO or
other configurations. There are more than 1 dozen categories of
intersex.
|
[2] |
|
Ambiguous
genitalia are those that are not clearly identified as male or female.
Usually detected at birth they are a frequent sign of intersex.
|
[3] |
|
See infra notes ___.
|
[4] |
|
Gender
as used in this paper is a social term representing the social
conditions of boy and girl and man or woman. This is contrast to the
biological terms of male and female. It is thus obvious that a male can
live as a girl and woman and a female can live as a boy or man.
|
[5] |
|
See infra notes __.
|
[6] |
|
See infra notes __.
|
[7] |
|
See
John Money, et al., An Examination of Some Basic Sexual Concepts: the
Evidence of Human Hermaphroditism, 97 BULL. JOHNS HOPKINS HOSP. 301,
___ (1955) (“In place of a theory of instinctive masculinity or
femininity which is innate, the evidence of hermaphroditism lends
support to a conception that psychologically, sexuality is
undifferentiated at birth and that it becomes differentiated as
masculine or feminine in the course of the various experiences of
growing up”); John Money, Cytogenetic and Psychosexual incongruities
with a note on space form Blindness. 119 AM. J. PSYCH. 820, __ (1963) (
“It is more reasonable to suppose simply that, like hermaphrodites, all
the human race follow the same pattern, namely, of psychological
undifferentiation at birth.”). In the early days intersexed individuals
were known as hermaphrodites and pseudohermaphrodites.
|
[8] |
|
One
of the authors of this article, Milton Diamond, was one of the two
researchers who reintroduced the patient to the medical literature in
1997.
|
[9] |
|
See infra notes ___.
|
[10] |
|
See infra notes __.
|
|
|
|
|
[11] |
|
For
recent accounts of the John/Joan case, see Milton Diamond & H.
Keith Sigmundson, Sex Reassignment at Birth Long Term Review and
Clinical Implications, 151 ARCHIVES PEDIATRIC ADOLESCENT MED. 298
(1997) [hereinafter Sex Reassignment]; Milton Diamond & H. K.
Sigmundson, Management of Intersexuality: Guidelines for Dealing with
Persons with Ambiguous Genitalia, 151 ARCHIVES PEDIATRIC ADOLESCENT
MED. 1046 (1997) [hereinafter Management of Intersexuality]; Milton
Diamond & Kenneth Kipnis, Pediatric Ethics and Surgical Assignment
of Sex, 9 J. CLIN. ETHICS 398 (1998) [hereinafter Pediatric Ethics].
Colapinto provides the most thorough examination of J/Js life. See John
Colapinto, The True Story of John/Joan, ROLLING STONE, Dec. 11, 1997,
at 54. See also John Colapinto, 2000 (In Press). AS NATURE MADE HIM:
THE BOY WHO WAS RAISED AS A GIRL. Harper Collings, New York.
[hereinafter As Nature Made Him].
Professor
Greenberg discusses the case in a critique of law and medicine’s rigid,
binary approach to sex and gender. See Julie A. Greenberg, Defining
Male and Female: Intersexuality and the Collision Between Law and
Biology, 41 ARIZ. L. REV. 265 (1999).
|
[12] |
|
See
SUZANNE J. KESSLER, LESSONS FROM THE INTERSEXED 6 (1998) (commenting,
“virtually all academic writing on sex and gender refers to a case
first described by sexologist John Money in 1972”); Alice Domurat
Dreger, “Ambiguous Sex” -- or Ambivalent Medicine? Ethical Issues in
the Treatment of Intersexuality, 28 HASTINGS CENTER REP. 24, 26 (1998)
(describing establishment of surgical standard).
For
references to the surgical standard, see, e.g., JOHN MONEY & ANKE
A. EHRHARDT, MAN & WOMAN/BOY & GIRL (1972) [hereinafter MAN
& WOMAN]; P. K. Donahoe et al., Clinical Management of Intersex
Abnormalities, 28 CURRENT PROBLEMS IN SURGERY 517, 527 (Aug. 1991);
LOWELL KING, UROLOGIC SURGERY IN NEONATES & YOUNG INFANTS 369-70
(1988); Alan D. Perlmutter, Intersex, 2, 15, in UROLOGICAL SURGERY IN
INFANTS AND CHILDREN (Lowell R. King, ed.) (1997); Timing of Elective
Surgery on the Genitalia of Male Children with Particular Reference to
the Risks, Benefits, and Psychological Effects of Surgery and
Anesthesia, 97 PEDIATRICS 590 (April 1996) (also available as American
Academy of Pediatrics 1997 Policy Reference Guide) [hereinafter Timing
of Elective Surgery]; C. R. J. Woodhouse, Ambiguous Genitalia and
Intersexuality -- Micropenis, in PEDIATRIC UROLOGY 689, 690 (Barry
O’Donnell & Stephen A. Koff, eds. 1997).
|
[13] |
|
The
child’s penis was “ablated flush with the abdominal wall” during an
electrocautery procedure which burned the entire penis, causing it to
eventually necrose and slough. MONEY & EHRHARDT, MAN & WOMAN,
supra note __, at 118. Penile amputation occurs by surgical or other
childhood mishaps. They are not common but are not rare. See, e.g.,
Bernardo Ochoa, Trauma of the External Genitalia in Children:
Amputation of the Penis and Emasculation, 160 J. UROLOGY 1116 (Sept.
1996) (reporting seven case studies); Tracy Thompson, Two Atlanta
Physicians Get Reprimand Over Babies’ Burns Suffered During
Circumcisions, ATLANTIC J. & CONST. November 8, 1986, at B1 and
Joan McQueeney Mitric, Merits of Circumcision A Subject of Dispute
Disfigurement Leads to Two Lawsuits in Atlanta, WASH. POST, Oct. 23,
1986, at Z9 (reporting that two babies, on the same day, were burned
during circumcision and one underwent sex-change surgery because of the
severity of tissue destruction).
|
[14] |
|
The
plan was developed as follows, “The parents agonized their way to a
decision, implementing it with a change of name, clothing and hairstyle
when the baby was seventeen months old. Four months later, the surgical
first step of genital reconstruction as a female was undertaken, the
second step, vaginoplasty, being delayed until the body is full grown.
Pubertal growth and feminization will be regulated by means of hormonal
therapy with estrogen.” MONEY & EHRHARDT, MAN & WOMAN, supra
note __, at 118-19. The child underwent an orchiectomy (surgical
removal of testicles) and preliminary surgery before age two. Diamond
& Sigmundson, Sex Reassignment, supra note __, at 298, 299.
|
[15] |
|
The
names are pseudonyms, Sex Reassignment, supra note __, at 299;
Colapinto, supra note __. Kitzinger writes: “The John/Joan case is
still amongst the most widely cited studies in social science textbooks
on gender issues. Its popularity with textbook authors is due, in part
to the . . . nature of a case [which seems better suited to science
fiction than science]. Celia C. Kitzinger, Gender, Sex and Knowledge:
The construction of the John/Joan Case in Social Science Textbooks (In
press).
|
[16] |
|
MONEY & EHRHARDT, MAN & WOMAN, supra note __, at 119.
|
[17] |
|
Diamond
& Sigmundson, Sex Reassignment, supra note __, at 302.
Interestingly, in a book published in 1968 Money had written: “. . . it
used to be commented in passing that when a new announcement of sex was
necessary, the parents should move to a new town, find a new job, sever
all connections with the past, and start life anew. I have found that
this formula is completely untenable.” JOHN MONEY, SEX ERRORS OF THE
BODY: DILEMMAS, EDUCATION, COUNSELING” 61 (1st ed. 1968) [hereinafter
SEX ERRORS 1968] at 61.
|
[18] |
|
See Colapinto, supra note __, at 68.
|
[19] |
|
See Colapinto, supra note __, at 55.
|
[20] |
|
Money reported:
|
|
|
|
Regarding
domestic activities, such as work in the kitchen and house
traditionally seen as part of the female’s role, the mother reported
that her daughter copies her in trying to help her tidying and cleaning
up the kitchen, while the boy could not care less about it. She
encourages her daughter when she helps her in the housework.
|
|
|
MONEY
& EHRHARDT, MAN & WOMAN, supra note __, at 121. However, he
continued, “[t]he girl had many tomboyish traits, such as abundant
physical energy, a high level of activity, stubbornness, and being
often the dominant one in a girls’ group. Id. at 122.
|
[21] |
|
See Colapinto, supra note __, at 68.
|
[22] |
|
MONEY
& EHRHARDT, MAN & WOMAN, supra note __, at 120. The mother
noted times when the girl had “penis envy” on seeing her twin brother’s
penis in the bath. Id. at 121.
|
[23] |
|
P.
Williams & M. Smith, Open Secret: The First Question. Science
Series, BBC Television Production; Milton Diamond, Sexual Identity,
Monozygotic Twins Reared in Discordant Sex Roles and a BBC Follow-up,
11 ARCH. SEXUAL BEH. 181 (1982) [hereinafter BBC Follow-up].
|
[24] |
|
BBC Follow-up, supra note __, at 183.
|
[25] |
|
Colapinto
writes that Money did have further contact with the twins but this was
not reported upon. See Colapinto AS NATURE MADE HIM at 149.
|
[26] |
|
Diamond & Sigmundson, Sex Reassignment, supra note __; Colapinto, supra note __, at 71.
|
[27] |
|
Diamond & Sigmundson, Sex Reassignment, supra note __, at 300.
|
[28] |
|
See infra notes __.
|
[29] |
|
More
remarkably, it now appears that prior to the J/J reports in the 1970s,
data were available suggesting that intersex individuals left to
develop without surgery, nevertheless, generally made satisfactory
adjustments. Significantly, these data gathered in the 1950s by John
Money went unreported in the professional literature. Had they been
reported it most likely would have mitigated against the adopted
surgical method of treatment. See John Colapinto, AS NATURE MADE HIM at
227-229.
|
[30] |
|
After
the widely publicized report on the J/J case by Diamond and Sigmundson
in 1987, Money, in 1998, acknowledged the failure of treatment but
theorized that other variables including surgical delay may have caused
the child to reject the assigned gender. See MONEY, SEX POLICE, supra
note __, at 314-319. Colapinto reported that in 1975 Money knew that
Joan had sexuality fantasies about girls, her father reports that Money
asked him “how they felt about raising a lesbian,” yet this “clinical
finding was not in his next report on the twins which appeared in
1975.” Colapinto, supra note __, at 70. According to Colapinto, despite
the child’s refusal to have any further corrective surgery in
adolescence and admitting attraction to the female figure, Colapinto
described Money’s 1975 article as a “more glowing report than the one
from three years before.” Id.
|
[31] |
|
See infra notes __.
|
[32] |
|
Diamond
had challenged Money’s theories since the 1960s, but Money would not be
dissuaded by critics. MONEY & EHRHARDT, MAN AND WOMAN, supra note
__, at 154 (citing and criticizing works of Diamond (among others) who
challenged correctness of early surgical intervention). Money continues
to defend his work. See JOHN MONEY, SIN, SCIENCE, AND THE SEX POLICE:
ESSAYS ON SEXOLOGY AND SEXSOPHY 314-323 (1997) [hereinafter SEX POLICE]
(responding to critics, including Milton Diamond).
|
[33] |
|
In
1994, co-author of this article, Milton Diamond, located the twin with
the assistance of H. Keith Sigmundson, a psychiatrist with the Ministry
of Health in Victoria, British Columbia. Sigmundson had treated J/J
under Money’s supervision. It took Diamond some dozen years to locate
and contact Sigmundson.
|
[34] |
|
Although
initially reluctant to cooperate with Diamond in following up this
case, Sigmundson was finally convinced that to do so was in the
greatest interest of medicine. Sigmundson confesses that he knew of
Diamond’s persistent attempts at contacting him, “but I couldn’t bring
myself to answer it.” Colapinto, supra note __, at 92. He admitted to
being “shit-scared of John Money…. He was the big guy. The guru. I
didn’t know what it would do to my career.” Id. John, now a married
man, agreed at Sigmundson’s and Diamond’s urging to cooperate after he
learned of his textbook fame “as a success”, in his own effort to stop
this form of treatment on others. Id. at 94.
|
[35] |
|
Diamond & Sigmundson, Sex Reassignment, supra note __, at 300; Colapinto, supra note __, at 92.
|
[36] |
|
Diamond & Sigmundson, Sex Reassignment, supra note __, at 300.
|
[37] |
|
Id.
|
[38] |
|
Id.
|
[39] |
|
Colapinto, supra note __, at 70.
|
[40] |
|
Colapinto, AS NATURE MADE HIM at 54.
|
[41] |
|
Colapinto, supra note __, at 72, 92.
|
[42] |
|
Diamond & Sigmundson, Sex Reassignment, supra note __, at 300.
|
[43] |
|
Id.
at 301. The testicles are the prime source of androgens (male
hormones). These substances are needed for normal male development and
every-day processes.
|
[44] |
|
Id. at 300.
|
[45] |
|
Id at 302.
|
[46] |
|
Id.
at 301. (While J/J’s testicles were removed, he still retains his
accessory glands --prostate and seminal vesicles-- and these, more than
sperm, contribute the bulk of semen.).
|
[47] |
|
Diamond & Sigmundson, supra note __.
|
|
|
|
|
[48] |
|
See
generally Mark A. Hall, The Defensive Effect of Medical Practice
Policies in Malpractice Litigation, 54 SPG- LAW & CONTEMP. PROBS.
119, 126-29 (1991).
|
[49] |
|
See
NATIONAL COMMISSION FOR THE PROTECTION OF HUMAN SUBJECTS OF BIOMEDICAL
AND BEHAVIORAL RESEARCH, THE BELMONT REPORT: ETHICAL PRINCIPLES AND
GUIDELINES FOR THE PROTECTION OF HUMAN SUBJECTS OF RESEARCH 3 (1979)
[hereinafter BELMONT REPORT]. The Belmont Report remains a cornerstone
of the National Institutes of Health’s guidelines of human subject
research. See PROTECTING HUMAN RESEARCH SUBJECTS INSTITUTIONAL REVIEW
BOARD GUIDEBOOK xxi-xxiii & Appendix 6 (DHHS 1993) [hereinafter
HUMAN RESEARCH SUBJECTS].
|
[50] |
|
BELMONT REPORT, supra note __, at 3.
|
[51] |
|
Dale
H. Cowan, Innovative Therapy Versus Experimentation, 21 TORT & INS.
L.J. 619, 621 (1986) (quoting NATIONAL COMMISSION, REPORT &
RECOMMENDATIONS: RESEARCH INVOLVING CHILDREN (DHEW Pub. No. (OS)
77-0004, 1977). See also Dieter Giesen, Civil Liability of Physicians
for New Methods of Treatment and Experimentation: A Comparative
Examination, 3 MED. L. REV. 22 (1995). See also BARRY FURROW, et. al, 1
HEALTH LAW § 6-5, at 386 (1995) (discussing medical innovation).
|
[52] |
|
Cowan, supra note __, at 621; Giesen, supra note __, at 33.
|
[53] |
|
Id. at 622.
|
[54] |
|
BELMONT
REPORT, supra note __, at 3; Giesen, supra note __, at 33. When
experimentation follows innovation, institutional review boards provide
an early airing and review of ethical issues. No such review occurs
when innovative therapy becomes standard in an ad hoc fashion.
|
[55] |
|
Others
have noted this phenomenon with regard to medical practices that become
standard before validation. For instance D. H. SPODICK, 1973. The
surgical mystique and the double standard. AMERICAN HEART JOURNAL,
85:579-583. found, after reviewing 70 reports in specialty journals
appearing in 1971, 9 of 16 medical treatment studies were controlled;
none of 49 studies of surgical intervention involved a controlled
study. Consider:
|
|
|
|
There
follows a period during which the innovation (having received
professional and public support and legitimization through state
endorsement and third-party coverage) achieves the privileged status of
a “standard procedure.” For a period of time it becomes generally
accepted by interested parties as the most appropriate way of
proceeding with a particular problem or situation. It is probably
incorrect to refer here to the activity as an “innovation” … since at
this stage it has graduated from being just another promising
performance (something new with great potential) to the position of
being an established and respected activity. Although there is a bias
against reporting unsuccessful or untoward performances, they certainly
occur but are usually dismissed as infrequent, the result of having
poor material to work with, public misunderstanding, and so forth. So
entrenched has the activity become that it takes rare courage for any
individual or group even to question its effectiveness or desirability.
To do so, as we shall see, is to invite retaliation from professional
organization interests, public indignation, and even in rare cases
sanctions from the state (at 387-388).
|
|
|
John
B. McKinlay, From Promising Report to Standard Procedure: Seven Stages
in the Career of a Medical Innovation, 59 MILBANK Q. 374, 87-89 (1981).
See also Margaret Lent, Note, The Medical and Legal Risks of the
Electronic Fetal Monitor, 51 STAN. L. REV. 807 (1999). Lent explains
that fetal monitoring to avoid hypoxia during deliverybecame standard
care in the 1970s before scientific validation of itsefficacy. Id. at
812. Over the years, use has expanded beyond high risk deliveries so
that this technique is now used for 83% of all American births.Id. Now,
in twelve randomized control studies, with one exception, none suggest
that electronic fetal monitoring decreases fetal mortality. Id. at 813.
Moreover, in one study, the fetal monitored group actually suffered an
increase in neurological disorders. Id. In sum, the overwhelming
scientific studies dispute its efficacy. Id. at 814-15. Nevertheless,
routine fetal monitoring with its attendant increased cost in time and
effort remains an entrenched practice in delivery, perhaps out of fear
of legal liability for abandoning an established standard, id. at
822-23, or “professional inertia.” Id. at 808.
|
[56] |
|
Nancy
M.P. King & Gail Henderson, Treatments of Last Resort: Informed
Consent and the Diffusion of New Technology, 42 MERCER L. REV. 1007
(1991). Grimes, D. A. 1993. Technology follies: the uncritical
acceptance of medical innovation. JOURNAL OF THE AMERICAN MEDICAL
ASSOCIATION), 269: .”The need for ongoing assessment of both new and
old medical technologies is undeisputed. Nevertheess, much if not most,
of contemporary medical practice still lacks a scientific foundation.”
at ___.
|
[57] |
|
Id. at 1013; see also McKinlay, supra note __, at 376.
|
[58] |
|
See
McKinlay, supra note __, at 381 (1981); Donald E. Kacmar, The Impact of
Computerized Medical Literature Databases on Medical Malpractice
Litigation: Time for Another Helling v. Carey Wake-Up Call?, 58 OHIO
ST. L.J. 617, 631-32 (1997) (noting that “comments, articles and
reports” about a treatment often “snowball into consensus” without
validation, and cautioning, “[t]his cycle can impede the adoption of
new, better policies and continue adherence to traditional ones”).
|
[59] |
|
See
King & Henderson, supra note __, at 1021 (citing OFFICE OF
TECHNOLOGY ASSESSMENT, 98th Cong., 1st Sess., THE IMPACT OF RANDOMIZED
CLINICAL TRIALS ON HEALTH POLICY AND MEDICAL PRACTICE: BACKGROUND PAPER
(Aug. 1983). See Lent, supra note __, at 811-13.
|
[60] |
|
See
McKinlay, supra note __, at 376; Kacmar, supra note __, at 642
(commenting “doctors tend to look to informal information sources, such
as other colleagues, for answers in lieu of looking outside their own
medical circles for new studies, data, or procedures”); King &
Henderson, supra note __, at 1022-24 (identifying this phenomenon as
part of the conceptual conflict “at the heart of medicine, Is medicine
essentially science or essentially treatment?” Id.
Some
argue that all medicine should be subject to evidence-based practices
rather than anecdotal transmission of procedures. See D.L. Sackett, D.
L., et al., Evidence-based Medicine: how to practice & teach EBM __
(1997).
|
[61] |
|
See
Kacmar, supra note __, at 631-32; Wilson & Reiner, supra note __,
at 367 (commenting, “As with many clinical paradigm shifts, in the
absence of data, adherents of each protocol become increasingly
dogmatic that their preferred approach is better for the patient, and
that it would be unethical to subject the patient to the other ‘less
acceptable’ treatment. Individual clinicians’ attachment to specific
treatment regimes result in the ongoing polarization of paradigms.”).
|
[62] |
|
McKinley, supra note ____, at 379.
|
[63] |
|
MILTON DIAMOND, 1998. Intersexuality: Recommendations for Management. ARCHIVES OF SEXUAL BEHAVIOR, 27:634-641. at 638.
|
[64] |
|
See
SACKETT, supra note ____, at ____ (“Contemporary medicine is
increasingly calling for practice to follow data and research rather
than anecdote and past practices for the sake of tradition ”).
|
[65] |
|
The
kinds of surgeries performed on infants with genital anomalies are
numerous. Sex reassignment is the most radical, but other surgeries
also have erotic and reproductive ramifications. See KESSLER, supra
note __, at 40-64 (discussing surgical interventions); Diamond &
Sigmundson, Management of Intersexuality, supra note __, at 1047-48
(discussing nonsurgical options); MONEY, SEX ERRORS, supra note __, at
52-55 (discussing surgical interventions).
|
[66] |
|
John Money, et al., see note _____.
|
[67] |
|
Diamond
& Sigmundson, Sex Reassignment, supra note __, at 298-99. In his
most recent book, Money contends that other researchers early on
misstated his contention that sex could be changed up until the age of
two; that he had always asserted that “the crucial age is somewhere
around eighteen months.” MONEY, SEX POLICE, supra note __, at 313.
However, he was less clear in his original writings, “the critical
period is reached by about the age of eighteen months. By the age of
two and one-half years, gender role is already well established.” Id.
at 312 (quoting his work from 1955). He now contends that J/J’s
disastrous outcome could be the result of parental delay in surgery
until 22 months (among other possibilities). Id. at 319. However, he
also notes that J/J’s “social reassignment” had occurred at seventeen
months. Id. at 315.
|
[68] |
|
Dreger, supra note __, at 29 (noting that it is easier to surgically construct a “functional” vagina than a penis).
|
[69] |
|
The J/J case might be considered the “ground zero” case for justifying this standard of care.
|
[70] |
|
MONEY & EHRHARDT, supra note __.
|
[71] |
|
See,
e.g., KESSLER, supra note __, at 6-7, 13-14 (“According to all of the
specialists interviewed, management of intersexed cases is based upon
the theory of gender proposed first by John Money, J.G. Hampson, and
J.L. Hampson in 1955 and developed in 1972 by Money and Anke A.
Ehrhardt” that “gender identity is changeable until approximately
eighteen months of age.”).
|
[72] |
|
See generally DREGER, supra note __, at 181-82; Dreger, supra note __, at 27; KESSLER, supra note __, at 6.
|
[73] |
|
Traumatic
injury, especially to male infants, although less common than intersex
births, occurs with sufficient frequency to appear in the literature as
well. See supra note __.
|
[74] |
|
Diamond
& Kipnis, Pediatric Ethics, supra note __, at 401; Dreger, supra
note __, at 29 (reporting on estimates of 1 in 500, 1 in 1,500, and an
even larger group of children with “cosmetically ‘unacceptable’
genitalia possibly subjected to repair in infancy); cf. W.H. Kutteh, et
al., Accuracy of Ultrasonic Detection of the Uterus in Normal Newborn
Infants: Implications for Infants with Ambiguous Genitalia, 5
ULTRASOUND OBSTETRICS GYNECOLOGY 109 (Feb. 1995) (estimating 1 in
5,000).
Kessler notes and discusses the
difficulty in determining the number of infants with intersex
conditions and genitalia anomalies. KESSLER, supra note __, at 135 n. 4.
At
any rate, J/J’s unusual case is certainly not alone in medical
literature. In another case study not lost to follow-up, a child lost
his penis through trauma. The child underwent sex reassignment but “in
adolescence the patient refused to continue hormonal medication and
requested sex reassignment as a boy.” Ochoa, supra note __, at 1116.
See also Cowley, supra note __, at 64 (reporting biographies and
discussing changing standard of care).
|
[75] |
|
Dreger explains why males were surgically turned into females whereas females were left as females:
|
|
|
|
clinicians
treating intersex children often talk about vaginas in these children
as the absence of a thing, as a space, a “hole,” a place to put
something. That is precisely why opinion holds that “a functional
vagina can be constructed in virtually everyone” -- because it is
relatively easy to construct an insensitive hole surgically.
|
|
|
Dreger,
supra note __, at 29; see also Diamond & Sigmundson, Sex
Reassignment, supra note __, at 298 (citing medical literature). While
there was no evidence that the constructed female genitalia would be a
better substitute, the simplistic thinking at that time, was that to be
a satisfactory sexually functioning woman meant only to have a female
appearing pudenda and a vagina suitable to accept a penis.
|
[76] |
|
See Wilson & Reiner, supra note __, at 362-63 (describing the treatment protocol of early surgery).
|
[77] |
|
See
KESSLER, supra note __, at 136 n. 10; Diamond & Sigmundson, Sex
Reassignment, supra note __, at 298 (citing medical texts). See e.g.,
P.K. Donahoe, et al., Clinical Management of Intersex Abnormalities, 28
CURRENT PROBLEMS IN SURGERY 517, 527 (Aug. 1991); KING, supra note __,
at 369-70 (reporting prevailing view, “Up to approximately 18 months of
age, sexual identity is not established and gender reassignment may be
well tolerated by the child”); Timing of Elective Surgery, supra note
__; Woodhouse, Ambiguous Genitalia, supra note __, at 689-90 (reporting
on prevailing view to reassign gender in cases of micropenis of less
than 2 cm).
|
[78] |
|
KESSLER,
supra note __, 12-32 (commenting that physicians refute recent critics
“with nothing more than generalities …. No documentation (anonymous or
otherwise) have been offered of adult intersexed who are pleased with
their treatment.”).; Diamond & Sigmundson, Sex Reassignment, supra
note __, at 298; Dreger, supra note __, at 27; Wilson & Reiner,
supra note __, at 367. See also Diamond, PEDIATRIC MANAGEMENT at 1025
calling for review of sex reassignments done over the past decades.
DAVID E., SANDBERG, HEINO F. L. MEYER-BAHLBURG, GAYA S. ARANOFF, JOHN
M. SCONZO, AND TERRY W. HENSLE. 1989. Boys with hypospadias: A survey
of behavioral difficulties. JOURNAL OF PEDIATRIC PSYCHOLOGY, 14:491-514
at 510. These authors studied boys with hypospadias and found a higher
degree of gender-atypical behaviors than in a group of other boys that
had various hospital surgical procedures. However, they also report
their findings: “indicating that the penis may be of less significance
in the process of gender development than previously thought, does not
stand alone. Several studies of normal child development have
demonstrated that nonanatomical characteristics, such as hair style and
clothing, are critical in children’s classification of other
individuals (and presumably themselves) according to sex.” This study
did not compare those with hypospadic surgery with those individuals
with hypospadias not having any surgery.
|
[79] |
|
Timing
of Elective Surgery, supra note __, at 590 (supporting this proposition
with four works authored or co-authored by Money and dating between
1957 and 1987: Money et al, Imprinting and the Establishment of Gender
Role, 77 ARCH. NEUROL. PSYCH. 333 (1957)); MONEY & EHRHARDT, MAN
& WOMAN, supra note __; John Money & B.F. Norman, Gender
Identity and Gender Transposition: Longitudinal Outcome Study of 24
Male Hermaphrodites Assigned As Boys, 13 J. SEX MARITAL THERAPY 75
(1987)).
|
[80] |
|
Suzanne Kessler has written of Money’s dominance in the field:
|
|
|
|
Almost
all of the published literature of intersexed infant case management
has been written or co-written by one researcher, John Money …. Even
the publications that are produced independently of Money reference him
and reiterate his management philosophy…. Even though psychologists
fiercely argue issues of gender identity and gender development,
doctors who treat intersexed infants seem untouched by those debates ….
Why Money has been so single-handedly successful in promoting his deas
about gender is a question worthy of a separate and substantial debate.
|
|
|
KESSLER,
supra note __, at 136 n. 10. See also Diamond & Sigmundson, Sex
Reassignment, supra note __, at 298 (describing Money’s dominance);
DREGER, supra note __, at 181-82 (describing dominance of Money in
developing the standards of care for intersex infants); Kitzinger,
supra note __ (discussing Money’s dominance).
Money’s
views have changed somewhat although he still approves sex reassignment
even in cases of traumatic amputation of the penis. See MONEY, SEX
ERRORS OF THE BODY AND RELATED SYNDROMES, 1994 , at 84 (writing of
total loss of penis: “All in all, it is a difficult situation,
regardless of the sex of rearing[,]” and on reassignment generally:
“the most expeditious rule to follow is that no child, after the
toddler age, should have a sex reassignment imposed on the basis of a
[physician imposed] dogmatically held principle.”) style="mso-spacerun:
yes"
|
[81] |
|
See
William Reiner, Sex Assignment in the Neonate With Intersex or
Inadequate Genitalia, AMER. J. OF DISEASES OF CHILDREN 1044 (Oct. 1999)
(discussing problem that children will reject the sex of rearing and
commenting “surgical reduction of an enlarged clitoris can at times
damage sensation and thus reduce orgasmic potential and genital
pleasure and, like ablation of the testes is irreversible.”); Dreger,
supra note __, at 28.
|
[82] |
|
AARONSON,
I. A. 1992. Sexual differentiation and intersexuality. In P. Kelalis,
P., L. R. King and A. B. Belman (eds.), CLINICAL PEDIATRIC UROLOGY, pp.
977-1014, at 1005, 1007, W. B. Saunders, Philadelphia. KESSLER, supra
note __, at 49; Dreger, History, supra note __, at 349 (commenting on
standard care for clitoral surgery, “If her clitoris is longer than 1
centimeter stretched at birth, surgeons will seek to surgically reduce
it because they think that it will bother the child’s parents and
interfere with bonding and gender identity formation.”).
|
[83] |
|
See
Wilson & Reiner, supra note __, at 363; Sherri A. Groveman, The
Hanukkah Bush: Ethical Implications in the Clinical Management of
Intersex, 9 J. CLINICAL ETHICS 356, 357-59 (1998). See also MONEY &
EHRHARDT, MAN & WOMAN, supra note __, at __; MONEY, SEX ERRORS,
supra note __, at __. There is no evidence presented by Money et al.
that parents of children born with physical handicaps are any less
bonded or otherwise protective or loving to their children. KESSLER,
supra note ____, at 91, on the other hand, presents cases where the
parents accept the intersex condition if it is presented well or have
severe misgivings for giving in to the physicians’ urging for surgery.
There also are studies that show that children might be aware of the
appearance of their own or peer’s genitals but don’t consider them
crucial for classification of gender until about the age of 9 (RONALD
GOLDMAN, AND JULIETTE GOLDMAN. 1982. CHILDREN'S SEXUAL THINKING: A
COMPARATIVE STUDY OF CHILDREN AGED 5 TO 15 YEARS IN AUSTRALIA, NORTH
AMERICA, BRITAIN, AND SWEDEN. Routledge & Kegan Paul, London,
England.)
|
[84] |
|
See
Reiner, Sex Assignment, supra note __; Dreger, supra note __, at 32
(noting a lack of long-term follow-up on females undergoing clitoral
surgery); Diamond & Sigmundson, Management of Intersexuality, supra
note __, at 1047; Cowley, supra note __, at 66 (reporting on study of
female pseudohermaphrodites (genetic females born with masculinized
external sex organs) wherein five of twelve surgically reduced
clitorises “had withered and died” as a result of surgical
intervention). Annie Green, writes: “Thirty-two years have passed since
my clitoris was taken from me. Though I was too young to be able now to
recall the event, I feel that I will be grieving the loss for the rest
of my life.” Annie Green, My Beautiful Clitoris, 2 CHRYSALIS 12 (1997).
And Cheryl Chase, an advocate for the intersexed, warns that better
clitoral surgery is not the proper response to an enlarged phallus.
Cheryl Chase, Surgical Progress Is Not the Answer to Intersexuality, 9
J. CLIN. ETHICS 385, 386-87 (1998). Physicians practicing today
acknowledge the surgical techniques of just a decade ago on clitoral
surgery yielded poor results. The comments of Associate Professor of
Urology and Pediatrics Laurence Baskin in response to a visit by ISNA
members to the University of California, San Francisco medical school
is revealing:
|
|
|
|
Baskin
admits that surgical technique in the past was not optimal. “The
surgery was done … by very well intended physicians, but we didn’t
understand the nerve supply well. We started to understand the nerve
supply [to the clitoris] 10 years ago.”
|
|
|
Althaea
Yronwode, Intersex Individuals Dispute Wisdom of Surgery on Infants,
SYNAPSE, March 11, 1999, available at
<http://itsa.ucsf.edu/~synapse/archives/mar11.99/yronwode.html>.[from
TRANSGENDER TAPESTRY, 1999:18-21, 32.
Kenneth
Glassberg continues to perform clitoral surgery for cosmetic reasons
while calling for long-term studies to evaluate the importance of the
clitoral tissue in preserving clitoral orgasm. GLASSBERG, 1998. The
intersex infant: Early gender assignment and surgical resconstruction.
JOURNAL OF PEDIATRIC AND ADOLESCENT GYNECOLOGY, 11:151-154. at 153.
|
[85] |
|
See
generally Joanne A. Liu, When Law and Culture Clash: Female Genital
Mutilation, A Traditional Practice Gaining Recognition as a Global
Concern, 11 N.Y. INT’L. L. REV. 71 (1998); Joleen C. Lenihan, A
Physician’s Dilemma, Legal Ramifications of an Unorthodox Surgery, 35
SANTA CLARA L. REV. 953 (1995). Both Kessler and Dreger liken the
surgical treatment of ambiguous genitalia for cosmetic and cultural
reasons to female genital mutilation. See KESSLER, supra note __, at
80-83; Dreger, supra note __, at 33-34.
|
[86] |
|
Milton
Diamond, Pediatric Management of Ambiguous Genitalia and Traumatized
Genitalia, __ J. UROLOGY __ (1999); Chase, Surgical Progress, supra
note __, at 386; Kipnis & Diamond, supra note __, at 402-03.
Meyer-Bahlburg has written: "Some female-assigned patients with a
history of clitoromegaly will end up changing their gender to male, and
in those cases, a history of clitorectomy or clitoral resection with
the reduction of loss of a penile organ altoghether causes great
regret. In my clinical experience, also some patients who live as
lesbian women would prefer if their enlarged clitoris had been left
intact." HEINO F. L. MEYER-BAHLBURG, 1998. Gender assignment in
intersexuality. JOURNAL OF PSYCHOLOGY & HUMAN SEXUALITY, 10:1-21 at
12.
|
[87] |
|
See Criminalization of Female Genital Mutilation Act, 18 U.S.C.A. § 116.
|
[88] |
|
Congressional Findings, at Pub. L. No. 104-208, § 645(a) (2), 110 Stat. 3009-708.
|
[89] |
|
18 U.S.C. § 116 (a).
|
[90] |
|
18
U.S.C. § 116 (b)(1). See KESSLER, supra note __, at 81-82 (commenting
on ISNA position that the language is sufficiently broad to cover some
intersex surgeries); Dreger, supra note __, at 34. Some suggest that
the act violates the equal protection because it protects females but
not males from the customary practice of circumcision. See Ross
Povenmire, Do Parents Have the Legal Authority to Consent to the
Surgical Amputation of Normal, Healthy Tissue from Their Infant
Children?: The Practice of Circumcision in the United States, 7 AM. U.
J. GENDER SOC. POL’Y 87, __ (1999).
|
[91] |
|
Congresswoman
Patricia Schroeder has written against the practice of genital
mutilation. Schroeder, 1994. Female genital mutilation-- a form of
child abuse. THE NEW ENGLAND JOURNAL OF MEDICINE, 331:739-740.
|
[92] |
|
For
elaboration on the distinctions between innovation, practice and
experimentation, see BELMONT REPORT, supra note __, at 3; Cowen, supra
note __; King & Henderson, supra note __; Karine Morin, The
Standard of Disclosure in Human Subject Experimentation, 19 J. Legal
Med. 157, 167 (1998).
|
[93] |
|
Pediatrics.
1996. Timing of elective surgery on the genitalia of male children with
particular reference to the risks, benefits, and psychological effects
of surgery and anesthesia. Pediatrics, 97:590-594.
|
[94] |
|
Cowley,
supra note __, at 66 (noting scarcity of both medical and psychological
studies); Ochoa, supra note __, at 1119 (calling for more study);
Woodhouse, supra note __, at 692 (questioning wisdom of sex
reassignment surgery in children with micropenis and lack of long-term
study); Diamond & Sigmundson, Sex Reassignment, supra note __, at
303 (noting lack of validating studies and need for long-term
follow-up); Kipnis & Diamond, Pediatric Ethics, supra note __, at
402; William Reiner, To Be Male or Female -- That is the Question, 151
ARCHIVE OF PEDIATRIC MEDICINE 224, 225 (1997) (calling for more
research and cautioning, “It may well be said that conclusions about
sex reassignment as described in much of the literature are erroneous
secondary to the conspicuous lack of such longitudinal data and
appropriate longitudinal analysis.”); Justine Marut Schober, A
Surgeon’s Response to the Intersex Controversy, 9 J. CLIN. ETHICS 393,
394 (1998) (noting lack of long-term studies regarding psychological
adjustment); Wilson & Reiner, supra note __, at 367; Diamond,
PEDIATRIC MANAGEMENT, The Journal of Urology 162 (1999) at 1026.
|
[95] |
|
Reiner,
To Be Male or Female, supra note __, at 225; Ochoa, supra note __, at
1119; Woodhouse, supra note __, at 692; William George Reiner, Case
Study: Sex Reassignment in a Teenage Girl, 35 J. AM. ACAD. CHILD &
ADOLESCENT PSYCH..799 (1996) [hereinafter Teenage Girl]; Reiner, Sex
Assignment supra note __ (noting his own studies with “18 children who
are 46, XY males with totally inadequate phalluses but normal testes
that were sex assigned to female, demonstrate that parents tend to be
uncomfortable with sex reassignment and children do not behave as
typical little girls.”).
|
[96] |
|
See
Diamond & Sigmundson, supra note __, at 302 (noting “cases of
infant sex reassignment require inspection after puberty; 5- and
10-year post sex reassignment are still insufficient”).
|
[97] |
|
The
medical community has become polarized on treatment issues. The Journal
of Clinical Ethic’s symposium issue on intersexuality reported, “The
parties in this discussion have become increasingly estranged. Alice
Domurat Dreger, guest editor of this special issue … informs us that
she invited some of those who have acted as proponents of infant
surgery to present their arguments, but none accepted.” Edmund G. Howe,
Intersexuality: What Should Careproviders Do Now?, 9 J. CLIN. ETHICS
337, 338 (1998). See also Wilson & Reiner, supra note __, at 367.
|
[98] |
|
Wilson
and Reiner note that there is “considerable support for the theory that
there may be a neurobiologic component to many gender identities” and
that gender may be influenced by hormone levels in the brain
“prenatally or immediately postnatally” and conclude, “[c]ertainly
gender identity involves more than the behaviors of the parents in
rearing children.”Wilson & Reiner, supra note _-, at 364. See also
Milton Diamond, Biological Aspects of Sexual Orientation and Identity,
in The Psychology of Sexual Orientation, Behavior and Identity: A
Handbook 48 (Greenwood Press, Westport, Connecticut) (L. Diamant &
R. McAnulty eds., 1995); M. Hines, Abnormal Sexual Development and
Psychosexual Issues, 12 BAILLIER’S CLIN. ENDOCRINOLOGY &
METABOLISM, 173, __ (1998) (nevertheless, Hines is reluctant to
recommend change in the “standard of care”); S. LeVay, & D.H.
Hamer, Evidence for a Biological Influence in Male Homosexuality,
SCIENTIFIC AMERICAN 44-49 (May 1994); D. Hamer, & P. Copeland,
LIVING WITH GENES: WHY THEY MATTER MORE THAN YOU THINK (1998); LeVay,
S., QUEER SCIENCE __ (1996).
|
[99] |
|
Diamond and Sigmundson explain:
|
|
|
|
Most
intersex conditions can remain without any surgery at all. A woman with
a phallus can enjoy her hypertrophied clitoris and so can her partner.
Women with AIS or virilizing CAH who have smaller-than-usual vaginas
can be advised to use pressure dilations to fashion one to facilitate
coitus; a woman with partial AIS likewise can enjoy a large clitoris. A
male with hypospadias might have to sit to urinate without mishap but
can function sexually without surgery. A person with a micropenis can
satisfy a partner and father children.
|
|
|
Diamond
& Sigmundson, Management of Intersexuality, supra note __, at 1049.
See also Dreger, supra note __, at 29-32; A. Lev-Ran, Gender Role
Differentiation in Hermaphrodites, 3 ARCHIVES SEXUAL BEHAV., 391-424
(1974) (describing numerous cases where individuals adapted to gender
atypical genitalia).
|
[100] |
|
See KESSLER, supra note __, at 105-32; Dreger, supra note __, at 94.
It
is, unfortunately, only recently that it has been revealed that a study
of more than 250 intersexed individuals who received no surgical
intervention as babies was conducted prior to 1952 but left unpublished
in the professional literature. The review by John Money found: “Far
from manifesting psychological traumas and mental illnesses, the study
showed, the majority of patients rose above their genital handicap and
not only made an ‘adequate adjustment’ to life, but lived in a way
virtually indistinguishable from people without genital difference.”
See JOHN COLAPINTO, at 227. One can only conjecture as to why this
study was never mentioned nor considered by its author after its
presentation as a senior dissertation at Harvard (available by written
application to the Widener Library at Harvard University).
|
[101] |
|
Ochoa, supra note __, at 1118-19.
|
[102] |
|
See
generally HARRY BENJAMIN, THE TRANSSEXUAL PHENOMENON __ (1966); Milton
Diamond, Self-Testing Among Transsexuals: A Check on Sexual Identity, 8
J. PSYCH. & HUMAN SEXUALITY 61, __ (1996).
|
[103] |
|
See
Bockting, W. O., and E. Coleman. 1992. GENDER DYSPHORIA:
INTERDISCIPLINARY APPROACHES IN CLINICAL MANAGEMENT, The Haworth Press,
New York; Bullough, B., V. L. Bullough, and J. Elias. 1997. GENDER
BLENDING. Prometheus Books, Amherst, New York.; Devor, H. 1989.
GENDER BLENDING: CONFRONTING THE LIMITS OF DUALITY. Indiana University
Press, Bloomington, Indiana.
|
[104] |
|
Diamond,
Ambiguous and Traumatic, supra note __ at 1023. See also Reiner, To Be
Male or Female, supra note __, at 225 (reporting on his ongoing
research and stating that he is following fifteen 46 XY children who
were castrated at birth due to genital anomalies, stating that although
reared as females the patients “do not appear to be classically male or
female but display masculine characteristics that are in many cases
quite striking”); A recent article reports of one individual who was
sex reassigned and, at the age of 28, remains living as a woman. She,
however, has a male-identified job and is ambisexually oriented and
presently living with a female sexual partner. See Susan J. Bradley, et
al., Experiment of Nurture: Ablatio Penis at 2 Months, Sex Reassignment
at 7 Months Psychosexual Follow-up in Young Adulthood, 102 PEDIATRICS 1
(1998) (full text available at
<http://www.pediatrics.org/cgi/content/full/102/1/e9)>.
|
[105] |
|
Reports of adverse outcomes have been met with ambivalence in the medical community.
|
|
|
|
More
recently, surgeons have been criticized because they have not accorded
enough weight to patients’ reports of adverse outcomes. There is a
psychological reason that careproviders may ignore reports of adverse
outcomes: if the claims are true, surgeons would have to acknowledge
that performing surgery was a mistake. This would be exceedingly
painful. The only way to avoid this pain would be to deny that these
claims are true.
|
|
|
Howe, supra note __, at 338.
|
[106] |
|
ISNA,
Recommendations for Treatment Intersex Infants and Children, available
at <http://www.isna.org/recommendations.html>(last visited April
2, 1999) [hereinafter ISNA Recommendations]. Money reserves
particularly harsh criticism for ISNA, labeling the organization as
“militantly activist” in advocating raising the intersex child as an
“it,” which he regards as a step backward. MONEY, SEX, SIN, supra note
__, at 320-21. ISNA has never advocated raising children as “its.” They
advocate sexual assignment but without any surgery. So too does
Diamond, advocate raising the child in a clear gender but without
cosmetic genital altering surgery. UROLOGY at 1025. Kenneth Glassberg,
on the other hand, argues “There are no data to support the benefits of
delayed assignment or treatment of these infants and I can’t imagine
any parent, without whose wholehearted cooperation any treatment
program will fail, accepting such an approach.”KENNETH I. GLASSBERG,
1999. Editorial: Gender assignment and the pediatric urologist. THE
JOURNAL OF UROLOGY, 161:1308-1310. at 1308.
|
[107] |
|
See, e.g., Groveman, supra note __, at 356; Chase, supra note __, at 385.
|
[108] |
|
See
Diamond & Sigmundson, supra note __, at 298 (discussing and citing
medical literature recommending sex reassignment based on surgical
potential); see also KESSLER, supra note _, at 108-109 (discussing
criteria for surgery in females and males); Donahoe, supra note __, at
527 (commenting, “[g]enetic females should always be raised as females,
preserving reproductive potential, regardless of how severely the
patients are virilized. In the genetic male, however, the gender of
assignment is based on the infant’s anatomy, predominantly the size of
the penis”); Newman, supra note __, at 645 (commenting, “In practical
terms, regardless of the genotype, most children with ambiguous
genitalia are best suited for the female role.”).
|
[109] |
|
See KESSLER, supra note __, at 34-35; MONEY, MAN/WOMAN, supra note __, at 178-79; MONEY, SEX ERRORS, supra note __, at 82.
|
[110] |
|
See,
e.g., Donahoe, supra note __, at 527 (“[I]t cannot be overly stressed
that the 46 XY [genetic male] Karyotype does not dictate rearing the
child as a male if the phallus is inadequate in size…. If the phallus
length is less that 2.0 cm and certainly less that 1.5 cm, we are quite
concerned….”); Lowell King, supra note __, at 369.
|
[111] |
|
Some
but not all intersex and ambiguous conditions impact reproductive
capacity. Standard care encourages preservation of female reproductive
capacity but decisions as to males is based on penis size, not
reproductive capacity. See Patricia K. Donahoe, Clinical Management of
Intersex Abnormalities, 28 CURRENT PROBLEMS SURGERY 517, 527 (Aug.
1991).
|
[112] |
|
MONEY, SEX ERRORS, 2nd ed, supra note __, at 66.
|
[113] |
|
See
generally FURROW, supra note __, at § 6-2, at 361; Sam A. McConkey,
Simplifying the Law in Medical Malpractice: The Use of Practice
Guidelines as the Standard of Care in Medical Malpractice Litigation,
97 W. VA. L. REV. 491, 496-97 (1995).
|
[114] |
|
The T. J. Hooper, 60 F.2d 737 (2d Cir. 1932).
|
[115] |
|
Id. at 739.
|
[116] |
|
Texas Pac. Ry. v. Behymer, 189 U.S. 468, 470 (1903) (Holmes, J.).
|
[117] |
|
60 F.2d at 739.
|
[118] |
|
Toth v. Community Hospital at Glen Cove, 239 N.E.2d 368, 373 (N.Y. App. 1968); FURROW, supra note __, at 359-62.
|
[119] |
|
Gorab v. Zook, 943 P.2d 423, 427 (Colo. 1997) (en banc).
|
[120] |
|
Id. (quoting Colorado Jury Instruction 15:2).
|
[121] |
|
See Turner v. Children’s Hosp., Inc., 602 N.E.2d 423, 427 (Ohio App. 1991).
|
[122] |
|
Id. at 427.
|
[123] |
|
See
Harris v. Groth, 663 P.2d 113, 115 (Wash. 1983) (en banc); See
generally Hall, supra note __, at 126-27 (noting distinction between
“garden-variety tort cases” where jury is “ultimate arbiter” and
medical malpractice where “jurors are instructed to judge physicians
not by the jury’s sense of what is right, but by the custom that
prevails in the profession”); Gary T. Schwartz, Medical Malpractice,
Tort, Contract and Managed Care, 1998 U. ILL. L. REV. 885, 890.
The
existence of a uniform standard of care is probably more of a legal
fiction than medical profession fact. See Hall, supra note __, at 121
n.10, 128-30 n. 38 (commenting “the law has always presumed the
existence of that which does not exist -- established, concrete
professional standards”).
|
[124] |
|
Craft
v. Peebles, 893 P.2d 138, 147 (Haw. 1995) (“It is well settled that in
medical malpractice actions, the question of negligence must be decided
by reference to relevant standards of care for which plaintiff carries
the burden of proving through expert testimony.”). See also FURROW,
supra note __, at 361 (commenting that “[t]he standards for evaluating
the deliver of professional medical services are not normally
established by either judge or jury”).
|
[125] |
|
Helling
v. Carey 519 P.2d 981 (Wash. 1974) (citing The T.J. Hooper, 60 F.2d 737
(2d Cir. 1932) (holding that irrespective of medical standards,
reasonable prudence would require providing inexpensive pressure tests
to all opthalmological patients where the test is inexpensive and
simple).
|
[126] |
|
Id. at 982.
|
[127] |
|
Id.
|
[128] |
|
Id. at 983.
|
[129] |
|
Id.
|
[130] |
|
Id.
|
[131] |
|
In
Harris v. Robert C. Groth, M.D., Inc., 663 P.2d 113 (1983), the
Washington Supreme Court recounted the professional and legislative
reaction to its decision in Helling v. Carey, 519 P.2d 981 (Wash.
1974). Harris, 663 P.2d at 115-16. Notably, Harris held that even
following the legislature’s purported overruling of Helling, Washington
continues to hold to a “reasonably prudent” physician and that “the
degree of care actually practiced by members of the profession is only
some evidence of what is reasonably prudent, it is not dispositive.”
Id. at 120. See Lent, supra note __, at 829-30.
|
[132] |
|
FURROW,
supra note __, at 361 (“Most jurisdictions … have been reluctant to
follow Helling in replacing the established medical standard of care
with a case-by-case judicial balancing.”). Cases in apparent accord
with Helling include: United Blood Services, Div. of Blood Systems,
Inc. v. Quintana, 827 P.2d 509, 520 (Colo. 1992) (en banc) (“If the
standard adopted by a practicing profession were to be deemed
conclusive proof of due care, the profession itself would be permitted
to set the measure of its own legal liability, even though that measure
might be far below a level of care readily attainable through the
adoption of practices and procedures substantially more effective in
protecting others against harm than the self-decreed standard of the
profession.” but holding that expert testimony is necessary to
establish that one school of practice’s standard of care is
unreasonably deficient); Nowatske v. Osterloh, 543 N.W.2d 265 (Wis.
1996) (denying that traditional malpractice standard differs from
ordinary negligence); Townsend v. Kiracoff, 545 F. Supp. 465 (D. Colo.
1982) (citing The T.J. Hooper, 60 F.2d 737 (2d Cir. 1932) (“even if the
defendant’s affidavits and evidentiary materials could establish that
the hospital acted in accordance with the standard of care and custom
of the community of Colorado hospitals, the plaintiff would still be
entitled to prove at trial that the entire community’s custom is
negligent”); Turner v. Children’s Hospital, 602 N.E.2d 423, 427 (Ohio
App. 1991) (stating, “although customary practice is evidence of what a
reasonably prudent physician would do under like or similar
circumstances, it is not conclusive in determining the applicable
standard required.”).
|
[133] |
|
See,
e.g., Osborn v. Irwin Memorial Blood Bank, 7 Cal. Rptr.2d 101, 125-126
(Cal. App. 1992) (rejecting Helling v. Carey, and noting that most
commentary and case law has been critical of the case); Schwartz, supra
note __, at 890; Clark Havighurst, Private Reform of Tort-Law Dogma:
Market Opportunities and Legal Obstacles, 49 LAW & CONTEMP. PROBS
143, 159 n. 45 (1986). But see Dan Dobbs, et al., Prosser and Keeton on
the Law of Torts § 33 at 30 n. 53 (noting “increasing number of courts
rejecting customary practice standard in favor of reasonable care or
reasonably prudent doctor standard” and citing cases) (5th ed. 1988
pocket part); Theodore Silver, One Hundred Years of Harmful Error: The
Historical Jurisprudence of Medical Malpractice, 1992 WIS. L. REV.
1193,1212-1219 (arguing for a return to negligence principles).
|
[134] |
|
Schwartz,
supra note __, at 890.; see also Gary T. Schwartz, The Beginning and
the Possible End of the Rise of Modern American Tort Law, 26 GA. L.
REV. 601, 663-64 (1992) [hereinafter Modern American Tort Law] (noting
that Helling v. Carey has not garnered support, “[malpractice]
conservatism has largely survived the 1980s”); cf. Richard E. Leahy,
Rational Health Policy and the Legal Standard of Care: A Call for
Judicial Deference to Medical Practice Guidelines, 77 CALIF. L. REV.
1483, 1502-06 (1989) (arguing that courts and juries have too much
independence to establish and judge the medical standard of care and
proposing judicial deference to professionally promulgated guidelines).
|
[135] |
|
See
Kacmar, supra note __, at 631-32 (noting in malpractice actions there
is substantial reliance on the medical profession to define its own
standard of care and lack of incentive to keep abreast); Silver, supra
note __, at 1212-19; Leahy supra note __, at 1495-97.
|
[136] |
|
Kacmar, supra note __, at 643.
|
[137] |
|
See
Rooney v. Medical Center Hosp. of Vermont, 649 A.2d 756, 759 (Vt. 1994)
(“To practice the profession of medicine, a physician is not required
to be possessed of the extraordinary knowledge and ability that belongs
to the few practitioners of rare endowments. But the physician is
required to keep abreast of new techniques and knowledge and to
practice in accordance with the approved methods and means of treatment
in general use [in his field].”). See also Kacmar, supra note __, at
641.
|
[138] |
|
Id. (citing Angela Roddey Holder, Failure to “Keep up” as Negligence, 224 JAMA 1461, 1462 (1973)).
|
[139] |
|
Schwartz, American Tort Law, supra note __, at 664.
|
[140] |
|
See
Hood v. Philips, 537 S.W.2d 291, 294 (Tex. App. 1976) (holding “a
physician is not guilty of malpractice where the method of treatment
used is supported by a respectable minority of physicians, as long as
the physician has adhered to the acceptable procedures of administering
treatment as espoused by that minority”). See also Schwartz, American
Tort Law, supra note __, at 664-65 (commenting that traditional tort
law has held that “when intelligent doctors can disagree, the defendant
cannot be found guilty of malpractice”); Joan P. Dailey, Comment, The
Two Schools of Thought and Informed Consent Doctrines in Pennsylvania:
A Model for Integration, 98 DICK. L. REV. 713 (1994).
|
[141] |
|
An
alternative view is possible, one in which the two schools might be
measured against one another. One court reasoned that where two schools
differ, “plaintiff should be permitted to present expert opinion
testimony that the standard of care adopted by the school of practice
to which the defendant adheres is unreasonably deficient by not
incorporating readily available practices and procedures substantially
more protective against the harm caused to the plaintiff than the
standard of care adopted by the defendant’s school of practice.” United
Blood Services v. Quintana, 827 P.2d 509, 521 (Colo. 1992) (en banc).
|
[142] |
|
Furrow
notes that “clinical innovation allows physicians to vary standard
treatment to suit the needs of a particular patient, where the patient
presents a particular problem or desperate situation.” FURROW, supra
note __, at § 6-5, at 385. However, he notes that courts rarely allow
such a defense except in instances “when conventional treatments are
largely ineffective or where the patient is terminally ill and has
little to lose by experimentation with potentially useful
treatments.”Id.
|
[143] |
|
Osborn v. Irwin Memorial Blood Bank, 7 Cal. Rptr.2d 101, 125-26 (Cal. App. 1992) (citations omitted).
|
[144] |
|
In
the case of surgical treatment for cases of ambiguous it is probably
more a matter of “following the leader” rather than ignorance.
|
[145] |
|
See supra notes __.
|
[146] |
|
MONEY, SEX ERRORS, 1st ed., supra note __, at 48.
|
[147] |
|
MONEY, SEX ERRORS, 1st ed., supra note __, at 93.
|
[148] |
|
King & Henderson, supra note __, at 1021; see also Lent, supra note __, at 808.
|
[149] |
|
United
Blood Services v. Quintana, 827 P.2d 509, 520 (Colo. 1992) (en banc)
(quoting The T.J. Hooper, 60 F.2d 747, 740 (2d Cir. 1032).
|
[150] |
|
Id.
|
[151] |
|
See
Sackett et al, supra note ____ at 115-116. Four guides were offered for
the evaluation of a proposed medical guideline: 1) Were all important
decision options and outcomes clearly specified?; 2) Was the evidence
relevant to each decision option identified, validated and combined in
a sensible and explicit way?; 3) Are the relative preferences that key
stakeholders attach to the outcomes of decisions (including benefits,
risks and costs) identified and explicitly considered?; 4) Is the
guideline resistant to clinically sensible variations in practice?
|
[152] |
|
See Kacmar, supra note __, at 633-39.
|
|
|
|
|
|
[153] |
|
See
generally RUTH R. FADEN & TOM L. BEAUCHAMP, A HISTORY AND THEORY OF
INFORMED CONSENT (1986) (tracing history and discussing moral
underpinnings of informed consent doctrine in medical tradition).
|
|
[154] |
|
See
Susan D. Hawkins, Protecting the Rights and Interests of Competent
Minors in Litigated Medical Treatment Disputes, 64 FORDHAM L. REV.
2075, 2093-94 (1996)
|
|
[155] |
|
Cruzan
v. Director, Mo. Dep’t. of Health, 497 U.S. 261, 269 (1990) (quoting
Union Pacific R. Co. v. Botsford, 141 U.S. 250, 251 (1891).
|
|
[156] |
|
See
Hawkins, supra note __, at 2094-2102 (other interests include privacy,
to be free of unwanted physical invasions, and preservation of life);
James Bopp, Jr. & Richard E. Coleson, A Critique of Family Members
as Proxy Decisionmakers Without Legal Limits, 12 ISSUES L. & MED.
133, 134-35 (1996). See also Fiori v. Pennsylvania, 673 A.2d 905,
909-10 (Pa. 1996) (commenting, “[t]he right to refuse medical treatment
has deep roots in our common law…. [f]rom this right to be free from
bodily invasion developed the doctrine of informed consent”).
|
|
[157] |
|
Turner v. Children’s Hospital, Inc., 602 N.E.2d 423, 431 (Ohio App. 1991).
|
|
[158] |
|
Carr v. Strode, 904 P.2d 489, 493 (Haw. 1995).
|
|
[159] |
|
Wheeldon v. Madison, 374 N.W.2d 367, 375 (S.D. 1985) (citing Canterbury v. Spence, 464 F.2d 772, 787 (D.C. Cir. 1972)).
|
|
[160] |
|
See
generally Annotation, Modern Status of Views as to General measure of
Physician’s Duty to Inform Patient of Risks of Proposed Treatment, 88
A.L.R.3d 1008, §§ 3, 6-7; William J. McNichols, Informed Consent
Liability in a “Material Information” Jurisdiction: What Does the
Future Portend?, 48 OKLA. L. REV. 711, 716-17 (1995) (describing state
trends); Richard A. Heinemann, Pushing the Limits of Informed Consent:
Johnson v. Kokemoor and Physician Specific Disclosure, 1997 WISC. L.
REV. 1079, 1082-86 (discussing patient-oriented standard and describing
trends).
|
|
[161] |
|
See
Carr v. Strode, 904 P.2d 489, 490 (Haw. 1995) (tracing evolution of
standard and overruling prior case adopting physician-oriented
standard). The seminal case rejecting the physician-oriented standard
and adopting the patient-oriented standard is Canterbury v. Spence, 464
F.2d 772 (D.C. Cir. 1972). See also Congrove v. Holmes, 308 N.E.2d 765
(Ohio 1973); Arena v. Gingrich, 748 P.2d 547 (Or. 1988); Corrigan v.
Methodist Hosp., 869 F. Supp. 1202 (E.D.Pa. 1994); Wilkinson v. Vesey,
295 A.2d 676 (R.I. 1972); Shadrick v. Coker, 963 S.W.2d 726 (Tenn.
1998); Stripling v. McKinley, 746 S.W.2d 502, aff’d, 763 S.W.2d 407
(Tex. 1988).
|
|
[162] |
|
See
Gorab v. Zook, 943 P.2d 423, 428 n. 5 (Colo. 1997) (en banc) (noting
evidentiary differences between patient-oriented informed consent
doctrine and medical community standard of care).
|
|
[163] |
|
Id.
(emphasis in original). Physicians must provide information concerning
“material risks” and, at least in some jurisdictions, they must provide
information about alternative treatments. See Doe v. Johnston, 476
N.W.2d 28, 30-31 (Iowa 1991).
|
|
[164] |
|
Cooper
v. Roberts, 286 A.2d 647, 650 (Pa. 1971) (“As the patient must bear the
expense, pain and suffering of any injury from medical treatment, his
right to know all material facts pertaining to the proposed treatment
cannot be dependent upon the self-imposed standards of the medical
profession.”).
Cobbs v. Grant, 8 Cal 3d
229, 104 Cal. Rptr. 308, 611 P.2d 598 (1993) ("A medical doctor, being
the expert, appreciates the risks inherent in the procedure he is
prescribing, the risks of the decision not to undergo treatment and the
probability of a successful outcome of the treatment . . . The weighing
of these risks against the individual subjective fears and hopes of the
patient is not an expert skill. Such evaluation and decision is a
nonmedical judgement reserved to the patient alone.”) This language
explicitly requires physicians to explain the probability of success
and requires the physician to tell the patient what he means by
success. GEORGE J. ANNAS, 1994. Informed consent, cancer, and truth in
prognosis. THE NEW ENGLAND JOURNAL OF MEDICINE, 330:223-225, at 225.
|
|
[165] |
|
GEORGE
J. ANNAS, 1994. Informed consent, cancer, and truth in prognosis. THE
NEW ENGLAND JOURNAL OF MEDICINE, 330:223-225, at 225. (“Of course, the
doctrine of informed consent is based on the recognition that people
are not all the same and that physicians must let patients decide about
treatment options so that they do not treat them “always the same way
for everybody alike.”)
|
|
[166] |
|
Carr, 904 P.2d at 485.
|
|
[167] |
|
Canterbury, 464 F.2d at 789.
|
|
[168] |
|
See
Nishi v. Hartwell, 473 P.2d 116 (Haw. 1970), overruled on other
grounds, Carr v. Strode, 904 P.2d 489 (Haw. 1995) (patient’s fear and
apprehension justified not telling him of “collateral hazard” of
paralysis associated with diagnostic procedure regarding aneurysm).
|
|
[169] |
|
Nishi, 473 P.2d at 121.
|
|
[170] |
|
See
McNichols, supra note __, at 728-79 & n. 97 (noting scarcity of
decisions based upon therapeutic privilege defense). Compare Roberts v.
Wood, 206 F. Supp. 579, 583 (Ala. 1962) (finding disclosure adequate
and noting, “Doctors frequently tailor the extent of their
pre-operative warnings to the particular patient, and with this I can
find no fault. Not only is much of the risk of a technical nature
beyond the patient’s understanding, but the anxiety, apprehension, and
fear generated by a full disclosure may have a very detrimental effect
on some patients.”) with Cornfeld v. Tongen, 262 N.W.2d 684,
700 (Minn. 1977) (rejecting therapeutic privilege defense where doctor
testified that “he did not want to concern her with what he regarded as
a foregone conclusion”);
|
|
[171] |
|
See Canterbury, 464 F.2d at 92; McNichols, supra note __, at 728.
|
|
[172] |
|
Rosebush
v. Oakland County Prosecutor, 491 N.W.2d 633, 636 (Mich. App. 1992)
(commenting, “[t]he right to refuse lifesaving medical treatment is not
lost because of incompetence or the youth of the patient”); Custody of
a Minor, 393 N.E.2d 836, 844 (Mass. 1979) (stating that incompetent
persons enjoy the same panoply of rights and choices of competent
persons).
|
|
[173] |
|
See
generally Committee on Bioethics, American Academy of Pediatrics,
Informed Consent, Parental Permission, and Assent in Pediatric
Practice, POLICY REFERENCE GUIDE 496 (1997) (also available at 95
PEDIATRICS 314 (Feb. 1995)); Joseph P. McMenamin & Karen Iezzi
Michael, Children As Patients, in LEGAL MEDICINE 396 (American College
of Legal Medicine, ed., 4th ed. 1998); Bopp & Coleson, supra note
__; Dena S. Davis, Genetic Dilemmas and the Child’s Right to an Open
Future, 28 RUTGERS L.J. 549 (1997); Leslie P. Francis, The Roles of the
Family in Making Health Care Decisions for Incompetent Patients, 1992
UTAH L. REV. 861; Leonard H. Glantz, Research with Children, 24 AM.
J.L. & MED. 213 (1998); Marcia Gottesman, Civil Liability for
Failing to Provide ‘Medically Indicated Treatment” to a Disabled
Infant, 20 FAM. L.Q. 61 (1986); Louise Harmon, Falling Off the Vine:
Legal Fictions and the Doctrine of Substituted Judgment, 100 YALE L.J.
1 (1990); Hawkins, supra note __; Robert J. Katerberg, Institutional
Review Boards, Research on Children, and Informed Consent of Parents:
Walking the Tightrope Between Encouraging Vital Experiments and
Protecting Subjects’ Rights, 24 J.C. & U.L. 545 (1998); Ann MacLean
Massie, Withdrawal of Treatment for Minors in a Persistent Vegetative
State: Parents Should Decide, 35 ARIZ. L. REV. 173 (1993); Andrew
Popper, Averting Malpractice By Information: Informed Consent in the
Pediatric Treatment Environment, 47 DEPAUL L. REV. 819 (1998); Elyn R.
Saks, Competency to Refuse Treatment, 69 N.C. L. REV. 945 (1991); Robyn
S. Shapiro & Richard Barthel, Infant Care Review Committees: An
Effective Approach to the Baby Doe Dilemma?, 37 HASTINGS L.J. 827
(1986); Walter Wadlington, Medical Decision Making For And By Children:
Tensions Between Parent, State, and Child, 1994 U. ILL. L. REV. 311;
Amy Elizabeth Bruskey, Comment, Making Decisions for Deaf Children
Regarding Cochlear Implants: The Legal Ramifications of Recognizing
Deafness as a Culture Rather than a Disability, 1995 WISC. L. REV. 235;
Rachel M. Dufault, Comment, Bone Marrow Donations By Children:
Rethinking the Legal Framework in Light of Curran v. Bosze, 24 CONN. L.
REV. 211 (1991); Elizabeth J. Sher, Note, Choosing for Children:
Adjudicating Medical Care Disputes Between Parents and the State, 58
N.Y.U. L. REV. 157 (1983).
|
|
[174] |
|
Conceptually,
the parent’s duty to make decisions is sometimes characterized as a
parental right. When the law views the parental obligation to make
decisions as a parental right, then the child’s rights might be
subordinated to their parents. See RICHARD H. NICHOLSON, MEDICAL
RESEARCH WITH CHILDREN: ETHICS, LAW, AND PRACTICE 132 (1986). Whether
viewed as a right or duty, parental decisions are cloaked in deference
arising out of the right to privacy and the right to parental autonomy
under the Fourteenth Amendment. See, e.g., Wisconsin v. Yoder, 406 U.S.
205 (1972).
|
|
[175] |
|
The
judicial decision maker “must ‘substitute itself as nearly as may be
[possible] for the incompetent and … act upon the same motives and
considerations as would have moved’ the incompetent.” Dufault, supra
note __, at 221-22 (quoting City Bank Farmers Trust Co. v. McGowan, 323
U.S. 594, 599 (1945).
|
|
[176] |
|
“The
fundamental difference between the use of substituted judgment and the
‘best interests of the child test’ under such conditions lies not in
the decision reached, which may be the same, but in the vantage from
which the decision is reached.” Id. at 227. See Rosebush v. Oakland
County Prosecutor, 491 N.W.2d 633, 639 (Mich. App. 1992) (discussing
difference and commenting that preference in surrogate decision making
is to use a substituted judgment standard and best interest standard
where a preference was never stated or is otherwise unknown). See also
Catherine L. Annas, Irreversible Error: The Power and Prejudice of
Female Genital Mutilation, 12 J. CONTEMP. HEALTH L. & POL’Y 325,
337 n. 123 (1996).
|
|
[177] |
|
Dufault, supra note __, at 214-215.
|
|
[178] |
|
Parham
v. J.R., 442 U.S. 584, 602 (1979); In re. L.H.R. 321 S.E.2d 716 (Ga.
1984) ; see also Hawkins, supra note __, at 2081; Sher, supra note __,
at 171-72; Dufault, supra note __, at 218-19.
|
|
[179] |
|
Fiori
v. Pennsylvania, 673 A.2d 905, 912 (Pa. 1996) (acknowledging right of
mother to order removal of life support of adult son in persistent
vegetative state).
|
|
[180] |
|
See
In re Doe, 418 S.E.2d 3, 7 n. 6 (Ga. 1992) (commenting that parents do
not have an “absolute right to make medical decisions for their
children”); McMenamin & Michael, supra note __, at 397; Dufault,
supra note __, at 212-15 (tracing historical perspective of parental
right to make medical decisions); NICHOLSON, supra note __, at 133-34
(discussing limits of parental authority). See also Povenmire, supra
note __, at __.
|
|
[181] |
|
1992)See
Rosebush v. Oakland County Prosecutor, 491 N.W.2d 633, 637 (Mich. App.
(“We hold that the decision-making process should generally occur in
the clinical setting without resort to the courts, but that courts
should be available to assist in decision making when an impasse is
reached.”).
|
|
[182] |
|
See
Sher, supra note __, at 168-69 (noting that the courts resolve
conflicts between the state and the parent and “few courts recognize
that children have an interest to articulate independent of their
parents or the state”).
|
|
[183] |
|
See
generally ROGER B. DWORKIN, LIMITS: THE ROLE OF THE LAW IN BIOETHICAL
DECISION MAKING 54-60 (1996) (approving the increasingly adopted
judicial case-by-case approach in involuntary sterilization cases);
Povenmire, supra note __, at __.
|
|
[184] |
|
See
generally Roberta Cepko, Involuntary Sterilization of Mentally Disabled
Women, 8 BERKELEY WOMEN’S L.J. 122 (1993) (describing statutory and
case law approaches to sterilization of mentally disabled); Elizabeth
Scott, Sterilization of Mentally Retarded Persons: Reproductive Rights
and Family Privacy, 1986 DUKE L.J. 806, 818 (noting “most laws … embody
strict procedural and substantive requirements that create a strong
presumption against sterilization”).
|
|
[185] |
|
DWORKIN,
supra note __, at 58; Scott, supra note __, at 848 n. 140. See Haw.
Rev. Stat. § 560:5-602 (“[p]ersons who are wards and who have attained
the age of eighteen years have the legal right to be sterilized …. [I]n
no event, however, shall wards be sterilized without court approval ….
unless sterilization occurs as part of emergency medical treatment”).
|
|
[186] |
|
In the Matter of Romero, 790 P.2d 819 (Colo. 1990) (en banc) (denying guardian’s request to sterilize brain-injured adult).
|
|
[187] |
|
Estate of C.W., 640 A.2d 427, 428 (Pa. Super. 1994) (affirming mother’s request to sterilize adult mentally retarded daughter).
|
|
[188] |
|
See
Dreger, supra note __, at 28-29 (noting medical tendency to preserve
female reproductive capacity but not male reproductive capacity).
|
|
[189] |
|
See
KESSLER, supra note __, at 77-104, 132; Dreger, History, supra note __,
at 353; Kipnis & Diamond, supra note __, at 406-07. See also
Povenmire, supra note __, at __ (arguing for a heightened ethical
evaluation in male circumcision cases as well).
|
|
[190] |
|
Povenmire
proposes this standard for evaluating male circumcision decisions,
causing parents to weigh the medical justifications for the procedure
against the procedure’s irreversibility and the child’s inability to
consent. See Povenmire, supra note __, at __.
|
|
[191] |
|
See,
e.g., Rosebush v. Oakland County Prosecutor, 491 N.W.2d 633, 637 (Mich.
App. 1992) (reviewing jurisdictions and holding that no judicial
application is required prior to removing life-support from minor in
persistent vegetative state); In re L.R.H., 321 S.E.2d 716 (Ga. 1984)
(accord, holding that no prior judicial approval is necessary prior to
termination of life-support of minor).
|
|
[192] |
|
See,
e.g., In re Sampson, 317 N.Y.S.2d 631 (Fam. Ct. 1970), aff’d, 323
N.Y.S.2d 253 (1971) (ordering surgery to correct facial deformity
despite only psychosocial risk for nontreatment alternative and
surgical risk to health); State v. Perricone, 181 A.2d 751 (1962);
Jehovah’s Witnesses v. King County Hosp., 278 F. Supp. 488 (W.D. Wash.
1967), aff’d, 390 U.S. 598 (1968); see generally Sher, supra note __,
at 161 notes 19-23 (collecting cases).
|
|
[193] |
|
See,
e.g., A.D.H. v. State Dep’t of Human Resources, 640 So.2d 969 (Ala.
App. 1994) (ordering AZT treatment for AIDS); In re Petra B., 265 Cal.
Rptr. 342 (Cal. App. 1989) (ordering medical treatment for burns where
parents are treating child with herbal remedies); Custody of a Minor,
379 N.E.2d 1053 (Mass. 1978) (holding that child’s best hope for
recovery required chemotherapy despite and over parental concern for
discomfort and parental pessimism); In re Vasko, 263 N.Y.S. 552 (1933)
(ordering surgical removal of cancerous eye despite parental
objection); In re Rotkowitz, 25 N.Y.S.2d 624 (N.Y. Misc. 1941)
(ordering operation on foot to correct progressive deformity); but see
In re Seiferth, 127 N.E.2d 820 (N.Y. 1955) (upholding right of parent
to decide not to treat cleft palate and harelip); In re Tuttendario, 21
Pa. Dist. 561 (Pa. 1911) (holding parents could decide to withhold
surgical intervention for deformity caused by rickets because they
feared possible outcomes).
|
|
[194] |
|
Petra B v. Eric B., 265 Cal. Rptr. 342, 346 (Cal. App. 1989) (quoting In re Philip B. 156 Cal. Rptr. 48 (Cal. App. 1979)).
|
|
[195] |
|
See
generally Kenneth Kipnis, Parental Refusals of Medical Treatment on
Religious Grounds: Pediatric Ethics and the Children of Christian
Scientists, in LIBERTY, EQUALITY AND PLURALITY 268, 272-73 (Larry May,
et al., eds. 1997); Protecting Human Research Subjects, supra note __,
at 6-19 (discussing considerations when children are subjects of
research); Karine Morin, The Standard of Disclosure in Human Subject
Experimentation, 19 J. Legal Med. 157, 189-90 (1998). See also Petra B,
265 Cal. Rptr. at 346 (state may intervene upon consideration of the
“seriousness of the harm,” “the evaluation for the treatment by the
medical profession,” the “risks involved in medically treating the
child,” and the “expressed preferences of the child”).
|
|
[196] |
|
See Scott, supra note __, at 849 n. 142 (noting the difficulty in assessing “how someone will function or act in the future”).
|
|
[197] |
|
See
Joel Feinberg, The Child’s Right to an Open Future, in WHOSE CHILD?
CHILDREN’S RIGHTS, PARENTAL AUTHORITY, AND STATE POWER 124 (William
Aiken & Hugh LaFollette, eds., 1980) [hereinafter WHOSE CHILD?].
|
|
[198] |
|
Id.
at 126, 151 (“if the child’s future is left open as much as possible
for his own finished self to determine, the fortunate adult that
emerges will already have achieved, without paradox, a certain amount
of self-fulfillment, a consequence in large part of his own already
autonomous choices in promotion of his own natural preferences.”);
Dufault, supra note ___, at 218-19.
|
|
[199] |
|
NICHOLSON, supra note __, at 131.
|
|
[200] |
|
Kipnis, supra note __, at 273.
|
|
[201] |
|
Id.
|
|
[202] |
|
Patricia
Schroeder,. 1994. Female genital mutilation-- a form of child abuse.
THE NEW ENGLAND JOURNAL OF MEDICINE, 331:739-740. See also K. Rossiter
& S. Diehl. These nurses consider it child abuse if the parents do
not allow surgery on their intersexed infants. 1998. Gender
reassignment in children: Ethical conflicts in surrogate decision
making. JOURNAL OF GYNECOLOGIC AND NEONATAL NURSING, 27:59-62.
|
|
[203] |
|
Kipnis, supra note __, at 273
|
|
[204] |
|
Id.
|
|
[205] |
|
Morin, supra note __, at 191
|
|
[206] |
|
Reiner
& Wilson, supra note __, at 368 (commenting, “[i]t is interesting
to note that ambiguous genitalia are essentially the only congenital
anomalies viewed as a surgical emergency for cosmetic reasons.”).
In
the John/Joan case, the child’s parents recalled how rushed they were
to make the agonizing decision, they received a letter from Money
suggesting they were “procrastinating.” They polled their family and
their pediatrician all who counseled against the surgery. But, they
were persuaded by “Dr. Money’s conviction that the procedure had every
chance for success.” Colapinto, supra note __, at 64.
|
|
[207] |
|
KESSLER, supra note __, at 17-21; Cowley, supra note __, at 66.
|
|
[208] |
|
Dreger,
supra note __, at 30 (quoting Patricia K. Donahoe, et al., Clinical
Management of Intersex Abnormalities, 28 CURRENT PROBLEMS IN SURGERY
515, 540 (1991). Actually only the “salt-losing” category of CAH
requires immediate attention. In rare conditions, gonads are prone to
development of malignant tumors and may be removed prophylactically.
Diamond & Sigmundson, Management of Intersexuality, supra note __,
at 1047.
|
|
[209] |
|
KESSLER,
supra note __, at 21-24; Dreger, supra note __, at 27 (“In an effort to
forestall or end any confusion about the child’s sexual identity,
clinicians try to see to it that an intersexual’s sex/gender is
permanently decided by specialist doctors within forty-eight hours of
birth.”).
|
|
[210] |
|
MONEY,
SEX ERRORS, 2nd ed., supra note __, at 65-66; KESSLER, supra note __,
at 17 (quoting a urologist, “’One of the worst things is to allow them
[the parents] to go ahead and give a name and tell everyone, and it
turns out the child has to be raised in the opposite sex.’”)
(alteration in original).
|
|
[211] |
|
See
Dreger, supra note __, at 30 (stating the clinicians view intersex
states as a “social emergency”); Diamond, Management of Intersexuality,
supra note __, at 1047 (cosmetic clitoral and sex reassignment surgery
should be postponed until “the patient is able to give truly informed
consent”); Wilson & Reiner, supra note __, at 368.
One
might argue, as has psychologist Meyer-Bahlburg that the adult actions
and beliefs are predicated on what happens starting from infancy and
therefore neonatal surgery is beneficial and not “merely” cosmetic
since it will facilitate adjustment to the assigned gender. H.F.L.
Meyer-Bahlburg, Gender Assignment in Intersexuality. 10 J. PSYCH. &
HUMAN SEXUALITY, 1, __ (1998). However, no controlled study supports
this thesis. The premise is quite dubious: parents must consent to
emergency surgery on their infant’s genitalia to prevent psychosocial
harm at a later date.
|
|
[212] |
|
See
Timing of Elective Surgery, supra note __, at 590 (expressing concern
that these congenital defects “may influence the mother’s attitude
toward child” and noting disadvantage of “prolonging the child’s
‘defective’ status and crystallizing any disruption in family
relationships that the child’s condition may have produced”); Cowley,
supra note __, at 65 (reporting view that physicians view “creating a
normal appearance” as urgent). Instead of “normalizing” the sex organs,
Diamond urges clinicians to counsel parents “that appearances during
childhood, while not typical of other children, may be of less
importance than functionality and postpubertal erotic sensitivity.”
Diamond & Sigmundson, Management of Intersexuality, supra note __,
at 1047.
|
|
[213] |
|
See
MONEY, SEX ERRORS, 2nd ed., supra note __, at 82 (cautioning that
parents of children with birth defects of sex organs “may despise,
criticize, and avoid the pathology in their child who, in turn, feels
despised, criticized and avoided as a person.”); see also American
Academy of Pediatrics, Timing of Elective Surgery, supra note __, at
590.
|
|
[214] |
|
Reiner
& Wilson, supra note __, at 363 (citing Heino F.L. Meyer-Bahlburg,
Gender Assignment in Intersexuality, 10 J. PSYCH. & HUMAN SEXUALITY
1-21 (1998)).
|
|
[215] |
|
See Diamond & Sigmundson, Management of Intersexuality, supra note __, at 1048.
|
|
[216] |
|
Dreger,
supra note __, at 32-33; Kessler, supra note __, at 128-32. Moreover,
the haste and secrecy produces its own shame and stigma. See Robert A.
Couch, Betwixt and Between: The Past and Future of Intersexuality, 9 J.
CLIN. ETHICS 372, 375 (1998) (noting that discomfort with
intersexuality is culturally constructed); Preves, supra note __, at
415 (noting that surgery compounds shame rather than erasing it, and
that parents might have been taught to deal with their different child
rather than misguided attempts to “normalize” them through radical
surgery); Wilson & Reiner, supra note __, at 364 (commenting that
silence produces “significant feelings of shame”). There is increasing
recognition that gender exists along a continuum, much as medicine and
society desire a binary gender construct. See KESSLER, supra note __,
at 132; Terry S. Kogan, Transsexuals and Critical Gender Theory: The
Possibility of a Restroom Labeled “Other,” 48 HASTINGS L.J. 1233, 1238
(1997). See also Brynn Craffey, 1997. Showering "Sans Penis".
CHRYSALIS: THE JOURNAL OF TRANSGRESSIVE GENDER IDENTITIES, 2:55-56.
|
|
[217] |
|
Diamond
& Sigmundson, supra note __, at 1047; cf. KESSLER, supra note __,
at Cowley, supra note __, at 66 (reporting on recommendations of
Intersex Society of North America and biologist Anne Fausto-Sterling).
|
|
[218] |
|
Diamond
and Sigmundson’s views are supported by ISNA, an organization of and
for adult intersexuals. ISNA, supra note __. See Chase, supra note __,
at 385.
|
|
[219] |
|
Diamond & Sigmundson, Management of Intersexuality, supra note __, at 1047.
|
|
[220] |
|
See
KESSLER, supra note _, at 74-76. In regard to the effect on parents,
Money et al. have written: "More than one-half of the parents (8/14)
underwent only a short-lived, minor degree of crisis precipitated by
having a micropenis baby [that that they were told would need to be
reassigned as a girl]. None had an extreme degree of crisis." JOHN
MONEY, TOM MAZUR, CHARLES ABRAMS, AND BERNARD F. NORMAN. 1981.
Micropenis, Family Mental Health, And Neonatal Management: A Report On
14 Patients Reared As Girls. JOURNAL OF PREVENTIVE PSYCHIATRY, 1:17-27.
|
|
[221] |
|
See
Estate of C.W., 640 A.2d 427, 428 (Pa. 1994) (quoting Matter of Mildred
J. Terwilliger, 450 A.2d 1376, 1382 (Pa. 1982)) (“[I]n making the
decision of whether to authorize sterilization [of incompetent adult],
a court should consider only the best interest of the incompetent
person, not the interests or convenience of the individual’s parents,
the guardian or of society.”); Wentzel v. Montgomery Gen. Hosp., Inc.,
447 A.2d 1244 (Md. 1982) (“in considering the best interests of an
incompetent minor, the welfare of society or the convenience or peace
of mind of the ward’s parents or guardian plays no part”); Mack v.
Mack, 618 A.2d 744, 759 (Md. App. 1993).
|
|
[222] |
|
Wilson & Reiner, supra note __, at 367.
|
|
[223] |
|
Dreger, supra note __, at 30.
|
|
[224] |
|
Bopp
& Coleson, supra note __, at 144 (discussing studies demonstrating
tendency of physicians to withhold information or not to admit the
“limitations of their professional knowledge and ability”).
|
|
[225] |
|
Id. at 141-42.
|
|
[226] |
|
Althaea Yronwode, 1999. Wisdom of Surgery on infants. TRANSGENDER TAPESTRY, 1999:18-21, 32. at 21.
|
|
[227] |
|
MONEY, SEX ERRORS, 1st ed. at 62-63.; 2nd ed., supra note __, at 67.
|
|
[228] |
|
[A]
pediatric endocrinologist at Children’s Memorial Hospital in Chicago,
would draw a pair of X’s. This, he would say, was what a normal
female’s sex chromosomes looked like: XX.
|
|
|
|
|
Id. A physician candidly recalled to a reporter how he and his colleagues counseled parents of intersex children:
Then,
with the heel of his hand, he would erase the leg of one X. That, he
would say was what happened to one of their daughter’s X chromosomes.
It was incomplete, unfinished. This was shy her sexual organs hadn’t
developed the way they should, why her breasts would not grow, why she
couldn’t ever have children.
What he din
not say is that the incomplete X was not an X chromosome at all. It was
a Y chromosome, the genetic marker for a male.
The child they were talking about was not a girl, at least not so far as her genes were concerned. She was a boy.
|
|
|
Kiernan, supra note __, at 1 (interviewing Jorge Daaboul).
|
|
[229] |
|
See
KESSLER, supra note __, at 21-24 (describing information provided to
parents during diagnosis and noting deceptive and incomplete
information imparted); Dreger, supra note __, at 31 (recounting
anecdotal reports of parents and adult patients being misinformed and
deceived about the nature of the condition and the treatment);
anecdotal cases are also discussed in Colapinto, supra note __, at 95;
Cowley, supra note __, at 64, 66.
|
|
[230] |
|
Not
infrequently the concept of “more time in gestation” having been needed
leads to feelings of maternal guilt; e.g. “If only I had taken more
time. . . ”
|
|
[231] |
|
KESSLER, supra note __, at 23.
|
|
[232] |
|
Intersex
is not merely a condition of the genitals, but of a sexually dimorphic
brain. See William G. Reiner, Case study: sex reassignment in a teenage
girl, 35 J. AM. ACAD. CHILD & ADOLESCENT PSYCH. 799 (1996) (noting
the complexity of intersex conditions and uncertainty as to causes).
See also Milton Diamond, 1976. Human sexual development: biological
foundation for social development. In F. A. Beach (ed.), HUMAN
SEXUALITY IN FOUR PERSPECTIVES, pp. 22 - 61. The John Hopkins Press. at
38-39.
|
|
[233] |
|
In
the context of involuntary sterilizations generally, one court
commented, “An individual’s right to procreate is fundamental….
Sterilization involves a surgical invasion of bodily integrity. It
destroys ‘an important part of a person’s social and biological
identity,’ … can be traumatic for the individual, and can have
‘long-lasting detrimental emotional effects.’” In re Romero, 790 P.2d
819. 821 (Colo. 1990) (en banc) (citations omitted) (upholding right of
incapacitated mother of two to refuse sterilization where she expressed
desire to have additional children).
In
ARATO V. AVEDON, 5 CAL. 4TH 1172, 23 CAL. RPTR. 2D 131, 858 P.2D 598
(1993) the Court concluded: “a physician is under a legal duty to
disclose to the patient all material information -- that is,
information which would be regarded as significant by a reasonable
person in the patient’s position when deciding to accept or reject a
recommended medical procedure-- needed to make an informed decision
regarding a proposed treatment.”
|
|
[234] |
|
A
recent prize-winning essay student essay advocates deception in the
case of androgen insensitivity syndrome (AIS) discovered at
adolescence. AIS patients are genetic males who, for lack of receptors
necessary to masculinize, will grow up looking like females but
possessing an underdeveloped vagina and lacking ovaries. The condition
is sometimes overlooked until adolescence when it is discovered because
the child fails to menstruate. The medical student argues that both the
parents and the adolescent child should be shielded from knowledge of
AIS. Since, “[t]he only services the physician can provide are surgical
reconstruction of the vagina and counseling on adoption,” she suggests
that if the “patient is completely comfortable with her female
sexuality” then “physicians who treat AIS patients are justified in not
disclosing the information that the patient is genetically male.” Anita
Natarajan, Medical Ethics and Truth-Telling in the Case of Androgen
Insensitivity Syndrome, 154 CANADIAN MED. ASS’N J. 568-69 (1996).
|
|
[235] |
|
See
Colapinto, supra note __, at 95. J/J resisted hormone treatment and
four years of unyielding pressure and deception by both Dr. Money and
her local treatment team to undergo vaginal reconstruction. Id. at
70-71. See also Sherri A. Groveman, The Hanukkah Bush: Ethical
Implications in the Clinical Management of Intersex, 9 J. CLIN. ETHICS
356, 357 (1998) (discussing life with AIS, recounting surgery and
ongoing medical treatments, and stating that doctors “implored my
parents never to tell me the truth” and describing finally discovering
diagnosis on her own at age 20 through medical detective work).
|
|
[236] |
|
William
Reiner, an Assistant Professor of Child and Adolescent Psychology at
Johns Hopkins University, describes the rationale for secrecy:
|
|
|
|
|
At
the time of initial gender assignment, to protect the child’s
psychosocial development from potentially hurtful comments, physicians
have generally counseled families not to discuss any of this with other
family members or friends. Further, based on the theory that any doubt
may undermine development of gender identity concordant with the
assigned sex of rearing, they also advise the family not to discuss the
child’s condition with the child.
|
|
|
|
Wilson
& Reiner, supra note __, at 363. Wilson and Reiner explain that as
medical records become more easily obtainable, secrecy is increasingly
unrealistic, out of step with current views of patient rights, and
patient autonomy. Id. at 364. See also Diamond, Management of Ambiguous
Genitalia, supra note __, at __ (“Parents and clinicians have often
concealed aspects of surgery and treatment from the child and excluded
maturing children from medical management decisions…. Adults who have
had these procedures in childhood are now presenting at clinics quite
ignorant of their history.”); Dreger, supra note __, at 27, 30-32
(“Clinicians treating intersexuality worry that any confusion about the
sexual identity of the child on the part of relatives will be conveyed
to the child and result in enormous problems, including potential
“dysphoric” states in adolescence and adulthood.”); Groveman, supra
note __, at 357 (commenting on receiving AIS diagnosis and infant
surgery, “the sole instruction my parents received … was one of “damage
control,” calculated to confirm a solid image that I was their daughter
in the same breath that doctors enjoined them that they should not
disclose my true diagnosis to anyone, least of all me”).
Money
suggests that displayed ambivalence to the gender assigned is fatal to
success. See MONEY, SEX ERRORS, supra note __, at 66 (“If a change must
be made [in the announcement of sex] then it should be made only once
and forever, with no delay or vacillation.”); MONEY, SEX POLICE, supra
note __, at 319 (raising the effect “about hearing of one’s infantile
medical history from the children of adult members of the community
grapevine” as a possible explanation for the failure of J/J’s case).
But Money’s idea of a success if for the sex-reassigned person to
accept without question the imposed gender switch. This is independent
of whether the individual him or herself would make that gender
decision given all the facts.
Elsewhere,
however, Money has written that “The withholding of information can be
extremely traumatic, as the patient will soon realize that things are
being withheld and will resort to inferential guesswork. . . . When
they grew up, several of these [hermaphroditic] patients confronted me
with the folly of this policy, for they had known all along that they
had been dealt with insincerely. In the majority of instances, they
also knew exactly whnformation was being withheld.. . .” JOHN MONEY,
1983. Birth defect of the sex organs: telling the parents and the
patient. BRITISH JOURNAL OF SEXUAL MEDICINE, 1983:14.
|
|
[237] |
|
In
a prize winning essay, Natarajan urges physicians keep secret the male
status of women with androgen insensitivity. She reasons that the
knowledge will be too psychologically damaging for them and so
justifies the ethics of deception. Natarajan, supra note __, at 570.
AIS
women themselves, on the other hand, express a desire to know the truth
of their condition. See: B. Diane Kemp,.1996. Letter to the Editor (re:
Sex, Lies and Androgen Insensitivity Syndrome). 154 CANADIAN MEDICAL
ASS’N J. 1829-33.; Sherri A. Groveman, Letter to the Editor. 154
CANADIAN MEDICAL ASS’N J. 1829, 1832 (1996). Anonymous. 1996. Letter to
editor. 154 CANADIAN MEDICAL ASS’N J. 154:1832. This is supported by
the present research of Diamond among 35 women with AIS.
|
|
[238] |
|
See
Dreger, supra note __, at 28, 31. Moreover, when patients are not given
complete information, they sometimes do not appreciate the continued
sex-related risks of their former sex that plague them. Id. at 31-32.
|
|
[239] |
|
Cowley, supra note __, at 66 (quoting Dr. Antonne Koury, chief of pediatric urology at Toronto’s Hospital for Sick Children).
|
|
[240] |
|
Brendan
P. Minogue & Robert Taraszewski, Commentary, The Whole Truth and
Nothing But the Truth? 18 HASTINGS CENTER REPORT 34 (Oct./Nov. 1988)
and Sherman Elias & George Annas. Commentary, The Whole Truth and
Nothing But the Truth, 18 HASTINGS CENTER REPORT 35-36 (Oct./Nov. 1988).
|
|
[241] |
|
Current
sensitivity to the effect on the patient of labeling the condition
“testicular-feminization” the condition has been relabeled “androgen
insensitivity syndrome” (AIS). The person’s body tissues can not
respond to androgens which are needed for typical virilization.
|
|
[242] |
|
Minogue & Taraszewski, supra note __, at 34.
|
|
[243] |
|
Minogue & Taraszewski, supra note __, at 34.
|
|
[244] |
|
Id.
at 35. The authors suggest the information is not “relevant” since
nothing can be done and all “immediate problems can be addressed
without revealing the information about her genetic abnormality.” Id.
at 34.
A contrary position that full
disclosure rather than deception to both parents and child is also
presented. See Elias & Annas, supra note __.
|
|
[245] |
|
Minogue & Taraszewski, supra note __, at 35.
|
|
[246] |
|
A
physician bears the burden of producing evidence that the therapeutic
privilege negates the duty to disclose, and only then, “the patient has
the ultimate burden of proving the nonexistence of the exception.”
Bernard v. Char, 903 P.2d 676, __ (Haw. App. 1995), cert. granted and
clarified on other issues, 903 P.2d 667 (1995).
|
|
[247] |
|
464
F.2d at 789 (footnotes omitted). See also McNichols, supra note __, at
728 (applauding narrow scope of therapeutic privilege crafted by
Canterbury).
|
|
[248] |
|
The
J/J case, communications from former patients, and ISNA discussions
share a striking common theme that information, even in adulthood, was
desperately wanted but difficult to obtain. See supra notes __, __.
These stories suggest a deviation from the so-called common view:
|
|
|
|
|
[A]
physician has a fiduciary duty to inform a patient of abnormalities in
his or her body. The basis of this duty is that the patient has a right
to know the material facts concerning the condition of his or her body,
and any risks presented by that condition, so that an informed choice
may be made regarding the course which the patient’s medical care will
take. The patient’s right to know is not confined to the choice of
treatment once a disease is present and has been conclusively
diagnosed. Important decisions must frequently be made in many
non-treatment situations in which medical care is given, including
procedures leading to diagnosis…. These decisions must all be taken
with the full knowledge and participation of the patient…. The
existence of an abnormal condition in one’s body, the presence of a
high risk of disease, … are all facts which a patient must know in
order to make an informed decision on the course which future medical
care will take.
|
|
|
|
Gates v. Jensen, 595 P.2d 919, 922 (Wash. 1979) (en banc).
|
|
[249] |
|
See Sharon E. Preves, For the Sake of the Children: Destigmatizing Intersexuality, 9 J. CLIN. ETHICS 411, 414 (1998).
|
|
[250] |
|
It
has been reported that Cheryl Chase, Director of the Intersex Society
of North America, “At the age of 35 . . . had a nervous breakdown.
Although she had been able [with difficulty] to access her medical
records in her early 20s, . . . the years of secrecy, unexplained
surgeries, and sexual dysfunction caused by removal of her clitoris had
taken a huge toll on her. ‘Until I was 35, I was ashamed and terrified
that people would find out that I was different than a woman. Like
many, supposedly happy and successful patients, I was silenced.’”
Yronwode, WISDOM OF SURGERY ON INFANTS note ____ at 19.
|
|
[251] |
|
See Kipnis & Diamond, 1998 at 407; Diamond, 1999 at 1026.
|
|
[252] |
|
See Diamond & Sigmundson, supra note ____ at 1048.
|
|
[253] |
|
See Kipnis & Diamond, 1998 at 407; Diamond, 1999 at 1026.
|
|
[254] |
|
See
FURROW, supra note __, at § 6-5 at 386-87 (commenting, “courts seem
willing to tolerate clinical innovation so long as a patient is
properly informed as to the innovative and untested nature of the
procedure”).
|
|
[255] |
|
Diamond & Sigmundson, supra note __, at 298.
|
|
[256] |
|
Kipnis
& Diamond, Pediatric Ethics, supra note __, at 406 (“it is not
possible for a patient’s parents to give informed consent to these
procedures, precisely because the medical profession has not
systematically assessed what happens to the adults these infant
patients become.”).
|
|
[257] |
|
See Dreger, supra note __, at 32. Diamond, Ambiguous and Traumatized, supra note __, at __.
|
|
[258] |
|
MONEY, SEX ERRORS, 2nd ed., supra note --, at 67 (emphasis added).
|
|
[259] |
|
Id. at 54 (emphasis added).
|
|
[260] |
|
Indeed,
the American Academy of Pediatrics, in its 1996 recommendations on
timing male genital surgery, stated “a person’s sexual body image is
largely a function of socialization” referencing only the decade-old
and older work of John Money. Timing of Elective Surgery, supra note
__, at 590. Yet, to date, there has not been a single report of a sex
reassigned nonintersexed male successfully living as an androphilic
woman. (Diamond, supra note ______, at 1023.)
|
|
[261] |
|
There
is no doubt that doctors are choosing treatments based on social or
personal value judgments, consider the following quote concerning
clitoral surgery that favors appearance:
|
|
|
|
|
The clitoris is not essential for adequate sexual function and sexual gratification … but its preservation would seem to be desirable if achieved while maintaining satisfactory
appearance and function…. Yet the clitoris has a relation to erotic
stimulation and to sexual gratification and its presence is desirable,
even in patients with intersexed anomalies if that presence doesn’t
interfere with cosmetic, psychological, social and sexual adjustment.
|
|
|
|
KESSLER,
supra note __, at 37 (quoting Judson Randolph & Wellington Hung,
Reduction Clitoroplasty in Females with Hypertrophied Clitoris, 5 J.
PEDIATRIC SURGERY 224, 230 (1970)).
|
|
[262] |
|
Wilson and Reiner comment:
|
|
|
|
|
[T]he
right of the individual to determine what happens to his or her body
has been increasingly asserted. Patients and families are demanding a
voice in the issue of sex assignments and therapies. After all, the
child’s sex-of-rearing and gender identity are profoundly important to
that child’s lifelong development and adjustment. Although parents may
give consent for surgery, there is increasing movement toward obtaining
a child’s assent to procedures, particularly those which, like most
genital “reconstructive” procedures, are elective from a medical
viewpoint. This means delaying surgery until we can take into account
the affected individual’s determination of his or her own gender.
|
|
|
|
Wilson
& Reiner, supra note __, at 364. See also Schober, supra note __,
at 394 (“For the best long-term outcomes, we need to consider that
surgical treatment methods do not ‘cure’ intersexuality, and that a
procedure such as vaginoplasty should address a consenting and
requesting patient’s needs and desires, not parental and societal
comfort.”).
|
|
[263] |
|
Laurence McCullough, “The Ethics of Gender Reassignment,” Presentation at conference 1999 Pediatric Gender Reassignment: A Critical Reappraisal
Wyndham-Anatole Hotel, Dallas, Texas, April 30, 1999. See also Dena S.
Davis, Genetic Dilemmas and the Child’s Right to an Open Future, 28
RUTGERS L.J. 549, 575-81 (1997) (noting and approving of trend against
conducting genetic tests to predict late-onset diseases and suggesting
that parents who opt for testing “preclude the child’s right and
opportunity to make that decision for himself in adulthood”).
|
|
|
|
|
|
[264] |
|
See infra notes __.
|
[265] |
|
KESSLER,
supra note __, at 74; Kipnis & Diamond, Pediatric Ethics, supra
note __, at 405-406; Diamond & Sigmundson, Management of
Intersexuality, supra note __, at 1047; Reiner, Sex Reassignment, supra
note __, at 1044. Diamond, J. Urology at 1025-1026. Kipnis and Diamond
and Diamond also recommend the moratorium remain in effect until the
positive value of the surgery is documented with adequate follow-up
study. See Meyer-Bahlburg, supra note __, at 15 and Glassberg, supra
note ____, at 152-153 (both defending cosmetic surgery). While
suggesting that surgery continue on ambiguous genitalia, Glassberg,
supra note ____ at 1309, is also open to change: ". . .we must learn
from patients who resent how they were treated and those who are
satisfied. If data become available to prove that a given approach
should be changed, we should do this promptly. Today with valid,
unbiased followup data, and genetic, pharmacological and surgical
tools, we should be able to produce a satisfying outcome for nearly all
children born with this potentially devastating problem."
|
[266] |
|
Preves, supra note __.
|
[267] |
|
See Diamond & Sigmundson, Sex Reassignment, supra note __, at 303; Dreger, supra note __, at 30, 33-34.
|
[268] |
|
Preves,
supra note __, at 415 (reporting on fear of cancer as a result of
incomplete medical history); Groveman, supra note __, at 357-58.
|
[269] |
|
See
ISNA, Frequently Asked Questions, Hormone Replacement and Osteoporosis,
available at <http://www.isna.org/faq/htm> (warning that persons
who have had their gonads removed in childhood are at exceptionally
high risk of osteoporosis), last visited July 15, 1999.
|
[270] |
|
Morgan
Holmes, Is growing up in silence better than growing up different? 2
Chrysalis: The Journal of Transgressive Gender Identities 7-9
(1997/1998) (describing mental disturbance and suicidal ideation);
Cowley, supra note __, at 66 (discussing case of Cheryl Chase, “”not
only was [she] denied information as a child but was lied to by doctors
when she later tried to obtain her medical records”); Colapinto, supra
note __, at 95 (recounting incidents of secrecy and resulting
psychological pain and suffering).
|
[271] |
|
Kenneth
Kipnis, and Milton Diamond. 1998. Pediatric Ethics and the Surgical
Assignment of Sex. THE JOURNAL OF CLINICAL ETHICS, 9: at 406-407.
Milton Diamond, 1999. Pediatric Management of Ambiguous and Traumatized
Genitalia. JOURNAL OF UROLOGY, 162: at 1026.
|
[272] |
|
See,
e.g., Blaz v. Galen Hospital Illinois, Inc., 982 F. Supp. 556 (N.D.
Ill. 1997) (noting that where there is a continuing duty the cause of
action does not accrue until the defendant “had sufficient facts to
understand that its treatment had placed the plaintiff at risk”); Mink
v. University of Chicago, 460 F. Supp. 713, 720 (N.D. Ill. 1978)
(citing Canterbury v. Spence, 464 F.2d 772 (D.C. App. 1972))
(recognizing ongoing duties to notify women of cancer risks related to
treatment with DES discovered after treatment); Schwartz v. United
States, 230 F. Supp. 536 (E.D. Pa. 1964) (holding that veteran’s
hospital has duty to inform patient of newly discovered risks
associated with prior treatment); Tresemer v. Barke, 150 Cal. Rptr. 384
(Cal. App. 1978) (holding that doctor had continuing duty to warn of
later discovered risks associated with Dalkon Shield and statute of
limitations was inapplicable); Reyes v. Anka Research Ltd., 443
N.Y.S.2d 595, 597 (N.Y. Sup. Ct. 1981) (noting that cause of action for
failing to notify patient of recall of IUD “continued up to the time of
reasonable discovery”). But see Schendt v. Dewey, 520 N.W.2d 541 (Neb.
1994) (holding that there is no duty to warn of cancer risks from
radiation following termination of the physician-patient relationship).
See generally Lori B. Andrews, Torts and the Double Helix: Malpractice
Liability for Failure to Warn of Genetic Risks, 29 HOUS. L. REV. 149,
169 (1992) (discussing on-going duties to warn where genetic testing
later reveals other as-yet-unknown links to diseases and carrier
states); Andrea G. Nadel, Annotation, Duty of Medical Practitioner to
Warn Patient of Subsequently Discovered Danger From Treatment
Previously Given, 12 A.L.R.4th 41 (1981 & 1997 supp.).
|
|
|
|
|
[273] |
|
Name withheld. Tape recorded interview on file with author.
|
[274] |
|
He
explained, for example, that his best childhood friend was a boy. As he
matured, he had few friends, but generally he preferred male
friendship. He could act like a girl, “but it didn’t feel right.” He
played with Ninja Turtles rather than Barbie and preferred to act like
a boy.
|
[275] |
|
From
his description and subsequent interview, he probably had micropenis
and possibly a hypospadias. He was XY 46, [normal for a male] but he
didn’t discover that (nor did his parents) until he was an adult
undergoing sex change back to live as a typical male.
|
[276] |
|
He
now takes injections of testosterone but his external genitalia, even
now after reconstruction, remains “deficient.” Unfortunately, his
testes were removed at the same time as his penis was amputated.
Earlier estrogen treatment forced the development of breasts but three
years previously he had a mastectomy.
|
[277] |
|
For
a long time I felt, “how could you do this to me? … If they had known I
was born as a boy, they wouldn’t have raised me as a girl.”
He
also explained, “When I was ten, I asked my mother if God makes
mistakes.” “My mother was left in the dark as much as I was [about my
condition].” The doctors told his parents his testes were cancerous
(although they were not). His parents were not clear at the time that
he was born a boy, although genetic tests at the time revealed he had a
normal 46 XY karyotype and he had normal testes.
|
[278] |
|
In
addition to hygienic problems with urination there are the scars from
surgery and the need for life-long medical treatment. Most crucially
there is also the hesitation in social interactions with the knowledge
he will not function as a typical male nor be fertile. He has as yet to
engage in any erotic social activity with a partner.
|
[279] |
|
He explained, “the conclusion was that the doctors at the time of my birth did the best they knew how to do.”
|
[280] |
|
KESSLER,
supra note __, at 75-76; Kipnis & Diamond, supra note __, at
405-407; Diamond & Sigmundson, Management, supra note __, at 1047;
Dreger, supra note __, at 34; Catlin, supra note __, at 65.
Unfortunately,
Dreger notes that ethicists have historically not been included in this
debate. See Dreger, supra note __, at 26 (noting the scant attention to
the ethical issues until now). Times are changing, as evidenced by the
devotion of an entire issue on this topic in the Journal of Clinical
Ethics in 1998.
|
[281] |
|
Reiner, Sex Assignment, supra note __ (reminding readers “the brain is the most important sex organ”). | |