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Discuss the highly controversial practice of sterilization for non-therapeutic reasons: Sterilizing a Child, for a Better LifeDownload Sterilizing a Child, for a Better LifeWhat would be the benefits? Would these outweigh the harms? How would you use an ethics argument to support your viewpoint?Please post your comment by this Saturday at 11:59pm and then respond to at least two classmates’ posts before next class.
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HEALTH
Sterilizing a Child, for a Better Life
Though it can tread dangerously close to eugenics, some parents argue that
sterilization improves quality of life for their disabled children, and themselves.
By Marina Kamenev
SEPTEMBER 19, 2013
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(Carlos Barria/Reuters)
When Sophie Carter entered puberty, her parents had more to dread than just a
temperamental adolescent. Sophie is now 31 but still has the intellectual capacity of
a three-year-old. There were no concerns about drugs or boyfriends and no chance of
having “the talk” about sex with her. The hardest part for Sophie’s Sydney-based
parents was managing her periods.
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“She has an older sister and a younger sister and we tried to get her to use pads, but
it just didn’t work,” said Merren Carter, Sophie’s mother.
“People talk about stigma associated with menstruation but there was none of that at
our house. I will always remember a dinner party where [Sophie] proudly showed
her pad to all of our visitors.”
Merren and her husband, John Carter, put Sophie on Depo Provera birth control for
five years. However, John, an endocrinologist and professor of medicine at the
University of Sydney was concerned about the long-term risks of osteoporosis
associated with the hormonal contraception. They began looking for an alternative
solution. At first they considered endometrial ablation, a procedure that destroys the
lining of the uterus, and reduces menstrual flow. They received approval from the
Guardianship Tribunal of New South Wales, a governmental body that determines
consent for special medical treatments for adults who are incapable of making their
own decisions.
However, the Carters decided not to go ahead with the procedure as it would have to
be repeated. Instead they applied for Sophie to have a hysterectomy. The
Guardianship Tribunal approved it and when Sophie was 21 she had the operation.
Her limited independence is no longer compromised by menstruation, Merren said.
Sophie continues to take swimming lessons without monthly interruptions and
doesn’t have to have pap smears, under general anesthetic, which many of Sophie’s
friends have to endure.
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The Carters consider themselves lucky. The Guardianship Tribunal concluded that
the potential distress to Sophie’s spiritual, mental, and physical health caused by
menstruation justified the procedure. However, many of Sophie’s mentally
handicapped friends have had similar applications rejected and some have gone
overseas, to New Zealand or Thailand, for hysterectomies.
The committee said that it “abhors” suggestions that
sterilization should be used to manage pregnancy
risks due to sexual abuse.
It is likely to get even more difficult for Australian parents in situations like the
Carters’ to get approval for sterilizing a disabled child. A July Senate committee
report recommended that sterilizing disabled children without their consent should
be banned unless it can be proven that the child is never likely to develop the
capacity for consent. The report also recommended that taking children or
attempting to take children overseas for a sterilization procedure should be a
criminal offense.
The report followed a 10-month inquiry, with submissions from parents, carers,
human rights groups, and disability advocates. The committee’s list of 28
recommendations include that the definition of an individual’s capacity to consent
be identical in every Australian state and territory, and that sex education
information be targeted at the disability sector.
In one of the recommendations, the committee said that it “abhors” suggestions that
sterilization should be used to manage pregnancy risks due to sexual abuse.
Sterilizing disabled people exudes more than a whiff of eugenics. It recalls U.S.
policies in the 20th Century that led to the sterilization of more than 60,000 people
by 1960, as well as the infamous Nazi “Law for the Prevention of Offspring with
Hereditary Diseases,” in 1933. But due to difficulty with menstrual management or
a fear of pregnancy, carers often feel that sterilization is their only option. A 2003
study in the journal Mental Retardation and Developmental Disabilities Research
Reviews about the ethics of involuntary sterilization of mentally handicapped people
examined surveys from the 1980s and 1990s and found that roughly half of all
parents with mentally disabled children have considered or would consider sterilizing
their child.
These decisions are often controversial. The 2006 Seattle “Ashley Treatment” case, in
which a hysterectomy, among other procedures, was used to stunt the growth of a
six-year-old girl, who had static encephalopathy, is still contentious. Her parents
decided on these treatments to ease the burden of caring for her.
“Most parents have mixed motives,” said Douglas Diekema, a professor of pediatrics
at the University of Washington and Seattle Children’s Hospital, who wrote the
study. “Clearly many of them do want some help with menstrual control, but they
really, almost all of the time desperately want their child never to get pregnant…
They are concerned about sexual abuse and their child been taken advantage of.
Although a sterilizing procedure doesn’t do anything to alter that possibility, what it
does do is that it prevents, in their mind, a pregnancy on top of that.”
U.S. laws also vary from state to state. Diekema says that, generally, getting approval
for the procedure is “fairly restrictive” throughout the country. Much like in
Australia, the rate at which sterilization in disabled populations occurs is unknown.
At the Seattle Children’s Hospital, Diekema says one or two procedures are approved
a year. Carolyn West, a fellow of the Royal Australasian College of Physicians and
professional member of the New South Wales Guardianship Tribunal, said that
approximately one to three procedures are approved yearly in the state.
One of the committee’s recommendations is to record the number of child
sterilization cases in Australia “in the same way in each jurisdiction.” Even though
the exact number of procedures are hazy, the figures seem to have been high enough
to have caught the attention of the United Nations, which in its 2012 Conventions
on the Rights of the Child Report, wrote that they were “particularly concerned”
that the sterilization of disabled women and girls continues in Australia and advised
that the practice be banned for non-therapeutic purposes. The United Nations
Special Rapporteur on torture has highlighted that forced sterilization of disabled
women may constitute torture, or ill treatment.
Submissions to the Australian Senate inquiry detailed some distressing instances of
forced sterilization. One woman’s father, who believed that she should not have
children, told her she was going to the hospital to have her tonsils taken out. “I did
not have a sore throat afterwards,” she told the committee. It was only when she was
trying to have kids with a long-term partner that she had realized what happened.
Her partner eventually left her because he wanted children.
Another woman was forced to have a hysterectomy by her parents, even though she
told them that she did not want to have the operation. Another disabled woman
who was sterilized collected more than 100 strollers, as well as diapers, toys, and
clothes for children that she would never have.
Stella Young, a comedian and disability advocate who suffers from osteogenesis
imperfecta, a congenital bone disorder, wrote in her submission that a specialist tried
to convince her parents that a hysterectomy would be best for her, to avoid the
“inconvenience” of menstruation. Young was just four years old at the time. “My
parents, to whom I’m eternally grateful, were horrified and rejected this ‘advice,’”
Young wrote.
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But menstrual management played a big role in many submissions by parents and
carers. One grandmother wrote that her granddaughter will not be able to manage
her periods, when she starts menstruating, as she often “finger paints” with and
“smears” the contents of her diapers. One submission described how a woman
remained in the bathroom at her place of employment with blood on her clothes due
to the onset of her period.
West said that the New South Wales Guardianship Tribunal will not approve a
sterilization procedure for menstrual management or contraception except in life-
threatening cases, or when there is a significant risk of harm to the health of the
disabled person. For instance, if the bleeding leads to anemia, or if the hysterectomy
is part of a cancer treatment. Instead the tribunal recommends using other methods
of contraception.
For some disabled people, intrauterine devices, may need to be inserted under a
general anesthetic, and those who take the contraceptive pill may have breakthrough
bleeds. In Sophie Carter’s case, her parents successfully argued that they did not want
to expose her to long-term risks associated with Depo Provera.
“Advocates who say she has the ‘right’ to have a child
need to factor in her ability to be RESPONSIBLE
for that child.”
“There are no methods of menstrual regulation or fertility regulation that are perfect,
and there will be girls and women in whom specific methods are unsuitable.
Alternatively there are a very small number who may have their best interests served
with a hysterectomy and sterilization,” said Michael Permezel, the president elect of
the Royal Australian and New Zealand College of Obstetricians and Gynaecologists
(RANZCOG).
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Then there are the parents who believe their children are entitled to a sex life but are
not necessarily capable of having children. In another submission, one woman
describes how her 27-year-old daughter has a boyfriend but if she were to get
pregnant, the child would be “dead within a week.”
“Advocates who say she has the ‘right’ to have a child need to factor in her ability to
be RESPONSIBLE for that child,” the submission reads.
The RANZCOG submission to the inquiry described the case of a woman in her
mid 20’s who had an intellectual disability and an IQ of 70. The woman had seven
children, who were all handed over to her elderly parents. Even though the parents
managed to have a sterilization procedure approved, the woman did not show up to
the operation. Two years later the woman gave birth to another child. The parents
had to reapply for approval, but were denied by the guardianship board. The woman
fell pregnant again, this time to a violent partner, who killed her during the
pregnancy.
According to RANZCOG, “the guardianship board gave conflicting rulings thus
distressing the elderly parents and providing uncertainty for the health service,”
though it’s unclear whether the woman’s death could have been avoided if the board
had handled things better. Some carers are worried about one of the
recommendations of the Senate inquiry: that courts and tribunals should develop
information packs to guide medical experts in sterilization cases, which should
specify that the courts and tribunals are not authorized to consider a person’s ability
to parent in the application process.
Establishing the ability to consent is tricky because those with intellectual disabilities
that can have sex may not be aware of the reproductive consequences, and parents
are concerned about the potential for grandchildren.
In Queensland, the Guardianship and Administration Act 2000 defines the capacity
to consent to mean the person is capable of understanding the nature of the
sterilization procedure, freely makes the decisions about the proposed sterilization,
and is able to communicate the decision. But where sex and contraception fall on
that spectrum varies on a case-by-case basis.
Merren Carter said that contraception was not the reason that she wanted to get
Sophie sterilized, but she is relieved that her daughter cannot get pregnant. She fears
that Sophie is at high risk of getting into situations where she might be sexually
abused. “Once, she didn’t arrive at her train stop for five-and-a-half hours. I had no
idea where she was and what happened. Sophie was not able to tell me.”
Carter agrees with almost everything that the Senate Committee Report said, but
feels that many carers for children like Sophie will be too intimidated to go to the
Tribunal to request a hysterectomy, “because they know they will be knocked back.”
Sophie’s friend, who went to New Zealand for the procedure, was not approved to
get the operation in Australia because her case was not considered serious enough.
The New South Wales Guardianship Tribunal states that a hysterectomy must
“promote and maintain a person’s life or prevent serious damage to their health.” The
Carters are attempting to get the definition of “serious damage” expanded to include
mental as well as physical aspects of health.
One parent who has accepted that a hysterectomy may not be possible decided to
put her daughter on the pill, continuously, despite the health risks. “She told me,
‘Oh well she has to die of something’,” Carter said. “It’s sad but as carers you are
pretty worn out anyway and this is just another battle that you know you are going
to lose.”
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