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[연구윤리] 미국의 과테말라의 ‘악마의 매독 실험’ 피해자들

1940년대 미국이 고의적으로 과테말라인 1500명을 매독에 감염시킨 실험의 피해자들의 고통이 계속되고 있다. [가디언] 

http://www.guardian.co.uk/world/2011/jun/08/guatemala-victims-us-syphilis-study

Guatemala victims of US syphilis study still haunted by the ‘devil’s experiment’

Survivors tell of damaged lives after being deliberately infected in secret 1940s experiment on 1,500 men, women and children


  • Rory Carroll
  • Guatemala syphilis study victim Marta Orellana

    Marta Orellana, 74, a victim of the US
    syphilis trial when she was nine. ‘They never gave me a chance to say
    no,’ she says. Photograph: Rory Carroll for the Guardian

    Marta Orellana says she was playing with friends at the
    orphanage when the summons sounded: “Orellana to the infirmary. Orellana
    to the infirmary.”

    Waiting for her were several doctors she had
    never seen before. Tall men with fair complexions who spoke what she
    guessed was English, plus a Guatemalan doctor. They had syringes and
    little bottles.

    They ordered her to lie down and open her legs.
    Embarrassed, she locked her knees together and shook her head. The
    Guatemalan medic slapped her cheek and she began to cry. “I did what I
    was told,” she recalls.

    Today the nine-year-old girl is a
    rheumy-eyed 74-year-old great-grandmother, but the anguish of that
    moment endures. It was how it all began: the pain, the humiliation, the
    mystery.

    It was 1946 and orphans in Guatemala
    City, along with prisoners, military conscripts and prostitutes, had
    been selected for a medical experiment which would torment many, and
    remain secret, for more than six decades.

    The US, worried about
    GIs returning home with sexual diseases, infected an estimated 1,500
    Guatemalans with syphilis, gonorrhea and chancroid to test an early
    antibiotic, penicillin.

    “They never told me what they were doing,
    never gave me a chance to say no,” Orellana said this week, seated in
    her ramshackle Guatemala City home. “I’ve lived almost my whole life
    without knowing the truth. May God forgive them.”

    The US
    government admitted to the experiment in October when the secretary of
    state, Hillary Clinton, and the health secretary, Kathleen Sebelius,
    issued a joint statement apologising for “such reprehensible research”
    under the guise of public health. Barack Obama phoned his Guatemalan
    counterpart, Alvaro Colom, to say sorry too.

    Susan Reverby, a
    professor at Wellesley College in the US, uncovered the experiment while
    researching the Tuskegee syphilis study in which hundreds of African
    American men were left untreated for 40 years from the 1930s.

    The
    Guatemalan study went further by deliberately infecting its subjects.
    Not only did it violate the hippocratic oath to do no harm but it echoed
    Nazi crimes exposed around the same time at the Nuremberg trials.

    The
    victims remained largely unknown but the Guardian has interviewed the
    families of the three survivors identified so far by Guatemala. They
    chronicled lives blighted by illness, neglect and unanswered questions.

    “My
    father didn’t know how to read and they treated him like an animal,”
    said Benjamin Ramos, 57, the son of Federico, 87, a former soldier.
    “This was the devil’s experiment.”

    Mateo Gudiel, 57, said his
    father, Manuel, 87, another ex-conscript, has syphilis-linked
    infections, dementia and headaches. “Some of this has been passed on to
    me, my siblings and our children.” Children can inherit congenital
    syphilis.

    More than half of the subjects were low-ranking soldiers
    delivered by their superiors to US physicians working from a military
    base in the capital. The Americans initially arranged for infected
    prostitutes to have sex with prisoners before discovering it was more
    “efficient” to inject soldiers, psychiatric patients and orphans with
    the bacterium.

    Guatemala’s official inquiry, headed by its
    vice-president, is due to publish its report in June. “What impacted me
    the most was how little value was given to these human lives. They were
    seen as things to be experimented on,” said Carlos Mejia, a member of
    the inquiry and head of the Guatemalan College of Physicians.

    The
    US scientists treated 87% of those infected with syphilis and lost track
    of the other 13%. Of those treated about a tenth suffered recurrences.

    The
    US medical establishment, including the surgeon-general, keenly
    followed the study even though John Cutler, who led the Guatemala team,
    acknowledged ethical violations in a 1947 letter, saying: “Unless the
    law winks occasionally, you have no progress in medicine.”

    His
    supervisor, RC Arnold, urged discretion. “If some goody organisation got
    wind of the work there would be a lot of smoke.” In the end the study
    yielded no useful information and was buried.

    Guatemalan
    co-operation was won by offering cigarettes to subjects and material to
    resource-starved institutions. Psychiatric patients who could not give
    their own names were registered under nicknames such as the “mute of St
    Marcos”.

    It is unclear what, if anything, was promised to the
    Sisters of Charity in return for supplying orphans to the tall men in
    white coats who visited each week from 1946-48.

    “They didn’t tell
    me why they singled me out,” said Orellana, who was four when sent to
    the institution after her parents died. After the initial gynaecological
    probing, when she assumes she was infected, she was given penicillin
    weekly. “My body hurt and I was sleepy, I didn’t want to play.” At least
    10 other girls were also picked for the study, she added.

    The
    treatment failed – but even as an adult, when she worked as a maid and
    in factories, doctors would say only that she had “bad blood”, leaving
    her ailments a mystery. A “loving and patient” husband helped her
    overcome intimacy issues. She has five children, 20 grandchildren and
    eight great-grandchildren.

    When the US finally owned up to the
    scandal in 2010 Orellana, near crippled from a stroke but still lucid,
    was mesmerised. She tested positive for syphilis, said Rudy Zuniga, a
    lawyer who is representing alleged victims in a class action in the US.
    Only a handful of the original 1,500 may still be alive but there could
    be dozens if not hundreds of infected children and grandchildren, he
    said.

    Pablo Werner, a human rights
    lawyer who is investigating the case, doubted Guatemala would accept
    responsibility let alone pay compensation for its complicity in the
    experiment. “Our judicial system is not famous for speed or fairness.
    Even if the Guatemalan doctors who participated in this are dead their
    families still have connections,” he said.

    With the few survivors
    ailing, their Guatemalan and US lawyers hope to negotiate speedy
    compensation with US officials at a meeting due in August, said Zuniga.
    If that fails the case will go to a Washington district court and could
    last years.

    For Orellana the resolution of her life’s mystery,
    published in local media, has come with a catch. The criminal gangs
    which plague Guatemala City think she received a huge payout and are
    making threats, demanding a cut.

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