Tech Flesh 9: The Secret History of Jessie Gelsinger's Death
From the Manhattan Project to the Human Genome Project
"The Alta meeting is thus the bridge from DOE's (Department of
Energy) traditional interest in detection of mutations to [the] push for a
Human Genome Initiative, and provides one of several historical links between
genome projects and another massive technical undertaking of the 20th
century--the Manhattan project."
— Robert Cook-Deegan, from the DOE
When its discovery was first contemplated we were told that it was the
"philosophers' stone" (because with it we could change what was thought
immutable) and the "elixer of life" (because with it we might live forever).
Normally reserved scientists were elated that through this new knowledge they
would soon arrive at the secret to all creation. While occasion for such claims
has most recently been the mapping of the human genome, the above sentiments
manifest as well in 1889, when Marie Curie discovered radium.
While scientific breakthroughs often elicit hyperbolic enthusiasms,
the similarities between the results of these two major investigative feats
becomes even more intriguing when we begin to reflect on the significance of the
Human Genome Project (HGP) being a direct descendant of Curie's radium research.
According to government documents ranging from the DOE "Low Dose Raditiation
Research Program Timeline" (http://www.lowdose.org/) to the histories of
the first funding of the HGP (www.ornl.gov/TechResources/Human_Genome),
the key event responsible for research aimed at delineating human DNA fragments
was the bombing of Nagasaki and Hiroshima. Hence the institutional home of the
Human Genome Project is actually the Manhattan Project.
The Manhattan Project fell under the auspices of the U. S. Army Corps
of Engineers, with most of the research being done in Manhattan, hence the name.
While the Department of Defense and other security agencies support research on
biological warfare, the study of the long-term effects of radiation poisoning
was carried out by a civilian agency, first the Atomic Energy Commission (AEC)
and now its successor, the cabinet level Department of Energy. The DOE was
studying relatives of folks on the wrong end of a chain reaction set off to end
World War II because the government wanted to facilitate the use of nuclear
energy, as well as continue research on nuclear bombs. Yet there remained a
sticky problem of radioactive contamination. The government wanted to learn a
lot more about how it affected us.
It is longstanding practice among reputable scientists not to use the
results of Nazi studies, the thought being that it is indecent to
retrospectively assign any usefulness whatsoever to the savage torture of
helpless, blameless victims. Yet the AEC and now the DOE, to this day, use
descendants of Nagasaki and Hiroshima survivors as human guinea pigs, with no
worry that the victims of this wartime atrocity never signed subject consent
forms. Through these studies, scientists found higher rates of leukemia than
they would among those whose ancestors were not exposed to radioactive fallout,
allowing them to make very rough predictions about the effects of exposure to
low levels of radiation.
While scientists understood the descendants had a higher risk of
leukemia, according to David Smith, a founder and former Director of the DOE
Human Genome Program, "The program [to map the human genome] really grew out of
a need to characterize DNA differences between parents and children more
efficiently. DOE led the development of many mutation tests, and we were
interested in developing even more sensitive detection methods." (http://www.ornl.gov/hgmis/publicat/97pr/evolve.html)
The idea to begin mapping the human genome was first mentioned in
Alta, Utah. The DOE explains that "in 1984, at a meeting convened jointly by the
DOE and the International Commission for Protection against Environmental
Mutagens and Carcinogens, the question was first seriously asked: Can we, should
we, sequence the human genome?"
The reason for the DOE to develop a map of the human genome was not to
ascertain whether radiation was harmful. Human population studies, clinical
evidence of radiation poisoning on individuals, and the large number of
radiation studies done on mammals left no confusion on this point. In the face
of this significant evidence, one might reasonably have thought that a group
organized to protect against environmental mutagens and carcinogens, in a
meeting with the DOE, might initiate discussions on how to limit environmental
mutagens and carcinogens, as that is the best protection against them.
And yet the conversation over the four-day conference took a very
different turn. Rather than address problems of radioactive wastes leaking from
storage tanks into our air, soil and groundwater, the scientists (largely
employed by the DOE-controlled laboratories at Los Alamos and Livermore) decided
the correct object of intervention was the human body. Rather than clean up the
environment, these scientists came up with the idea to clean us up.
"The ultimate goal" declared by the DOE on behalf of the HGP "is to
exploit those resources [our DNA] for a truly profound molecular-level
understanding of how we develop from embryo to adult, what makes us work, and
what causes things to go wrong. The benefits to be reaped stretch the
imagination." Indeed, especially if one is working on nuclear toxicities at the
DOE. The anonymous writer, a cross between Dr. Strangelove and Disney's Tomorrow
Land narrator, informs us that "even gene therapy will become possible, in some
cases actually 'fixing' genetic errors."
As the DOE makes clear, genetic errors are not part of the human
condition, but a consequence of the actions on the part of the DOE itself, which
is responsible for the tritium that has leaked into the drinking water in
Washington and is seeping into the Columbia River. Whether through direct
consumption of water or the grapes, potatoes, apples and salmon in the area, the
contaminants are already in the human food chain. As the DOE itself warns: "When
present merely in low but significant amounts, toxic agents such as radiation or
mutagenic chemicals work their mischief in the most subtle ways, altering only
slight the genetic instructions in our cells. The consequences can be heritable
mutations too slight to produce discernible defects in a generation or two but,
in their persistence and irreversibility, deeply troublesome nonetheless." A
recent report written under the auspices of the National Research Council at the
request of the DOE says current plans for nuclear wastes "will eventually fail"
and that 30 percent of the billions of gallons of radioactive wastes are already
In 1904, 15 years after Curie's discovery, the "elixir of life"
claimed its first canary. Clarence Dally, who was assisting Thomas Edison's
research on X-rays, developed a malignant carcinoma. In 1999, 15 years after
deciding that mapping the human genome could save us from the effects of
radiation poisoning, Jesse Gelsinger was the first victim of gene therapy.
Gelsinger, an 18 year-old with a rare liver disorder (one that was manageable
with medicine) was injected with a virus, quickly developed a fever of 104
degrees, went into a coma the next day, and shortly thereafter died
Jacqueline Stevens is Visiting Professor of Political Science,
Pomona College. She is the author of Reproducing the State (Princeton,
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