New genetic technologies are allowing us to
assess and alter our own DNA and that of other
living things.
With this technology comes excitement about
the potential for treating disease, as well
as fears that some applications could lead
to a new era of eugenics.
This lesson, in combination with our lesson
“Using Primary Sources to Examine the History
of Eugenics”, will explore the eugenics
movement that began in the United States in
the early 20th century.
The goal is to provide a historical foundation
to consider when discussing the benefits and
implications of genetic technologies that
are emerging today.
This lesson is divided into three sections.
It begins with an overview of the ways in
which genetic technology is currently being
used and its implications for health, medicine
and ethics.
The lesson then traces the history of the
American eugenics movement through historical
events and documents.
Finally, the lesson concludes by highlighting
efforts to halt eugenic practices and looks
ahead to emerging issues at the intersection
of genetics, health, and informed consent.
Section One focuses on the present, highlighting
some of the new health, medical and ethical
advances in human genetics, including genetic
screening, gene therapy, and genome editing.
While we will give a quick overview here,
these topics are explored in more depth in
our “Genome Editing and CRISPR” lesson.
We often recommend following this lesson with
that one.
Genetics is increasingly used to make medical
decisions - for diagnosis, to identify potential
health risks, and to choose medications that
are safer and more effective for each patient.
In 2013, Actor Angelina Jolie publicly shared
her experience using genetic testing to identify
her genetic risk of breast cancer (which ran
in her family) and her subsequent choice to
have a preemptive double mastectomy.
Genetic tests can also be used to predict
how the body may metabolize a drug, and can
affect the dosage or whether the medication
is prescribed at all.
Although genetic testing has been used for
decades to select certain traits in human
embryos, the story of the Nash family brought
it into the public eye.
Pictured here are siblings Molly and Adam
Nash.
Molly was born in 1994 with a deadly disorder
called Fanconi Anemia, a genetic condition
that often leads to cancer.
As a young child, Molly needed a stem cell
transplant to save her life.
Her parents wanted another baby and decided
to use a method of embryo screening with the
goal of conceiving a child who would not have
FA and would be a perfect donor match for
Molly.
Using in vitro fertilization (IVF) and preimplantation
genetic diagnosis (PGD), Molly's brother,
Adam, was conceived.
When Adam was born in 2000, stem cells from
his umbilical cord were donated to his sister.
Since the transplant, Molly has recovered
and both children are doing well.
The Nash family was one of the first in the
United States to go public with their use
of PGD for donor matching.
While many people were supportive, the Nashes
also faced criticism that Adam was a “designer
baby” and suffered unjust risks, conceived
only to help his sister.
For more information on genetic technologies
related to reproduction, check out pgEd’s
lesson on Reproductive Genetic Testing.
People have a range of opinions about the
uses and limits of embryo screening, including
the use of donor matching (as the Nash family
did).
In a 2015 study, a majority of the Americans
surveyed thought it was acceptable to use
PGD to select embryos in order to avoid serious
illness or disability, or to identify a match
for stem cell donation.
Note that close to 20% of people stated it
would be acceptable to screen for personality
traits and other complex characteristics,
even though those options are purely hypothetical.
The genetic contributions to complex traits
such as personality, intelligence, sexual
orientation, and strength are poorly understood,
making these characteristics unsuitable to
this sort of technology.
Beyond reading the genetic code, genetic technology
can now be used to alter a person’s DNA
as treatment for disease – a concept known
as gene therapy.
One technique that has attracted particular
attention is called “genome editing.”
Clinical trials of genome editing to treat
the blood disorder, sickle cell disease (SCD),
are currently underway.
Sickle Cell Disease is caused by a change
to a single letter in a person’s DNA.
This change is in the instructions for making
hemoglobin, the oxygen-carrying molecule in
red blood cells.
Typical red blood cells are disk-shaped and
easily travel through the blood vessels of the body.
The red blood cells of someone with sickle cell disease, on the other hand, are crescent or sickle-shaped
due to the change in the hemoglobin molecule.
Not only does this shape cause them to get
stuck in small blood vessels, it also makes
them fragile and prone to breaking.
Sickle cell disease can be very painful and
life-limiting.
Research is currently underway to see if genome
editing could be used to help those with sickle
cell disease.
One approach involves using genome editing
to tell a patient’s cells to switch on a
gene for an alternate form of hemoglobin that
is typically switched off in adults.
By switching to this other form of hemoglobin,
the red blood cells will no longer sickle.
These changes in the blood cells, which would not
be passed down to future generations, are
showing promise for patients in these early
days of clinical trials.
The use of genome editing in embryos, such
that changes would be passed onto future generations
is an area of scientific, legal, religious,
and ethical debate.
Since 2015, researchers have edited the genomes
of embryos, but stated that they had not implanted
those embryos into a person’s womb.
That changed in November 2018 when a scientist
claimed that the first two children had been
born with genes that had been edited in the
embryonic stage.
In this case, genome editing was used in an
attempt to confer immunity to HIV infection.
This case brings attention to many profound
ethical issues about potential applications
of genome editing in humans.
pgEd has an entire lesson devoted to exploring
this event and its implications in more detail.
While many hope that genetic technologies
can help to prevent or treat disease, there
are many fears as well that the use of genetics
(particularly when applied to reproduction)
will lead to what is sometimes referred to
as “the new eugenics” and “designer
babies.”
These terms are often a short-hand to talk
about worries that genetics will be used unfairly,
to discriminate against groups of people,
including people with disabilities.
Another major fear is that only the wealthy
will have access to the newest advances.
A look into our history will show that those
concerns are well-founded.
In Section Two, we will explore the American
eugenics movement, including the philosophies
and agendas that drove the policies that allowed
forced sterilizations, which aimed to prevent
certain people passing on what were deemed
“negative” traits to future generations.
To begin, please watch this clip from The
Gene: An Intimate History.
As we learned in the film, the American eugenics
movement began in the early 20th century.
The main goal was to improve society and reduce
the burden of people who some considered to
be inferior.
The movement encouraged reproduction among
people or groups seen to have “positive”
qualities while discouraging or preventing
reproduction among those with “negative”
qualities.
The late 19th and early 20th centuries brought
an enormous amount of change to the United
States.
The nation began to shift from an agrarian
to an industrial economy and society, millions
of immigrants arrived, and cities grew at
an exponential rate.
These changes created social challenges, including
increased poverty, slums, disease and child
labor.
Eugenicists believed that immigrants from
Southern Europe were genetically inferior,
as were people living in poverty (meaning,
they were poor because they were genetically
predisposed to be lazy).
Although incorrect, eugenicists believed that
preventing poor people and immigrants from
reproducing would solve many societal issues.
One tactic used by eugenicists to limit the
population of those deemed ‘undesirable’
was restriction of immigration.
The US Immigration Restriction Act of 1924
was strongly influenced by eugenicists, who
lobbied and worked closely with members of
Congress to shape the legislation.
The act severely restricted immigration, particularly
of Eastern European Jews, Italians (as well
as other Southern Europeans), and Africans,
and banned the immigration of Arabs and Asians.
This act prevented thousands of European Jews
attempting to flee persecution by the Nazis
from entering the United States during the
1920s and 30s.
Despite many scientists’ skepticism and
outright rejection, some people began defining
different levels of intelligence through the
use of specific tests.
It was around this time that IQ tests were
created.
This illustration shows how people were categorized
by the mental age that eugenicists believed
they would reach and the type of work eugenicists
believed they would be able to perform.
Part of the goal of eugenicists was to show
that “genetically inferior” people would
become a burden to society.
Intelligence is a complex trait that is still
not well understood.
The early IQ tests, and some would argue even
modern IQ tests, do not account for environmental,
cultural, or social factors that may impact
performance.
Poor performance on an IQ test in the early
20th century could result in a person being
institutionalized or sterilized for “feeblemindedness”.
Various states and organizations promoted
so-called “positive” eugenics by encouraging
people who were deemed superior to have more
children.
The first “Fitter Family” contest, which
was based on "Better Babies" contests, was
held at the Kansas State Fair in 1920.
Both types of contests took a deterministic
view of genetics and biology and assumed that
there were “good genes” for characteristics
such as honesty, morality and industriousness
that were passed on to children.
The Red Cross originally sponsored these competitions;
families were judged in categories including
size of family, attractiveness, health and
generosity.
Many states had laws forbidding interracial
marriage from the late 17th century until
1967, when the Supreme Court ruled in Loving
v. Virginia that such laws were unconstitutional.
Eugenic ideas lent a new set of justifications
for such laws by providing a pseudoscientific
explanation for the perils of “race-mixing.”
Surgical sterilization, a procedure that prevents
a person from reproducing, was a key tool
of eugenics programs throughout the United
States.
Sterilization techniques could include hysterectomy,
tubal ligation (“tying tubes”) and vasectomy.
Forced sterilization programs were underway
in many places by 1937, including Puerto Rico
and other US territories.
Under Law 116, one-third of women in their
twenties were sterilized in Puerto Rico according
to a report from the United States Department
of Health, Education and Welfare.
As such, the impact of that law persisted
for generations.
While overpopulation was cited as the reason
for widespread poverty on the island – and
therefore a justification for the sterilizations
– historians argue that the history of colonization
and the sugar industry better explain the
poverty on the island.
Additionally, Puerto Rico was without full
constitutional rights until 1947 and did not
have a democratically elected governor until
1948.
Law 116 remained in effect in Puerto Rico
until 1960.
Eugenicists used the US legal system to create
a pathway for programs where people could
be sterilized without their consent by local
and state public health authorities.
Carrie Buck was born in 1906 to a poor mother
who was eventually committed to the Virginia
State Colony for Epileptics and the Feebleminded.
Carrie was placed in foster care.
At age 17, Carrie became pregnant as the result
of being raped, most likely by the nephew
of her foster parents.
Her foster parents then committed her to the
Virginia State Colony on the grounds of feeblemindedness,
promiscuity and incorrigible behavior.
In 1927, Carrie was the plaintiff in the Supreme
Court case Buck v. Bell, which established
that the state has the right to force a person
to be sterilized without their consent.
Carrie was sterilized to prevent passing along
“feeblemindedness,” which she, her mother
and her daughter were all declared to exhibit.
(Note that “feeblemindedness” was not
well-defined, but a catch-all term applied
to those with mental disabilities but also
arbitrarily applied as a way to “deal with”
women who were not “behaving properly”.
In the case of Carrie Buck, reporters and
researchers who later interviewed her described
her to be of average intelligence.)
The case of Buck v. Bell was decided 8-1 by
the US Supreme Court.
Justice Oliver Wendell Holmes, Jr., writing
an opinion for the majority, argued that the
interest of the state to improve the gene
pool superseded that of the individual’s
right to maintain bodily integrity.
He wrote:
"We have seen more than once that the public
welfare may call upon the best citizens for
their lives.
It would be strange if it could not call upon
those who already sap the strength of the
State for these lesser sacrifices, often not
felt to be such by those concerned, to prevent
our being swamped with incompetence.
It is better for all the world, if instead
of waiting to execute degenerate offspring
for crime, or to let them starve for their
imbecility, society can prevent those who
are manifestly unfit from continuing their
kind.
The principle that sustains compulsory vaccination
is broad enough to cover cutting the Fallopian
tubes.
Three generations of imbeciles are enough."
While many cases have criticized the Buck
v. Bell ruling, the decision has never been
overturned.
Eugenicists often used pedigrees like the
one seen here to trace the pattern of inheritance
in a family and justify sterilization.
This slide shows a pedigree from a woman sterilized
by the state of Maine.
Eugenicists “scored” family members and
traced the lineage of “defective” as well
as “superior” individuals.
Pedigrees traced traits such as immoral behavior,
degeneracy, criminality, disease, shiftlessness,
intelligence and feeblemindedness and gave
the impression they were inherited genetically.
Environmental factors such as poverty and
access to education (which may provide a much
more likely explanation for why, for example,
criminality or “low intelligence” seems
to run in a family) were largely ignored.
While there was essentially no sound scientific
basis for the genetic inheritance of these
types of characteristics, the creation of
pedigrees based on these characteristics,
nevertheless, helped to establish these ideas
as legitimate science.
German scientists and eugenicists were greatly
influenced by the work of prominent American
eugenicists, the two groups exchanging papers
and visiting one another’s labs and offices.
The United States passed its first law allowing
sterilization in 1907, 26 years before Germany
passed their laws.
Here, on the left, we see a quote from Adolf
Hitler in which he claims to have learned
from American eugenic policies.
On the right is an excerpt from the New England
Journal of Medicine commending the sterilization
program implemented in Nazi Germany.
Many prominent people of the time supported
eugenic efforts.
The Rockefellers, who were oil and banking
magnates, used their family wealth through
their foundation to help support the German
eugenics program.
They funded the program where Josef Mengele
worked before he became a physician at Auschwitz,
for which he is known as the “Angel of Death”.
Later, the Rockefeller Foundation would pay
to relocate approximately 300 Jewish scholars
out of Germany to escape Hitler’s regime.
The Nuremburg Code was established in 1947
as a result of the “Doctor’s Trial,”
which was intended to bring justice to victims
of medical experimentation in Nazi Germany.
Among the lengthy list of crimes that were
prosecuted in the trial were the Nazi’s
efforts to develop mass sterilization techniques
that could be performed without the victims
being aware of it, including secretly exposing
them to dangerous x-rays.
The Nuremberg Code sought to prevent such
atrocities from happening again by establishing
protections around voluntary consent and safety
in medicine and research.
One of the core protections of the Nuremberg
Code is the informed consent of willing participants.
These codes have guided the development of
many medical and research studies with positive
outcomes, including successful clinical trials
and drug development.
However, the Nuremberg Code was not a cure-all,
and did not halt unethical practices related
to the American eugenics movement and forced
sterilization.
By WWII, many scientists in the US had rejected
earlier scientific theories that had provided
the justification for the eugenics movement,
but these ideas had taken root in many state
governments and public health initiatives.
With the weight of the Buck vs. Bell ruling
behind them, sterilizations continued.
This pamphlet, which aimed to persuade the
public about the merits of sterilization,
was published by an organization called the
Human Betterment League of North Carolina.
James Hanes (of the Hanes clothing and hosiery
company) founded the organization in 1947.
The goal of the organization was to promote
the sterilization of those deemed mentally
unfit.
North Carolina had an aggressive state-run
push to sterilize people, overwhelmingly women
and girls, many of whom were rape victims
who were deemed “promiscuous.”
Others were considered to be intellectually
inferior, classified as “morons,” “idiots”
or “feebleminded.”
People with mental illness as well as physical
illness, such as epilepsy, were also sterilized.
2,990 of the almost 7,600 sterilizations in
North Carolina were performed on people between
the ages of 10 and 19.
The total number of 7,600 includes only those
operations directed by the state eugenics
board and not those performed locally, and
likely unreported, by an individual doctor
or hospital.
Indigenous people were specifically targeted
for sterilization, as part of a longer history
of mistreatment and erasure of Indigenous
people in the United States.
This image, produced by the US Department
of Health, Education and Welfare, sought to
link sterilization to increased wealth and
happiness.
The image on the left depicts a larger family
with 10 children, parents who are unhappy,
and less wealth, represented by the lone horse.
Whereas the picture on the right shows a much
smaller family, with happy parents, and a
lot of wealth.
We often ask people to guess when they think
this image was produced.
They are often surprised to hear it was in
1974!
In 1976, the US Government Accounting Office
released its finding that 3,406 sterilizations
were performed at Indian Health Service (IHS)
centers between 1973-1976.
Given the number of stories they and other
community members had heard about indigenous
women being forcibly sterilized, Dr. Constance
Redbird Pinkerton (a Choctaw-Cherokee physician)
and Marie Sanchez (a chief tribal judge) each
decided to conduct their own research.
Through their efforts to document the experiences
of many indigenous people, they found significant
differences with the number of procedures
that were recorded.
As a result, some researchers believe that
the number of women who were sterilized is
much higher than initially reported.
Adding to the trauma of these events is the
evidence that many of the sterilizations,
often done without consent, were conducted
at IHS centers that were intended to help
and support people living on reservations.
In many cases, forced sterilizations only
came to a halt through the activism and advocacy
of the groups of people being targeted.
Section Three highlights the work of activists,
policymakers and scientists to bring awareness
to the stories of those affected by eugenics
practices and right the wrongs of the past,
ushering in a new era of safeguards against
future injustices.
Protests against forced sterilization took
place around the nation during the 1970s,
including the one in North Carolina pictured
here.
Though many individuals opposed the practice
from the start, protests against forced sterilization
grew out of the civil rights and women’s
movements.
Many states, including California, outlawed
the practice in the mid and late 1970s.
In the 1978 Madrigal v. Quilligan case, ten
working-class Latinx women who were coerced
into sterilization or sterilized without their
consent brought a federal class action suit
against the doctors who sterilized them and
the Los Angeles County Hospital.
The case was inspired by women talking with
one another and coming forward, and more broadly,
by the Chicano Movement that sought rights
and fair treatment for Mexican migrants, among
others.
While the women lost their case, it was key
in revising the way in which informed consent
was carried out in the medical industry.
Until the lawsuit, consent forms were only
in English and consent was often sought during
active labor and with threats of withholding
everything from pain medicine to future welfare
benefits.
Additionally, rules such as waiting periods
for decisions about sterilization after birth
were implemented.
The documentary “No Más Bebés” shares
the stories of the women from this case.
Elaine Riddick has been an outspoken survivor
of North Carolina’s forced sterilization
program.
She was born into poverty and raised by her
grandmother.
At the age of 13, she was raped by a man in
her neighborhood and became pregnant.
She gave birth in March 1968 and was sterilized
immediately afterward without her knowledge
or consent.
Her grandmother, who was illiterate, signed
the consent form for sterilization out of
fear that Elaine would be sent to an orphanage
if she refused.
Elaine did not discover what had happened
to her until she married and tried to conceive
a child.
In 2011, the governor of North Carolina established
a commission to determine how much to compensate
Elaine and the estimated 1,500 to 2,000 other
living victims of sterilization.
There was much debate about whether any amount
of money could compensate for not only the
loss of fertility, but also the branding of
victims as feebleminded and promiscuous.
North Carolina became the first state in the
United States to approve payments to victims
of its eugenic sterilization programs in 2013,
after 10 years of debate and legislative votes.
The state officially sterilized at least 7,600
people.
As of February 2018, reparations of $50,454
have been paid to 220 victims.
The only other state to pay compensation is
Virginia, agreeing in 2015 to pay victims
$25,000 each.
Sterilization continues to make headlines,
often as it relates to incarcerated people
and criminal sentencing.
Investigative reporting revealed in 2014 that
from 2006-2010 at least 132 inmates in California
prisons were sterilized illegally.
The sterilizations were characterized by unsigned
consent forms, falsified documents, and women
stating they were coerced.
Much of the sterilization programs were propelled
forward through racism and promises of economic
relief and stability.
One of the doctors involved in a high percentage
of the sterilizations noted to a reporter,
that the costs of sterilizations were small
“compared to what you save in welfare for
these unwanted children.”
New laws were passed as a result to better
protect inmates and improve consent procedures.
In 2018, however, a woman awaiting sentencing
underwent sterilization, after the judge suggested
this could favorably impact how long she was
incarcerated.
Many argued this was coercive, as the pressures
of a possible shorter sentence make true informed
consent impossible.
The National Institutes of Health (NIH) oversees
the funding and conduct of millions of dollars
in medical research, and plays an important
role in making sure medical research is fair,
safe and equitable.
NIH protections for human research continue
to adapt to the changing field of genetics.
In addition to state-level action, the United
States government works to ensure that progress
in science, research and technology proceeds
in an ethical and socially acceptable manner,
so as not to see echoes of the past repeated.
They require coursework, training, and external
review bodies to oversee research, offer certifications
of confidentiality, and work to ensure that
individuals such as women, children and minorities
are included in clinical research.
At the same time, federal agencies continue
to struggle to recruit a fair and representative
sample of the population to participate fully
in the benefits of scientific advancement.
While advances in genetics bring hope for
the betterment of human health, they also
bring fear of a new eugenics era - where genetic
technologies have the potential to be used
in ways that are harmful and that increase
inequity.
By looking at the history of the American
eugenics movement, we can learn how genetics
has been used as a tool to justify human rights
violations, and critically assess how we can
move forward without repeating the mistakes
from the past.
