here - Center for Genetics and Society



here - Center for Genetics and Society
Genetically Modified Babies?
Human Biotechnologies,
Immediate Threats to Children,
How We Can Save Childhood
Enola Aird, Mothers for a Human Future
Marcy Darnovsky, Center for Genetics & Society
Global Summit on Childhood, April 11 2014
Science fiction.
Science fact.
Science fact?
Recent headlines
Three-parent IVF is here, and there’s
nothing to fear - Al Jazeera America
FDA weighs risks of 3-person embryo fertilization – USA Today
Some beneficial uses of genetics
• Carrier testing for serious inherited diseases
• Newborn screening for treatable conditions
• Diagnosis aids in difficult childhood cases
• Confirm inherited serious & treatable diseases
• Emerging: pharmacogenomics, testing tumors
• Exonerate the falsely accused
• Match crime scene DNA against a suspect
New kinds of gene tests
 Very early fetal gene tests
 Extensive newborn screening
 Testing kids for traits including
 Direct-to-consumer gene tests
Urgent questions
What do these genes mean?
“Incidental findings”
Genetic privacy / discrimination
Who decides, who consents?
Selecting for / against traits
How does this change children
and childhood?
Early fetal gene tests
Sex selection in the US
Genetic testing for “athleticism”
NY Times: “Born to run?”
• Gives parents and
coaches early information on their child’s
genetic predisposition
for success in…speed /
power or endurance
• Safe to use on the
youngest of athletes
DTC gene tests for kids
An immediate threat
What should it be called?
• Three-parent babies
• Three-parent IVF
• Three-person embryos
• Mitochondrial manipulation
• Mitochondrial replacement
• Mitochondrial donation
• Oocyte modification
“3-person embryos”
Not safe
FDA panel chair Evan Snyder
“not enough data in animals or in vitro to
move to human trials…concerns [about]
preclinical data…also the basic science”
FDA panel member David Keefe
“displays of technical virtuosity should not
blind us to potential hazards nor to
overestimate the scope of their applicability”
Human experimentation
Doesn’t “save lives”
No claim that it would help people who
are sick or suffering; a risky experiment
for creating a new child. But media
reports say:
“This treatment would save children's lives –
so why won't the government allow it?”
Polly Toynbee, The Guardian, 2/10/14
No large demand
• 1 in 5-10,000 have some kind
of mitochondrial disease
• 85% have mutations in nuclear
DNA – they are not candidates
• Most of the rest produce some
eggs with low levels of mutation
– why not screen embryos?
• UK advocates estimate 10
families per year
Alternative options
• Adoption
• Third-party eggs
• Prenatal gene test
• Embryo screening
The world we want to avoid
International law
• 40+ countries
prohibit inheritable
genetic modification
• Every country that
has ever considered
it has prohibited it
What you can do
• Email UK authorities before April 25 to
share your concerns. Sample message
and contact info:
• Help us spread the word. Contact us
about briefings for organizations with
which you are affiliated.
Mothers for a Human Future
Center for Genetics and Society

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