Bulletin - Researchers Claim to Create Genetically Modified Children
Genetic Crossroads May 9th, 2001
A team of US scientists has set off a flurry of news stories
with the claim that they and others have created "genetically
engineered children." The researchers report in the March
issue of the journal Human Reproduction on the creation of "nearly
30 babies worldwide" who, they say, represent "the
first case of human germline genetic modification resulting
in normal healthy children." <www.humrep.oupjournals.org/cgi/content/abstract/16/3/513>.
These events raise a red flag signaling the urgency of working
toward bans on the manipulation of the genes we pass on to our
children--the technology known as "human germline engineering."
The gene transfer procedure in question is not germline modification
in the usual sense: It cannot lead to the controlled alteration
of traits that most disturbs those working to prohibit human
germline engineering. But the procedure has put the future health
of these children--and their descendants--at possible risk of
an extremely serious medical condition that often develops later
in life.
In addition, the procedure flouts the widespread conviction
among scientists, political leaders, and the general public
that tampering with the human germline is medically unnecessary
and unsafe, and that it could open the door to a "techno-eugenic"
human future, with potentially disastrous outcomes. In an increasing
number of countries world-wide, human germline engineering is
being declared a criminal act.
How the Procedure Works
The researchers--Jason Barritt, Carol Brenner, Henry Malter
and Jacques Cohen of the Institute for Reproductive Medicine
and Science at the St. Barnabas Medical Center in New Jersey--were
using a technique known as cytoplasmic transfer. They injected
cytoplasm (cellular material outside the nucleus) from eggs
of fertile women into "potentially compromised" eggs
of women whose difficulty in establishing pregnancies they presumed
to be due to defects in the cytoplasm of their eggs.
Cytoplasm contains structures called mitochondria, which produce
energy for the cell and which have a small number of their own
genes. So when cytoplasm is transferred, some mitochondria and
their genes are likely to be transferred as well.
Some of the babies born after the cytoplasmic transfers have
been tested and found, unsurprisingly, to have mitochondrial
genes from both the donor and recipient eggs. Since mitochondrial
DNA is passed from mothers to their children, the introduced
mixed-mitochondria condition can be considered a germline alteration.
The Medical Risks
A mixture of mitochondrial types is known to occur naturally,
and sometimes to cause life-threatening illness. The often debilitating
symptoms of "mitochondrial heteroplasmy," as it is
called, can begin at any point in life including well into adulthood.
(See United Mitochondrial Disease Foundation, <www.umdf.org>.)
So the claim by the St. Barnabas researchers that they have
produced "normal healthy children" may, tragically,
be premature.
The St. Barnabas report in Human Reproduction asserts that
naturally occurring "pathological" heteroplasmy associated
with disease differs from the kind produced by cytoplasmic transfer,
which it calls "benign heteroplasmy [that occurs] after
mixing two potentially normal populations of mitochondria."
But it offers no evidence for the assertion that the mitochondrial
heteroplasmy they have produced in these children is, in fact,
benign.
We do not know how much the parents seeking treatment for infertility
were told about the likelihood of mitochondrial heteroplasmy
in their babies, or about its association with mitochondrial
disease. The St. Barnabas website, <http://www.sbivf.com>,
continues to offer the procedure without mentioning these risks.
"Inadvertent" Germline Engineering
Cytoplasmic transfers have been done for several years at a
number of infertility centers, and the mixed mitochondrial condition
of the children born after the procedures has been reported
in the past. It has also been recognized for some time that
a form of germline modification is therefore produced by cytoplasmic
transfer. The real news at this juncture is the St. Barnabas
researchers' provocative assertion that they have produced genetically
altered children.
The St. Barnabas claim began drawing attention after the publication
of an editorial about it in the April 20 issue of the journal
Science. In "Inadvertently Crossing the Germ Line,"
bioethicists Erik Parens of the Hastings Center and Eric Juengst
of Case Western Reserve wrote, "This news should gladden
all who welcome new children into the world. And it should trouble
those committed to transparent public conversation about the
prospect of using `reprogenetic' technologies to shape future
children." (See <www.sciencemag.org/cgi/content/summary/292/5516/397>.)
Parens and Juengst go on to speculate why the researchers might
have felt justified in ignoring the NIH Recombinant DNA Advisory
Committee's de facto ban on germline interventions. One of their
suggestions, later confirmed by Cohen, was that the work was
privately funded, and the NIH committee technically has jurisdiction
only when federal moneys are involved. In many countries, the
experiments would be illegal whether or not government money
was spent.
Parens and Juengst, who consider the act "unfortunate"
but "perfectly legitimate," conclude with the "hope
that before any other inadvertent steps are taken toward making
IGMs [inheritable genetic modifications], those interventions
will receive the public discussion they deserve"--a formulation
that unfortunately can be read as assuming that such other steps
will ultimately be taken.
Controlling the New Genetic and Reproductive
Technologies
There is little doubt that the St. Barnabas researchers understood
the medical risks and intensely controversial nature of the
procedures, as well as the legal technicalities of their situation.
Yet they decided to cross one of the most politically and ethically
consequential technological thresholds human beings have ever
confronted. Their disregard starkly demonstrates the urgency
of bringing human genetic and reproductive technologies--whether
privately or publicly funded-- under effective societal control.
Some media coverage of the situation, notably by Gina Kolata
in the New York Times accepted the claim that cytoplasmic transfer
is simply a fertility treatment ("Babies Born in Experiments
Have Genes From 3 People," May 5, 2001). Most articles
featured headlines about "genetically altered" or
"genetically engineered" babies. Only the non-profit
group Institute for Science in Society considered the babies'
risk of future mitochondrial disease. (Joe Cummins and Mae-Wan
Ho, May 2 ISIS Report, <www.i-sis.org/first_gm_humans.shtml>.)
It would be unfortunate if headlines about "GE babies"
and claims that "the germ line has already been crossed"
were used to demoralize opponents of a techno-eugenic future.
We need to begin immediately to put in place global accords
that ban human genetic manipulation and establish participatory
procedures for deciding about the acceptability of other new
genetic and reproductive technologies.
In the meantime, the St. Barnabas Medical Center and all other
institutions should suspend use of cytoplasmic transfer immediately.
In addition, the US Congress should determine how such a medically
and politically dangerous procedure was permitted in the first
place.
The genetic redesign of human beings can and must be prevented.
Highlighted Topics
