EXPLORATORY INITIATIVE ON THE NEW HUMAN GENETIC TECHNOLOGIES
BULLETIN #2 MAY 9, 2001
Researchers Claim to Create Genetically Modified Children
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 conditionthat 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 thedonor 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, <www.sbivf.com/cytpqa.htm>, 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 thechildren 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 Parensof 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, whetheror 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 decidedto cross one of the most politically
and ethically consequential technological thresholds human beings have ever confronted.
Theirdisregard starkly demonstrates the urgency of bringing human geneticand reproductive
technologies--whether privately or publicly funded--under effective societal control.
Some media coverage of the situation, notably by Gina Kolata in theNew 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.
# # #
For samples of media coverage, see"Genetically altered babies born," BBC News
Online, May 4,<news6.thdo.bbc.co.uk/hi/english/sci/tech/newsid%5F1312000/1312708.stm>,"Gene-altered
babies spark debate,"<www.msnbc.com/modules/exports/ct_email.asp?/news/569043.asp>,
and"Bio-Babies Spawn Ethics Question," Wired, May 5,<www.wirednews.com/news/print/0,1294,43579,00.html>.