RACHEL'S ENVIRONMENT & HEALTH NEWS #720
                     ---March 15, 2001---

ENGINEERING HUMANS, PART 1
by Rachel Massey*



Inheritable characteristics are passed from one generation to the
next through DNA, a molecule that is present in all of our cells.
Scientists think of DNA as being divided into genes, or units of
genetic information. In the past three decades, scientists have
learned how to mix and match characteristics among unrelated
creatures by moving genes from one creature to another. This is
called "genetic engineering."
 

As we saw in our series on genetic engineering of food crops,
genetic "engineers" are now moving genes around among plants,
animals, and bacteria on a regular basis, but with very little
understanding of the possible consequences, and almost no safety
testing. Now genetic engineers are starting to modify the genes
of humans, using three approaches: 1) cloning, 2) somatic cell
manipulation, and 3) human germline manipulation.
 

Cloning: Cloning uses the DNA of an existing individual to create
a new individual. The best-known example is Dolly, a sheep that
was cloned using DNA from a sheep that had been dead for six
years. A human has not yet been cloned, but a team of researchers
including an American and an Italian recently announced they are
going to attempt it.[1]
 

Somatic cell manipulation: Somatic cells are all the cells of the
body that do not pass DNA on to the next generation. Somatic cell
manipulation is currently practiced in some medical research
centers under the name "gene therapy." For example, researchers
are experimenting with ways to introduce genes into the blood
cells of patients with hemophilia (a blood disorder), and into
cells of the immune system in patients with Severe Combined
Immune Deficiency (SCID), a rare inherited disorder of the immune
system. The idea is to "correct" the genetic component of the
disease instead of, or in addition to, treating the disease with
drugs. Hundreds of trials have been carried out, but in most
cases the patients have not been cured.[2]
 

Germline manipulation: Germ cells (sperm and eggs) do pass DNA
from one generation to the next. Germline manipulation refers to
changes in the germ cells changes which will be inherited by
successive generations. Designing future generations through
germline manipulation is still in the realm of science fiction,
but just barely: some influential scientists are arguing that it
should be attempted.
 

Why are scientists pursuing these techniques? Some researchers
see somatic cell manipulation as a promising way to treat serious
diseases, such as cystic fibrosis. Other genetic engineers may
have less idealistic motives. Engineering human cells is
technically appealing, and the mere fact that we possess this
technology is, for some people, sufficient reason to use it. Some
technological optimists are fascinated by the idea of germline
engineering as a way to "take evolution into our own hands" by
redesigning the genetic information in our children's cells.
 

Engineering human cells could also be a big money-maker. For
example, one company hopes to create a market in "organ repair"
generating cloned cells and tissues to insert into existing
people's organs.[3, pg. 18] Other companies and researchers
simply want to keep open the option to engineer human cells
because it could be profitable in the future, even if they have
not made investments in doing it right now.[3]
 

Cloning
 

There are two main applications of cloning. One is "embryo
cloning," which could be used to create new human parts. For
example, some scientists are working on methods to produce a new
embryo from an existing person's cells and then use the cells
from that embryo to produce replacements for failing body parts
in the original person.[4] An embryo develops about a week after
conception, and in its early stages consists of a few identical
cells.
 

"Reproductive cloning" would produce complete cloned individuals,
like Dolly the sheep. Genetic engineers are now able to clone
mice and cattle as well as sheep.[5, pg. 45] Human cloning would
produce a new person who is a near genetic copy of another
person. He or she would, however, be different from the original
person because he or she would develop in a different environment
and have different experiences.
 

Many people think both "reproductive cloning" and "embryo
cloning" are repugnant and unethical. Other people think embryo
cloning could be acceptable in some cases to treat disease but
think reproductive cloning is wholly unnecessary and never
justifiable.
 

In the U.S., federal funds cannot be used for reproductive
cloning experiments and some states have outlawed it, but there
is no federal law against it.[5, pg. 4] A team of researchers
recently announced they are going to attempt human cloning in an
"unidentified Mediterranean country."[1] These researchers have
been widely condemned, but some of their colleagues are primarily
concerned that this early attempt at cloning could give the
technology a bad name and reduce the public's willingness to
allow further cloning research.
 

Somatic cell manipulation
 

Somatic cell manipulation adds genes to existing cells in some
part of the human body, such as the lungs or the blood. Somatic
cell manipulation is only supposed to affect the DNA of the
person undergoing the treatment. In theory, it does not produce
changes that could be passed on to that person's children and
grandchildren.
 

Somatic cell manipulation was first attempted on humans in
1990.[6, pg. 110] The mechanisms of somatic cell manipulation are
poorly understood, and the effects can be lethal. In one case, a
teenager died after researchers at the University of Pennsylvania
tried to introduce genes into his liver cells, using a modified
virus to carry the genes to their destination. The idea was that
the virus would "infect" the target cells and insert the desired
genes, without being dangerous itself. The researchers are still
not certain how they killed their patient, but evidence suggests
the virus invaded many organs besides the liver and triggered a
severe immune reaction.[7]
 

According to the U.S. Food and Drug Administration (FDA), somatic
cell manipulation also poses the threat of insertional
mutagenesis, in which inserting new DNA changes or disrupts the
functioning of existing DNA. (See REHN #716. ) FDA also says
researchers attempting to alter somatic cells could inadvertently
introduce foreign genes into the patient's sperm or egg cells.[8,
pg. 4689] If this happened, researchers could accidentally change
the genetic information passed from parent to child.
 

Researchers are required to submit data to FDA and the
National Institutes of Health (NIH) on any adverse effects that
occur during somatic cell manipulation trials. After the
teenager's death at the University of Pennsylvania, an
investigation revealed that many researchers were not reporting
adverse effects to NIH, which can make the information public.
Some researchers say it would "confuse people" to report every
death that occurs during these trials because many participants
are seriously ill and could die for reasons unrelated to the
treatment.[9]
 

Right now, most information that researchers submit to FDA on
somatic cell manipulation experiments is kept secret.[8, pg.
4688] The agency has issued proposed regulations under which
information about somatic cell manipulation trials will be made
available to the public, and is accepting comments on the
proposed regulations until April 18, 2001.[10]
 

Germline manipulation
 

Germline manipulation permanently changes the inheritable
characteristics passed from one generation to the next. This can
be done by altering sperm or egg cells or by altering an embryo.
If an engineered embryo survives and develops into a baby, the
changes introduced by germline manipulation will be present in
every cell of that baby. If the baby survives to adulthood and
has children, the changes will be passed on to future
generations, through that person's sperm or egg cells.
 

Some researchers try to justify germline manipulation by saying
it could remove or replace DNA associated with an inherited
disease. This is a far-fetched idea and unnecessary; even if both
members of a couple have the genes for a hereditary disease,
there are other ways to produce a child without the disease,
including using donated sperm or eggs. Other researchers say they
want to use germline engineering to give a baby new genetic
features it could not have gotten from its parents. This goal
cannot be achieved through any other technology. It is also a
goal that, by definition, could never be medically necessary
because it would not serve to relieve sickness in an existing
person. Instead, it would aim to "improve" future generations of
human beings.[6, pg. 113]
 

The attempt to "improve" the human race genetically -- as one
might create a specialized breed of horses or dogs -- is known as
eugenics. In the early decades of the 20th century, eugenics
projects in the U.S. led to forced sterilization of some people
who were considered to have undesirable traits. This included
prison inmates who were considered to be "hereditary criminals."
One forced sterilization was justified by describing a man as
"subnormal mentally," with "every appearance and indication of
immorality."[6, pgs. 20-21] In Nazi Germany, the systematic
extermination of Jews and other people was one part of a eugenic
project to breed a "superior race."[6, pg. 17]
 

Some prominent scientists hope to achieve eugenic goals through
genetic engineering instead of through breeding. Molecular
biologist Daniel Koshland, formerly the editor of SCIENCE
magazine, argues that "if a child destined to have a permanently
low IQ could be cured by replacing a gene, would anyone really
argue against that?" He continues, "It is a short step from that
decision to improving a normal IQ. Is there an argument against
making superior individuals?... As society gets more complex,
perhaps it must select for individuals more capable of coping
with its complex problems."[4, pgs. 115-116]
 

To be continued.
 

==============
 

*Rachel Massey is a consultant to Environmental Research
Foundation.
 

[1] Jane Barrett, "U.S., Italian Experts Plan to Clone Humans,"
Reuters (March 9, 2001). Available at http://dailynews.yahoo.-
com/ htx/nm/20010309/sc/italy_cloning_dc_2.html
 

[2] Larry Thompson, "Human Gene Therapy: Harsh Lessons, High
Hopes," FDA CONSUMER MAGAZINE (September-October 2000) Available
at http://www.fda.gov/fdac/features/2000/500_gene.html
 

[3] See Sarah Sexton, "If Cloning is the Answer, What was the
Question?: Power and Decision-Making in the Geneticisation of
Health," THE CORNERHOUSE Briefing 16 (1999). Available at
http://cornerhouse.icaap.org/briefings/16.html
 

[4] Emma Young, "Stem Cell Go-Ahead," NEW SCIENTIST ONLINE
(December 20, 2000). Available at http://www.newscientist.com-
/nsplus/insight/clone/stem/goahead.html.
 

[5] Margaret Talbot, "The Cloning Mission: A Desire to
Duplicate," NEW YORK TIMES MAGAZINE (February 4, 2001), pgs.
40-45, 67-68.
 

[6] Ruth Hubbard and Elijah Wald, EXPLODING THE GENE MYTH: HOW
GENETIC INFORMATION IS PRODUCED AND MANIPULATED BY SCIENTISTS,
PHYSICIANS, EMPLOYERS, INSURANCE COMPANIES, EDUCATORS, AND LAW
ENFORCERS [ISBN 0807004316]. (Boston: Beacon Press, 1999).
 

[7] Eliot Marshall, "Gene Therapy Death Prompts Review of
Adenovirus Vector," SCIENCE Vol. 286, No. 5448 (December 17,
1999), pgs. 2244-2245.
 

[8] Food and Drug Administration, "Availability for Public
Disclosure and Submission to FDA for Public Disclosure of Certain
Data and Information Related to Human Gene Therapy or Xeno-
transplantation," FEDERAL REGISTER Vol. 66, No. 12 (January 18,
2001), pgs. 4688-4706. Available at http://frwebgate.access.gpo.-
gov/cgi-bin/getdoc.cgi?dbname=2001_register&docid=01-1048-fild
 

[9] Maggie Fox, "Gene Therapy Under Fire," Reuters (January 31,
2000). Available at http://www.abcnews.go.com/sections/living/-
DailyNews/genetherapy_000130.html
 

[10] See Council for Responsible Genetics Alert, "Tell the FDA
that the Public has a Right to Know about Xenotransplantation and
Gene Therapy, February 28, 2001." Available at
http://www.gene-watch.org/crgalerts.html

                                                            .
.            RACHEL'S ENVIRONMENT & HEALTH NEWS #721            .
.                     ---March 29, 2001---                      .
.                          HEADLINES:                           .
.                  ENGINEERING HUMANS, PART 2                   .
.                          ==========                           .
.
ENGINEERING HUMANS, PART 2
 

Human beings can be genetically engineered in three ways: by
inserting genes into the cells of existing people (somatic cell
manipulation, sometimes called "gene therapy"); by trying to copy
an existing person (cloning); or by changing the genes of future
generations (germline manipulation). Here we will examine serious
proposals to modify the human germline to "improve" the human
species, or perhaps even to create an entirely new species of
humans. Researchers have not yet tried to manipulate the human
germline, but proponents would like to convince us all that its a
good idea.
 

Biologist Daniel Koshland of the University of California at
Berkeley, a former editor of SCIENCE magazine, is a leading
advocate of genetic engineering to improve the human species.
Koshland writes, "If we do go ahead with germline engineering, as
I think we should, I can't see any possible reason for not
allowing enhancement therapy. We are facing monumental problems
with the population explosion, environmental pollution, the
shortage of fossil fuels, and the serious lack of leadership....
Should we turn our back on new methodologies that might bring us
smarter people and better leaders who are more responsible in
their lives? It's going to be tricky, but it seems silly to shut
our eyes to a new technology like this."[1, pg. 29]
 

In other words, Koshland is urging us to solve social and
environmental problems by redesigning our children.
Unfortunately, there is zero evidence that gene manipulation can
instill "leadership" or "responsibility" in babies. As for making
people smarter, even if it were possible there is no reason to
think "smarter" people are the solution to humanity's problems.
Many of the problems we face were created by some of the smartest
people in the world -- and were then loosed upon the world with
little consideration of the consequences.
 

The problems of technology and leadership today can both be
traced to a common source: decisions made by elites who don't
engage the people affected by their decisions. What we need is
not "smarter" people groomed to impose decisions on the rest of
us, as happens now; instead, we need more people with common
sense participating in decisions. In other words, we need to make
decisions in new ways, with the democratic participation of
everyone who will be affected.[2]
 

Some of Koshland's colleagues paint an even more extreme picture
of what genetic engineering could mean for the human race. Lee
Silver, a molecular biologist at Princeton University, writes
about future scenarios in which parents could design embryos to
suit their preferences. He suggests the human race could
eventually divide into two species, one with a normal set of
genes and the other with various expensive genetic
"improvements." The new race of improved humans might be unable
to mate with ordinary humans due to genetic incompatibility,
Silver says.[3] In the future that Silver envisions, the divide
between rich and poor would be permanently coded into our cells,
much as Aldous Huxley foretold in BRAVE NEW WORLD in 1932.
 

W. French Anderson of the University of Southern California
School of Medicine wants to try engineering the somatic cells of
fetuses as they develop in the womb. Anderson hopes this might be
a way to "cure" inherited diseases;[4] other researchers even
hope to get rid of unwanted traits such as high cholesterol
levels.[5] Almost all attempts to cure disease in adults or
children through somatic cell manipulation have failed, but some
proponents say a consistent record of failure is no reason to
delay experiments on fetuses.[6]
 

Anderson and others say they plan to leave the future sperm or
egg cells of a fetus intact, but they acknowledge they could
alter sperm and eggs by accident, thus producing changes that
could be inherited by future generations.[4]
 

It seems unlikely that any of this will ever succeed. Genes
usually do not control just one characteristic, so changing a
gene is likely to have multiple consequences. Furthermore, a
single characteristic may be controlled by several genes. These
facts make it seem unlikely that gene therapy or germline
engineering of humans will ever produce the desired results
without creating new problems.
 

Researchers recently introduced a gene for a fluorescent
(glowing) protein into the cells of fourteen fetal monkeys,[7]
but the monkeys' cells stopped producing the fluorescent protein
a few months after birth; evidently, they shut off the foreign
genes as they matured.[7, pg. 134]
 

We know from plant experiments that foreign genes often behave
unpredictably. In one case, petunias were engineered to produce
salmon-red flowers. When the weather turned unusually hot, the
engineered petunias began producing flowers of other colors.
Apparently the stress of high temperatures caused the plants,
unpredictably, to shut down some of the foreign genes.[8] If
monkeys shut off foreign genes as they mature, and if plants shut
down foreign genes in response to stress, should we expect
foreign genes in humans to behave differently?
 

When researchers genetically manipulate any plant or animal --
whether they are making clones or adding genes to existing
embryos -- they routinely produce organisms that are abnormal in
disastrous ways. It can take thousands of tries before genetic
engineers get the results they want in an engineered plant, and
many engineered plants are discarded because they are deformed or
display an unintended new feature.[9, pg. 3] When researchers
clone animals or manipulate the cells of animal embryos, the
resulting creatures often have severe defects.[10]
 

Germline engineering in animals, as in plants, can lead to
insertional mutation a change in gene function caused by a
foreign gene inserted into the middle of an existing gene. (See
REHN #716.) In one case, scientists created several generations
of mice with deformities resulting from an insertional
mutation.[11] If researchers introduced an insertional mutation
into a human embryo, they would create a baby with a defect that
could become obvious at birth, later in life, or only when the
victim of the experiment grew up and had children.
 

In general, problems that have arisen in genetic engineering
experiments on plants and animals can be expected to appear in
experiments on humans. But theres an important difference:
Genetic engineers who work with plants or rodents can breed
multiple generations to test whether an inserted gene performs as
expected in a laboratory setting. With humans, we cannot breed
test generations in a lab.
 

Some people still argue that somatic cell manipulation on
consenting individuals could be justified to treat serious
disease, if it could ever be shown to work the way it is supposed
to. Germline manipulation, in contrast, can never be justified as
a medical treatment, unless we redefine medicine to include
"curing" people who have not yet been conceived. For this and
other reasons, many people consider germline manipulation wholly
unacceptable. Altering the genes of future generations would
amount to a dangerous experiment carried out on subjects who have
no choice about participating. The United Nations' International
Covenant on Civil and Political Rights, which the U.S. ratified
in 1992, prohibits medical or scientific experimentation on
individuals who have not consented freely to participate.[12]
 

Whether they want to insert foreign genes into adult cells,
"enhance" an embryo, or redesign a fetus, proponents of human
engineering often talk as though genes were the key to
controlling health and disease. In fact, few diseases are
strictly determined by genes. In the vast majority of cases,
disease is produced or prevented through interactions between
genes and our social and physical environments.[13] For example,
certain genetic mutations may increase the likelihood of breast
cancer, but women with these mutations will not necessarily
develop breast cancer. Furthermore, 90% of women who do develop
breast cancer do not have a family history of the disease and
therefore probably did not develop it because of a gene.[14, pgs.
168-170]
 

Focusing on the genetic elements of sickness and health diverts
attention away from the social and environmental causes of
disease and makes it easy to blame preventable illnesses on "bad
genes." If our goal is healthier, smarter, or otherwise
"improved" future generations, there are obvious ways to achieve
that goal, such as protecting pregnant women and their babies
from toxic exposures and making sure all women have opportunities
for good nutrition and health care during pregnancy.
 

To learn more or to join the effort to prevent dangerous and
unethical genetic engineering of humans, contact:
 

** Exploratory Initiative on the New Human Genetic Technologies
(San Francisco, Calif.): (415) 434-1403; E-mail:
humanfuture@publicmediacenter.org. To sign up for the Exploratory
Initiative's E-mail newsletter, GENETIC CROSSROADS , or to
request a free briefing packet on human cloning and genetic
manipulation, send E-mail to teel@adax.com.
 

** Council for Responsible Genetics (Cambridge, Mass.): (617)
868-0870; E-mail crg@gene-watch.org; web: http://-
www.gene-watch.org
 

** Human Genetics Alert: web: http://www.-
users.globalnet.co.uk/~cahg/
                             --Rachel Massey and Peter Montague
 

==============
 

[1] Gregory Stock and John Campbell, editors, ENGINEERING THE
HUMAN GERMLINE: AN EXPLORATION OF THE SCIENCE AND ETHICS OF
ALTERING THE GENES WE PASS TO OUR CHILDREN [ISBN 0195133021]
(N.Y.: Oxford University Press, 2000), pgs. 29, 67-71.
 

[2] See, for example, Benjamin R. Barber, STRONG DEMOCRACY:
PARTICIPATORY POLITICS FOR A NEW AGE [ISBN 0520056167] (Berkeley,
Calif.: University of California Press, 1984).
 

[3] Lee M. Silver, REMAKING EDEN: HOW GENETIC ENGINEERING AND
CLONING WILL TRANSFORM THE AMERICAN FAMILY [ISBN 0380792435]
(N.Y.: Avon Books, 1998).
 

[4] Jennifer Couzin, "RAC Confronts in Utero Gene Therapy
Proposals," SCIENCE Vol. 282, No. 5386 (October 2, 1998), pg. 27.
 

[5] Joanna Marchant, "Generation Game," NEW SCIENTIST Vol. 168,
no. 2267 (December 2, 2000) pgs. 16-17.
 

[6] Holm Schneider and Charles Coutelle, "In Utero Gene Therapy:
The Case For," NATURE MEDICINE Vol. 5, No. 3 (March 1999), pgs.
256-257.
 

[7] Alice F. Tarantal and others, "Rhesus Monkey Model for Fetal
Gene Transfer: Studies with Retroviral-Based Vector Systems,"
MOLECULAR THERAPY Vol. 3, No. 2 (February 2001), pgs. 128-138
 

[8] Peter Meyer and others, "Endogenous and environmental factors
influence 35S promoter methylation of a maize A1 gene construct
in transgenic petunia and its colour phenotype," MOLECULAR GENES
AND GENETICS Vol. 231, no. 3 (Febr. 1992), pgs. 345-352.
 

[9] Michael K. Hansen, "Genetic Engineering is Not an Extension
of Conventional Plant Breeding; How Genetic Engineering Differs
from Conventional Breeding, Hybridization, Wide Crosses and
Horizontal Gene Transfer," report produced by Consumers Union.
Available at http://www.consumersunion.org/food/widecpi200.htm.
 

[10] Rudolf Jaenisch and Ian Wilmut, "Don't Clone Humans,"
SCIENCE Vol. 291, No. 5513 (March 30, 2001), pg. 2552. Also see
Lorraine E. Young and others, "Large Offspring Syndrome in Cattle
and Sheep," REVIEWS OF REPRODUCTION Vol. 3 (September 3, 1998),
pgs. 155-163.
 

[11] Chao-Nan Ting and others, "Insertional Mutation on Mouse
Chromosome 18 with Vestibular and Craniofacial Abnormalities,"
GENETICS Vol. 136, No. 1 (January 1994), pgs. 247-254.
 

[12] United Nations High Commission for Human Rights,
INTERNATIONAL COVENANT ON CIVIL AND POLITICAL RIGHTS (December
16, 1966). Available at
http://www.unhchr.ch/html/menu3/b/a_ccpr.htm
 
 

[13] David E. Larson, editor, MAYO CLINIC FAMILY HEALTH BOOK
[ISBN 0688144780], 2nd Edition (N.Y.: William Morrow, 1996), pg.
42.
 

[14] Ruth Hubbard and Elijah Wald, EXPLODING THE GENE MYTH: HOW
GENETIC INFORMATION IS PRODUCED AND MANIPULATED BY SCIENTISTS,
PHYSICIANS, EMPLOYERS, INSURANCE COMPANIES, EDUCATORS, AND LAW
ENFORCERS [ISBN 0807004312] (Boston: Beacon Press, 1999).
 

Thanks to Marcy Darnovsky of the Exploratory Initiative on the
New Human Genetic Technologies for reviewing portions of this
series.

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