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GeneWatch
Volume 14 Number 1
January 2001
Beauty and the Beast
By Patricia J. Williams
From the Editor: Biotech
and Reproduction
By Suzanne Theberge
Eugenics,
Reproductive Technologies, and "Choice"
By Ruth Hubbard
Embryonic Confusion:
When You Think Conception, You Don't Think Product Liability.
Think Again.
By Lori Andrews
A
Unique Relationship to Reproductive Technologies: Don't Leave
Out Lesbian and Gay Families
By Deborah Wald
Race and the New Reproduction
By Dorothy E. Roberts
Safe
Foods Campaign: Massachusetts
By Jill Rubin
Book Review: Indigenous
Peoples, Genes, and Genetics: What Indigenous Peoples Should
Know About Biocolonialism, By Debra Harry, Stephanie Howard,
and Brett Lee Shelton
Review by Amber Beland
Poetry Watch: To A New
Child: A Rocking Song
By Anne Heutte
Announcement: Teitel
Named President of CRG
Further
Resources: Towards a Partial Listing of Materials: Books by
Our Authors and Others
ABOUT
GENEWATCH
GeneWatch
is Americas first and only magazine dedicated to monitoring
biotechnologys social, ethical and environmental consequences.
Since 1983, GeneWatch has covered a broad spectrum
of issues, from genetically engineered foods to biological
weapons, genetic privacy and discrimination, reproductive
technologies, and human cloning.
The centerpiece of the current
GeneWatch is Marcy
Darnovsky's analysis of new sex selection technologies.
We also present the first version of CRG's growing list of
security breaches and accidents at federal biodefense laboratories;
an update by Sujatha Byravan and Sheldon Krimsky of a planned
federal biodefense lab in Boston; Phil Bereano's much-needed
clarification of how international regulatory systems will
interact; and an overview of Chinese biotechnology by Nancy
Chen.
To find out more about subscribing
to GeneWatch and having it delivered to your doorstep six
times a year, just
click here.
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Eugenics, Reproductive
Technologies and "Choice"
by Ruth Hubbard
The term eugenics, meaning
"wellborn, was coined in 1883 by Francis
Galton, the scion of an upper-class British family and
a cousin of Charles Darwin. Galton wrote that he intended
it as "a brief word to express the science of improving
the stock, which...takes cognizance of all the influences
that tend...to give the more suitable races or strains
of blood a better chance of prevailing speedily over
the less suitable than they otherwise would have had."
Included among the "less suitable" strains
of blood were "paupers," "drunkards,"
and the "feebleminded," loosely defined. So,
race and class prejudices were there from the start.
Genetics did not yet exist as a science, though the
Czech monk Gregor Mendel published his classic paper
in 1865. Mendel's laws of inheritance only became widely
known after the paper was rediscovered in 1900. Not
long after that, geneticists began to examine patterns
of inheritance of human traits such as hair or eye color
and of diseases. By constructing family pedigrees, they
showed that similar regularities exist in the way human
traits are passed from parents to children as Mendel
observed while studying the transmission of flower color
and the shape of seeds in pea plants.
Thus, they noted that quite a number of inborn human
diseases are not noticeable in the parents of children
who exhibit the conditions, but do occur in other members
of the parents' families. Adopting a term coined by
Mendel, such diseases are said to follow a recessive
pattern of inheritance. In the language of modern genetics,
we say that for people to manifest a recessive condition,
they must inherit two copies of the relevant gene, one
from each of their parents. The reason the parents themselves
do not manifest the condition is that they "carry"
only one copy of that gene. They are referred to as
carriers.
Most inherited diseases are of this nature. They surface
sporadically in children whose parents do not manifest
the condition and often do not even realize that it
runs in their family until they have a child who exhibits
it. Geneticists assume that all of us carry several
genes, associated with recessive conditions, which would
be debilitating, or even lethal, had we inherited the
associated gene from both our parents.
Once most "bad" genes were understood to lurk
within healthy people, even eugenically-minded geneticists
realized that there is no way to cleanse the human "gene
pool" of most "deleterious" genes. The
people who manifest the associated conditions represent
only the tip of the iceberg; preventing them from having
children would hardly affect the prevalence of these
genes in the population. This realization eroded support
for the eugenic involuntary sterilization laws, which
the majority of U.S. states had enacted in the early
part of the 20th century.
Eugenic aspirations, however, were energized anew during
the 1970s, when it became possible to assess the health
status of fetuses by means of ultrasound imaging and
genetic tests. By now, assessing fetal health has become
a routine part of prenatal care and the impulse to get
rid of "bad genes" has been reframed in the
currently more acceptable rhetoric of "choice"
-- in this case, the choice of tests which might lead
to the decision to terminate a wanted pregnancy. The
fact that disease-linked genes usually lie buried within
healthy carriers has been a major impetus for developing
techniques and policies for carrier detection. In addition,
a new industry is being built to devise ways to detect
genes "for" conditions most people never knew
existed, and hence weren't worried about. These transformations
are not surprising in view of the medicalization and
geneticization of current thinking about all aspects
of health and social life. Proposals are frequently
voiced for population-wide screening for the most common
forms of the gene linked to cystic fibrosis and for
screening specific populations, such as African Americans,
Mediterraneans, or Jews, for genes these sub-populations
harbor at greater frequencies than do other people.
Given our current ethos of "choice," there
are no rules about what the carriers, once identified,
are to do with the information. Fiscal pressures from
insurers as well as our society's "healthism"
and "ableism," however, make it likely that
most couples will try to avoid to knowingly bear a child
predicted to exhibit the condition for which both parents
are carriers. So far, no prenatal genetic tests are
compulsory, but since future parents are usually required
to sign a refusal form if they decline a test, the "choice"
not to test is clearly constrained by the prevailing
ethos.
Since none of us know what evils may lurk in our genes,
prospective parents can hardly escape the ever-widening
net of fears being cast over the health of their future
children. Most parents-to-be do not realize that the
information prenatal tests offer is often uncertain
and rarely useful. Nor are they usually warned of the
anxiety the tests themselves tend to engender. The choice
ideology that is part of the thinking of those of us
who support abortion rights keeps many of us from acknowledging
the one-sidedness of our "choice" to assent
to predictive testing. Many of us don't pay for these
services out of pocket, so that our "choices"
are constrained by the cost/benefit calculations of
our insurers. They are, of course, also limited by the
calculus of profit that determines which tests are developed,
and how (and at what price) they are marketed.
To exercise genuine choice, we would need to shift the
frame of reference within which we think about illness
and health and face up to the realities of human variability
rather than narrow the definition of who is an acceptable
human. Life is chancy, especially when it comes to procreation,
which begins with the chance encounter of one of several
possible eggs with one of many millions of sperm. Try
as we will, we can shield our children against only
a few, foreseeable risks. Far better to move away from
the concern with personal and individual "choice"
and try to improve the social and economic conditions
everyone needs to live healthfully. Most people are
at greater risk of becoming disabled by environmental
hazards or accidents -- at work, at home, on the street
-- than they are from the genes they inherit from their
parents. Securing everyone's access to clean air and
water and to adequate amounts of nutritious food would
be much more effective in reducing ill health than predictive
tests and genetic interventions can be.
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