Risks of Genetic Expropriation
By Britt Bailey
Once human life is special-ordered rather than conceived, life will never
be the same. No longer will each of us be a life that is unique from all others
who have ever lived. Instead our genetic selves will be molded and chiseled
in a Petri dish to comply with the social norms of the day. And if something
goes wrong, the new life will be thrown away like some defective widget or
other fungible product. So long, diversity. Hello homogeneity. - J. Wesley
The term "clone" is rooted in the Greek word "klon," meaning twig or shoot.
The concept of cloning gained a foothold in the world of gardening where a
twig or shoot could be used to create an identical plant in entirety. Today,
animal (or human) cloning is often referred to as "artificial twinning" because
it imitates the method by which twins develop, for identical twin children
carry exact genetic replicas of each other. As I will show, this parallel
between clones and twins is seriously misleading.
For years cloning has been the butt of jokes, the stuff of sensationalized
movies such as "Gattaca" and "Sixth Day", and a ready foil for uproarious
jokes. The idea of cloning involves removing the DNA containing nucleus of
an egg and then supplanting it with DNA from a body cell taken from a separate
individual. The resulting organism is a genetic replica of sorts, a being
formerly reserved for the pages of Brave New World or UFO cult groups seeking
everlasting life. Now you can even learn about the possibilities of cloning
on the internet.
One website is edited by Randolfe H. Wicker. He has established a wacky ultramodern
storefront in New York City, with an equally bizarre website advocating the
coming of our newest form of engineered creations. Wicker is perhaps the world's
first pro-cloning activist. He formed the Human Cloning Foundation and
The Clone Rights United Front (www.CloneRights.com) shortly after news traveled
the globe that the first mammal, Dolly, had been created. Yes, a website dedicated
to the rights of unborn children via cloning invites derision and cynicism,
dampening academic discussion to a mere whisper. And that is just the point.
By focusing on cloning, we may be looking at the Greek twig, and missing the
forest. Cloning and its associated technologies of embryo manipulation portend
a major overhaul in how we look at the idea of a human life, even as we exile
the advocates for such technology to the lunatic fringe.
"Levelheaded" scientists today appear above the fray: Most will not even
engage in a discussion of human cloning. To do so, might make the general
public nervous about its true prospects. More importantly, a "scientific"
debate could create public anxiety concerning genetics as a whole. By abjuring
debate, the public is likely to see scientists who are otherwise busy plumbing
the genome for its commercial value as sensible, rational beings who dismiss
the more sci-fi facets of genetic technology. We see eye-to-eye on cloning
so we're okay, they're okay. And, the truly perilous mission to transform
human embryos can go on apace, unburdened by public outcry.
Nonetheless there remains a rational basis for public scrutiny of genetic
technologies. As the idea of reproductive cloning becomes peripheralized,
other aspects of human genetic technology raise real ethical and legal questions.
Our ability to have dominion over our own bodies is being threatened with
every new gene test, potential inheritable genetic modification, and each
newly promised gene-based drug. Federal and State legislative protections
against genetic discrimination that ensure privacy and confidentiality appear
plentiful enough. But industry representatives watch very closely that these
new policies do not inadvertently give persons property rights to their DNA.
For if person's held property rights to their DNA, it would muddle the commercialization
and profiteering from developed gene based products such as genetic tests
and pharmaceuticals. Here are some examples.
Currently some genetic tests are routine. Both the test for phenylketonuria
(a genetic disorder that can lead to brain damage) and the one for cystic
fibrosis (a genetic disorder in which children have problems with breathing
and digestion due to a build-up of mucus in the body) are widely used. Neither
of these older, established tests even hint at the degree of controversy raised
by the new wave of genetic tests.
New genetic tests promise to give parents information about possible heart
disease, arthritis, and various types of cancer before a child is conceived
or implanted. Other genetic tests provide information about the likelihood
of disease which could arise in adulthood. In the near future, many gene-based
tests will be used to design a suitable drug for a patient, or to detect special
susceptibility to toxic substances. All of this appears benign, even healthy.
Why shouldn't parents be told whether they are carriers for recessive diseases
prior to starting a family, or have their pharmaceuticals personally designed
with profiles provided throughout the course of their lives?
But have we truly considered the spate of ethical issues raised by the advent
of these new prospects? What are the subtle or more obvious psychological
impacts from knowing your likelihood of developing a certain disease later
in life? And what of the possible discrimination which could afflict those
persons whose test results as prospective parents are known, even if seemingly
protected under a veil of confidentiality? The genetic tests, if used absent
of proper controls, could threaten one's sovereignty, and reproductive privacy.
The age old discussion of eugenics will need to be revisited as market-frenzied
biotechnology companies exert control over offspring. Not far into the future,
parents may be asked whether they want their newborns genetically tested for
the likelihood of coronary heart disease as new gene-based treatments are
offered which could prevent changes in the vascular walls as they approach
Here's at least one big issue: The decision making behind how and where our
genetic information will be used is presently not being given to us to make.
Instead, the locus of control rests in the hands of those hoping to profit
from uncovering personal deviance from a mutation or two. If "found out,"
we stand the chance to pay more for health insurance, lose health insurance,
and more subtly, lose dominion over our interior. Yes, our life span may increase
by a three or so years if a drug is found to be a perfect match to a particular
genetic mutation. But even as such discoveries are made, we run the risk of
compromising our societal sense of justice and fairness, and perhaps the greater
risk of losing some ethical principles like privacy altogether. The true risks
associated with the discovery and use of genetic material may never be adequately
outlined in the standard forms now used to protect human subjects.
The degradation of ethical principles from gene exploitation may prove to
be subtle and pervasive. As long as genetic tests and pharmaceuticals are
an endpoint of the race to sequence and understand the genome, private and
corporate business models are certain to dominate the current stakes. In the
rush to find profits from the genome, we may be overlooking the essence of
humanity, that of the hegemony we wield over our bodies and minds, and the
sense of liberty which should be endpoint, if an end is to be had.
Yes, the idea of gaining genetic knowledge is both exhilarating and chilling.
Exciting because the genome is rife with unexplored concepts. Chilling because
its exploitation threatens fundamentals of autonomy within our society. To
trumpet benefits while eschewing less tangible harm is to miss the age-old
Faustian bargain we strike with new wisdom. To know ourselves may mean giving