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 Smith

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 adulthood.

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 ourselves up.