Owning Genetic Information and Gene Enhancement Techniques

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Owning Genetic Information and Gene Enhancement Techniques

Why Privacy and Property Rights May Undermine Social Control of the Human Genome

Journal article

By: Adam D. Moore

Date: April 2000

Source: Bioethics 14 (April 2000): 97-119.

About the Author: Adam D. Moore is an assistant professor in the Philosophy Department and the Information School at the University of Washington. He specializes in philosophy of law, applied ethics, information policy, and political philosophy. Moore is the author of Intellectual Property and Information Control, and editor of Intellectual Property: Moral, Legal, and International Dilemmas and Information Ethics: Privacy, Property, and Power. His articles have appeared in many journals, including American Philosophical Quarterly, Bioethics, The Journal of Value Inquiry, Business Ethics Quarterly, The Hamline Law Review, The Canadian Journal of Law and Jurisprudence, and Knowledge, Technology, and Policy.

INTRODUCTION

In his classic 1932 book Brave New World, Aldous Huxley (1894–1963)—a renowned English novelist and essayist of the twentieth century—envisions a future world in which babies are created in test-tubes rather than in the womb. Before birth, the embryos are sorted into various classes of differing capabilities by "predestinators" who decide the future occupation of each embryo within the society. A more contemporary vision of the future is seen in the motion picture Gattaca. It depicts a near-future society in which personal and professional destiny is determined by genetic constitution. In this society, "Valids" (genetically engineered individuals) qualify for positions at prestigious corporations, such as Gattaca, which grooms its most qualified employees for space exploration. "Invalids" (naturally born individuals) are deemed genetically flawed and destined for low-level occupations. In the society of Gattaca, genetics determine caste and social destiny. Although both stories are science fiction, their future dystopias have a firm foundation in current scientific fact. The human genome is now sequenced and medical and genetic knowledge continue to develop at a sometimes alarming pace. Therefore, ethical preparedness is crucial if we are to avoid the future as envisioned in Brave New World and Gattaca.

The prospect of human genetic enhancement conjures up both dreams of human progress and night-mares of a "new eugenics." Eugenics is the study of methods for improving the human race by controlled selective breeding. Although scientists are far from the ability to produce "designer babies," techniques enabling some forms of genetic enhancement are currently available. For example, scientists have successfully introduced the gene for IGF-1 into mouse muscle cells, which results in healthier, stronger, and more efficient muscles. This technique could be used either to cure diseases like muscular dystrophy or to improve musculature of athletes. In the future, genes that confer resistance to particular pathogens (disease-causing organisms, such as those that cause anthrax or smallpox) might be added to the human genome in an attempt to protect a population from attacks with biological weapons.

What are the ethical applications of, for example, human muscle enhancement by genetic means? On what basis would society distinguish between acceptable and unacceptable applications? Are these matters best left to the decisions of individual "customers," or should they be made and regulated by law? These are difficult questions. Most scientists believe that genetic variety is essential to the survival of any species, including humans, for long periods of time. If humans were to achieve genetic homogeneity (a genetic uniformity obtained by gene enhancement techniques), then a newly emerged disease could decimate the entire human population, since all individuals would be susceptible.

Adam D. Moore, professor of philosophy at the University of Washington, uses the argument that profound discoveries such as the human genome sequence that were built upon the foundation of previous discoveries should be shared and regulated by all humanity. He further uses the inequality argument in his article to illustrate potential flaws in allowing individuals to decide whether or not to undertake genetic enhancement procedures. Despite both arguments against genetic enhancement procedures, Moore concedes that the technology could possibly be widespread in future years, and suggests that individual property and privacy rights remain paramount and protected.

PRIMARY SOURCE

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SIGNIFICANCE

In the article, Moore argues that the proper subjects of abstract property claims include medical records, genetic profiles, and gene enhancement techniques. Coupled with a right to privacy, these nonfigurative property rights allow individuals a zone of control that will, in most cases, justifiably exclude governmental or social invasions into private domains. Moore further argues that the threshold for overriding privacy rights and abstract property rights is higher, in relation to genetic enhancement techniques and sensitive personal information, than is commonly suggested. Once the bar is raised, so to speak, the burden of overriding it is formidable. Thus, many policy decisions that have been recently proposed or enacted, such as audio and video surveillance, law enforcement DNA sweeps, genetic profiling, national prohibition on genetic testing and enhancement of humans, will have to be backed by very strong arguments. Moore argues for facing a future that may include the wide availability of genetic manipulation techniques with our basic rights of property and privacy intact.

The perfecting of techniques for human genetic intervention has been driven largely by the desire to confront genetic diseases. Gene insertion and correction, however, are not limited to medicine. Genetic intervention has been explored, at least speculatively, for altering physical characteristics such as weight, strength, height, and longevity—in short, for genetic enhancement. All this makes the questions surrounding human genetic enhancement especially appropriate for investigation and moral reflection. Everett Mendelsohn, history of science professor at Harvard University, commented, "Solving the 'technically sweet' problems first (a phrase used by atomic scientists), and only then turning to deal with the moral and social consequences of the experiments, has in the past proved much too costly, and will again." The "sweet challenge" of sequencing the complete human genome was achieved in 2003. What to do with this information is not a task confronting only bioethicists, but it intimately involves society as a whole.

FURTHER RESOURCES

Books

Fukuyama, Francis. Our Posthuman Future: Consequences of the Biotechnology Revolution. New York: Picador, 2003.

Huxley, Aldus. Brave New World and Brave New World Revisited. New York: HarperCollins, 1932/1958.

Kass, Leon R. Beyond Therapy: Biotechnology and the Pursuit of Happiness. New York: Regan Books, 2003.

―――――――. Life, Liberty and the Defense of Dignity: The Challenge for Bioethics. San Francisco: Encounter Books, 2002.

Moore, Adam D. Intellectual Property and Information Control. Somerset, N.J.: Transaction Publishers, 2001.

Moore, Adam D, ed. Information Ethics: Privacy, Property, and Power. Seattle: The University of Washington Press, 2005.

―――――――. Intellectual Property: Moral, Legal, and International Dilemmas. Lanham, Md.: Rowman & Littlefield, 1997.

Stock, Gregory. Redesigning Humans: Our Inevitable Genetic Future. Boston: Houghton Mifflin, 2002.

Periodicals

Kolata, Gina. "Fertility Ethics Authority Approves Sex Selection." New York Times (September 28, 2001): 16.

Platt, Charles. "Evolution Revolution." Wired Magazine (online version) no. 5.01 (1997): 1-10.

Web sites

Genetics & Public Policy Center. "Genetics Information." 〈http://www.dnapolicy.org〉 (accessed April 14, 2005).

Human Genome Project Information. "Genetics Privacy and Legislation." 〈http://www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml〉 (accessed April 14, 2005).

The President's Council on Bioethics. "Genetic Enhancement of Muscle." 〈http://www.bioethics.gov/transcripts/sep02/session7.html〉 (accessed April 14, 2005).