(Re)Writing The Genetic Body-Text: Disability, Textuality, and the Human Genome Project

If this is the Book of Life, we should not settle for a rough draft over the long term but should remain committed to producing a final, highly accurate version.

—Francis S. Collins, "Shattuck Lecture: Medical and Societal Consequences of the Human Genome Project"

So this book . . . maps its particular investigations along the double helix of a work's reception history and its production history. But the work of knowing demands that the map be followed into the textual field, where "the meaning of the texts" will appear as a set of concrete and always changing conditions; because the meaning is in the use, and textuality is a social condition of various times, places, and persons.

—Jerome J. McGann, The Textual Condition

When Francis S. Collins, the director of the National Human Genome Research Institute, delivered the 109th Shattuck Lecture at the 1999 meeting of the Massachusetts Medical Society, he likened the sequencing of the human genome to "the great expeditions—those of Lewis and Clark, Sir Edmund Hillary, and even Neil Armstrong." The search for what Collins called the "complete set of genetic instructions of the human being" was undertaken by scientists in order to "map the human genetic terrain, knowing it would lead them to previously unimaginable insights, and from there to the common good" (28). It is this concept of the genetic body-text—and the implications of the resulting construction of disability as textual error—that I wish to examine.

First, a few definitions for those readers who are not immediately familiar with genetics. A genome refers to the complete DNA code of a particular organism or species. DNA molecules are found in the nucleus of every cell, carried on chemical structures known as chromosomes. Sequencing the human genome involves identifying its roughly three billion pairs of nucleotide bases and then storing this information in computer databases. Mapping involves location analysis meant to establish linkage. In one sense linkage refers to the location of a particular gene in relation to other genes, but it can also mean correlation with a phenotype (i.e., a gene "linked" to Parkinson's). Biotechnology and pharmaceutical companies hope to make billions of dollars as the function of more and more genes is established and feasible treatment options for harmful mutations within them are developed. ¹

The expedition to sequence and map the human genome has evolved into a two-way race between the Human Genome Project and Celera Genomics, a private biotechnology company located in Rockville, Maryland. The two competitors made a joint announcement in June 2000, issuing a joint report and releasing a "working draft" of the genome. Celera intends to finish its sequence of the human genome by December 2001 (or earlier) and then to patent sequences auspicious for therapeutic development. ² To compete with Celera, the Human Genome Project will finish computing the entire sequence by the end of 2003. The Human Genome Project is an international consortium that includes the U.S. National Institutes of Health and Department of Energy, the Wellcome Trust of London, and ten pharmaceutical companies. In contrast to Celera's for-profit approach, the Human Genome Project has adopted a policy of releasing data every twenty-four hours to a free, publicly accessible database called GenBank. ³

Sequencing the human genome was proclaimed to be "the single most important project in biology and the biomedical sciences—one that will permanently change biology and medicine" by members of the National Institutes of Health and Department of Energy planning groups in their "New Goals for the U.S. Human Genome Pro ject: 1998-2003." ⁴ The transition to "sequence-based" biology, they announced, will aid in the development of "highly accurate DNA-based medical diagnostics and therapeutics" (Collins et al., 682). Francis S. Collins concluded his "Shattuck Lecture," subtitled "Medical and Societal Consequences of the Human Genome Project," by declaring that the project's goal was...