Searching for the Holy Grail: The Human Genome Project and Its Implications

By Morse, Allison | Journal of Law and Health, Summer 1998 | Go to article overview

Searching for the Holy Grail: The Human Genome Project and Its Implications


Morse, Allison, Journal of Law and Health


I. INTRODUCTION

The Report on the Human Genome Initiative declared that uncovering the human genome is revealing the "book of man,"(2) that by mapping and understanding the human genome we will understand what it means to be human.(3) Many proponents of the Human Genome Project give a dominant place to an internal mechanism, the gene, as the source of human behavior.(4) Where we as a culture allocate responsibility has profound effects on how we construct our identity and our society.

The Human Genome Project is a scientific enterprise under the auspices of the U.S. Department of Energy and the Department of Health and Human Services. Its task is to order and sequence the human genome.(5) This project will require the mapping of some three billion bases from one genome that will act as the prototype of a "normal" genome.(6) Many of the scientists involved in the Human Genome Project believe the mapping of these three billion bases will lead to major advances in medicine(7) and biotechnology,(8) as well as uncover the essential "text" of what it means to be human.(9)

Supporting scientific enterprise is an important function of government; however, science is not immune from the philosophic persuasions of its scientists.(10) The methods of research our government decides to endow will reflect our own culture's belief of where causal agents reside.(11) The assumption that genes are the carrier of our destiny is a profoundly ideological stance. It places reductionist explanations(12) to behavior above all others and, in doing so, allocates other causes such as environment to subsidiary roles.

Legal scholars have been quick to jump on this reductionist bandwagon and write of the legal implications resulting from the mapping of the human genome. Articles have been written on the problems of individuals obtaining insurance if a test reveals they carry the gene for a certain disease,(13) or on physicians becoming subject to torts for failing to disclose the presence of a genetic defect in a patient to her family members,(14) or on the pros and cons of genetic privacy.(15) These are important issues and ones that need to be addressed, but what underlies them is an assumption that the claims of the Human Genome Project are true.

Legal scholars are not alone in their enthusiasm for this reductionist explanation of human traits. The idea that a map of identifiable sequential regions in DNA can "control" manifested traits, from disease to personality, has been easily accepted by the public.(16) After all, it is a highly plausible theory, to the layperson or even to someone with considerable education. Scientists have identified areas of DNA that, when mutated, affect a trait of the human host, such as the single gene for cystic fibrosis. Furthermore, a tenth-grade biology class can describe Mendelian genetics and how a gene from one's mother and another from one's father will determine the color of one's hair or eyes.(17)

The wide adoption of DNA as master molecule in the scientific community is seen in the incredible explosion of trials for differing gene therapies.(18) "The National Institute of Health (NIH) is spending an estimated $200 million a year to develop and test tools and techniques for gene therapy. Private companies have raised hundreds of millions of dollars to enter the field and are now sponsoring most of the clinical trials. Many academic centers have created gene-therapy programs and joined the jockeying for a piece of the action."(19) To date, very little concrete data on the benefits of gene therapy have resulted from all this research.(20) Yet, the allocation of medical research resources continues to increase in this area.(21)

The benefactors of the Human Genome Project will undoubtedly be the biotechnology companies. Their interests are served by fostering the "myth" of the genome; moreover, they will be the recipients of funding for new technological breakthroughs in isolating genes and will profit from the marketing of DNA tests to doctors, employers, and genetic counselors. …

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