Ethical, Legal and Social Issues of Genomic Research: Striking a Balance between Science and Law

By Wilson, Le Von E. | Journal of Legal, Ethical and Regulatory Issues, January-July 2004 | Go to article overview

Ethical, Legal and Social Issues of Genomic Research: Striking a Balance between Science and Law


Wilson, Le Von E., Journal of Legal, Ethical and Regulatory Issues


ABSTRACT

As the scale and complexity of genomic research have increased, consensus has been more difficult to achieve and the law has lagged behind, thus, providing no clear resolution to the inevitable disputes. This paper explores the legal, ethical, and social issues surrounding genomic research. The paper examines the conduct of researchers against the backdrop of history and law, and attempts to foster a greater awareness of the legal and ethical challenges facing genomic researchers. The paper is designed to educate and inform genomic researchers and scholars about the legal and ethical implications of the decisions they make.

A variety of legal, ethical, and social issues relate to privacy and confidentiality of genetic information--who owns and controls genetic information? Societal concerns arising from genetic research focus on fairness in the use of genetic information by insurers, employers, courts, schools, adoption agencies, and the military, among others. Who has access to personal genetic information, and how will it be used?

The science of genetic research also raises issues of equal protection and due process under the United States Constitution. To that end, the paper explores and discusses a wide range of legal, ethical, and social issues pertinent to the Human Genome Project that could be used to develop educational programs, policy recommendations, or possible legislative solutions.

INTRODUCTION

The author does not presume to be able to provide answers to all of the questions that are posed herein. It is the author's hope, however, to raise issues on which future discussions may focus. The subject matter is so new that there are no great lines of tradition to which we may turn in trying to settle the question of moral rights and wrongs here. We have to start more or less from the beginning (Holland & Kyriacou, 1993). So rapid are the advances and so sophisticated are the details of the science and the explanation of the technology, that even an informed lay person finds it difficult today to comprehend exactly what is occurring.

The scientific issues are well ahead of the ethical, legal, and social issues. Ethical, legal and social issues are difficult in themselves and even more difficult because they involve all communities, not just the scientific ones. There are challenges for congressional and legislative branches, executive branches, the judicial branches, and the administrative branches of government. In fact, the issues are so pervasive that they involve every process--political and otherwise--to address them. The societal concerns arising from the new genetics are, of course, privacy and fair use of genetic information, as well as the psychological effect of having personal genetic knowledge.

HISTORICAL DEVELOPMENT

Genomics is an unusual scientific term because its definition varies from person to person. According to Campbell and Heyer (2003), the root word "genome" is universally defined as the total DNA content of a haploid cell or half the DNA content of a diploid cell. You would think that the discipline genomics would be the study of genomes. But this simple definition, according to Campbell and Heyer, is too simplistic. Campbell and Heyer go on to say that in one sense, all of biology is related to the study of genomes because an organism is shaped by its genome. However, most biologists would agree that disciplines such as anatomy and zoology should not be lumped into the current usage of genomics. So, how should genomics be defined? For most people, genomics involves large data sets (about 3 billion base pairs for the human genome) and high throughput methods (fast methods for collecting the data). Genomics includes sequencing DNA and collecting genome variations within a population as well as transcriptional control of genes. Once the terms genome and genomics gained popularity, a cascade of new terms was initiated so each new area of research became an "-omic" or the subject under investigation was an "-ome" (Campbell and Heyer). …

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