Genetic Privacy: New Intrusion a New Tort?

• Publication year: 1999

34 Creighton L. Rev. 965. GENETIC PRIVACY: NEW INTRUSION A NEW TORT?

Creighton Law Review

Vol. 34

JUNE MARY Z. MAKDISI(fn+)

I. INTRODUCTION

The completion of the Human Genome Project(fn1) has electrified the scientific world. What once was possible only in the domain of the science fiction thriller has reached real world possibility. We stand at the brink of Huxley's Brave New World.(fn2) Already in place is the technical proficiency to discover personal information about individuals by securing and analyzing the tiniest of pieces of biological specimen. An invisible drop of blood, a strand of hair, or even a speck of dandruff can be tested for the presence of specific genes and thereby reveal much personal information about the former host.

Whereas in the past genetics focused on the study of disease, genes may now be analyzed to discover a far broader range of information about the biological make-up. Research will reveal what characteristics result from the presence of specific genes. Gene tests will be administered to determine the presence (or absence) of specific traits, including those ordinarily hidden from view or those which might never manifest. The problem with this powerful breakthrough in scientific research is that the privacy of the individual becomes vulnerable to increased intrusion. An unauthorized snooper will be able to learn personal information about another person that is quite intimate and perhaps embarrassing.(fn3) It is possible that such informationin the hands of the wrong person could be quite detrimental to that person's welfare.

Therefore, it is important to have a legal structure in place to deter or at least compensate for such intrusion. Since DNA-rich matter is readily accessible to the general public through hair, skin or the residue of other body parts, the development of devices to discover this personal information should be accompanied with the development of our privacy laws. This paper explores the application of the common law tort of intrusion upon seclusion to protect an individual's interests in genetic privacy.

II. GENETIC INFORMATION

The mapping of the human chromosome accomplished by the completion of the Human Genome Project(fn4) may put a new dimension on the debate over which human characteristics result from genetics and which result from environment.(fn5) Within this nature/nurture debate, scientists could at one time only presume that certain traits were inherited. Technology will be able to make this information scientifically certain. As scientists link genes to resultant characteristics, others will be able to discover whether targeted individuals possess the identified characteristics by the application of specific tests.

A. HOW IT WORKS

Each somatic cell of the human body contains twenty-three pairs of chromosomes. Chromosomes are the bodies containing tightly coiled deoxyribonucleic acid ("DNA") molecules that direct other subcellular parts to produce the proteins(fn6) that cause the body to grow five fingerson each hand and to locate the eyeballs in the front of the face. The information contained in DNA also directs the formation of the neural chord and the development of every other biological mechanism.(fn7) What directions are conveyed depends upon the specific arrangement of nucleic acids ordered in pairs along the sugar and phosphate backbone of the DNA molecule.(fn8) The directions are not transmitted all at one time. Instead, sections of the DNA molecule, or genes, are translated into instructions which result in the occurrence of specified chemical reactions that lead to the organized functioning of the body and the appearance of traits that are coded on the DNA molecule.(fn9)

As of June, 2000, the complete human genome has been mapped.(fn10) The significance of this accomplishment is that we now have the complete genetic menu that dictates the presence or absence of inheritable traits. The genetic code captured in the DNA molecule can now be analyzed as a whole for the first time in scientific history.

B. THE EXTENT OF POSSIBLE INTRUSIONS

The framework upon which environment and experience builds is contained in our genes. An indefinable number of traits are determined by the DNA structure. Familiar characteristics include physical traits such as color-blindness,(fn11) height, and body morphology(fn12) as well as basic physical attributes such as pigmentation or flexibility.(fn13) Geneticists claim that genes reveal racial as well as ethnic status.(fn14)

There is also evidence that DNA determines, at least in part, intelligence and personality.(fn15) While some traits such as skin color are determined by several pairs of genes, others, such as "hitchhiker's thumb" and the ability to digest lactose, are determined by a single pair of genes, one from each matched chromosome.(fn16)

Prior research has been focused on curing diseases. Its methodology looked for and found genetic markers for diseases observably linked with heredity, such as Down's syndrome, phenylketonuria ("PKU"), hemophilia, and cystic fibrosis.(fn17) The mapping of the human genome now permits a more sophisticated examination of distinct patterns of nucleotide sequences forming individual genes. These can now be examined directly to facilitate the linkage of specific characteristics with specific gene sequences.(fn18) In research journals, ads marketing gene sequence information to researchers are early evidence of the acceleration of this new research methodology.(fn19) Instead of looking for the gene that contributes to a disease, the gene itself may beanalyzed. Huge data bases compiled as a result of the Human Genome Project are now made available by the federal government and by companies such as Celera, thereby facilitating speedy discoveries.(fn20) This erstwhile sci-fi scenario promises huge money-making possibilities.(fn21) Hence the ads and accompanying research.

Once the sequence of a gene is known, it takes little time to develop a reliable test that detects the presence or absence of a specific gene variation.(fn22) As associations are made between genes and resultant characteristics, new genetic tests will be developed that are within easy financial access to private individuals.

Initially, tests focused on diagnosis and treatment of diseases. In that context, testing was beneficial to the person tested. Testing performed outside that limited context, however, has already realized a negative societal impact. Particular concern has been expressed regarding the discriminatory effects of genetic testing under circumstances where employers or insurers request testing or acquire knowledge about the results.(fn23) As testing falls more and more outside the scope of medical uses,(fn24) the potential for genetic intrusion increases. Greater quantities of personal information of a kind not previously knowable becomes available to the class of persons who themselves choose to subject targeted individuals to surreptitious genetic testing for reasons of their own.

The extraction of genetic information through the surreptitious administration of genetic tests can be harmful. When knowledge is procured about personal information related to inborn traits, its revelation may be embarrassing. The harm is compounded by problems of misinterpretation, overemphasis, or distortion.

Information derived by genetic testing may be interpreted to verify the existence of a particular trait when it merely reveals a genetic predisposition or a probability that a characteristic may materialize.(fn25) Recessive genes, for example, may harbor information related to heritage or to traits that are masked by the phenotype, which is the manifestation of genes in the person of the subject.(fn26) For instance, the subject may carry(fn27) a recessive gene for dwarfism. By all appearances, the subject has a normal height despite the presence of a gene variation for dwarfism. What if the gene tested were not so visibly apparent as dwarfism yet operated in a similar recessive trait construct? The grave dangers resulting from intrusive prying or misinterpretation are obvious.(fn28)

Uninformed individuals may intensify the harm by placing a greater emphasis on the results of testing than is scientifically reasonable.(fn29) Today our culture treats genes in mystic cult fashion: "[t]he gene has become more than a piece of information; it has become 'a cultural icon, a symbol, almost a magical force.'"(fn30) Therefore, excluding others from probing one's unique genetic make-up is vital to maintaining dignity through privacy. The difficulty of excluding others, however, increases in proportion to the advances in technology and availability of genetic testing.

C. TECHNOLOGY AND EASE OF ACCESS

The application of advanced technology at multiple levels has improved and accelerated the extraction, analysis, understanding, and testing of genetic matter. Because human tissues are so easily accessible, the latest tests based on newly-discovered information can be applied to invade the genetic privacy of unwitting and unwilling targets. The following exemplifies the developing problems.

Currently existing microscope technology permits the chromosome to be directly observed. Differences of only one base letter in a genetic sequence are detectable when using an atomic imaging microscope. Therefore, minute genetic...