Analysis of law relating to the human body and its parts is accentuated by increasing genomic research utilizing human body tissues. (1) No doubt, the human genome project is the largest and most representative paradigm of such modern biomedical research endeavors. (2) Genomic research studies the function of individual genes in the human body and how they interact with one another and the environment. Advocates of genomics argue that it will help explain the genetic basis of diseases and shed light on therapeutic interventions. (3) To carry out genomic research, however, scientists need to obtain bodily materials, tissue samples and relevant health information from human sources. In some circumstances, samples may be obtained from deceased persons. Though genomics promises enormous health benefits, it raises significant social, ethical, and legal concerns. (4) For instance, genetic information obtained from a tissue sample may relate to intimately private matters such as race, height, susceptibility or predisposition to disease, behavioral traits, and sex. This type of information reaches beyond the sample source to family members and its illegitimate exploitation could have wide-ranging impacts entailing ostracism, discrimination in employment, and insurance. (5) Accordingly, the right to control current and future uses of a genetic material or information obtained from it has become pivotal.
The issue of appropriate legal protection for human body tissues and genetic information is properly understood when consideration is given to emerging population-wide genetic databases. Population-wide genetic studies entail extensive collection of tissue samples, pedigree information and relevant health data (from medical records) from an entire population or a significant segment of the population. Though most of the current DNA banks and databases are established under statutory instruments that regulate the rights of the parties, many issues still remain controversial and potentially amenable to the regulation of common law. For instance, the Supreme Court of Iceland recently held that a plaintiff has no statutory right to prevent the transfer of her deceased father's genealogical and genetic information into a centralized DNA database, it nevertheless accepted the plaintiffs constitutionally protected right of privacy to impede exploitation of such information. (6) Given that the Icelandic decision was made in the context of Iceland's Constitution and the statute establishing its DNA database, the challenge in Canada and the United States would be to determine whether the common law of their jurisdictions is adequately poised to deal with similar issues in the absence of statutory regulation. In other words, is it true for Canada and the United States that the right to control the use of a deceased relative's genetic information can only come from a statute unless a plaintiff establishes a personal privacy interest under the Constitution? Can the Canadian and American common law systems avail a plaintiff who complains of unauthorized exploitation of a deceased relative's genetic information, tissue sample, and health records?
Accordingly, this paper explores the ways in which questions relating to the control and exploitation of a deceased's genetic information and tissues could be settled under the common law. This requires analysis of the concept of burial rights or rights of sepulcher: whether such rights include a deceased's genetic and genealogical information (increasingly useful in genomic research); ways a plaintiff could vindicate the exercise of such rights; judicial remedies for the violation of rights of sepulcher; and how to settle questions of priority among multiple plaintiffs with conflicting claims.
Following this introduction, part two sketches the uses of DNA banks, and highlights the various fora in which the questions explored in this paper can arise. Part three explores population-wide genetic study in Newfoundland and Labrador (Canada) to demonstrate the potentials of problems relating to the control and exploitation of genetic materials and information of a deceased arising in Canada, and also to show the relevance of the Icelandic decision, if any, in Canada. Part four provides a statutory analysis of the pieces of legislation in Iceland that authorize the collection of tissue samples, genealogical, and genetic information from Iceland's citizens and their transfer to a centralized health database for health-related research. This part concludes with examination of the recent and important decision of the Supreme Court of Iceland on the subject. Parts five and six critically examine the concept, nature, and contents of sepulchral rights as a foundation for their application to the genetic information and tissue samples of cadavers under part seven. While part eight analyzes the jurisprudence relating to settlement of priorities in the event of conflicting claims to the right of sepulcher, part nine examines the various means of enforcement of the right of sepulcher. Concluding remarks are embodied in part ten. Though this work examines some of the Canadian jurisprudence relevant to the various issues explored, the copious references to American jurisprudence only underscores the relatively greater judicial activity by the American courts on the subject. The American cases offer enormous help and judicial choices to Canadian courts facing similar issues in the future.
USES OF DNA BANKS
Genetic technology has encouraged the creation of DNA banks and centralized health databases. (7) DNA banks house systematically collected tissue samples for research (8) or forensic identification purposes. (9) These tissue samples are sequenced and used in linkage studies, or undergo DNA analysis, and the resultant information is stored in DNA databases that can be used for forensic identification and public health research purposes. Because DNA samples contain unique information about the sample sources, such as predisposition to disease, behavioral traits, race, height and identity, considerable privacy and confidentiality concerns are implicated. (10)
The United States Department of Defense maintains a huge DNA bank, containing tissue samples of all United States military men. (11) DNA analysis of these tissue samples is used to identify soldiers who are missing in action or otherwise unidentifiable. This will significantly reduce the number of soldiers buried as "unknown soldiers." It could potentially be used in the criminal investigation of cases involving physically unidentifiable soldiers. Concerns have therefore been raised recognizing the need to put limits on the use of such a military DNA bank.
Canada, (12) and not less than forty-eight states in the United States, (13) also have laws creating forensic DNA banks to assist in the investigation of cases without suspects, and those in which biological samples were left on the crime scene, such as sperm, hair, saliva, and blood. (14) In the context of criminal investigations and the administration of justice, the Canadian Act permits the collection of DNA sample from persons convicted of certain offenses, usually involving violence and with a high repeat rate. (15) The samples and their DNA profiles are permanently stored in a forensic DNA bank for comparison with profiles of DNA artifacts left at crime scenes. (16)
In the United States, the federal DNA Identification Act (17) seeks to give financial support to states having forensic DNA banks, to set and monitor standards, and to facilitate the exchange of DNA information between states. Generally, these laws require, either at the stage of conviction or release, that a prisoner give a tissue sample for a DNA analysis. The resultant DNA profile of the prisoner is then stored in a computerized database. The rationale is that when an offense, such as rape, is committed in the future in which biological materials are left at the scene of crime, but without any known suspect, the DNA analysis of biological evidence is compared with the DNA profiles already in the database with the goal of identifying the likely offender. (18) State DNA laws are based on the theory that some violent crimes, like rape and murder, have a high rate of recidivism, and that such laws will facilitate the investigation and prosecution of such crimes. However, some states' DNA laws cover even crimes of non-violent nature, where the repeat rates are low. (19) It is not surprising, therefore, that some of these laws have been challenged on constitutional grounds. (20) Although the cases have generally upheld the constitutionality of forensic DNA banks, some of them have restricted the ambit of their application. (21)
An innovation in DNA banking is the creation of nationwide DNA banks, such as the ones in Estonia, (22) Iceland, (23) Tonga, (24) and the one proposed for the United Kingdom. (25) Banking involves statutory authorization for a population-wide collection of DNA samples and medical records for purposes of research and public health, subject to the terms of the statute. Accordingly, this paper attempts to show that DNA banks raise not only constitutional questions, such as the privacy right of a family member to control exploitation of genetic information obtained from a sample source, but they also invite an examination of whether common law's concept of sepulchral rights include the right to control uses of a deceased's genetic information in a DNA database. Below, I reviewed the genetic research in Newfoundland and Labrador, and the general provisions of the relevant statutes in Iceland, as a context for both my analyses of the recent Supreme Court of Iceland's decision on the subject and the nature of sepulchral rights.
It is true that Canada does not yet have a population-wide genetic database of the Icelandic proportions, but there are such possibilities in the future. Moreover...
The concept of sepulchral rights in Canada and the U.S. in the age of genomics: hints from Iceland.
|Author:||Nwabueze, Remigius N.|
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