Genetic liberty, genetic property: protecting genetic information.

AuthorWeeden, Jeffery Lawrence

Introduction I. "Genetic Liberty" and the Risks of the Misuse of Genetic A. Genetic Technology's Effect on Our View of Genetic Information B. DNA Is Forever C. The Human Genome Project and Beyond: The Bioinformatics Revolution D. The Dangers of the Misuse of Genetic Information 1. Insurance Discrimination 2. Workplace Discrimination 3. Other Discrimination and Dangers E. The Special Problems Presented by Biometric Data II. Regulation of Genetic Information: Protecting Genetic Identity A. Federal and State Legislation Regulating the Use of Genetic Information 1. Federal Regulation a. The Genetic Information Nondiscrimination Act of 2005 2. State Regulation a. The Genetic Property Regimes: Colorado, Georgia, and Louisiana b. The Privacy Regimes: California and Michigan III. The Best Solution: Protecting Genetic Information as Genetic Property A. Using Property Rights to Protect Genetic Information 1. Property in Genetic Information 2. The Nature of Property and the Tangible Property Bias a. What Property Is b. Genetic Information: Tangi non Possunt--as if It Were a Thing--and a Right c. Property as Right or Property as Thing d. Property as Positive Law: Nothing Else 3. Two Other Property Regimes: Quasi Property and Intellectual Property a. Quasi Property b. Intellectual Property 4. Some Historical Perspective Regarding Property in the Human Body a. Property in the Dead b. Autonomy in the Property of the Person c. A Fundamental Right, but a Limited "Bundle of Sticks" d. Special Problems Related to Genetic Property B. Hypothetical Test Cases Under the Property and Privacy Regimes 1. Genetic Property: How the Regime Handles Test Cases C. Using Privacy Rights to Protect Genetic Information 1. Why Property? 2. Genetic Privacy: A Potent but Ephemeral Solution. 3. Genetic Privacy: How the Regime Handles Test Cases Conclusion Appendix: A Brief Genetic Information Primer Information wants to be free. (1)

Information is valuable and easily stolen. (2)

INTRODUCTION

"Police hunting for the BTK serial killer kicked down Roger Valadez's door and went in with guns drawn. They handcuffed the Wichita man, then took a sample of DNA (3) from his mouth with a swab. That swab proved Valadez was not [the] BTK [killer]. Now he wants it destroyed...." (4) Valadez's lawyer, Dan Monnat, "warned DNA information is maybe the most intimate information about a person. There is no reason for that information to be unnecessarily in the government's files. Who knows what future use the 21st century will find for DNA?" (5)

One single strand of your hair, a drop of your blood, or a cheek cell from inside your mouth can reveal your deepest genetic secrets, potentially exposing you to tremendous peril. (6) This genetic material is the physical material in which genetic information is contained and from which it can be extracted. (7) The control of this genetic information is at the heart of controlling and protecting an individual's rights.

"Genetic Liberty" is defined as the personal control of all aspects of a person's genetic make-up, including genetic material and information. (8) This note surveys the literature written on the control and misuse of genetic information and also examines current federal and state laws regarding genetics and an individual's genetic liberty. This includes an analysis of the latest incarnation of the Genetic Information Nondiscrimination Act ("GINA"). (9) Finally, this note explores solutions to the problems regarding the use and control of genetic information.

The Supreme Court's "misuse" and "misunderstanding of genetics" in Buck v. Bell (10) left a dark and fearful legacy regarding the use of genetic information. (11) The fears associated with the misuse of genetic information spring, in part, from knowledge of society's "often moralistic attitudes toward sickness and the continuing human history of exclusion and discrimination against minorities and the disabled," and the "pseudo-genetic genocidal campaign in Nazi Germany." (12) The missteps of the past, however, can be avoided in the future by properly protecting genetic information.

The "recent explosion in [genetic] information," in large part due to the completion of the Human Genome Project ("HGP"), (13) will impact legal and policy issues, including social and ethical issues, privacy and confidentiality, criminal justice, informed consent, discrimination, intellectual property, and fairness in risk assessment. It will even influence our understanding of concepts such as illness and health. (14)

Current state and federal legislation does not protect genetic information as it should. Despite state and federal legislation, information can be gleaned from our genetic material without our consent. (15) Genetic information may give insurers a convenient excuse to deny or limit insurance to you and your progeny. The misuse of genetic information raises the possibility that you and your children could become uninsurable or unemployable in perpetuity. (17) The current insurance infrastructure simply will not work in a world where we can predict with great precision the diseases a person will acquire. (18)

If genetic information is not protectible, then no one is accountable for stealing, using, selling, or otherwise wrongfully appropriating your genetic information. (19) It is res nullius, (20) an ownerless chattel that belongs to no one--and everyone. (21) A person's genetic information, including his genetic code, (22) should be protectible as intangible personal property, or at least as quasi property, intellectual property, or a privacy interest protected by tort. This would exclude others from taking, using, receiving, selling, or otherwise misusing an individual's genetic information without the express consent of the owner. (23)

An individual's genetic liberty is best protected by laws that treat genetic information as a kind of private property and not through a privacy regime. Genetic information can be protected as personal property in many ways, including as quasi property, as jura in re propria, (24) or what I call "quasi in rem property." (25) One can make a principled argument that genetic information is best protected as tangi non possunt--an incorporeal thing--"the subject matter of a right ... within the sphere of proprietary or valuable rights." (26) "Our concept of 'things' can be 'reframed'" (27) over time and must be reframed to include genetic information. Personal genetic information is certainly personal property; no other individual or entity has a clearer or more justifiable claim over the information than the person to whom it pertains. This note concludes that a person's genetic information should be protected as personal property and not as a privacy interest.

Following the present introduction, Part I of this note examines genetic liberty, the biotechnology or bioinformatics revolution, and the dangers of the misuse of genetic information. Part II surveys the federal and state protection regimes. Part III explores the protection of an individual's genetic liberty in the context of property and quasi-property, intellectual property, tort, and privacy, and by using three hypothetical situations. A brief summary and conclusion then follows. An appendix at the end of this note briefly describes the biology behind genetic information.

  1. "GENETIC LIBERTY" AND THE RISKS OF THE MISUSE OF GENETIC INFORMATION

    The information in one's genetic code can be thought of as a coded probabilistic future diary because it describes an important part of a unique and personal future. (28) The rapidly increasing pace of technological change magnifies the many dangers inherent in the possible misuse of an individual's genetic information. (29) Some aspects of our genetic identity are relatively obscure and intangible. (30) For example, a propensity to develop prostate cancer cannot be detected through normal observation. However, even data not easily hidden, such as our age (31) and birth date, may point toward our dispositions for developing diseases. (32)

    As the combination of advances in technology and the bioinformatics revolution unfolds, a person's genetic information will be accessible in greater and greater detail. Genetic liberty should be honored and genetic information protected, as personal property, from the dangers of unauthorized acquisition, use, or distribution.

    1. Genetic Technology's Effect on Our View of Genetic Information

      We need to look at the good things DNA has done ... I think some people are overwrought about their concerns. (33) In California, police will be able in 2008 to take DNA samples from anyone arrested for a felony, whether the person is convicted or not.... (34) The future of genetic technology is bright. (35) The development of this technology raises several questions. Will the siren song of therapeutic advancement and utility in criminal investigation prove more powerful than the right of an individual to own or control personal genetic information? (36) Will we be prisoners, slaves, or masters of our genetic information? Will we become a nation of genetic haves and have-nots? Furthermore, several biotech companies recently obtained exclusive rights to research and manipulate genetic material, including the patenting of human DNA sequences. (37) When will the rights of individuals in their genetic information catch up to the rights of corporations and entities to utilize this information?

      In an oft-cited article quoted by the Court of Appeals of Maryland in State v. Raines, (38) Jeffrey S. Grand argued that genetic technology presents many grave dangers to personal privacy and security:

      Although the intrusion of a buccal swab may be minimal in a physical sense, it certainly is great when the vast amount of personal and private information DNA contains is considered. As was recently explained: "While the DNA profile is often referred to as a type of genetic 'fingerprint,' this analogy is far too...

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