Genetic Privacy in Washington State: Policy Considerations and a Model Genetic Privacy Act
| Jurisdiction | Washington,United States |
| Citation | Vol. 21 No. 01 |
| Publication year | 1997 |
I. Introduction
Maria Silverwood(fn1) was excited when, on her twenty-fifth birthday, she was hired as a sales manager trainee for a Seattle company that manufactured computer graphic equipment. As a single mother, Maria needed a stable, secure job with potential for promotion. When Maria went for her mandatory new employee physical examination, she filled out a routine medical history form, on which she noted that her mother had died of Huntington's disease. Maria was shocked when she later found out she was ineligible for company-sponsored disability insurance because of the information she included in her medical history.
Nonetheless, Maria expected to move quickly up the ranks at her new company. She consistently received "excellent" ratings in performance reviews, and she was named "employee of the year" during her second and third years with the company. Maria's immediate supervisor repeatedly told her that she definitely was management material.
Four years after being hired, however, Maria was still classified as a trainee and paid at trainee's wages. Since the salary raises she had expected never materialized, Maria, as a single mother, found it increasingly difficult to make ends meet. What Maria suspected, but could not prove, was that she was denied promotion on the basis of her genetic history, just as she had been denied disability insurance. The truth was that company managers knew of Maria's genetic history, as reported when she was hired. They had not promoted Maria into a management position because of the possibility that she carried the Huntington's gene.
What Maria had experienced was discrimination on the basis of her unique and personal genetic information. Huntington's disease is an inherited disease.(fn2) Since Maria's mother died from the disease, the disability insurer and her employer both made the assumption that Maria was at risk of developing the same affliction. Consequently, she was denied both disability insurance and a promotion that was rightfully hers. This is discrimination based on information on a person's genetic make-up, and is known as genetic discrimination.(fn3)
In addition to being subjected to discrimination, Maria experienced an invasion of her privacy. When she completed the medical history form as part of her new employee physical, she assumed that the family history information she included would remain confidential. Similarly, when Maria signed a form authorizing her company's health insurance carrier to access her medical records, she thought that any information accessed would be used for claims verification and payment purposes only. Unfortunately, the health insurance carrier did not limit its disclosure of the information to claims verification. The health insurer redisclosed Maria's genetic information both to the disability insurance carrier and to her employer without Maria's knowledge or permission.(fn4) This unauthorized redisclosure of her genetic information had unfortunate consequences for Maria, even though she was in good health and the odds are only one in four that she will ever manifest the symptoms of Huntington's disease. Maria Silverwood found out what can happen if genetic information is not afforded special protection.
Current Washington state law is inadequate to protect people like Maria, because genetic information needs special protection but currently receives none. To prevent the Maria Silverwoods of Washington from experiencing invasions of genetic privacy and potential genetic discrimination, their genetic information must be given special protection. Accordingly, Washington legislators must adopt a Genetic Privacy Act that will provide the needed protection.
The next section of this Comment presents background information concerning genetic information and genetic testing. Section III then argues that privacy and autonomy are significant policy issues in connection with genetic information. As a result, the decision to have genetic testing performed should be an individual's choice, and genetic testing should never be compelled. Section IV argues that the failure to give genetic information special protection in the law has potentially harmful consequences. Section V surveys current efforts to protect genetic privacy, both by the federal government and states other than Washington. Section V also analyzes the current state of medical records privacy protection in Washington, and argues that the current state law is inadequate to protect genetic privacy and to prevent genetic discrimination. Finally, Section VI presents a substantive proposal for a Genetic Privacy Act in Washington, which would protect individual privacy, prohibit compelled testing, and prevent genetic discrimination. This Comment concludes that under current state law Washington citizens risk losing genetic privacy and experiencing genetic discrimination. Consequently, the legislature should enact a Genetic Privacy Act to ensure both protection of genetic privacy and prevention of genetic discrimination in Washington.
II. Genetic Information and Genetic Testing
Every cell of the human body carries genetic information.(fn5) The information is encoded in DNA and organized in genes, which are the basic unit of heredity.(fn6) Each person's genes are unique,(fn7) and they carry a map of that person's biological past and future.(fn8) In addition, genes are the vehicle by which characteristics are inherited from our parents and passed on to our children.(fn9)
The essence of the personal nature of genetic information is captured by the term "future diary."(fn10) A diary contains
Genetic information is an important class of health information because a significant number of human disorders have a genetic component.(fn14) Research scientists are currently attempting to develop technology which will allow greater diagnosis, understanding, and treatment of genetic disorders.(fn15) The Human Genome Project (HGP),(fn16) an international effort to build a complete map of the entire human genome, leads the way in this research.(fn17) The HGP is expected to lead to improved understanding, treatment, prevention, and eventually cures for many genetic disorders.(fn18) This knowledge is also expected to lead to the widespread availability of genetic testing in the near future.(fn19)
Genetic testing involves the direct testing of genetic make-up by laboratory analyses of DNA, in order to determine the presence or absence of defective genes.(fn20) Genetic testing supplements family history information, which has been the traditional source of information on genetic make-up.(fn21) The widespread availability of genetic testing may prove to be tremendously beneficial for some people. For example, genetic testing is a useful tool for the early detection of some diseases, which often increases the potential for successful treatment.(fn22) In addition, the availability of genetic testing should facilitate a shift toward preventive medicine since preventive measures may be available in some cases where a genetic predispostion has been identified.(fn23) Moreover, as technology advances, some diseases might be treatable on a genetic level, ultimately preventing symptoms entirely.(fn24)
The advent of genetic testing, however, raises important policy questions concerning the privacy and control of genetic information. Legislative responses to these policy questions have not kept pace with the recent rapid advances in the medical sciences.(fn25) Maria Silver-wood's situation underscores the need for legislative action to protect individual privacy and control over genetic information. The interrelated issues of a person's privacy and control of his or her genetic information are discussed further in the next section.
III. PRIVACY AND AUTONOMY WITH RESPECT TO GENETIC INFORMATION
Privacy and autonomy are overlapping concepts in the context of genetic information.(fn26) Privacy suggests limited access to a person, or freedom for that person from intrusion by others.(fn27) Autonomy, on the other hand, suggests that people should have the right to make decisions about personal and intimate matters without interference or intrusion by others.(fn28) Together, these concepts underscore the essential nature of an individual's ability "to make personal decisions without interference."(fn29) These two interrelated issues are explored further in the following subsections.
Genetic privacy concerns an individual's right to control who can gain access to his or her private health care information. A person has a reasonable expectation that personal, sensitive information in medical records will remain confidential and will not be revealed to third parties without that person's consent.(fn30) The privacy of health care information traditionally has been...
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