07annas - 337 Chapter 7 Genetic Privacy George Annas The...

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337 Chapter 7 Genetic Privacy George Annas The human genome project has brought with it many legal and ethical issues, but the most consistently contentious is genetic privacy. 1 As DNA sequences become understood as information, and as this information becomes easier to use in digitalized form, public concerns about internet and e-commerce privacy are merging with concerns about medical record privacy and genetic privacy. Privacy has returned to the center of American domestic public policy. Privacy Privacy is a complex concept involving several different but overlapping personal interests. It encompasses informational privacy (having control over highly personal information about ourselves), relational privacy (determining with whom we have
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338 personal, intimate relationships), privacy in decision-making (freedom from the surveillance and influence of others when making personal decisions) and the right to exclude others from our personal things and places. In the U.S., no single law protects all of these interests, and privacy law refers to the aggregate of privacy protections found in constitutions, statutes, regulations and common law. Together these laws reflect the value that U.S. citizens place upon individual privacy, sometimes referred to as "the right to be left alone" and the right to be free of outside intrusion, not as an end in itself, but as a means of enhancing individual freedom in various aspects of our lives. This centrality of individual freedom in the health care context is evident in state laws that establish a patient's right to make informed choices about treatment, that place an obligation on physicians to maintain patient confidentiality, and that regulate the maintenance of medical records. 2 Privacy laws in the U.S. are fragmented because of the multiple sources of law, including the federal
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339 government and all 50 states. Legislation is also often the result of negotiated agreements among segments of a diverse, pluralistic, and oftentimes polarized society, rather than of a real consensus. This is perhaps most readily seen in the rules that govern highly sensitive and personal data in the U.S. Unlike the approach of the European Data Protection Directive, which establishes similar rights and duties relative to different kinds of personal data (health and finance), the U.S has different rights and duties for personal information depending upon the kind of information involved. 3 There are even different rules for different types of information in medical records. For example, the U.S. has laws that govern medical record information generally, as well as separate laws that govern specific types of medical information, such as HIV status, substance abuse treatment information, and mental health information. New federal regulations will apply the same privacy rules to all medical information except psychotherapy notes. 4 Such exceptionalism has been criticized. The primary argument against specific laws designed to protect
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340 genetic information is that "genetic exceptionalism"
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