Academic journal article American Journal of Law & Medicine

Genetics and Privacy

Academic journal article American Journal of Law & Medicine

Genetics and Privacy

Article excerpt

I. INTRODUCTION

The science of genetics holds great promise. Ideally, the more scientists learn about the human genome and the functions of specific genes, the better they will understand what causes disease, what can prevent disease and what can cure it.1 But the hoped for advances in medicine that genetics may bring about will never happen if people are afraid to provide their DNA and work with scientists and doctors on the necessary research. From a privacy perspective, two things are clear: 1) people are afraid of genetic testing and 2) genetic information has been used to hurt people, rather than to help them.

Unfortunately, Americans cannot be assured that their DNA will not be taken or used against their will or without their knowledge. The United States has no coherent policy for whether, when or how genetic testing should be encouraged, facilitated, discouraged or prohibited. Instead, we have policies and practices that impact some people, in some places, under some circumstances. This kind of weak patchwork leaves gaping holes.

Why are the concerns about inappropriate uses and disclosures of genetic information so intense? Genetic information, which is a subset of medical information, is particularly sensitive because it reveals unique and immutable attributes. Those attributes are not just personal, but shared by family members as well. This information has the potential to give us, and others, a frightening, or reassuring, glimpse into the future.

Part II of this Article argues that the concept of genetic "privacy" encompasses genetic "nondiscrimination" and that public policies designed to protect against genetic discrimination should be thought of as part of the larger effort to protect the IMAGE FORMULA142

privacy of genetic information. Part III of this Article discusses how major federal laws protect the privacy of genetic information. This section focuses on the new medical privacy regulation issued by the U.S. Department of Health and Human Services (DHHS) in December 2000(2) and other aspects of the Health Insurance Portability and Accountability Act (HIPAA).3 It also includes a discussion of private employer access to genetic information. Part IV addresses bills pending in Congress that build on existing federal protections and add significant privacy protections for genetic information. Part V looks at the largely unregulated new frontier of the Internet to which millions of Americans are turning for health care information and services.

II. WHAT DOES IT MEAN TO PROTECT THE PRIVACY OF GENETIC INFORMATION?

Protecting the privacy of medical information, including genetic information, is a multifaceted endeavor with at least four interrelated components:

* Access: Who should have access to a person's genetic information, under what circumstances and for what purposes?

* Use: How should those who obtain a person's genetic information be allowed to use it?

* Disclosure: To whom should those who obtain/create/receive genetic information be allowed to disclose it, and for what purposes?

* Storage/security: What safeguards and safety precautions should be in place to make sure that genetic information is not obtained, used or disclosed inappropriately?

Looking at each of these components and how they interact is a bit like peeling an onion. One finds layer upon layer of complexity. At its core, the access component includes whether and when one person or entity can request or require that an individual divulge genetic information or undergo genetic testing. Society may very well conclude that the divulging of genetic information in some circumstances is appropriate (e.g., voluntary treatment-related disclosures) yet totally inappropriate in others. Similarly, the use component encompasses how health care providers, health insurers, researchers, pharmaceutical companies and employers, to name a few, should be allowed to use a person's genetic information. …

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