Coding for change: the power of the human genome to transform the American Health Insurance System.

I. INTRODUCTION Truthfully, we are fearfully and wonderfully made. - Samuel J. Holmes While science does advance steadily over time, occasionally a scientific breakthrough occurs that does not merely augment current scientific explanations and understandings, but instead radically redirects the focus of the scientific inquiry, fundamentally reconfigures our conception of our world and community, and threatens our existing social and moral conventions. We are currently experiencing such a scientific revolution, precipitated by advances in decoding our genetic makeup.1 While the revolution began at least by 1952 with the discovery by James Watson and Francis Crick of the structure of the DNA molecule2- the molecule that contains our genetic information-the pace of the revolution has accelerated most rapidly in the last ten years. The engine for this change is the Human Genome Project. The Human Genome Project (HGP)3 is an international effort to decipher the contents of the human genome by sequencing all of the base pairs. Once these base pairs are sequenced, scientists can quicken the rate at which they can identify what genes code for which functions, when genetic variation results in the expression of a genetic disorder, and ultimately how to use this information not just to diagnose, but to prevent and cure genetic abnormalities.4 The information unleashed by the HGP is changing the direction and focus of medical research, it is supporting and IMAGE FORMULA6 undermining long standing scientific assumptions and it is systematically deconstructing and reconstructing our social identities, our social priorities and our moral vision.5 With every new genetic breakthrough comes great apprehension that the information contained in the human genome and deciphered by the HGP will be used for ill.6 The anticipated problems are legion and include the fear of genetic discrimination. While the phrase "genetic discrimination" has become ubiquitous in both popular and academic presses, the exact definition of the term, and the nature of the anticipated problem, remain unclear. Speaking generally, fears about genetic discrimination with respect to insurance seem to stem from concerns over an insurance company's consideration of a potential enrollee's genetic information in making coverage and premium setting decisions.7 There is a consensus within the public and among health professionals that health insurers should not be able to use genetic information in making coverage determinations.8 While health insurers have long relied upon family and applicant medical histories as well as demographic and health habit information in making coverage decisions, the use of genetic information seems to strike a different discordant chord with the public, and there are significant demands for new and different rules for genetic information. The policy preference for different rules for genetics than for other types of health information is coined "genetic exceptionalism."9 Treating genetic information differently, however, is the wrong decision. As IMAGE FORMULA8 this article suggests, the entry of the genome into the public stream of information should not give rise to genetic exceptionalism rules. Rather, it should be an occasion for the wholesale revision of the rules we already have. People fear-and abhor-- insurance companies using genetic information in risk determinations because it offends their sense of fairness. While "discriminate" is defined as "to discern" or to "to distinguish by discerning or exposing differences" and even "to use good judgment," the definition that probably best reflects the way we typically use the term is "to make a difference in treatment or favor on a basis other than individual merit."10 In the strictest sense, we all discriminate when we size up two different things and make a choice between them. …