Professor Seth J. Chandler on Title I of the Genetic Information Nondiscrimination Act of 2008

Many have hailed the newly enacted Genetic Information Nondiscrimination Act of 2008 (GINA) as the first major piece of civil rights legislation of the 21st Century that will foster medical treatment based on genetics by prohibiting “genetic discrimination” on the part of insurers and employers. Professor Seth Chandler untangles the complex path by which the bill, through interaction with existing provisions of ERISA, the Public Health Service Act, the Internal Revenue Code and the Social Security Act, alters the law of insurance underwriting. He finds that, while GINA will, as touted, severely restrict use of genetic information as a basis for health insurance underwriting, the understandable failure of the bill to address life, disability and long-term care insurance, the existing state limitations on use of genetic tests in health insurance, and the fact that few health insurers were using genetic tests means that GINA has changed the dilemma faced by the choice confronting most patients and medical practitioners in only a marginal way.

Professor Chandler’s commentary suggests a significant number of litigation, regulatory and legislative controversies likely to be created by GINA. The new law, in addition to enlarging a public regulatory apparatus mostly at the federal level, is likely to create private litigation. GINA, he asserts, will likely induce private causes of action, including claims for injunctive relief, either under ERISA or under state laws that escape ERISA preemption and any preemptive effect of GINA.

Professor Chandler says to expect litigation over alleged use of family history information by insurers in the individual market, actions against medical practitioners when patients rely to their insurance detriment on overstatements about the insulating effects of GINA, and, until the statute is clarified, actions by inter- or ambiguously sexed individuals for insurer use of chromosomal information.

He also foresees GINA’s requirement that regulators apply HIPAA privacy rules to genetic information as creating a tempest given (a) the limited protection afforded medical information by HIPAA; (b) the sense by many GINA supporters that genetic information should be far more private; and (c) the “regulate first, get input later” approach to administrative decisionmaking explicitly embodied in GINA.

The professor further speculates that GINA’s leaving in tact a “specific disease” exception to its anti-discrimination provisions may provide a safety valve for insurers should developments in genetic medicine create an intolerable adverse selection problem for medical insurers.

Finally, Professor Chandler sees instability in resting a significant piece of legislation on the dubious intellectual premise of “genetic exceptionalism.” “Why,” asks Professor Chandler, “should the insurer be able to make underwriting decisions based on an individual’s risk of future medical expense following, say, a shooting in which they were the faultless victim, but not be able to make underwriting decisions based on an individual’s risk of future medical expenses following, say, a genetic mutation in which they were the faultless victim?” Similarly, he asks, “what answer legislators will give when asked why, if use of genetic information is so awful, should all insurers except health insurers be permitted to use it?”

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