The Genetic Alliance, a coalition of advocacy groupsorganized on behalf of individuals living with geneticdisease, held a press conference on 1 April 2004 to call

on the US House of Representatives to pass the GeneticInformation Nondiscrimination Act (GINA). The bill, whichwould ban discrimination in health insurance and employ-ment based on the results of genetic tests, passed in the Senatelast year by a unanimous vote and has the support of the Bushadministration, a key advisory committee and at least 230members of the House.

Since that time, GINA has not been on the agendas of anyHouse committees or on those of the offices of the Speaker andof the House Majority Leader. According to US RepresentativeLouise M. Slaughter, who has led the campaign to pass legisla-tion banning genetic discrimination since 1995, “Most peopledo not even realize that their employers and insurers cangather genetic information about them without their knowl-edge and then use it to fire them or deny coverage. Althoughthere is a patchwork of federal and state laws that provide pro-tection for some people, federal legislation is needed to pro-vide strong protections for every American.”

In some ways, there is less than meets the eye in thedebate over GINA. The Health Insurance Portability andAccountability Act already outlaws the use of genetic infor-mation to discriminate against individuals in group healthinsurance plans, which constitute a large majority of theinsured in the US. As for those who have individual policiesunderwritten by insurers, there is no evidence of wide-spread denial of coverage or increases in premiums inresponse to genetic predisposition to disease. In fact, thehealth insurance industry’s opposition to GINA stemslargely from this point—that the bill is unnecessary andirrelevant. Convincing evidence of employment discrimi-nation is also hard to come by.

The most compelling argument in favor of GINA is based onthe credible evidence that large numbers of people are reluctantto undergo genetic testing, even to discover information thatwould help them more effectively manage their own health,because of concerns that insurance companies will use it todeny coverage. Public perception is by no means the best reason

to enact federal legislation, but given the promise of geneticmedicine, it would be painful indeed to squander the benefitsof genetic diagnostics and treatment because of such fears.

Perhaps the best reason for passing GINA quickly is that itwould prompt US policymakers to think about the muchlarger issues that confront us. Some of the proponents ofGINA argue for one version or another of ‘genetic exceptional-ism’, the idea that there is something fundamental that distin-guishes genetic information from other medical information.They contend that because genetic data merely imply predis-position to disease in otherwise healthy people, it would beunjust to take it into account. But this description often fitsnongenetic information as well. Indeed, the economic realitiesof the private health insurance industry in the US demand thatinsurance companies account for the greater risk of disease insome individuals, even if such a decision is based on factors,genetic or not, whose relevance to the likely onset of disease isby no means certain. As genetic information is integrated intomedical practice, and the general public becomes accustomedto genetic technology, the weakness of genetic exceptionalismwill become clear.

Therein lies the problem with a nondiscrimination law ver-sus a moratorium (like the one restricting the use of predictiveDNA-based tests in Germany until 2006). If the predictivepower of genetic testing as it relates to common, complex dis-ease is currently modest, that will not be the case forever. Atsome point each of us will no doubt be much better informedabout our health risks. What then? Roberta M. Berry noted ina well-argued and prescient article titled “The HumanGenome Project and the End of Insurance” that the viability ofthe health insurance industry depends on “a peculiarly delicatebalance of knowledge and ignorance”. If individuals have moreknowledge about their present and future health status thaninsurance companies do, they may succeed in getting ‘bargain’coverage, with companies facing unpredicted claims that willdrive up the price of premiums, resulting in lower-risk indi-viduals taking their business elsewhere. On the other hand,Berry argues, if insurance companies require genetic test infor-mation, they will face the fact that, at the level of the wholegenome, each of us is at risk for something. As a result, fewer

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No genotype left untreated

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people would be insurable. Either way, the industry would beforced to consolidate greatly, with uncertain consequences.

Eventually, of course, new treatments promise to make someof these concerns moot. Genetic testing has become an estab-lished clinical diagnostic tool that already has a measurableeffect in improving health. One gauge of this progress is the factthat 26 US states currently mandate testing newborn babies forup to 35 inborn errors of metabolism by tandem mass spec-trometry (MS/MS), a technology that readily allows many moretests to be added as they become clinically useful. But we findourselves at a vulnerable moment. Genetic testing will revealmuch of the potentially bad news encoded in our genomes, withthe ability to intervene still on the horizon. It is therefore imper-ative that we do not allow genetic discrimination based onincomplete information to impede evaluation of the real risksand protections conferred by different genetic variants.

Some European countries are taking a promising ‘fair limits’approach, which bans the use of genetic test information ininsurance decisions up to a specified amount, but allows itbeyond that threshold. Such an approach may preserve the

necessary degree of risk discrimination in the system whilemaintaining a minimum level of coverage for everyone. Butwhether it would work without the safety net of a tax-fundedstate health and welfare provision is unclear. At the moment inthe UK, there is just one test determined by the Genetics andInsurance Committee (GAIC) to be actuarially justified forrating purposes. The test, for Huntington disease, is used inapplications for life insurance and voluntary private healthinsurance policies above £500,000 and £300,000, respectively.

The legislative language of GINA would establish a GeneticNondiscrimination Study Commission in the US. Although itis unclear whether the commission will have a mandate similarto that of GAIC, it is to be hoped that the commission viewsthe act that empowers it as merely the opening chapter in acomplex and important debate.

We advocate medical treatment based on the best currentlyavailable genetic information. But we think there is a need toprevent discrimination by genotype in access to health careand in employment. Preventing even one attempt to deny cov-erage is a good aim, and the House should pass the bill. �

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