Genomic Justice:

Dov Fox

Genetic Testing and Health Insurancein America

Looking Ahead:

Progressive Thinking on Tomorrow’s Is

sues

We have long known that all people are not created equal, biologically speaking. However, new knowledge about which people are bound by

the genetic burdens of ill health threatens to undermine the assumptions

underlying the institution of health insurance. Now that the HumanGenome Project has made it possible to discover previously concealedhereditary inequalities, how should we, as a society, respond to dispari-ties among individuals’ genetic risks of ill health?

Advancements in genetic technologies have private insurance pro-

viders clamoring for access to new types of predictive health informa-tion. Such information would allow for markedly more accurate risk

forecasts, and thus foretell a range of diﬃculties for health insurance in

the United States. Increasingly precise genetic prognoses may renderrisk pools so small that it no longer makes ﬁscal sense for individualsto pay for costly insurance policies. Fear of genetic discrimination may

also prevent individuals from reaping the health beneﬁts that can result

from genetic testing. Most alarmingly, genetic risk classiﬁcation may be used to deny coverage to those with the worst genetic luck. While

lawmakers have begun to take note of these issues, anti-discrimination

legislation, the current policy solution to these problems, could crippleprivate insurance providers. To protect the privacy and wellbeing of Americans, we should abandon the present scheme of setting healthinsurance rates according to individual risk-factors, and, in its place,adopt a system of roughly equal premiums across communities—asystem that balances the values of free-market liberalism with thoseof mutual trust and solidarity.

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e recent mapping of the human genome holds enormous potential forbeneﬁcial use in personalized clinical health care. e 2003 completion of Human Genome Project promises to facilitate medical research and genetictesting to identify at-risk individuals and guide them in strategies for disease

prevention, diagnosis, and treatment. e increasing number and sophistication

of tests resulting from this new genetic information has enabled researchersto uncover the genetic components of over 5,000 diseases and disorders.

Mutations in the

-synuclein gene, for instance, increase the risk of Parkinson’s

disease, while single mutations in BRCA and MODY genes increase the risk of breast cancer and diabetes.

Advances in genetic testing promise to greatly

expand the ﬁeld of biomedical research, and to enhance lifelong health by

identifying those at-risk of developing debilitating diseases and guiding them

towards reducing any risk-elevating health behaviors. However, such preciseand personalized genetic knowledge also promises to profoundly transformhealth insurance in the United States.

e institution of health insurance relies on the connection betweenignorance and fairness in bringing people together to provide collective se-curity against their individual risk of ill health. Some people have the good

fortune of being blessed with lifelong health, while others are subject, through

no fault of their own, to disease and disability that limits functioning and

opportunity. Where all are deprived of knowledge about how their health will

play out, all have reason to contribute regular payments as insurance againstthe future cost accompanying the unknown risk of individual inﬁrmity. Asrisk can be roughly foreseen across large groups, insurance providers can reap

commercial gain by collecting clusters of premiums in exchange for compen-

sating policyholders for the actual medical expenses they encounter.

e

combination of individual uncertainty and group predictability which existed

up until the genomics era thus gave policyholders and providers incentiveto maintain the present system of health insurance. In the process, healthinsurance promotes social values of solidarity and mutual support by encour-aging citizens—even if unwittingly—to share their fates with one another

Examples of genetic testing include: medical examination; family history; chemical, biochemi-cal, or immunochemical analysis; examination of chromosomes by microscopy; or determina-tion of DNA composition using molecular genetic techniques that provide carrier or presymp-tomatic information indicating probable disease or disorder.

Genetic research has discovered that monogenic disorders, for example, such as cystic ﬁbrosis,Duchenne muscular dystrophy, and Huntington Disease, result from defects in a single gene.Chromosomal disorders, such as Down, Turner, and Klinefelter syndromes, result from too few,too many, or disorder of chromosomes within an individual’s genes. Multifactorial disorders,such as schizophrenia, spina biﬁda, juvenile onset diabetes, and most cancers, result from theinteraction of multiple genes with environmental factors.

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by spreading among them the chance that any individual among will suﬀerthe misfortune of inﬁrmity.

In the United States today, approximately 240 million Americans obtain

health insurance through employer, state, or individual plans, and 40 millionhave no health insurance at all. Of those insured, approximately 110 mil-lion receive group insurance coverage from an employer or Blue Cross/BlueShield, 65 million receive publicly-funded coverage from government pro-

grams like Medicare and Medicaid, 40 million receive self-insurance coverage

from an employer, and 25 million receive individual coverage directly froma provider.Of those insured, about 50 million Americans receive coverage underan experience-rated health insurance system that relates premiums to risk

under the principle of actuarial fairness.

Under such coverage plans, policy-

holders contribute premiums according to the expected cost of their future

claims. Actuarially fair providers engage in a process called underwriting, in

which they determine a policyholder’s expected risk according to the costs

of health care incurred by those with similar risk-related characteristics, such

as age, sex, occupation, height, weight, blood pressure, cholesterol proﬁle,tobacco and alcohol consumption, and family history. Providers obtainmedical information by requiring the applicant to answer questions on an

insurance proposal form or submit medical examination reports. Individual

premiums are then set in proportion to these risk classiﬁcations. Withthe completion of the Human Genome Project, private health insuranceproviders are now seeking to acquire predictive information about genetic

diseases in order to disaggregate risk along more finely stratified classifica-

tions according to the way in which adverse genes, taken in combination,contribute to an individual’s risk of ill health. Insurance companies argue

that in order to maintain actuarial fairness, policyholders must submit data

available from genetic testing, so that providers can diﬀerentiate premiumlevels as accurately as information permits.However, allowing genetic information to enter into the calculationof health insurance rates may render the whole institution commercially self-defeating. More precise predictive information would enable individuals’ eventual medical costs to be anticipated to a degree never beforepossible. If foreseeable risks of personal illness become known, providers

will assign policyholders to sharply deﬁned risk pools, with correspondingly

precise premiums distinguishing the lucky from the unlucky. When poolsbecome too small, many policyholders will find it cost-effective to save uptheir individual earnings for future health expenses than to contribute toa system of health insurance which offers far less security than it once did.If enough individuals opt out of the system, providers will no longer be