The actual enforceability of medical malpractice exculpatory agreements remains an unsettled and underexplored question.  Courts treat general exculpatory agreements—like those signed at amusement parks—as they do any other contract, enforcing the contracts as long as they are entered into voluntarily.  But medical malpractice exculpatory agreements have been repeatedly invalidated, often under the mysterious “void-for-public-policy” rationale.  This Editorial outlines the basic arguments put forward in my Note exploring the enforceability of medical malpractice exculpatory agreements.  In the process, I set out a blueprint that medical providers might use to craft an enforceable medical malpractice exculpatory agreement.  I argue that the agreement with the best chances of being enforced is one that is not just optional for the patient and clearly worded, but also confidential.

 
I.
Judicial Resistance to Medical Malpractice Exculpatory Agreements

Cases using the void-for-public-policy rationale to invalidate medical malpractice exculpatory agreements abound, while cases upholding the agreements are difficult to find.  However, it is unclear whether the resistance to these agreements is a result of something that renders them categorically void or, alternatively, of some quality of the specific subset of agreements that are actually brought to court.

New York follows the majority rule on medical malpractice exculpatory agreements, so an in-depth analysis of New York case law is illustrative.  When invalidating medical malpractice exculpatory agreements, New York courts seem to focus on the way medical malpractice agreements are presented and worded, rather than on the subject matter or parties to the agreement.  In case after case, the courts look beyond the mere fact that the agreement is between doctor and patient and relates to liability, instead scrutinizing the specific wording of the agreement, the presentation of the agreement, and the circumstances of the bargain before ruling on an agreement’s validity.

There is reason to believe a medical malpractice exculpatory agreement could be crafted such that a New York court (and presumably any court following the majority rule) would enforce it, in spite of the fact that most cases on record involving such agreements have found them to be void for public policy.  The cases suggest that it is neither the subject matter of nor the parties to medical malpractice exculpatory agreements that render them void for public policy, but rather some feature of their presentation and signing.  Unfortunately, the cases provide few clues as to what elements are problematic.

 
II.
A Possible Culprit: Signaling Pressure in Medical Malpractice Exculpatory Agreements

A behavioral economic perspective reveals that medical malpractice exculpatory agreements create a somewhat intuitive problem that may underlie courts’ skepticism.  At the core of this problem is the signaling involved in the decision to sign (or not sign) a medical malpractice exculpatory agreement:  By refusing to sign such an agreement in exchange for a lower fee, a patient unequivocally signals to her doctor that:

(1) she is the sort of patient who would sue her doctor if injured negligently,

and

(2) she thinks there is at least some chance her doctor will make a mistake.

By refusing to sign an exculpatory agreement, the patient essentially says to the doctor, “No thanks, while I like saving money, I think there is a chance I’ll end up suing you.”

This signaling is problematic because we patients want our doctors to think we trust them.  Call it fairness, fear of retaliation, or altruism—the fact remains that many of us are uncomfortable with letting our doctors know that we have anything but the utmost faith in their abilities, even when we do have serious doubts.  This is why we are so hesitant explicitly to ask for a second opinion, even though we do not think twice about double-checking our diagnosis through anonymous means such as logging into WebMD or calling a doctor friend.  The same is true when it comes to deciding whether or not to sign a medical malpractice exculpatory agreement.  We know that if we do not sign, we will signal a lack of trust to our doctors, and this signaling effect puts pressure on us to sign, even if we otherwise would rather retain the right to sue for malpractice.

 
III.
Blueprint for an Enforceable Medical Malpractice Exculpatory Agreement

In my full Note, I discuss the plausibility of the assumption that courts’ skepticism toward medical malpractice exculpatory agreements is related to the signaling pressure identified above.  Assuming that this encumbrance to patient decisionmaking does underlie judicial suspicion of these agreements, it is possible to set out a blueprint for an exculpatory agreement that avoids signaling pressure, thereby alleviating courts’ concerns.

First, courts have clearly stated that patients must actually understand what they are signing in order to be able to waive the right to sue for malpractice.  Furthermore, courts have stated that because medical care is a necessary service, doctors cannot present malpractice waivers on a take-it-or-leave-it basis.  Thus, as a preliminary matter, any agreement that hopes to be enforced must be nonadhesive (optional) and clearly worded.

Such an agreement would still be subject to the signaling encumbrance identified above.  To cure this defect and avoid claims that a patient’s decision was not really voluntary, a medical provider hoping to create an enforceable medical malpractice exculpatory agreement would need to find a way to insulate the patient’s decision from signaling.  This could be done by making the patient’s decision confidential.  By guaranteeing the patient a zone of privacy around her decision to sign—at least vis-à-vis her doctor—a medical provider presenting a patient with a medical malpractice exculpatory agreement could guarantee that the patient’s decision was not influenced by fear of how the doctor might respond.

Contracting over malpractice confidentially would not be difficult.  The simplest method would be to utilize direct contracting between patients and managed care providers.  The doctor would only know that some patients from the managed care provider withheld the malpractice right and some did not.  She would not find out whether a given patient had decided to withhold the right unless that patient chose to sue ex post.

Even without an intermediary, contract law leaves plenty of room for a doctor and patient to enter into a traditional contract confidentially.  The doctor could present and explain two fee arrangements—one including an exculpatory agreement, one not—as two separate offers.  She could then invite the patient’s confidential acceptance of either offer, so as to remain in the dark about the patient’s decision.  Such an arrangement would be perfectly legal:  The Restatement (Second) of Contracts makes clear that the offeror may invite acceptance by whatever reasonable means she designates in making the offer, be it performance or, in this case, acceptance delivered confidentially to a third party.

Of course, even if the contract were formed confidentially, the patient may want a guarantee that her decision would remain confidential.  Confidentiality and privacy clauses are common elements of contracts, and, in this case, both offered contracts need only include clauses that guarantee confidentiality, and perhaps provide some warranty in the event that confidentiality is breached.  In addition, they might designate an independent third party—such as the doctor’s malpractice insurance company—to maintain the confidentiality of the agreement.  Again, the doctor would never find out whether a patient had signed or not, unless that patient decided to sue.

 
Conclusion

This Editorial has focused on signaling effects and confidential contracting in the context of medical malpractice exculpatory agreements, but these ideas might be applicable to other situations.  Within health law, it might be that patient choice would be facilitated in many other highly sensitive areas by using the law to make patient decisions confidential, even vis-à-vis the family doctor.  Decisions like the choice to use birth control, get an STD test, or seek out a second opinion come to mind.  Beyond the medical arena, confidential contracts might be utilized anywhere a special relationship of trust between two parties is in conflict with the signaling caused by standard contracts. Such uses might include contracts in the employment context and contracts regarding legal representation.

Acknowledgments:

Copyright © 2010 New York University School of Law.

Matthew J.B. Lawrence received his J.D. in 2009 from New York University Law School. He is now clerking for Judge Douglas H. Ginsburg of the D.C. Court of Appeals.

This Legal Workshop Editorial is based on the following Student Note: Matthew J.B. Lawrence, In Search of an Enforceable Medical Malpractice Exculpatory Agreement: Introducing Confidential Contracts as a Solution to the Doctor-Patient Relationship Problem, 84 N.Y.U. L. REV. 850 (2009).

On first learning of the bill during the 110th Congress, I assumed the Democrats advancing the bill would need their new majority to overcome at least some amount of Republican skepticism. What actually transpired was a floor debate in which the statements of staunch conservative Senator Brownback (R-KS) sounded functionally identical to those of the late liberal lion Senator Kennedy (D-MA). The final bill received only one negative vote in the entire Congress. Despite a research literature firmly divided over genetic discrimination’s very existence and whether a law like GINA would have economic repercussions, the entire political spectrum acted with unanimity to create genetic antidiscrimination laws. Why? Because genetic discrimination is unfair.

Social fairness tends to trump other concerns. Even if racial discrimination were economically rational, for example, it likely would remain prohibited as offensive to our fundamental sense of justice. The legal enforcement of social fairness is the very essence of antidiscrimination legislation and it explains why GINA received near unanimous approval, despite the uncertainty about genetic discrimination.

The difficulty comes in explaining why genetic discrimination is unfair, even if we believe it be so. This essay—like the Note from which it is adapted—probes the boundaries of genetics as a category and of the social fairness invoked in support of that category. The result is not a conclusion or recommendation, nor a critique of GINA. Instead, it explores how genetics and the seemingly clear principles of social fairness can break down, revealing an altogether more complex, normative, and ad hoc approach than at first glance.

 
I.
What is Genetic Discrimination?

Exploring the human genome has uncovered numerous genetic variations that may indicate and, perhaps someday, control disease. In 1990, researchers identified particular chromosomal variations associated with breast cancer. Carriers of these “BRCA” mutations bear a substantial risk of developing breast cancer—anywhere from thirty to eighty percent. This discovery presented obvious benefits: better targeting meant better preventive treatment and earlier detection. Soon after, researchers found links to Huntington’s disease and cystic fibrosis. Over the next two decades, there would follow hundreds of other theoretical connections between specific health outcomes and identifiable genetic variations, with countless more to come.

But this information could have negative consequences, especially in terms of medical insurance. For individuals seeking insurance, such genetic predispositions might be the ultimate in preexisting conditions, bringing fears of lost or denied coverage. Stories of these difficulties soon followed. A 1995 article in Science describes a healthy four-year-old child denied coverage twice because doctors discovered—after his mother and maternal uncle died of sudden cardiac arrest—a genetic pattern that increased susceptibility to heart conditions. Interviews appeared with people who sought tests for genetic predispositions to cancer, but worked to hide the test from their insurers, lest they lose coverage.

The workplace brings a similar worry. An employer providing group insurance could view a job candidate with a genetic predisposition to disease as a financial liability who could drive up that employer’s costs, insurance or otherwise. If that financial risk exists, then a potential employee with a genetic predisposition to disease is no doubt disfavored relative to one without that predisposition.

These are the archetypal examples of genetic discrimination, now barred by GINA.

 
II.
Genetic Antidiscrimination as a Matter of Fairness

Discussions of genetic antidiscrimination inevitably turn to the “disability” model of fairness, whereby people should not be made to suffer for immutable conditions for which they themselves are blameless. Not coincidentally, much of GINA’s operative language mirrors the language of the Civil Rights Act of 1964 and of the Americans with Disabilities Act, the most prominent antidiscrimination laws focused on immutable and involuntary characteristics. Senator Levin (D-MI) crisply summarized the disability model as applied to GINA: “We do not determine our own DNA. We are born with it. We cannot allow discrimination on the basis of such a fundamental aspect of life and one in which we had no choice.”²

Surveys show that this idea resonates, prompting public support for accommodations and general feelings of empathy. Consider a spectrum of impairments: At one end of the spectrum is a condition like blindness, where support for accommodation and protection is nearly universal. People generally believe that the blind have neither caused their condition nor are able to change it. At the other end would be conditions like drug addiction and obesity, broadly considered not to merit legal protection or specific accommodation.  In the popular conception, drug addiction is neither immutable nor is the sufferer blameless because the addiction appears to be within his control. In the case of obesity, studies show that the perception of blame prompts distinctly negative social biases. Genetics would be, in this model, similar to blindness.

Reinforcing the disability model’s natural relationship to genetics is their inclusion in the Equal Employment Opportunity Commission’s interpretation of the ADA. An Executive Order by President Clinton expressed the intention of his Administration to include genetic conditions within the scope of the ADA and the EEOC’s protection. Thus, the fairness guarantees of the ADA—and presumably the fairness principles that justify disability law—applied to genetics. In the disability model, society is willing to bear some amount of cost-sharing and market distortion in order to protect an afflicted class it views as blameless and helpless, and it now wishes to extend that categorization to genetics.

 
III.
The Problem of Categorizing “Genetics”

When we say we wish to protect genetics because they represent a fixed source of involuntary disadvantage, do we mean it?

Surely, we want to protect the four-year-old who cannot get insurance because of a genetic predisposition to heart disease. We want to protect the woman whose increased risk of breast cancer makes her an increased financial liability to her employer. The category of genetics, however, and the disability model by which we support it may be inexact ways of capturing that sentiment.

The first difficulty with categorizing genetics is that it may not be a discrete category at all. Genetic information is fundamentally medical information, albeit medical information obtained through a particular method. The thinness of this distinction relative to the bold lines created by antidiscrimination legislation have led some to criticize the phenomenon of “genetic exceptionalism”—the idea that genetics and the information it provides are somehow different in kind from comparable non-genetic medical information. Critics of a genetics-oriented approach to legal protection charge that the distinction is fundamentally arbitrary and elevates the method of acquiring information (genetics) above the content of that information (diseases and predispositions).

The possibly illusory nature of the boundary between genetic and non-genetic is highlighted by the difference between what is and is not considered permissible under various pre-GINA state genetic antidiscrimination laws. Some state laws bar consideration of genetic test results but allow consideration of family history that, without any specific “genetic testing,” would suggest genetic predispositions. Thus, intuiting the presence of a BRCA variation by family history would be permissible, whereas a genetic test for the very same information would be impermissible. Before GINA, Texas’s genetic antidiscrimination law specifically delineated that the former would not count as genetic testing, and thus would be permissible. Other states banned this practice as a subset of genetic discrimination.

Investigating a greater likelihood of heart disease through a combination of heart rhythm, cholesterol, and blood pressure measurement is permissible and reasonably common, possibly even in an individual insurance context. Determining a greater likelihood of heart disease by detecting a chromosomal variation is impermissible, though such a chromosomal link has been identified, and may prompt the permissibly identified secondary symptoms.

As new genetic links are found, more potential conditions will become “genetic” and the use of genetic markers to detect them will, in theory, become legally problematic. Perhaps more curious, however, is that few expect this to happen, imagining a clarity between protected genetics and unprotected genetics. But, of course, once that distinction is made, the notion of a category—rather than a normatively selective grouping—grows quite murky.

 
IV.
Genetics Test the Limits of Immutability

The disability model itself in the context of genetics may be less applicable than it first seems. Reflexively, we sympathize with the bearer of a disadvantageous genetic predisposition. The person with the predisposition to cystic fibrosis, especially the person who has manifested cystic fibrosis, has drawn a card that many feel, under other circumstances, they themselves could have drawn. These are the clean examples of genetics as disability with obvious and pleasing divisions. But a broader look at genetic predisposition calls into question how applicable the characteristics of immutability and blamelessness are to the category of genetics as a whole, or which genetic predispositions people would be comfortable protecting.

The fixed and unchanging nature of genetic variations may be more flexible than is generally assumed. The first sense in which this is true is the potential someday to literally alter one’s genetic makeup through the burgeoning practice of gene therapy. Early research suggests techniques that could modify, correct, or blend specific genes. The practical medical application of such technology, already in trials, could well emerge in the near future. Such direct control over genetics would cast new light on the questions that currently characterize the genetic discrimination debate. If genetic therapy could correct for genetic variations, would it be appropriate for an insurer who covers such therapy to charge more to patients who choose not to get it? Would it be appropriate for employers to recommend such treatment? Surely we would not ask someone to alter her race. Are her genetics the same?

More complex questions along the same lines also arise regarding the ability to affect one’s predisposition to a disease even if unable to affect the genes underlying that predisposition. Environmental changes, medicine, and surgery all can reduce the likelihood that a person predisposed to a disease will ever actually suffer it. For example, a woman with the BRCA gene variations predisposing her to breast and ovarian cancer can functionally eliminate her increased risk through hysterectomy or preventive mastectomy. Although it hardly satisfies a sense of social justice to condition affordable medical care on a willingness to undergo such an invasive and personally difficult procedure, some might think it wholly appropriate for insurers to be able to judge on that basis if a pill-based treatment could achieve the same effect.

The introduction of such possibilities creates a sliding scale along which to view the evaluation of genetic information: If a procedure were effective and non-invasive, would it be worth creating a market distortion and collectively bearing added risk in order to protect someone’s ability to refuse that procedure? What if the procedure were only moderately invasive? GINA does not incorporate the ability of a person to mitigate his or her risks in prohibiting the actuarial consideration of genetic information. Still, once the condition appears to be within a person’s control, the fair outcome, even under a disability model, becomes less certain.

 
V.
Immutability’s Just Another Word for “Things We Don’t Mind”

Even accepting genetic conditions to be immutable, the discovery of genetic bases for conditions generally considered behavioral calls into question what blamelessness means in the context of an immutable predisposition. In the popular press, genetic research has produced such tantalizing headlines as “Can’t Quit Smoking? Blame Your Genes,” suggesting that the voluntary behaviors underlying addictions may actually invoke involuntary, immutable genetics.³ This calls into question what it means for a person suffering the effects of one genetic condition (for example, breast cancer) to be blameless while a person suffering another (for example, drug addiction) shoulders responsibility. We can never quantify whether it is harder for a person with a predisposition to drug use to abstain throughout his or her life than for a person with a predisposition to cancer to undergo preventive surgery. Genetic predispositions to ostensibly behavioral conditions reveal our inability to truly separate the involuntary from the voluntary and the immutable from the malleable.

Homosexuality presents another interesting dilemma as a characteristic that may have a strongly genetic component. Unlike genetics, sexual orientation has no federal antidiscrimination protection, and yet we would not necessarily expect the possible genetic origins of homosexuality to place that characteristic under GINA’s protection. We would also not expect such protections to have the kind of unanimity that characterized GINA’s passage. Studies have shown that the belief that homosexuality is an inborn genetic trait is highly correlated to a willingness to provide additional rights and protections based on sexual orientation.

This tracks with the immutability model of fairness, a belief that the immutable merits protection; but the correlation may well occur in the other direction, so that favoring protection predisposes one to believe that the characteristic is immutable. Indeed, groups morally opposed to the expansion of gay rights reject claims of a genetic basis for sexual orientation; this suggests that in addition to favoring protections for that which we recognize as immutable, we may choose to see as immutable that which we feel is deserving of protection, and to see as chosen that which we do not.

 
Conclusion

In late October, an Italian court reduced the sentence for a convicted murderer on a finding that he had a genetic predisposition to violent behavior. In theory, the moral logic underpinning this decision perfectly echoes the sentiments codified domestically through GINA. Yet the legal and scientific presses, here and abroad, greeted this story with skepticism and troubled curiosity. Could this be what we—and our unanimous Congress—mean by holding people harmless for their genetic predispositions?

Nice as that categorical approach sounds, it does not seem to be what we actually want. Seven months after GINA’s passage, the New York Times reported on a limited trend of parents who tested their infant and toddler children for genetic modifications indicating the potential to excel at particular sports. These parents did not try to shield children from genetic fate, or to see that their lives remain unaffected by immutable genetic constraints. Quite the contrary. We can envision the story’s eager parents promoting their children’s genetic predispositions to potential trainers, even to the detriment of children born comparably “deficient.” We are, in short, only beginning to learn what our genetics (and those of our children) mean. We are conflicted over what to do with the information, and how it may change our understanding of our fates, our free will, and our obligations to one another.

Is all genetic discrimination unfair? If so, is it unfair for reasons we can clearly articulate, or is it simply a matter of faith? A fuller examination of genetics and their implications suggests that the common notions of fairness do not support the entire category of genetics very well. Indeed, the logic behind these constructs devolves into the circular and ad hoc.

Genetics may eventually become a category that encompasses so much as to render itself meaningless. It may prove medically malleable. And to the extent that genetics are immutable, that immutability may suggest a different approach to sexual orientation, addiction, obesity, athletic inclination, and even personality traits. Although genetic antidiscrimination promises broad categorical protections, its realization may favor a narrower, more normatively determined segment of genetics.

Acknowledgments:

Copyright © 2010 Georgetown Law Journal.

Jeffrey S. Morrow is a 2010 J.D. Candidate at Georgetown University Law School.

This Legal Workshop Editorial is based on the following Student Note: Jeffrey S. Morrow, Insuring Fairness: The Popular Creation of Genetic Antidiscrimination, 98 GEO. L.J. 215 (2009).

My article addresses how risk governance thinking shapes both treatment protocols and judicial review of coverage decisions. In this summary, I focus on a third set of questions covered in the article: the political and normative argument for an approach to health care allocation decisions that fosters deliberative democracy.

Virtually everyone experiences the health care system, but the public’s knowledge about health-related policy involves far more breadth than depth. The system’s underlying structures of financial risk allocation are complex and not well known or understood. The result is that despite an intense media focus on the politics of reform, policy decisions are effectively hidden from the public, even if they are hidden in plain sight.

The public’s relation to health care policy also lacks, in large part, a participatory dimension. Limits on public understanding and knowledge are exacerbated by limits on mechanisms by which members of the public can participate effectively in health-related policymaking. Although individuals are increasingly empowered as patients, the idea that serious public engagement with health care system governance is a viable concept seldom surfaces in public consciousness.

In this article, I seek to offer both a normative argument for enhancing democratic engagement in health care system governance and a proposal for doing so grounded in the pragmatic spirit of democratic experimentalism. I argue that beyond the identities of patient and consumer, individuals should occupy the role of citizen in the health care system. Because governance encompasses more than just actions by the state, a meaningful concept of citizenship in the health care system must be applied to private sector institutions as well as to government.

 
I.
Building New Publics for Health Policy

One way to begin addressing the problem of Americans’ shallow engagement with health policy issues is to conceptualize such debates as occurring within a particular “public,” using the analytic structure developed by Jürgen Habermas.¹ In Habermas’s work, the concept of a public denotes a cultural and social space for dialogue about shared concerns; there can be many publics. Habermas claims that the quality of society depends on the quality of our dialogic engagement on important issues. The quality of that engagement, in turn, depends on whether the procedures for engagement reflect core ethical concerns, such as equality of participation.

Because democracy is not possible without meaningful participation, we advance democratic norms in the governance of any system when we enhance the capacity of citizens to debate and discuss substantive issues and to participate in their resolution. Once one sees the health care system as centered on risk managerialism, the central issue for enriching the democratic characteristics of such a system becomes how to empower citizens to participate more effectively in the politics of risk allocation and distribution.

My suggestion is that we consider using risk pools as a venue for building publics in the Habermasian sense. A risk pool is the organizational and governance unit of any insurance plan. However, it is seldom thought of in terms of self-governance. Risk pools are actuarial constructs. They exist as clusters of individuals whose characteristics cause them to fall within some category of risk relevant to the form of insurance being sold (for example, the risk pool of teenage drivers or of beachfront property owners). They usually lack any social meaning for their members.

But the risk pools that compose almost all group health insurance are different in important ways. Employer-sponsored insurance (ESI) creates risk pools consisting of individuals who share a common employer, many of whom know each other, some quite well. Because membership in the plan is determined by reasons other than the goal of securing insurance, and because a large workplace plan invariably includes persons in a broad range of health status categories, ESI plans are “natural risk pools.” The link to employment creates a material reason for individuals not to exit the risk pool lightly, which diminishes the likelihood of high transaction costs for the insurer.

These same factors also make the ESI risk pool attractive as a site of governance for its participants. The link to employment that creates a material reason for individuals not to exit the risk pool also provides an incentive for employees to join a participatory risk governance process for the plan, were one to be offered. Many employees might welcome the opportunity to negotiate collectively with employers about health insurance benefits and other collective goods, without committing to full-scale union representation on all issues.²

Most importantly, a workplace health insurance group maps precisely onto a set of rich, dense, and strong social relationships. Using the work of Robert Putnam and other social scientists, employment law scholar Cynthia Estlund has built a powerful argument that democratic theory has underestimated the importance of workplaces in advancing democratic ends.³ Three of Estlund’s assertions stand out as relevant to the project of workplace-based risk pool governance. First, people often build their civic skills in the workplace, through discussions of political and other issues of public importance conducted in relatively public spaces. Second, outside of family or close friends, social ties at the workplace provide people with a stronger sense of belonging than any other institution in their lives. Third, greater racial diversity exists in the American workplace than in most other civic settings, including neighborhoods and schools.

The network of social connections at work also provides a useful foundation for effective governance of health risk. In the best case scenario, the social connections in work settings could facilitate the development of norms of reciprocity and trustworthiness, which in turn reinforce patterns of cooperation. This social capital helps to overcome problems of collective action, such as the resistance to engaging with difficult allocation decisions (the tragic choices problem) or the inclination to reject certain risks for oneself to achieve the gain that would result from someone else assuming them (the prisoner’s dilemma problem). The decision-making group grounded in a risk pool would operate without necessarily knowing what serious illnesses they or their families might suffer.

For these reasons, at least some workplace insurance plans have the potential to function also as publics. In ideal form, they would create space for political participation, debate, and opinion formation within the economic sector and as part of the system of risk managerialism. Their deliberations would require participants to engage with the arguments, concerns, and beliefs of others in the same risk pool, thus creating the potential for understandings that transcend self-interest.

Harnessing the economic power of risk pools to democratic governance structures could have a powerful effect on the quality of American political culture as it engages with health policy issues. Providing mechanisms for citizens to participate in shaping the parameters of their own health insurance could open up the discourse of risk allocation, which is currently dominated by management.

Finally, an important contribution of self-governance structures at the level of risk pools would be to make it easier for citizens to infuse risk allocation discourse with ethical values. As Deborah Stone has argued, insurance is a technology of governance that invites contemplation about issues of social responsibility because it requires resolution of questions about compassion and collective responses to suffering. In a world of individualism and competition, the very presence of insurance “legitimates social obligation and mutual aid.”⁴ More widespread citizen engagement with such issues would, in effect, democratize the norm setting implicit in the process of health insurance risk allocation.

 
II.
Concerns and Shortcomings

In contrast to my approach, many health policy experts argue for a complete de-linking of health insurance from the workplace. Their argument is that the economic distortions from an ESI system outweigh any benefits that come from administrative convenience. The most powerful argument against ESI is that it is doubly destructive: it fragments the overall population, thus undercutting social insurance principles, and it subsidizes individual health care consumption, thus creating moral hazard. Path dependency, not logical reasoning, has kept us locked into the workplace system for health insurance. I find these critiques of ESI to be compelling as rationales for a national, universal system of health care delivery, which I support. But given the enduring popularity of ESI, I offer a counter-perspective: infusing ESI risk pools with worker governance mechanisms could advance both democracy and justice.

I do, however, recognize that many shortcomings of an ESI system would carry over into attempts to foster greater employee control. Perhaps the bottom-line issue is how much power such democratized structures would have and how much discretion and authority employers would retain. It is naïve to imagine that such institutions could function outside of the power relations around them. Given those inequalities, the question is whether participants would be able to deliberate under conditions of egalitarian reciprocity and universal respect. If the aspiration of deliberative democracy is to create institutions that “tie[] the exercise of power to free reasoning among equals,” the very thickness of background social relations in a workplace may make it difficult to achieve that result among co-workers.⁵

Workplace power relations would inevitably produce problems in such an arrangement. Cooptation of workers by employer interests, the possible capture of the process by those most motivated to further their self-interest, or the simple failure of group members to fairly represent other workers all come to mind as possibilities. The history of gender and racial inequities within unions provides merely one example of the fact that more democratic norms in workplace relations are hardly a panacea for injustice.

Although these issues illustrate the ambitiousness and difficulty of using risk pool governance structures, the problems are not insurmountable. Ground rules would be necessary to prevent such groups from exacerbating, rather that moderating, inequities in health insurance. One protection would be to limit risk pool governance to the largest workplace groups, those with a significant degree of built-in diversity of interests. Additionally, legal restrictions to require justification for limitations on coverage would be necessary to counteract tendencies to exclude those with stigmatized diseases, such as HIV/AIDS. If we do achieve an expansion of insurance through health reform proposals currently under discussion, other ground rules would presumably include coverage of all (including part-time) employees and a minimum basic benefits package.

It is not practical to require every employer-sponsored plan to have a democratized risk pool governance structure. But it seems realistic to imagine that policies might be put in place to enable risk pool governance structures in workplaces with a large enough number of employees to constitute a robust risk pool and a meaningful degree of diversity. My goal here is not to set forth a full blueprint of a workplace-based risk pool governance structure. Rather, it is to encourage the idea of embarking on an experimentalist project through which these complexities can be explored.

 
III.
Toward Justice

The proposal that I have outlined speaks to how the concept, identity, and role of citizen can become a viable component of health care system governance. But it also offers the potential for advancing norms of distributional justice. Ideally, it could initiate a discourse of interdependency that could ultimately lead to greater equity.

Risk governance in health care represents a powerful compound of economic policy and moral normativity. The practices of risk allocation identify certain risks to be collective, others to be assumed by individuals; they mark certain actors as eligible for protection, others as not; and they incentivize certain conduct, but not all conduct, as socially beneficial because of its tendency to diminish risk. Allocating financial risk structures choices about who will receive what forms of care, who will pay for what kinds of illness, and how quality or negligence will be defined.

Our traditional constructs for addressing justice issues have not effectively engaged these health equity problems. Liberal rights discourse has never proven adequate or even fully relevant as a basis for confronting the gaping health care hole in the quality of American life. Negative liberty principles offer no purchase for contesting private actions, and even equality mandates that extend into the private sector seem insufficient for a problem that does not fit the minoritizing discourse of civil rights issues. Moreover, the individual fairness focus of a civil rights mandate can cut against an argument for community sharing of risk.

Debates on the ethical dimensions of health care have thus been dominated by the conflict between the insurance industry’s principle of “fair discrimination” in allocating risk and the solidarity norms of social insurance. For those who wish to advance equity in health care while still acknowledging the risk structure that governs the health system, it has been difficult to find a framework that engages both risk and equity in an effective manner.

Addressing issues of equity within a risk allocation paradigm offers a new and, I would argue, better way to capture and articulate the stakes at issue in the debate. It allows us (indeed, it forces us) to identify who gets included and excluded in the pooling process; how allocation decisions are made; and whether there are systems of accountability built in to produce a risk allocation scheme that is equitable, efficient, and flexible in determining how and to whom various kinds of risk are apportioned. Calling the system for what it is, and how it actually operates, is the most honest way to address the underlying values.

Simply establishing a risk-centered normative frame will not, of course, resolve the tensions. Risk talk can cut both ways. It is highly elastic, capable of framing normative issues around invocations of both solidarity and short-term self-interest. But governance structures based in risk pools would provide a framework through which advocates of greater equity could make their claims.

 
IV.
Conclusion

Mechanisms governing and distributing financial risk are what drive the health care system today.  The system’s viability is contingent on efficient risk allocation, but the inherent tensions and trade-offs between equity and efficiency in health care could be negotiated in a more open and democratic process. Such a venue is missing in the contemporary American health care system, both in the status quo and in proposals for reform. Regardless of whether health care financing mechanisms change in the future, increasing citizen engagement in the health care system will remain important. For something as central to our lives and our economy as the health system, we should interrogate much more vigorously than we have so far our conventional understanding of whether and how democratic norms and structures could provide mediating processes for risk-centered decision-making.

Acknowledgments:

Copyright © 2009 Georgetown Law Journal.

Nan. D. Hunter is Professor of Law at Brooklyn Law School.

This Editorial is based on the following full-length Article:   Nan D. Hunter, Risk Governance and Deliberative Democracy in Health Care, 97 GEO. L.J. 1 (2009). Click Here for the Full Version

Viruses and bacteria, many causing diseases long thought to be conquered, are developing resistances to some of the most commonly used drugs.  This is widely recognized as a growing public health problem, and not just by academics.  In 2007, the national media spent several days covering the case of Andrew Speaker, a lawyer from Boulder, Colorado.  Mr. Speaker flew to Europe even though he believed he was infected with drug-resistant tuberculosis, exposing many of his fellow passengers to the disease.  (The tuberculosis that infected Mr. Speaker turned out to be highly amenable to treatment, however.)

Another disease shows how serious drug resistance can become: HIV/AIDS.  HIV is unusually prone to modifications of its genetic code—it is a retrovirus, a class of viruses known for their error-prone method of replication.  This “mutability” means that HIV has developed resistance to treatments not just once, but over and over again in many different hosts.  Almost like clockwork, the virus has developed resistance to each new drug introduced to treat it.  Strains of the virus have developed that are resistant to two or more of the six classes of antiretroviral drugs used to treat HIV.  And recently, researchers have been forced to confront a new fear.  Scientists had believed that all HIV became less virulent as it adapted to antiretroviral drugs, because the virus was then less adapted to invading cells.  This belief was shattered in 2005 when researchers in New York presented a case study of a man they described as infected with an extremely virulent, multi-drug-resistant strain of HIV. 

But this only tells half the story.  In the years between its discovery in 1981 and 2001, AIDS killed 438,000 Americans.  By 2001, however, the disease had dropped out of the top fifteen causes of death in America.  In 1993, researchers at Harvard Medical School developed a treatment for HIV that would help deal with the disease’s ability to mutate.  The treatment was known as “HAART”: Highly Active AntiRetroviral Therapy.  HAART involves the use of a “cocktail” of at least three antitretroviral drugs, which overcome the virus’s ability to mutate.  It has been wildly successful in turning a disease that was once regarded as “inevitably fatal” into a serious, but treatable, chronic illness.

HIV/AIDS is a complicated disease.  My note, published in the Cornell Law Review, addresses one small portion of the law’s encounter with this complexity: the now obsolete criminal HIV-exposure statutes passed at the height of the AIDS panic in the late 1980s and early 1990s.  States enacted these statutes to address fears that the disease had become so widespread because individuals were intentionally infecting others.  A Presidential Commission deemed HIV-specific legislation necessary because the disease fell into a hole in the traditional criminal law: assault was insufficient to deal with a fatal disease, and murder was ineffective because the infector tended to predecease the infectee.  These statutes were never intended to deal with the complexity of the disease as it exists today.  But these laws are still applied: as recently as 2006, an Iowa man was sentenced to twenty-five years imprisonment despite not infecting a sexual partner with HIV. 

Although the statutes vary, they almost all share the following requirements: that the defendant know he or she is infected with HIV/AIDS; that the defendant expose another to HIV/AIDS, rather than infect that person; and that the defendant failed to disclose his or her HIV-infected status.  They are widely divergent in other ways: in the mental state that is required for conviction, in the conduct that constitutes exposure to HIV/AIDS, and in the penalties they impose.  At the time of their passage, and since, commentators have criticized these laws on several grounds.  They argue that if individuals who test positive for HIV infection are exposed to criminal prosecution, those at risk of infection will be less likely to be tested and seek treatment for the disease.  They also argue that the statutes spread misinformation about how HIV is spread.  But the most trenchant criticisms of criminal HIV-exposure statutes focus on their failure to meet the retributive goals of criminal law because they prohibit conduct that is not morally blameworthy.  Almost all of the activities prohibited by criminal HIV-exposure laws carry a surprisingly low risk of spreading the disease.

What these criticisms have failed to address is the changing nature of the HIV/AIDS epidemic.  These laws are increasingly obsolete.  The disease the statutes address no longer exists: it is an untreatable disease, a disease that leads inevitably to death, a disease of a single strain.  A completely untreated individual and an individual undergoing successful treatment with HAART both expose others to HIV infection when they have unprotected sex, but the risk of infection that the untreated individual is taking is orders of magnitude higher.  The statutes do not address this difference in culpability.  The prognosis of an individual newly infected with a multi-drug resistant strain of the virus is much lower than that of an individual newly infected with a non-resistant strain of the virus.  An individual who risks infecting others with a multi-drug resistant strain is much more culpable, but the statutes do not address this problem.  Under these statutes, disclosure of HIV status is a defense.  But what of the individual who discloses his or her status, but not that he or she is infected with a highly resistant strain?  Or who claims to be successfully undergoing treatment when he or she is not?  Without judicial reinterpretation, such an individual is innocent under these statutes.  Finally, almost all of these statutes provide for increased penalties compared with assault, but the consequences of HIV infection today are roughly comparable to the potential harms punished by assault—such as blinding.  Why have separate statutes when HIV infection has become, for most, a chronic illness?

I began this discussion of HIV/AIDS by referencing the environmental movement, and an essential truth it has emphasized—the law of unintended consequences.  This is really a restatement of a more essential truth about man’s interaction with biological systems: by their very nature, they are not inanimate.  They respond to us, and the choices we make, sometimes predictably, sometimes unpredictably.  Criminal HIV-exposure statutes are a case study in how ignoring this truth leads to bad law.

Acknowledgments:

Copyright © 2009 Cornell Law Review.

James B. McArthur is a J.D. Candidate at Cornell Law School.

This Editorial is based on the following full-length Article:   James B. McAruthur, The Tide Turns: The Changing HIV/AIDS Epidemic And The Criminalization Of HIV Exposure, 94 CORNELL L. REV. 707 (2009). Click Here for the Full Version

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