Journal Article•
Pigeonholing Illness: Medical Diagnosis as a Legal Construct
TL;DR: In this paper, the authors point out that by virtue of their often uncritical reliance on clinical judgments, agencies and courts have to some extent distorted and corrupted medical practice, interfering with the primarily therapeutic purposes underlying diagnostic decisionmaking by asking physicians, psychiatrists, and clinical researchers to provide answers to difficult legal and political questions.
Abstract: Disease definitions and clinical judgments routinely affect coverage and reimbursement decisions by health insurers, the licensing determinations of regulatory agencies charged with reviewing new therapeutic technologies, evidentiary and substantive rulings by the judiciary in personal injury lawsuits and criminal trials, eligibility decisions in disability programs, and the resolution of claims before workers' compensation tribunals. This reliance on the definition and identification of disease by the medical profession fails to appreciate the extent to which our conceptions of illness are socially constructed rather than based on value-neutral scientific data and the application of technical expertise. Just as social forces shape medical practice, legal institutions have influenced nosology and diagnosis, but the nature and consequences of their effects on the definition and identification of disease have gone largely unnoticed. By virtue of their often uncritical reliance on clinical judgments, agencies and courts have to some extent distorted and even corrupted medical practice, interfering with the primarily therapeutic purposes underlying diagnostic decisionmaking by asking physicians, psychiatrists, and clinical researchers to provide answers to difficult legal and political questions. To the extent that medical professionals make diagnostic judgments to serve non-therapeutic purposes, they may work against promoting the best interests of their patients and society.
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TL;DR: Diagnostic category-specific positive predictive values (PPV) and Cohen’s kappa results showed moderate agreement between source data and reference standard for most diagnostic categories, but for some diagnoses, such as anxiety disorders, the data were less satisfactory.
Abstract: There is increasing availability of data derived from diagnoses made routinely in mental health care, and interest in using these for research. Such data will be subject to both diagnostic (clinical) error and administrative error, and so it is necessary to evaluate its accuracy against a reference-standard. Our aim was to review studies where this had been done to guide the use of other available data. We searched PubMed and EMBASE for studies comparing routinely collected mental health diagnosis data to a reference standard. We produced diagnostic category-specific positive predictive values (PPV) and Cohen’s kappa for each study. We found 39 eligible studies. Studies were heterogeneous in design, with a wide range of outcomes. Administrative error was small compared to diagnostic error. PPV was related to base rate of the respective condition, with overall median of 76 %. Kappa results on average showed a moderate agreement between source data and reference standard for most diagnostic categories (median kappa = 0.45–0.55); anxiety disorders and schizoaffective disorder showed poorer agreement. There was no significant benefit in accuracy for diagnoses made in inpatients. The current evidence partly answered our questions. There was wide variation in the quality of source data, with a risk of publication bias. For some diagnoses, especially psychotic categories, administrative data were generally predictive of true diagnosis. For others, such as anxiety disorders, the data were less satisfactory. We discuss the implications of our findings, and the need for researchers to validate routine diagnostic data.
157 citations
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TL;DR: This research brief reexamines the racial construction of drug scares in light of the recent methamphetamine (meth) scare, a drug “epidemic” constructed as White and accompanied by a new diagnosis: “meth mouth.”
Abstract: From “reefer madness” to “crack babies,” American drug scares demonstrate that race shapes the construction of epidemics and diagnoses. This research brief reexamines the racial construction of drug scares in light of the recent methamphetamine (meth) scare, a drug “epidemic” constructed as White and accompanied by a new diagnosis: “meth mouth.” Through examination of survey data and dental research, I challenge the evidence for both the “epidemic” upsurge in meth use and the “meth mouth” diagnosis. Given the weak evidentiary basis for epidemic and diagnosis, I offer a preliminary interpretation that the meth epidemic is constructed as symptom and cause of White status decline, with dental decay the vehicle for anxieties about descent into “White trash” status.
55 citations
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TL;DR: Because clinical trial participation potentially results in significant individual benefits, including access to state-of-the-art care and improved disease monitoring, fairness demands equal opportunity for inclusion whenever scientifically appropriate.
Abstract: I. INTRODUCTION The past decade witnessed unprecedented growth in medical research involving human subjects,1 promising the development of new treatments that extend and improve the quality of life, as well as prevent disease. Recent biomedical breakthroughs such as the mapping of the human genome, improved understanding of pharmacokinetics and molecular biology, and novel theories about the mechanisms of diseases such as cancer have led to a proliferation of clinical trials. Such research provides the necessary bridge from scientific theory to practical medical application,2 and it is essential that these efforts benefit all persons who suffer from the studied diseases. In addition to the potential long-term pay-offs, clinical trials may offer immediate dividends to enrolled subjects. The opportunity to participate in medical research carries with it a variety of potential risks and benefits. Because clinical trial participation potentially results in significant individual benefits, including access to state-of-the-art care and improved disease monitoring, fairness demands equal opportunity for inclusion whenever scientifically appropriate. For people without health insurance, clinical trials may serve as a portal to the healthcare system. Although far from ideal, clinical trials may provide individual trial participants, particularly those who lack health insurance of any kind, with their sole opportunity to obtain regular healthcare, including potentially efficacious treatment of their particular condition.3 Clinical trial participants also seem to enjoy better health outcomes than their peers who receive the same therapy outside of the study.4 This "inclusion benefit," though unrelated to the specific clinical purposes of the study, represents a distinct and valuable bonus to those with limited access to healthcare services.5 Of course, not all clinical research offers the prospect of therapeutic benefit. Some study protocols pose serious risks to health, and research designed simply to improve scientific understanding offers no possible benefit to individual participants. The challenge is to fashion a system of oversight and participation that ensures justice in access to scientifically sound clinical trials that may provide individual benefits, while guarding against the imposition of unfair burdens or risks for any one group of participants. In the past, commentators have devoted a good deal of attention to the inclusion of women in clinical trials.6 This Article will focus instead on the issues surrounding the participation of racial and ethnic minorities in medical research. Ensuring participation in medical research by racial and ethnic minorities represents an essential goal along the path to better overall health for these populations.7 Numerous studies demonstrate that African-Americans, for example, suffer from a variety of health problems at disproportionately higher rates than whites.8 The infant mortality rate among African-Americans is double that of whites, and African-Americans can expect to live six fewer years on average than whites.9 African-Americans die from complications of diabetes at three times the rate of whites,10 and experience higher incidences of several cancers, including breast, colorectal, and lung cancers, as well as the highest death rates from all cancers combined.11 Moreover, the latest statistics on HIV infection suggest that African-Americans account for a disproportionately high seventy-five percent of new cases from heterosexual transmission and forty percent of cases among gay men.12 Equally disheartening, numerous studies demonstrate that African-American patients do not receive the same care as white patients when they seek medical treatment.13 Studies document racial disparities in the use of coronary drugs and complex coronary procedures,14 organ transplantation,15 the provision and availability of pain medications,16 and in many other healthcare contexts. …
38 citations
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TL;DR: A rich academic literature exists about issues of informed consent in medical care, and, to a lesser extent, about a variety of issues posed by human experimentation as mentioned in this paper, and near unanimity exists about the necessity for even fuller disclosure before experimenting on subjects. Although this Article intentionally side-steps the broader debate about informed consent, it challenges the conventional wisdom that special disclosure rules should apply in the experimental context.
Abstract: A rich academic literature exists about issues of informed consent in medical care, and, to a lesser extent, about a variety of issues posed by human experimentation. Most commentators regard patient autonomy as a desirable— though in practice often unattainable—goal, and near unanimity exists about the necessity for even fuller disclosure before experimenting on subjects. Although this Article intentionally side-steps the broader debate about informed consent, it challenges the conventional wisdom that special disclosure rules should apply in the experimental context.
Clinical trials have become big business. Estimates suggest that as many as twenty million Americans have enrolled in formal biomedical studies, though, as a measure of the full scope of medical experimentation on humans, that figure may represent only the proverbial tip of the iceberg. Historically, sponsors of clinical trials recruited subjects informally, counting on word of mouth among physicians and also perhaps posting flyers around college campuses.
26 citations
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TL;DR: This research has proven absolutely essential in changing public policy to support better care for those who suffer pain and is focused on legal, regulatory, ethical, professional, and financial issues in medical treatment for pain.
Abstract: Scholarship has intrinsic value, of course; but when good scholarship can stimulate change for the better in an area as fundamental to human dignity as health care and the relief of suffering, there is a special satisfaction. This has been our experience since 1996, when the first of now four special issues of this journal focused on legal, regulatory, ethical, professional, and financial issues in medical treatment for pain. With the generous and steadfast support of the Mayday Fund, the American Society of Law, Medicine & Ethics (ASLME) has generated a significant body of scholarship published in the Journal of Law, Medicine & Ethics (JLME). This research has proven absolutely essential in changing public policy to support better care for those who suffer pain. Over these years, the Mayday Project at ASLME has tackled many of the real and perceived barriers to effective pain relief. In pain management, both real and perceived obstacles can have a powerful negative effect.
14 citations