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Location as Health
In: Houston Journal of Health Law and Policy, Forthcoming
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HIDDEN TRADE-OFFS IN INSURANCE WELLNESS PROGRAMS
In: U Iowa Legal Studies Research Paper No. 2020-17
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Working paper
Political Economy, Stakeholder Voices, and Saliency: Lessons From International Policies Regulating Insurer Use of Genetic Information
In: 5 Journal of Law and the Biosciences 461 (2019)
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Consuming Genetics as an Insurance Consumer
In: U Iowa Legal Studies Research Paper No. 2019-13
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Working paper
Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?
In: Vol. 96:624, Nebraska L.Rev., 2018
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Comparative perspectives: regulating insurer use of genetic information
Fear of genetic discrimination has led individuals worldwide to avoid medically recommended genetic testing and participation in genomics research, causing potential health effects as research and clinical care are stymied. In response, many countries have adopted policies that regulate how insurers, such as life, disability, or critical illness insurers, can underwrite using genetic test results. This article presents a comparison of policies in the United Kingdom, Canada, and Australia, through analysis of interviews with 59 key stakeholders representing insurance, government, advocacy, academia, and genetics. While the ultimate policy of each country is different, the policy motivations and issues raised share commonalities across the countries, particularly around themes of fairness, usefulness of genetic information, and the determination of actuarial fairness.
BASE
Prevention for those who can pay: insurance reimbursement of genetic-based preventive interventions in the liminal state between health and disease
Clinical use of genetic testing to predict adult onset conditions allows individuals to minimize or circumvent disease when preventive medical interventions are available. Recent policy recommendations and changes expand patient access to information about asymptomatic genetic conditions and create mechanisms for expanded insurance coverage for genetic tests. The American College of Medical Genetics and Genomics (ACMG) recommends that laboratories provide incidental findings of medically actionable genetic variants after whole genome sequencing. The Patient Protection and Affordable Care Act (ACA) established mechanisms to mandate coverage for genetic tests, such as BRCA. The ACA and ACMG, however, do not address insurance coverage for preventive interventions. These policies equate access to testing as access to prevention, without exploring the accessibility and affordability of interventions. In reality, insurance coverage for preventive interventions in asymptomatic adults is variable given the US health insurance system's focus on treatment. Health disparities will be exacerbated if only privileged segments of society can access preventive interventions, such as prophylactic surgeries, screenings, or medication. To ensure equitable access to interventions, federal or state legislatures should mandate insurance coverage for both predictive genetic testing and recommended follow-up interventions included in a list established by an expert panel or regulatory body.
BASE
Political economy, stakeholder voices, and saliency: lessons from international policies regulating insurer use of genetic information
A decade ago, Congress passed the Genetic Information Nondiscrimination Act (GINA), with the goals to address fear of genetic discrimination and prevent adverse health insurance and employment decisions on the basis of one's genetic information. Yet, fear of discrimination remains because other insurers, notably life, long-term care, and disability insurers, are not covered by the law. Therefore, there have been persistent murmurings for a 'GINA 2.0' to extend the protections of the original law. Although it is plausible to assume that the insurance industry has the political economy to control future regulation, given the saliency of genetic discrimination, other stakeholders and bureaucrats may have greater influence. This paper explores the history of policy in four countries—the United Kingdom, Sweden, Australia, and Canada. Each country provides examples of continued policy debate and change following an initial period of reliance on insurance industry self-regulation, with change generally occurring over the objection of the insurance industry. This article argues that US insurers, regulators, and stakeholders should negotiate a consensus solution for insurer use of genetic information that balances between social and economic considerations. Without compromise, continued saliency and a weakened political economy of insurers will foster continued entrenched debate on the issue.
BASE
Gene Therapy's Field of Dreams: If You Build It, Will We Pay?
In: 97 North Carolina Law Review 1463 (2019)
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Working paper
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Anti-selection & Genetic Testing in Insurance: An Interdisciplinary Perspective
In: Journal of Law, Medicine, and Ethics, Forthcoming
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Confronting New Issues in Genetic Discrimination
In: Joly, Yann and Huerne, Katherine and Arych, Mykhailo and Bombard, Yvonne and De Paor, Aisling and Dove, Edward and Granados Moreno, Palmira and Ho, Calvin W.L. and Ho, Chih-Hsing and Van Hoyweghen, Ine and Kim, Hannah and Lebret, Audrey and Minssen, Timo and O Cathaoir, Katharina and Prince, Anya E.
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The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination
In: Trends in Genetics
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