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<!DOCTYPE html>
<html lang="en">
<head>
<meta charset="UTF-8">
<meta name="viewport" content="width=device-width, initial-scale=1.0">
<title>Genetic Privacy in US Insurance and Criminal Law</title>
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<header>
<h1>Resources</h1>
</header>
<main>
<p>Below you will find links to articles and other resources on the topics of insurer and law enforcement use of genetic information from a variety of perspectives. Many of these articles are publicly available, although a handful may be behind paywalls.</p>
<h2>Insurer Use of Genetic Information:</h2>
<ul>
<li>
<strong>NHGRI, Genetic Discrimination (January 2022)</strong>
<br>National Institutes of Health information about federal protections regulating health insurer use of genetic information
<br><a href="https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination" target="_blank">https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination</a>
</li>
<li>
<strong>Jarrod O. Anderson, Anna C. Lewis & Anya E. Prince, The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information, 22 DePaul J. Health Care L. (2021)</strong>
<br>A 50-state survey (completed in 2021) mapping state regulation of life, long-term care, and disability insurer use of genetic information
<br><a href="https://via.library.depaul.edu/jhcl/vol22/iss1/1/" target="_blank">https://via.library.depaul.edu/jhcl/vol22/iss1/1/</a>
</li>
<li>
<strong>A.C.F. Lewis, R.C. Green, & Anya E.R. Prince, Long-awaited progress in addressing genetic discrimination in the United States, 23 Genetics in Medicine 429 (2021)</strong>
<br>An article discussing Florida’s 2020 law barring life, long-term care, and disability insurer use of genetic information
<br><a href="https://www.nature.com/articles/s41436-020-01002-y" target="_blank">https://www.nature.com/articles/s41436-020-01002-y</a>
</li>
<li>
<strong>American Council of Life Insurers (ACLI), Q&A: Life Insurance Companies and Genetic Information</strong>
<br>A pamphlet from the ACLI regarding life insurer use of genetic information
<br><a href="https://www.acli.com/-/media/acli/public/files/pdfs-public-site/advocacy/riskclassificationgt_qanda.pdf" target="_blank">https://www.acli.com/-/media/acli/public/files/pdfs-public-site/advocacy/riskclassificationgt_qanda.pdf</a>
</li>
<li>
<strong>Patricia Born, Genetic Testing in Underwriting: Implications for Life Insurance Markets, Journal of Insurance Regulation (2019)</strong>
<br>An article assessing the potential impacts of life insurer use of genetic information
<br><a href="https://naic.soutronglobal.net/Portal/Public/en-US/DownloadImageFile.ashx?objectId=9554&ownerType=0&ownerId=26013" target="_blank">https://naic.soutronglobal.net/Portal/Public/en-US/DownloadImageFile.ashx?objectId=9554&ownerType=0&ownerId=26013</a>
</li>
<li>
<strong>Genetic Discrimination Observatory</strong>
<br>An international collaboration of researchers focused on genetic discrimination
<br><a href="https://gdo.global/en" target="_blank">https://gdo.global/en</a>
</li>
<li>
<strong>Gollinghorst, D. et al, Anti-Selection & Genetic Testing in Insurance: An Interdisciplinary Perspective, Journal of Law, Medicine & Ethics (2022)</strong>
<br>An article interrogating claims of adverse selection if insurers cannot have access to genetic information
<br><a href="https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/abs/antiselection-genetic-testing-in-insurance-an-interdisciplinary-perspective/6A9063081A5F0EF5D0F7518C3BE315D2" target="_blank">https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/abs/antiselection-genetic-testing-in-insurance-an-interdisciplinary-perspective/6A9063081A5F0EF5D0F7518C3BE315D2</a>
</li>
<li>
<strong>Prince, A.E.R., The Genetic Information Privacy Act: Drawbacks and Limitations, 330 JAMA 2049 (2023)</strong>
<br>An article highlighting the limits of the Genetic Information Privacy Act, a model law that many states have passed in an attempt to shore up genetic privacy.
<br><a href="https://jamanetwork.com/journals/jama/article-abstract/2811606" target="_blank">https://jamanetwork.com/journals/jama/article-abstract/2811606</a>
</li>
<li>
<strong>Kristen V. Brown, Genetic Discrimination is Coming for Us All, The Atlantic (November 12, 2024)</strong>
<br>A news article highlighting cases of genetic discrimination by life, long-term care, and disability insurers
<br><a href="https://www.theatlantic.com/health/archive/2024/11/dna-genetic-discrimination-insurance-privacy/680626/" target="_blank">https://www.theatlantic.com/health/archive/2024/11/dna-genetic-discrimination-insurance-privacy/680626/</a>
</li>
</ul>
<h2>Law Enforcement Use of Genetic Information:</h2>
<ul>
<li>
<strong>Natalie Ram, E.E. Murphy, & S.M. Suter, Regulating forensic genetic genealogy, 373 Science 1444 (2021)</strong>
<br>This commentary describes Maryland’s law regulating law enforcement use of genetic information and describes key elements of the law that make it a model for future lawmaking.
<br><a href="https://www.science.org/doi/10.1126/science.abj5724" target="_blank">https://www.science.org/doi/10.1126/science.abj5724</a>
</li>
<li>
<strong>S.M. Suter, E.E. Murphy, & Natalie Ram, Maryland can be a model for regulating law enforcement use of genetic databases, The Washington Post (June 18, 2021)</strong>
<br>A newspaper article discussing the recent Maryland law regulating law enforcement use of genetic information.
<br><a href="https://www.washingtonpost.com/opinions/2021/06/18/maryland-genetic-databases-law-enforcement-regulation-model/" target="_blank">https://www.washingtonpost.com/opinions/2021/06/18/maryland-genetic-databases-law-enforcement-regulation-model/</a>
</li>
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