ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors, often paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information.

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Ethical Issues Related to Research Uses of Residual Dried Bloodspots from Newborn Screening

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Collection Editor(s): Julie Cakici, RN, PhD Candidate , Julia Brown, PhD , Aaron Goldenberg, PhD

Newborn screening for metabolic and genetic disease is arguably one of the greatest public health interventions—notwithstanding some ethical challenges and opportunities for improvement—because it reduces harm caused by treatable congenital disorders through early identification and intervention…

Abortion and the Genetic Counselor: The Impact of Restrictive Legislation on Genetic Counseling Practice

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Collection Editor(s): Laura Hercher, M.A., M.S., C.G.C. , Jordan Brown, M.A., M.S., L.G.C.

The first class of genetic counselors graduated with an M.A. from the Sarah Lawrence College in 1971; less than two years later, the Supreme Court decision in Roe v. Wade legalized abortion in all fifty states. In the U.S., the field of reproductive genetic counseling came of age against a…

Addressing Algorithmic Unfairness in Healthcare

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Collection Editor(s): Charlotte A. Tschider, J.D., M.A.

Artificial intelligence (AI) healthcare technology can solve our most complex and intransigent health issues. It has the potential to enhance healthcare quality, improve access, reduce cost, and deliver highly personalized care. However, delivering those solutions requires large, historical,…

Ethical Challenges in Obtaining Informed Consent for Genetic/Genomic Research

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Collection Editor(s): Lisa S. Parker, PhD

Obtaining informed consent (IC) for genetic/genomic research is complicated because most of the ethical issues associated with genetic research are considerations to be disclosed by researchers and weighed by prospective participants during the consent process. These include complicated…

Ethical and Legal Challenges Posed by the Implementation of AI Applications in the Healthcare Setting

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Collection Editor(s): Sara Gerke, Dipl-Jur Univ, MA

Healthcare institutions are implementing artificial intelligence (AI) at a rapid pace. The hope is that AI will improve the quality of care and reduce costs in the long run. However, the deployment of AI in healthcare settings also presents new ethical and legal challenges. For example, AI can…

Neurobehavioral Genetic Testing in Children: How Much Should We Know?

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Collection Editor(s): Claire Sathe, MD, JD , Paul S. Appelbaum, MD

Recent advances in genetics have yielded important insights into the etiology of autism spectrum disorder (ASD) and other neurodevelopmental disorders (NDDs). Professional societies such as the American Academy of Pediatrics and the American College of Medical Genetics and Genomics now recommend…

Who Are We Now? Genetics, Genomics, and the Question of the Human

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Collection Editor(s): Priscilla Wald, Ph.D. , Elizabeth Apple, M.Div

“We used to think our fate was in the stars,” quipped James Watson in a Time magazine piece announcing the Human Genome Project (HGP). “Now we know, in large measure, our fate is in our genes.” Scientific…

How Literature and Film Shape and Reflect Public Attitudes toward Genetics

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Collection Editor(s): Jay Clayton, Ph.D.

Powerful works of art enrich our understanding of the issues that matter most in our lives—not least in controversial areas of the biosciences. By exploring the dense cultural networks that shape science and technology, they help us see multiple dimensions of policy issues that might be opaque…

Social Norms in Selective Reproduction: Implications for the Wide Offer of Genetic Screening Technologies

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Collection Editor(s): Ainsley J. Newson

The ability to offer genetic information to inform reproductive decisions, for example through reproductive genetic carrier screening, expanded prenatal testing, or preimplantation embryo screening, is increasingly prevalent. A defining feature of such technologies is that they offer information…

Expanded Carrier Screening (ECS): Clinical and Ethical Considerations for Genetic Counseling

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Collection Editor(s): Melanie Myers, PhD, MS , Emily Wakefield, MS, CGC, LGC

Targeted carrier screening began over 50 years ago with a focus on populations at increased risk for specific genetic conditions based on patient-reported racial, ethnic, or ancestral background. As genetic technologies have evolved, testing laboratories have begun offering expanded carrier…

Advancing Ethical Engagement and Benefit Sharing Within International Collaborative Genomic Research Partnerships in Africa

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Collection Editor(s): Joseph Ali, JD , Erisa Sabakaki Mwaka, MMed, MSoc, PhD

Due to advances in genomic sequencing and…

Technologies to Operationalize Indigenous Data Sovereignty

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Collection Editor(s): Māui Hudson, BHSc, AIT, MHSc, AUT , Stephanie Carroll, DrPH, MPH

Throughout history, data about Indigenous communities, cultures, and territories have been collected and collated through research and surveillance as part of processes of colonisation and assimilation. Settler colonialism occurs not only on the land but also in the academy where the omission of…

Ethical, Legal, and Social Implications (ELSI) of DNA-based Technologies for Disaster Victim Identification (DVI)

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Collection Editor(s): Sara H. Katsanis, M.S. , Diana Madden, M.A.

As we mark the 20th anniversary of the attacks on the World Trade Center and Washington, D.C. that occurred on September 11, 2001, we reflect on the pain and loss of the events that shook the entire world, some of us very personally. Here, we also pause to note the progress and missteps that…

Current Legal Challenges to Abortion: Implications for Prenatal Genetics

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Collection Editor(s): Ellen Wright Clayton, M.D., J.D. , Marsha Michie, Ph.D.

The ability to examine the health of the fetus has expanded dramatically in the last half century. Most of the time, the news is reassuring. However, prenatal screening and diagnosis detect genetic conditions in a small percentage of cases. Effective prenatal intervention for these conditions is…

Game of Bones: Power, Ethics, and Emerging Technology in Paleogenomics Research

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Collection Editor(s): Keolu Fox, PhD

The field of paleogenomics is exploding. More ancient genomes were sequenced in 2019 than in all of history. According to The Economist, in 2018, oil was the most traded global commodity. However, in 2021, the demand for oil was surpassed by the demand for data itself, including…

Realizing the Self-Determination Goals of Indigenous People in Genetics Research

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Collection Editor(s): Vanessa Y. Hiratsuka, PhD, MPH

Self-determination and tribal sovereignty are core concepts in the lives and histories of Indigenous Peoples. Within the United States, the peoples of the American…

Empirical Evaluation of Arts-Based Informational Aids for ELSI Issues in the Clinic and Beyond

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Collection Editor(s): Gretchen A. Case, PhD, MA , Darian Mikelle Hackney

The rapidly changing science of clinical genetics and the complexity of its associated ethical, legal, and social (ELSI) issues call for novel approaches to information delivery and education of healthcare professionals and the public. Compared to traditional communication methodologies, arts-…

Ethical, Legal, and Social Implications (ELSI) at the Intersection of Genomics and Infectious Disease

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Collection Editor(s): Debra JH Mathews, PhD, MA , Sheethal Jose

Scientific and technological advances in the field of genomics have the potential to enable targeted clinical and public health measures to manage infectious disease outbreaks. The convergence of the fields of genomics and public health in the context of infectious disease raises a unique…

Race, Genetics, and Genetics Education

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Collection Editor(s): Brian M. Donovan, PhD , Daphne O. Martschenko, PhD

The completion of the Human Genome Project in 2003 opened up the floodgates of genetic data, ushering in rapid technological and scientific change. Today, the decreasing costs of genome sequencing are changing our understandings of human identity, especially racial identity. Yet, the influence…