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"Simoncelli, Tania"
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From Bedside to Bench and Back
For most of the past century, scientists and the sick lived in largely separate worlds. Knowledge production was left to a narrow circle of credentialed scientists while patients were recruited to participate as subjects in studies. This traditional, expert-driven research model, reinforced by the growth of large academic medical institutions, meant the road from bench to bedside was long, and it typically ran in only one direction. That started to change during the 1980s, when patient advocates with HIV/AIDS, and later cancer, began to demand more direct consideration of their needs and priorities. Over the last two decades, the effort has been joined by increasing numbers of patient-led groups seeking treatments for rare diseases. Patient communities are paving the way to a better system and will continue to do so. But public and private institutions must do more to address the systemic inequities that are undermining patients' power to accelerate research. It's time to fully acknowledge and embrace patients as central stakeholders in the research ecosystem-and to realign research priorities around the bedside rather than the bench.
Journal Article
Dangerous Excursions: The Case Against Expanding Forensic DNA Databases to Innocent Persons
Recent expansions of federal and state law enforcement databanks to include DNA samples and profiles of innocent persons threaten individual privacy, impose unjustifiable costs on society, and may undermine our pursuit of justice. The move to permanently retain DNA from arrestees and proposals for a universal database should be vigorously opposed on matters of principle, legality, and practicality.
Journal Article
Building Capacity for a Global Genome Editing Observatory: Conceptual Challenges
A new infrastructure is urgently needed at the global level to facilitate exchange on key issues concerning genome editing. We advocate the establishment of a global observatory to serve as a center for international, interdisciplinary, and cosmopolitan reflection. This article is the first of a two-part series.
Journal Article
Genetic justice
National DNA databanks were initially established to catalogue the identities of violent criminals and sex offenders. However, since the mid-1990s, forensic DNA databanks have in some cases expanded to include people merely arrested, regardless of whether they've been charged or convicted of a crime. The public is largely unaware of these changes and the advances that biotechnology and forensic DNA science have made possible. Yet many citizens are beginning to realize that the unfettered collection of DNA profiles might compromise our basic freedoms and rights.
Two leading authors on medical ethics, science policy, and civil liberties take a hard look at how the United States has balanced the use of DNA technology, particularly the use of DNA databanks in criminal justice, with the privacy rights of its citizenry. Krimsky and Simoncelli analyze the constitutional, ethical, and sociopolitical implications of expanded DNA collection in the United States and compare these findings to trends in the United Kingdom, Japan, Australia, Germany, and Italy. They explore many controversial topics, including the legal precedent for taking DNA from juveniles, the search for possible family members of suspects in DNA databases, the launch of \"DNA dragnets\" among local populations, and the warrantless acquisition by police of so-called abandoned DNA in the search for suspects. Most intriguing, Krimsky and Simoncelli explode the myth that DNA profiling is infallible, which has profound implications for criminal justice.
eBook
Building Capacity for a Global Genome Editing Observatory: Institutional Design
A new infrastructure is urgently needed at the global level to facilitate exchange on key issues concerning genome editing. We advocate the establishment of a global observatory to serve as a center for international, interdisciplinary, and cosmopolitan reflection. This article is the second of a two-part series.
Journal Article
Creating a data resource: what will it take to build a medical information commons?
National and international public–private partnerships, consortia, and government initiatives are underway to collect and share genomic, personal, and healthcare data on a massive scale. Ideally, these efforts will contribute to the creation of a medical information commons (MIC), a comprehensive data resource that is widely available for both research and clinical uses. Stakeholder participation is essential in clarifying goals, deepening understanding of areas of complexity, and addressing long-standing policy concerns such as privacy and security and data ownership. This article describes eight core principles proposed by a diverse group of expert stakeholders to guide the formation of a successful, sustainable MIC. These principles promote formation of an ethically sound, inclusive, participant-centric MIC and provide a framework for advancing the policy response to data-sharing opportunities and challenges.
Journal Article
Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons
Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.
Journal Article
California's Proposition 69: A Dangerous Precedent for Criminal DNA Databases
On November 2, 2004, California voters elected to radically expand their state criminal DNA database through the passage of Proposition 69. The approved ballot initiative authorized DNA collection and retention from all felons, any individuals with past felony convictions – including juveniles – and, beginning in 2009, all adults arrested for any felony offense. This dramatic database expansion threatens civil liberties and establishes a dangerous precedent for U.S. criminal databases.
Journal Article