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List of works by Robert Cook-Deegan

A randomized noninferiority trial of condensed protocols for genetic risk disclosure of Alzheimer's disease

scientific article published on 9 December 2014

AMP v. Myriad: A Surgical Strike on Blockbuster Business Models

scientific article published on 01 July 2013

After Myriad: Genetic Testing in the Wake of Recent Supreme Court Decisions about Gene Patents

scientific article

Alzheimer Testing at Silver Years ⬇️

scientific article published on January 1, 1998

An Open Toolkit for Tracking Open Science Partnership Implementation and Impact

An open toolkit for tracking open science partnership implementation and impact

scientific article published on 30 April 2019

Are human genes patentable?

scientific article published on August 2013

Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life

scientific article published on 18 January 2022

Barriers to clinical adoption of next generation sequencing: Perspectives of a policy Delphi panel

scientific article

Barriers to clinical adoption of next-generation sequencing: a policy Delphi panel's solutions.

scientific article published on 23 June 2017

Beyond Our Borders? Public Resistance to Global Genomic Data Sharing

scientific article

Bioethics and the Federal Government

scholarly article published 1996

Biomedical Research Policy and Innovation (1940s–Present)

article

Book Review The Moral Challenge of Alzheimer Disease By Stephen G. Post. 142 pp. Baltimore, Johns Hopkins University Press, 1995. $29.95. 0-8018-5174-2

article

Broad Consent for Research With Biological Samples: Workshop Conclusions

scientific article

Call for a worldwide survey of human genetic diversity: A vanishing opportunity for the Human Genome Project ⬇️

scientific article published on October 1, 1991

Columbia University's Axel patents: technology transfer and implications for the Bayh-Dole Act

scientific article

Commentary on “distinguishing genetic from nongenetic medical tests: Some implications for antidiscrimination legislation” (J. S. Alper and J. Beckwith) ⬇️

scientific article published on 01 April 1998

Commercial landscape of noninvasive prenatal testing in the United States

scientific article published on June 2013

Community crystal gazing

scientific article

Constructing narratives of heroism and villainy: case study of Myriad's BRACAnalysis(®) compared to Genentech's Herceptin(®).

scientific article published on 31 January 2013

DNA patents and diagnostics: not a pretty picture

scientific article

DNA sequence patents are not in the grave yet

Dementia and Aging

scholarly article by Robert Cook-Deegan published 1994 in Alzheimer Disease and Associated Disorders

Developing context-specific next-generation sequencing policy

scientific article

Direct-to-consumer genetic tests: beyond medical regulation?

scientific article published on 02 February 2009

Disclosing Pleiotropic Effects During Genetic Risk Assessment for Alzheimer Disease: A Randomized Trial

scientific article published on 26 January 2016

Disclosure of APOE genotype for risk of Alzheimer's disease

scientific article published on July 2009

Distributing the future: The weak justifications for keeping human genomic databases secret and the challenges and opportunities in reverse engineering them

scientific article

Dr. Varmus Goes to Washington

Erratum: Community crystal gazing

scholarly article published in Nature Biotechnology

Erratum: Corrigendum: Intellectual property, technology transfer and manufacture of low-cost HPV vaccines in India

scholarly article published in Nature Biotechnology

Ethical and practical issues associated with aggregating databases

scientific article published on 23 September 2008

Ethical, legal, and social issues in the Earth BioGenome Project

scientific article published on 18 January 2022

Evidence and anecdotes: an analysis of human gene patenting controversies

scientific article (publication date: September 2006)

Factors that affect infertility patients’ decisions about disposition of frozen embryos

article

Fertility patients' views about frozen embryo disposition: results of a multi-institutional U.S. survey

scientific article

Finding a Voice for Bioethics in Public Policy: Federal Initiatives in the United States, 1974–1991

scholarly article published 1998

Fostering reproducibility in industry-academia research

scientific article

Gene Patents: The Shadow of Uncertainty ⬇️

scientific article published on February 18, 2011

Gene patenting--the Supreme Court finally speaks

scientific article published on 10 July 2013

Gene patents and licensing: case studies prepared for the Secretary's Advisory Committee on Genetics, Health, and Society

scientific article

Gene patents and personalized medicine - what lies ahead?

scientific article published on 28 September 2009

Gene quests and the social ethics of research

article

Genetic testing for Alzheimer's and long-term care insurance

scientific article

Genetic testing for Alzheimer's disease and its impact on insurance purchasing behavior

scientific article published on March 2005

Genetics. Moving beyond "isolated" gene patents

scientific article (publication date: 12 July 2013)

Genomics and Patents

Genomics research: world survey of public funding

scientific article published on 10 October 2008

Harm, hype and evidence: ELSI research and policy guidance

scientific article published on 26 March 2013

How Bioethics Can Inform Policy Decisions About Genetic Enhancement

scholarly article published 2008

Impact of gene patents and licensing practices on access to genetic testing and carrier screening for Tay-Sachs and Canavan disease

scientific article

Impact of gene patents and licensing practices on access to genetic testing for Alzheimer disease

scientific article

Impact of gene patents and licensing practices on access to genetic testing for cystic fibrosis

scientific article

Impact of gene patents and licensing practices on access to genetic testing for hereditary hemochromatosis

scientific article

Impact of gene patents and licensing practices on access to genetic testing for inherited susceptibility to cancer: comparing breast and ovarian cancers with colon cancers

scientific article

Impact of gene patents and licensing practices on access to genetic testing for long QT syndrome

scientific article

Implications of normal lymphocyte DNA content in familial Alzheimer disease

scientific article published in July 1983

In support of mitochondrial replacement therapy

scientific article published on 01 June 2019

Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience

scientific article published on March 2008

Initial medical assessment of Kurdish refugees in the Turkey-Iraq border region

scientific article published on August 1991

Inner Sanctum

scientific article published in Science

Insulin Gene Patent Litigation

scientific article published in Science

Intellectual property, technology transfer and manufacture of low-cost HPV vaccines in India

scientific article

Intellectual property. Patents, secrecy, and DNA.

scientific article published in July 2001

Is Bayh-Dole Good for Developing Countries? Lessons from the U.S. Experience

article

Is Bayh-Dole good for developing countries? Lessons from the US experience

scientific article

Issues in Biosecurity and Biosafety

scientific article published in Science

Keeping score, strengthening policy and fighting bad actors over access to research tools.

scientific article

Law and Science Collide Over Human Gene Patents ⬇️

scientific article published on November 9, 2012

MYRIAD AFTER MYRIAD: THE PROPRIETARY DATA DILEMMA

scientific article

Mapping the Human Genome Biotechnology and the Human Genome: Innovations and Impact Avril D. Woodhead Benjamin J. Barnhart

article

Medical Biotechnology, United States Policies Influencing its Development

article

Metastasizing patent claims on BRCA1

scientific article

Moving beyond Bermuda: sharing data to build a medical information commons

scientific article

National Policies Influencing Innovation based on Human Genetics

article

Neurocognitive enhancement: what can we do and what should we do?

scientific article published on May 2004

Non-reporting and inconsistent reporting of race and ethnicity in articles that claim associations among genotype, outcome, and race or ethnicity

scientific article published on December 2006

Origins of the Human Genome Project

Ownership of human genes

scientific article published in Nature

PUBLIC HEALTH: Genomics and Medicine at a Crossroads in Chernobyl

scientific article published in Science

Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions

scientific article published on 30 January 2018

Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions (Preprint)

Patents and genome-wide DNA sequence analysis: is it safe to go into the human genome?

scientific article

Patents and innovation in cancer therapeutics: lessons from CellPro

scientific article (publication date: 2002)

Patents and misplaced angst: lessons for translational stem cell research from genomics

scientific article (publication date: 2 May 2013)

Patents in genomics and human genetics

scientific article (publication date: 2010)

Perspectives on genetic and genomic technologies in an academic medical center: the duke experience

scientific article published on 3 April 2015

Privacy, families, and human subject protections: some lessons from pedigree research

scientific article published in January 2001

PrivateParts

Public health. Boosting health services research

scientific article published on September 2011

Public variant databases: liability?

scientific article published on 15 December 2016

Public—Private Interactions in Genomic Medicine: Research and Development

article

Reflections on the cost of "low-cost" whole genome sequencing: framing the health policy debate

scientific article (publication date: November 2013)

Reply to Wrong fixes for gene patents

article

Report of the X chromosome workshop

scientific article

Rules for Growth: Promoting Innovation and Growth Through Legal Reform

article

Science and security. Practical experiences in dual-use review

scientific article

Sequenom v. Ariosa - The Death of a Genetic Testing Patent

scientific article published on December 2016

Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance

scientific article

Spinocerebellar ataxia: patient and health professional perspectives on whether and how patents affect access to clinical genetic testing

scientific article

The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project

scientific article published on 2 November 2018

The Human Genome Project after a decade: policy issues.

scientific article published in December 1998

The Mouse That Trolled: The Long and Tortuous History of a Gene Mutation Patent That Became an Expensive Impediment to Alzheimer's Research

scientific article

The continuing saga of patents and non‐invasive prenatal testing

scientific article published on 26 April 2019

The dangers of diagnostic monopolies

scientific article published on March 2009

The effects of business practices, licensing, and intellectual property on development and dissemination of the polymerase chain reaction: case study

scientific article

The emergence of commercial genomics: analysis of the rise of a biotechnology subsector during the Human Genome Project, 1990 to 2004.

scientific article

The genesis of the Human Genome Project

scientific article published on January 1991

The human genome project and international health.

scientific article published in June 1990

The large DNA insert cloning workshop

scientific article

The licensing of DNA patents by US academic institutions: an empirical survey

scientific article published on January 2006

The mouse that trolled (again).

scientific article published on 15 March 2016

The next controversy in genetic testing: clinical data as trade secrets?

scientific article (publication date: June 2013)

The role of physicians in conflicts and humanitarian crises. Case studies from the field missions of Physicians for Human Rights, 1988 to 1993.

scientific article published on August 1993

The science commons in health research: structure, function, and value

scientific article

The science commons in health research: structure, function, and value

article

The science commons in life science research: structure, function, and value of access to genetic diversity

scientific article published on 01 June 2006

U.S. Adult Perspectives on Facial Images, DNA, and Other Biometrics

Variants of uncertain significance in BRCA: a harbinger of ethical and policy issues to come?

scientific article

What's the Use? Disparate Purposes of U.S. Federal Bioethics Commissions

scientific article published in May 2017

« Biens communs scientifiques » et recherche en sciences de la vie : structure, fonction et valeur de l'accès à la diversité génétique

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