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Research Output 1978 2019

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Article
2019

BRCA1/2 Variant Data-Sharing Practices

Bollinger, J. M., Sanka, A., Dolman, L., Liao, R. G. & Cook-Deegan, R., Mar 1 2019, In : The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. 47, 1, p. 88-96 9 p.

Research output: Contribution to journalArticle

Open Access
Information Dissemination
Risk Management
Motivation
Databases
Interviews

Characterizing the Biomedical Data-Sharing Landscape

Villanueva, A. G., Cook-Deegan, R., Koenig, B. A., Deverka, P. A., Versalovic, E., McGuire, A. L. & Majumder, M. A., Mar 1 2019, In : The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. 47, 1, p. 21-30 10 p.

Research output: Contribution to journalArticle

Open Access
Information Dissemination
Biomedical Technology
Informatics
Lenses
Biomedical Research

Ethically Managing Risks in Global Health Fieldwork: Human Rights Ideals Confront Real World Challenges

Hall-Clifford, R. & Cook-Deegan, R., Jun 1 2019, In : Health and human rights. 21, 1, p. 7-18 12 p.

Research output: Contribution to journalArticle

human rights
health
Health Personnel
Human Rights Abuses
Health

Ethics of Global Health Photography: A Focus on Being More Human

Graham, A. P., Lavery, J. V. & Cook-Deegan, R., Jun 1 2019, In : Health and human rights. 21, 1, p. 49-62 14 p.

Research output: Contribution to journalArticle

Photography
photography
Ethics
moral philosophy
human being

Genomic Data-Sharing Practices

Villanueva, A. G., Cook-Deegan, R., Robinson, J. O., McGuire, A. L. & Majumder, M. A., Mar 1 2019, In : The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. 47, 1, p. 31-40 10 p.

Research output: Contribution to journalArticle

Open Access
Information Dissemination
Computer Security
Privacy
DNA

Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons

Deverka, P. A., Gilmore, D., Richmond, J., Smith, Z., Mangrum, R., Koenig, B. A., Cook-Deegan, R., Villanueva, A. G., Majumder, M. A. & McGuire, A. L., Mar 1 2019, In : The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. 47, 1, p. 70-87 18 p.

Research output: Contribution to journalArticle

Open Access
Governing Board
Computer Security
Information Dissemination
Privacy
Public Policy

Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons

McGuire, A. L., Majumder, M. A., Villanueva, A. G., Bardill, J., Bollinger, J. M., Boerwinkle, E., Bubela, T., Deverka, P. A., Evans, B. J., Garrison, N. A., Glazer, D., Goldstein, M. M., Greely, H. T., Kahn, S. D., Knoppers, B. M., Koenig, B. A., Lambright, J. M., Mattison, J. E., O'Donnell, C., Rai, A. K. & 7 others, Rodriguez, L. L., Simoncelli, T., Terry, S. F., Thorogood, A. M., Watson, M. S., Wilbanks, J. T. & Cook-Deegan, R., Mar 1 2019, In : The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. 47, 1, p. 12-20 9 p.

Research output: Contribution to journalArticle

Open Access
Information Dissemination
Interviews
Research

Introduction: Sharing Data in a Medical Information Commons

Cook-Deegan, R., Majumder, M. A. & McGuire, A. L., Mar 1 2019, In : The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. 47, 1, p. 7-11 5 p.

Research output: Contribution to journalArticle

Open Access
Information Dissemination

LeRoy Walters's Legacy of Bioethics in Genetics and Biotechnology Policy

Cook-Deegan, R. & McCormack, S. J., Jan 1 2019, In : Kennedy Institute of Ethics journal. 29, 1, p. 51-66 16 p.

Research output: Contribution to journalArticle

biotechnology policy
gene therapy
Bioethics
Biotechnology
bioethics

The continuing saga of patents and non-invasive prenatal testing

Hawkins, N., Nicol, D., Chandrasekharan, S. & Cook-Deegan, R., Jan 1 2019, In : Prenatal Diagnosis.

Research output: Contribution to journalArticle

Open Access
Patents
Jurisprudence
Intellectual Property
Delivery of Health Care
Private Sector

What is a Medical Information Commons?

Bollinger, J. M., Zuk, P. D., Majumder, M. A., Versalovic, E., Villanueva, A. G., Hsu, R. L., McGuire, A. L. & Cook-Deegan, R., Mar 1 2019, In : The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. 47, 1, p. 41-50 10 p.

Research output: Contribution to journalArticle

Open Access
Privacy
Biomedical Research
Research
2018
5 Citations (Scopus)

A randomized controlled trial of disclosing genetic risk information for Alzheimer disease via telephone

REVEAL Study Group, Jan 1 2018, In : Genetics in Medicine. 20, 1, p. 132-141 10 p.

Research output: Contribution to journalArticle

Disclosure
Telephone
Alzheimer Disease
Randomized Controlled Trials
Apolipoprotein E4
5 Citations (Scopus)

BRCA Challenge: BRCA Exchange as a global resource for variants in BRCA1 and BRCA2

BRCA Challenge Authors, Dec 1 2018, In : PLoS Genetics. 14, 12, e1007752.

Research output: Contribution to journalArticle

Open Access
Databases
genetic variation
resource
Information Dissemination
imidazole mustard
1 Citation (Scopus)

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

Maxson Jones, K., Ankeny, R. A. & Cook-Deegan, R., Jan 1 2018, (Accepted/In press) In : Journal of the History of Biology.

Research output: Contribution to journalArticle

Bermuda
Human Genome Project
Information Dissemination
History
history
1 Citation (Scopus)

Universities: The fallen angels of Bayh-Dole?

Eisenberg, R. S. & Cook-Deegan, R., Oct 1 2018, In : Daedalus. 147, 4, p. 76-89 14 p.

Research output: Contribution to journalArticle

patent
act
invention
university
non-profit-organization
2017
4 Citations (Scopus)

Barriers to clinical adoption of nextgeneration sequencing: A policy Delphi panel's solutions

Messner, D. A., Koay, P., Al Naber, J., Cook-Deegan, R., Majumder, M., Javitt, G., Dvoskin, R., Bollinger, J., Curnutte, M. & McGuire, A. L., Jul 1 2017, In : Personalized Medicine. 14, 4, p. 339-354 16 p.

Research output: Contribution to journalArticle

Information Dissemination
Accreditation
Certification
Health
10 Citations (Scopus)

Public variant databases: Liability?

Thorogood, A., Cook-Deegan, R. & Knoppers, B. M., Jul 1 2017, In : Genetics in Medicine. 19, 7, p. 838-841 4 p.

Research output: Contribution to journalArticle

Databases
Information Dissemination
Patient Harm
Viverridae
Genomics
6 Citations (Scopus)

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

Cook-Deegan, R., Ankeny, R. A. & Maxson Jones, K., Aug 31 2017, In : Annual Review of Genomics and Human Genetics. 18, p. 389-415 27 p.

Research output: Contribution to journalArticle

Bermuda
Information Dissemination
Genomics
Insurance Pools
Research Ethics

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

Brian, J. D. & Cook-Deegan, R., May 1 2017, In : Hastings Center Report. 47, p. S14-S16

Research output: Contribution to journalArticle

Bioethics
bioethics
Behavioral Research
behavioral research
Recombinant DNA
2016
10 Citations (Scopus)

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

Messner, D. A., Al Naber, J., Koay, P., Cook-Deegan, R., Majumder, M., Javitt, G., Deverka, P., Dvoskin, R., Bollinger, J., Curnutte, M., Chandrasekharan, S. & McGuire, A., Sep 1 2016, In : Applied and Translational Genomics. 10, p. 19-24 6 p.

Research output: Contribution to journalArticle

Delphi Technique
Intellectual Property
Information Dissemination
Databases
Research
16 Citations (Scopus)

Beyond Our Borders? Public Resistance to Global Genomic Data Sharing

Majumder, M. A., Cook-Deegan, R. & McGuire, A. L., Nov 2 2016, In : PLoS Biology. 14, 11, e2000206.

Research output: Contribution to journalArticle

Information Dissemination
Privacy
researchers
genomics
Research Personnel

Community crystal gazing

Acharya, A., Bingham, K., Bradner, J., Burke, W., Charo, R. A., Cherry, J., Choulika, A., Coles, T., Cook-Deegan, R., Crooke, S. T., Crook, S. T., Díaz, E., Erickson, B., Giddings, L. V., Giwa, S. E. R., Greenwood, J. C., Gulati, V., Hall, S., Harris, J., Heywood, J. & 23 others, Hill, C., Levin, J., Mangubat, A., Maraganore, J., Mariggi, G., Mazur, B. J., McGuire, A. L., Moll, N., Moreno, J., Naughton, G., Nelsen, L., Osbourn, J., Perez, D., Reed, J., Schmidt, E., Seyfert-Margolis, V., Stoffels, P., Thorball, J., O'Toole, T., Vainu, I., van Deventer, S., Zerhouni, E. & Zohar, D., Mar 1 2016, In : Biotechnology. 34, 3, p. 276-283 8 p.

Research output: Contribution to journalArticle

17 Citations (Scopus)

Disclosing pleiotropic effects during genetic risk assessment for Alzheimer disease

Christensen, K. D., Roberts, J. S., Whitehouse, P. J., Royal, C. D. M., Obisesan, T. O., Cupples, L. A., Vernarelli, J. A., Bhatt, D. L., Linnenbringer, E., Butson, M. B., Fasaye, G. A., Uhlmann, W. R., Hiraki, S., Wang, N., Cook-Deegan, R. & Green, R. C., Feb 2 2016, In : Annals of Internal Medicine. 164, 3, p. 155-163 9 p.

Research output: Contribution to journalArticle

Alzheimer Disease
Coronary Artery Disease
Health Behavior
Disclosure
Apolipoproteins E
4 Citations (Scopus)
Patents
patent
Genes
Jurisprudence
Mutation
1 Citation (Scopus)

The mouse that trolled (again)

Cook-Deegan, R., Vishnubhakat, S. & Bubela, T., Apr 1 2016, In : Journal of Law and the Biosciences. 3, 1, p. 185-191 7 p.

Research output: Contribution to journalArticle

2015
15 Citations (Scopus)

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

Green, R. C., Christensen, K. D., Cupples, L. A., Relkin, N. R., Whitehouse, P. J., Royal, C. D. M., Obisesan, T. O., Cook-Deegan, R., Linnenbringer, E., Butson, M. B., Fasaye, G. A., Levinson, E., Roberts, J. S., Bhatt, D., Biesecker, B., Blacker, D., Chen, C., Cox, E., Davis, J. G., Farrer, L. & 22 others, Griffith, P., Harkins, K., Hiraki, S., Johnson, M., Johnson, S., Juengst, E., Karlawish, J., Le, L., McCarty Wood, E., Obisesan, T., Post, S., Quaid, K., Ravdin, L., Roter, D., Stern, R., Sadovnick, A., Sami, S., Sankar, P., Topol, E., Uhlmann, W., Waterston, L. & Wright, L., Oct 1 2015, In : Alzheimer's and Dementia. 11, 10, p. 1222-1230 9 p.

Research output: Contribution to journalArticle

Disclosure
Clinical Protocols
Alzheimer Disease
Apolipoproteins E
Anxiety
95 Citations (Scopus)

Broad Consent for Research With Biological Samples: Workshop Conclusions

Grady, C., Eckstein, L., Berkman, B., Brock, D., Cook-Deegan, R., Fullerton, S. M., Greely, H., Hansson, M. G., Hull, S., Kim, S., Lo, B., Pentz, R., Rodriguez, L., Weil, C., Wilfond, B. S. & Wendler, D., Sep 2 2015, In : American Journal of Bioethics. 15, 9, p. 34-42 9 p.

Research output: Contribution to journalArticle

Bioethics
Education
Research
Information Dissemination
National Institutes of Health (U.S.)

Has NIH lost its halo?

Cook-Deegan, R., 2015, In : Issues in Science and Technology. 31, 2, p. 36-47 12 p.

Research output: Contribution to journalArticle

2 Citations (Scopus)

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

Bubela, T. & Cook-Deegan, R., Feb 1 2015, In : Nature Biotechnology. 33, 2, p. 143-147 5 p.

Research output: Contribution to journalArticle

Intellectual property
Biotechnology
8 Citations (Scopus)

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

Katsanis, S. H., Minear, M. A., Vorderstrasse, A., Yang, N., Reeves, J. W., Rakhra-Burris, T., Cook-Deegan, R., Ginsburg, G. S. & Simmons, L. A., Apr 3 2015, In : Journal of Personalized Medicine. 5, 2, p. 67-82 16 p.

Research output: Contribution to journalArticle

Pharmacogenetics
Genetic Testing
Genetic Research
Technology
Health Personnel
2014
6 Citations (Scopus)

Patents and Genome-Wide DNA Sequence Analysis: Is It Safe to Go into the Human Genome?

Cook-Deegan, R. & Chandrasekharan, S., Sep 1 2014, In : Journal of Law, Medicine and Ethics. 42, s1, p. 42-50 9 p.

Research output: Contribution to journalArticle

Patents
Human Genome
DNA Sequence Analysis
Genome
Exome
46 Citations (Scopus)

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

Cheon, J. Y., Mozersky, J. & Cook-Deegan, R., Dec 19 2014, In : Genome Medicine. 6, 12, 121.

Research output: Contribution to journalArticle

Ethics
Genes
Genetic Testing
BRCA2 Gene
BRCA1 Gene
2013
17 Citations (Scopus)
Patents
Biotechnology
Intellectual Property
Courage
Trastuzumab
41 Citations (Scopus)

Gene patenting - The Supreme Court finally speaks

Kesselheim, A. S., Cook-Deegan, R., Winickoff, D. E. & Mello, M. M., 2013, In : New England Journal of Medicine. 369, 9, p. 869-875 7 p.

Research output: Contribution to journalArticle

Genes
29 Citations (Scopus)

Harm, hype and evidence: ELSI research and policy guidance

Caulfield, T., Chandrasekharan, S., Joly, Y. & Cook-Deegan, R., Mar 26 2013, In : Genome Medicine. 5, 3, 21.

Research output: Contribution to journalArticle

Research
Anecdotes
Genetic Research
Patents
Policy Making
49 Citations (Scopus)

Reflections on the Cost of "Low-Cost" Whole Genome Sequencing: Framing the Health Policy Debate

Caulfield, T., Evans, J., McGuire, A., McCabe, C., Bubela, T., Cook-Deegan, R., Fishman, J., Hogarth, S., Miller, F. A., Ravitsky, V., Biesecker, B., Borry, P., Cho, M. K., Carroll, J. C., Etchegary, H., Joly, Y., Kato, K., Lee, S. S. J., Rothenberg, K., Sankar, P. & 6 others, Szego, M. J., Ossorio, P., Pullman, D., Rousseau, F., Ungar, W. J. & Wilson, B., Nov 2013, In : PLoS Biology. 11, 11, e1001699.

Research output: Contribution to journalArticle

High-Throughput Nucleotide Sequencing
public opinion
health policy
Public Opinion
Human Genome
7 Citations (Scopus)

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

Wiechers, I. R., Perin, N. C. & Cook-Deegan, R., Sep 20 2013, In : Genome Medicine. 5, 9, 83.

Research output: Contribution to journalArticle

Human Genome Project
Biotechnology
Genomics
Patents
Intellectual Property
60 Citations (Scopus)

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

Cook-Deegan, R., Conley, J. M., Evans, J. P. & Vorhaus, D., Jun 1 2013, In : European Journal of Human Genetics. 21, 6, p. 585-588 4 p.

Research output: Contribution to journalArticle

Genetic Testing
Information Dissemination
Databases
Insurance Carriers
Access to Information
2011
1 Citation (Scopus)

Genome-sequencing anniversary. Gene patents: the shadow of uncertainty.

Cook-Deegan, R., Feb 18 2011, In : Science (New York, N.Y.). 331, 6019, p. 873-874 2 p.

Research output: Contribution to journalArticle

Patents
Anniversaries and Special Events
Uncertainty
Genome
Genes
2010
76 Citations (Scopus)

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

Lyerly, A. D., Steinhauser, K., Voils, C., Namey, E., Alexander, C., Bankowski, B., Cook-Deegan, R., Dodson, W. C., Gates, E., Jungheim, E. S., McGovern, P. G., Myers, E. R., Osborn, B., Schlaff, W., Sugarman, J., Tulsky, J. A., Walmer, D., Faden, R. R. & Wallach, E., Jan 15 2010, In : Fertility and Sterility. 93, 2, p. 499-509 11 p.

Research output: Contribution to journalArticle

Embryo Disposition
Fertility
Embryonic Structures
Reproduction
Embryo Research
35 Citations (Scopus)

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

Taylor, D. H., Cook-Deegan, R., Hiraki, S., Roberts, J. S., Blazer, D. G. & Green, R. C., Jan 2010, In : Health Affairs. 29, 1, p. 102-108 7 p.

Research output: Contribution to journalArticle

Long-Term Care Insurance
Genetic Testing
Alzheimer Disease
Insurance Coverage
Long-Term Care
16 Citations (Scopus)

Metastasizing patent claims on BRCA1

Kepler, T. B., Crossman, C. & Cook-Deegan, R., May 2010, In : Genomics. 95, 5, p. 312-314 3 p.

Research output: Contribution to journalArticle

Oligonucleotides
Patents
Chromosomes, Human, Pair 1
Nucleic Acid Databases
Human Chromosomes
2009
286 Citations (Scopus)

Disclosure of APOE genotype for risk of Alzheimer's disease

Green, R. C., Roberts, J. S., Cupples, L. A., Relkin, N. R., Whitehouse, P. J., Brown, T., Eckert, S. L., Butson, M., Sadovnick, A. D., Quaid, K. A., Chen, C., Cook-Deegan, R. & Farrer, L. A., Jul 16 2009, In : New England Journal of Medicine. 361, 3, p. 245-254 10 p.

Research output: Contribution to journalArticle

Disclosure
Apolipoproteins E
Alzheimer Disease
Genotype
Apolipoprotein E4
2008
19 Citations (Scopus)

Genomics research: World survey of public funding

Pohlhaus, J. R. & Cook-Deegan, R., Oct 10 2008, In : BMC Genomics. 9, 472.

Research output: Contribution to journalArticle

Genomics
Research
Surveys and Questionnaires
Organizations
Health Expenditures
31 Citations (Scopus)

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

Christensen, K. D., Roberts, J. S., Royal, C. D. M., Fasaye, G. A., Obisesan, T., Cupples, L. A., Whitehouse, P. J., Butson, M. B., Linnenbringer, E., Relkin, N. R., Farrer, L., Cook-Deegan, R. & Green, R. C., Mar 2008, In : Genetics in Medicine. 10, 3, p. 207-214 8 p.

Research output: Contribution to journalArticle

Alzheimer Disease
African Americans
Genetic Testing
Apolipoproteins E
Randomized Controlled Trials
2006
63 Citations (Scopus)

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

Lyerly, A. D., Steinhauser, K., Namey, E., Tulsky, J. A., Cook-Deegan, R., Sugarman, J., Walmer, D., Faden, R. & Wallach, E., Jun 2006, In : Fertility and Sterility. 85, 6, p. 1623-1630 8 p.

Research output: Contribution to journalArticle

Embryo Disposition
Infertility
Embryonic Structures
Decision Making
Interviews
26 Citations (Scopus)

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

Shanawani, H., Dame, L., Schwartz, D. A. & Cook-Deegan, R., Dec 2006, In : Journal of Medical Ethics. 32, 12, p. 724-728 5 p.

Research output: Contribution to journalArticle

association claim
ethnicity
Genotype
Health
health
29 Citations (Scopus)
Intellectual Property
Polymerase chain reaction
Intellectual property
Licensure
Polymerase Chain Reaction
14 Citations (Scopus)

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

Cook-Deegan, R. & Dedeurwaerdere, T., Jun 2006, In : International Social Science Journal. 58, 188, p. 299-317 19 p.

Research output: Contribution to journalArticle

life sciences
science
collective behavior
Values
Bermuda
12 Citations (Scopus)

Who owns the genome?

Angrist, M. & Cook-Deegan, R., Dec 2006, In : New Atlantis (Washington, D.C.). 11, p. 87-96 10 p.

Research output: Contribution to journalArticle

SARS Virus
Human Genome Project
Genetic Databases
Access to Information
Genetic Research