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Research Output 1978 2019

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

Global Health Fieldwork Ethics: Mapping the Challenges

Hall-Clifford, R., Addiss, D. G., Cook-Deegan, R. & Lavery, J. V., Jun 1 2019, In : Health and human rights. 21, 1, p. 1-5 5 p.

Research output: Contribution to journalEditorial

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

In support of mitochondrial replacement therapy

Adashi, E. Y., Caplan, A. L., Capron, A., Chapman, A. R., Cho, M., Clayton, E. W., Cohen, I. G., Cook-Deegan, R., Faden, R. R., Friedmann, T., Gostin, L. O., Greely, H. T., Johnston, J., Juengst, E., King, P. A., Knowles, L. P., Lyerly, A. D., McGuire, A. L., Moreno, J. D., Rothenberg, K. & 2 others, Truog, R. D. & Walters, L. R., Jun 1 2019, In : Nature Medicine. 25, 6, p. 870-871 2 p.

Research output: Contribution to journalLetter

Mitochondrial Replacement Therapy

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)

CRISPR Patents: Aspiring to Coherent Patent Policy

Cook-Deegan, R., Dec 2 2018, In : American Journal of Bioethics. 18, 12, p. 51-54 4 p.

Research output: Contribution to journalComment/debate

Clustered Regularly Interspaced Short Palindromic Repeats
Patents
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
9 Citations (Scopus)

Creating a data resource: What will it take to build a medical information commons?

Deverka, P. A., Majumder, M. A., Villanueva, A. G., Anderson, M., Bakker, A. C., Bardill, J., Boerwinkle, E., Bubela, T., Evans, B. J., Garrison, N. A., Gibbs, R. A., Gentleman, R., Glazer, D., Goldstein, M. M., Greely, H., Harris, C., Knoppers, B. M., Koenig, B. A., Kohane, I. S., La Rosa, S. & 12 others, Mattison, J., O'Donnell, C. J., Rai, A. K., Rehm, H. L., Rodriguez, L. L., Shelton, R., Simoncelli, T., Terry, S. F., Watson, M. S., Wilbanks, J., Cook-Deegan, R. & McGuire, A. L., Sep 22 2017, In : Genome Medicine. 9, 1, 84.

Research output: Contribution to journalLetter

Public-Private Sector Partnerships
Computer Security
Information Dissemination
Ownership
Privacy
4 Citations (Scopus)

Fostering reproducibility in industry-academia research Sharing can pose challenges for collaborations

Jasny, B. R., Wigginton, N., McNutt, M., Bubela, T., Buck, S., Cook-Deegan, R., Gardner, T., Hanson, B., Hustad, C., Kiermer, V., Lazer, D., Lupia, A., Manrai, A., McConnell, L., Noonan, K., Phimister, E., Simon, B., Strandburg, K., Summers, Z. & Watts, D., Aug 25 2017, In : Science. 357, 6353, p. 759-761 3 p.

Research output: Contribution to journalReview article

Foster Home Care
Industry
Research
8 Citations (Scopus)

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

Cook-Deegan, R. & McGuire, A. L., Jun 1 2017, In : Genome Research. 27, 6, p. 897-901 5 p.

Research output: Contribution to journalReview article

Bermuda
Medical Electronics
Precision Medicine
Information Dissemination
Electronic Health Records
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
2 Citations (Scopus)

Racing for academic glory and patents: Lessons from CRISPR

Rai, A. K. & Cook-Deegan, R., Nov 17 2017, In : Science. 358, 6365, p. 874-876 3 p.

Research output: Contribution to journalShort survey

CRISPR-Cas Systems
Clustered Regularly Interspaced Short Palindromic Repeats
Genetic Engineering
Patents
RNA
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
4 Citations (Scopus)

Sharing data under the 21st century cures act

Majumder, M. A., Guerrini, C. J., Bollinger, J. M., Cook-Deegan, R. & Mcguire, A. L., Jan 1 2017, In : Genetics in Medicine. 19, 12, p. 1289-1294 6 p.

Research output: Contribution to journalReview article

Information Dissemination
Access to Information
Confidentiality
National Institutes of Health (U.S.)
Research

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

4 Citations (Scopus)

Developing context-specific next-generation sequencing policy

Curnutte, M. A., Frumovitz, K. L., Bollinger, J. M., Cook-Deegan, R., McGuire, A. L. & Majumder, M. A., May 6 2016, In : Nature Biotechnology. 34, 5, p. 466-470 5 p.

Research output: Contribution to journalLetter

High-Throughput Nucleotide Sequencing
Chromosome Mapping
Genetic Testing
United States Food and Drug Administration
Public Policy
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

Erratum: Community crystal gazing (Nature Biotechnology (2016) 34 (276-283))

Acharya, A., Bingham, K., Bradner, J., Burke, W., Charo, R. A., Cherry, J., Choulika, A., Coles, T., Cook-Deegan, R., Crook, S. T., Diáz, E., Erickson, B., Giddings, L. V., Giwa, S. E., Greenwood, J. C., Gulati, V., Hall, S., Harris, J., Heywood, J., Hill, C. & 22 others, 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., Jun 9 2016, In : Nature Biotechnology. 34, 6, p. 666 1 p.

Research output: Contribution to journalComment/debate

2 Citations (Scopus)

Sequenom v. Ariosa - The death of a genetic testing patent

Cook-Deegan, R. & Chandrasekharan, S., Dec 22 2016, In : New England Journal of Medicine. 375, 25, p. 2418-2419 2 p.

Research output: Contribution to journalReview article

Supreme Court Decisions
Genetic Testing
Prenatal Diagnosis
DNA Sequence Analysis
Pregnancy
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
8 Citations (Scopus)
Databases
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
5 Citations (Scopus)

The BRCA patent controversies: An international review of patent disputes

van Zimmeren, E., Nicol, D., Gold, R., Carbone, J., Chandrasekharan, S., Baldwin, A. L. & Cook-Deegan, R., 2014, Breast Cancer Gene Research and Medical Practices: Transnational Perspectives in the Time of BRCA. Taylor and Francis, p. 151-174 24 p.

Research output: Chapter in Book/Report/Conference proceedingChapter

patent
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
10 Citations (Scopus)

AMP v. Myriad: A surgical strike on blockbuster business models

Gold, E. R., Cook-Deegan, R. & Bubela, T., Jul 3 2013, In : Science Translational Medicine. 5, 192, 192ed9.

Research output: Contribution to journalEditorial

Precision Medicine
Genetic Testing
Adenosine Monophosphate
Biotechnology
1 Citation (Scopus)

Are human genes patentable?

Cook-Deegan, R., Aug 20 2013, In : Annals of Internal Medicine. 159, 4, p. 298-299 2 p.

Research output: Contribution to journalComment/debate

Supreme Court Decisions
BRCA2 Gene
BRCA1 Gene
Genes
80 Citations (Scopus)

Commercial landscape of noninvasive prenatal testing in the United States

Agarwal, A., Sayres, L. C., Cho, M. K., Cook-Deegan, R. & Chandrasekharan, S., Jun 2013, In : Prenatal Diagnosis. 33, 6, p. 521-531 11 p.

Research output: Contribution to journalReview article

Intellectual Property
Technology Transfer
Insurance Carriers
Jurisprudence
Prenatal Diagnosis
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