• 3127 Citations
  • 30 h-Index
1978 …2023

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2019

#MeToo meets global health: A call to action

Hall-Clifford, R., Addiss, D., Brown, P., Castro, A., Clisbee, M., Cook-Deegan, R., Evans, D. P., Fuller, A., Graham, A., Grek, M., Guthrie, D., Ige, O., Kleinman, A., Larson, S., Lavery, J., McFarland, D., Ross, D., Weiss, A., Wodnik, B. & Woods, C., Jun 2019, In : Health and human rights. 21, 1, p. 133-139 7 p.

Research output: Contribution to journalArticle

1 Scopus citations

A collaboratively derived international research agenda on legislative science advice

Akerlof, K., Tyler, C., Foxen, S. E., Heath, E., Gual Soler, M., Allegra, A., Cloyd, E. T., Hird, J. A., Nelson, S. M., Nguyen, C. T., Gonnella, C. J., Berigan, L. A., Abeledo, C. R., Al-Yakoub, T. A., Andoh, H. F., dos Santos Boeira, L., van Boheemen, P., Cairney, P., Cook-Deegan, R., Costigan, G. & 41 others, Dhimal, M., Di Marco, M. H., Dube, D., Egbetokun, A., El Kharraz, J., Galindo, L. E., Ferguson, M. W. J., Franco, J., Graves, Z., Hayter, E., Hernández-Mondragón, A. C., Hobbs, A. D., Holden, K. L., IJsselmuiden, C., Jegede, A. S., Krstic, S. B., Mbonyintwali, J. M., Mengesha, S. D., Michalek, T., Nagano, H., Nentwich, M., Nouri, A., Ntale, P. D., Ogundele, O. M., Omenma, J. T., Pau, L. F., Peha, J. M., Prescott, E. M., Ramos-Vielba, I., Roberts, R., Sandifer, P. A., Saner, M. A., Sanganyado, E., Sanni, M., Santillán, O., Stine, D. D., Straf, M. L., Tangney, P., Washbourne, C. L., Winderickx, W. & Yarime, M., Dec 1 2019, In : Palgrave Communications. 5, 1, 108.

Research output: Contribution to journalArticle

Open Access

An open toolkit for tracking open science partnership implementation and impact [version 2; peer review: 2 approved]

Gold, E. R., Ali-Khan, S. E., Allen, L., Ballell, L., Barral-Netto, M., Carr, D., Chalaud, D., Chaplin, S., Clancy, M. S., Clarke, P., Cook-Deegan, R., Dinsmore, A. P., Doerr, M., Federer, L., Hill, S. A., Jacobs, N., Jean, A., Jefferson, O. A., Jones, C., Kahl, L. J. & 20 others, Kariuki, T. M., Kassel, S. N., Kiley, R., Kittrie, E. R., Kramer, B., Lee, W. H., Macdonald, E., Mangravite, L. M., Marincola, E., Mietchen, D., Molloy, J. C., Namchuk, M., Nosek, B. A., Paquet, S., Pirmez, C., Seyller, A., Skingle, M., Spadotto, S. N., Staniszewska, S. & Thelwall, M., Jan 1 2019, In : Gates Open Research. 3, 1442.

Research output: Contribution to journalArticle

Open Access
1 Scopus citations

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
1 Scopus citations

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
4 Scopus citations

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

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

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
2 Scopus citations

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
2 Scopus citations

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
3 Scopus citations

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
3 Scopus citations

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

The continuing saga of patents and non-invasive prenatal testing

Hawkins, N., Nicol, D., Chandrasekharan, S. & Cook-Deegan, R., May 2019, In : Prenatal Diagnosis. 39, 6, p. 441-447 7 p.

Research output: Contribution to journalArticle

Open Access

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
4 Scopus citations
2018

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

8 Scopus citations

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

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

Research output: Contribution to journalArticle

Open Access
21 Scopus citations

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., Dec 1 2018, In : Journal of the History of Biology. 51, 4, p. 693-805 113 p.

Research output: Contribution to journalArticle

2 Scopus citations

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

5 Scopus citations
2017

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

5 Scopus citations

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

14 Scopus citations

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

8 Scopus citations

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

2016

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

11 Scopus citations

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

18 Scopus citations

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

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

18 Scopus citations
6 Scopus citations

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

1 Scopus citations
2015

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 2015, In : Alzheimer's and Dementia. 11, 10, p. 1222-1230 9 p.

Research output: Contribution to journalArticle

19 Scopus citations

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

116 Scopus citations

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

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

2 Scopus citations

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

9 Scopus citations
2014

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

7 Scopus citations

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

54 Scopus citations
2013
18 Scopus citations

Gene patenting - The Supreme Court finally speaks

Kesselheim, A. S., Cook-Deegan, R. M., Winickoff, D. E. & Mello, M. M., Jan 1 2013, In : New England Journal of Medicine. 369, 9, p. 869-875 7 p.

Research output: Contribution to journalArticle

41 Scopus citations

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

31 Scopus citations

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 1 2013, In : PLoS biology. 11, 11, e1001699.

Research output: Contribution to journalArticle

50 Scopus citations

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

7 Scopus citations

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

66 Scopus citations
2011

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

1 Scopus citations
2010

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

79 Scopus citations

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

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

Research output: Contribution to journalArticle

39 Scopus citations

Metastasizing patent claims on BRCA1

Kepler, T. B., Crossman, C. & Cook-Deegan, R., May 1 2010, In : Genomics. 95, 5, p. 312-314 3 p.

Research output: Contribution to journalArticle

16 Scopus citations
2009

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

302 Scopus citations
2008

Genomics research: World survey of public funding

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

Research output: Contribution to journalArticle

20 Scopus citations

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 1 2008, In : Genetics in Medicine. 10, 3, p. 207-214 8 p.

Research output: Contribution to journalArticle

31 Scopus citations
2006

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 1 2006, In : Fertility and Sterility. 85, 6, p. 1623-1630 8 p.

Research output: Contribution to journalArticle

68 Scopus citations

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 1 2006, In : Journal of Medical Ethics. 32, 12, p. 724-728 5 p.

Research output: Contribution to journalArticle

27 Scopus citations