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Michele Heath, Tracy H. Porter & Geoffrey Silvera. (2022) Hospital characteristics associated with HIPAA breaches. International Journal of Healthcare Management 15:2, pages 171-180.
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Amicia Phillips, Pascal Borry & Mahsa Shabani. (2017) Research ethics review for the use of anonymized samples and data: A systematic review of normative documents. Accountability in Research 24:8, pages 483-496.
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Emily Christofides & Kieran O’Doherty. (2016) Company disclosure and consumer perceptions of the privacy implications of direct-to-consumer genetic testing. New Genetics and Society 35:2, pages 101-123.
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LaurenC. Milner & David Magnus. (2013) Can Informed Consent Go Too Far? Balancing Consent and Public Benefit in Research. The American Journal of Bioethics 13:4, pages 1-2.
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LeslieP. Francis & JohnG. Francis. (2013) Data Citizenship and Informed Consent. The American Journal of Bioethics 13:4, pages 38-39.
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MarkA. Rothstein & AbigailB. Shoben. (2013) Does Consent Bias Research?. The American Journal of Bioethics 13:4, pages 27-37.
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Susan
Brown Trinidad, StephanieM. Fullerton, JulieM. Bares, GailP. Jarvik, EricB. Larson & Wylie Burke. (2012) Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?. AJOB Primary Research 3:3, pages 3-11.
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Rosamond Rhodes, Jody Azzouni, Stefan
Bernard Baumrin, Keith Benkov, MartinJ. Blaser, Barbara Brenner, JosephW. Dauben, WilliamJ. Earle, Lily Frank, Nada Gligorov, Joseph Goldfarb, Kurt Hirschhorn, Rochelle Hirschhorn, Ian Holzman, Debbie Indyk, Ethylin
Wang Jabs, DouglasP. Lackey, DanielA. Moros, Sean Philpott, MatthewE. Rhodes, LynneD. Richardson, HenryS. Sacks, Abraham Schwab, Rhoda Sperling, Brett Trusko & Arnulf Zweig. (2011)
De Minimis Risk: A Proposal for a New Category of Research Risk. The American Journal of Bioethics 11:11, pages 1-7.
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MarkA. Rothstein. (2010) Deidentification and Its Discontents: Response to the Open Peer Commentaries. The American Journal of Bioethics 10:9, pages W1-W2.
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LeonardH. Glantz, Patricia Roche & GeorgeJ. Annas. (2010) Gift Giving to Biobanks. The American Journal of Bioethics 10:9, pages 33-34.
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MelissaM. Goldstein. (2010) Guiding Deidentification Forward. The American Journal of Bioethics 10:9, pages 27-28.
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HenryT. Greely. (2010) To the Barricades!. The American Journal of Bioethics 10:9, pages 1-2.
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NicolasP. Terry. (2010) More Than One Binary. The American Journal of Bioethics 10:9, pages 31-32.
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DanielA. Moros & Rosamond Rhodes. (2010) Privacy Overkill. The American Journal of Bioethics 10:9, pages 12-15.
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Deven McGraw. (2010) Data Identifiability and Privacy. The American Journal of Bioethics 10:9, pages 30-31.
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ShawneequaL. Callier & Harald Schmidt. (2010) Managing Patient Expectations About Deidentification. The American Journal of Bioethics 10:9, pages 21-23.
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Misha Angrist. (2010) Urge Overkill: Protecting Deidentified Human Subjects at What Price?. The American Journal of Bioethics 10:9, pages 17-18.
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Sharona Hoffman. (2010) Electronic Health Records and Research: Privacy Versus Scientific Priorities. The American Journal of Bioethics 10:9, pages 19-20.
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Robert Gellman. (2010) Why Deidentification Fails Research Subjects and Researchers. The American Journal of Bioethics 10:9, pages 28-30.
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Kyle
Bertram Brothers & Ellen
Wright Clayton. (2010) “Human Non-Subjects Research”: Privacy and Compliance. The American Journal of Bioethics 10:9, pages 15-17.
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Leslie
Pickering Francis & JohnG. Francis. (2010) Group Compromise: Perfect Cases Make Problematic Generalizations. The American Journal of Bioethics 10:9, pages 25-27.
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Joan McGregor. (2010) Racial, Ethnic, and Tribal Classifications in Biomedical Research With Biological and Group Harm. The American Journal of Bioethics 10:9, pages 23-24.
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Articles from other publishers (135)
Francis McKay, Darren Treanor & Nina Hallowell. (2023) Inalienable data: Ethical imaginaries of de-identified health data ownership. SSM - Qualitative Research in Health 4, pages 100321.
Crossref
Crossref
Laura M Tully, Kathleen E Nye, Sabrina Ereshefsky, Valerie L Tryon, Christopher Komei Hakusui, Mark Savill & Tara A Niendam. (2023) Incorporating Community Partner Perspectives on eHealth Technology Data Sharing Practices for the California Early Psychosis Intervention Network: Qualitative Focus Group Study With a User-Centered Design Approach. JMIR Human Factors 10, pages e44194.
Crossref
Crossref
David Vulcano. (2023) Key Considerations When Designing Real World Evidence Research Involving The Secondary Use of U.S.-Based Electronic Health Record Data. Journal of the Society for Clinical Data Management 3:3.
Crossref
Crossref
Gustavo H. Soares, Joanne Hedges, Sneha Sethi, Brianna Poirier & Lisa Jamieson. (2023) From biocolonialism to emancipation: considerations on ethical and culturally respectful omics research with indigenous Australians. Medicine, Health Care and Philosophy 26:3, pages 487-496.
Crossref
Crossref
Francis McKay, Bethany J. Williams, Graham Prestwich, Daljeet Bansal, Darren Treanor & Nina Hallowell. (2023) Artificial intelligence and medical research databases: ethical review by data access committees. BMC Medical Ethics 24:1.
Crossref
Crossref
James A. Rickard, Toni-Maree Rogers, David A. Westerman, Cathy Carolan & Stephen B. Fox. (2023) Identification errors in medical research: Privacy at all costs?. Contemporary Clinical Trials 130, pages 107206.
Crossref
Crossref
Jaka Potočnik, Shane Foley & Edel Thomas. (2023) Current and potential applications of artificial intelligence in medical imaging practice: A narrative review. Journal of Medical Imaging and Radiation Sciences 54:2, pages 376-385.
Crossref
Crossref
Reetam Ganguli, Rishik Lad, Alice Lin & Xiaotian Yu. (2023) Novel Generative Recurrent Neural Network Framework to Produce Accurate, Applicable, and Deidentified Synthetic Medical Data for Patients With Metastatic Cancer. JCO Clinical Cancer Informatics:7.
Crossref
Crossref
Mark A. Rothstein. (2023) Translational Bioethics and Health Privacy. Ethics & Human Research 45:3, pages 40-44.
Crossref
Crossref
Morgan Guillaudeux, Olivia Rousseau, Julien Petot, Zineb Bennis, Charles-Axel Dein, Thomas Goronflot, Nicolas Vince, Sophie Limou, Matilde Karakachoff, Matthieu Wargny & Pierre-Antoine Gourraud. (2023) Patient-centric synthetic data generation, no reason to risk re-identification in biomedical data analysis. npj Digital Medicine 6:1.
Crossref
Crossref
Mark A. Rothstein. (2023) Translational Bioethics and Health Privacy. SSRN Electronic Journal.
Crossref
Crossref
James C. O'Leary. 2023. Genomic Data Sharing. Genomic Data Sharing
157
170
.
Kim R. M. Blenman, Rodney Hull, Charles Maimela, Thulo Molefi, Richard Khanyile & Zodwa Dlamini. 2023. Society 5.0 and Next Generation Healthcare. Society 5.0 and Next Generation Healthcare
267
291
.
Paul D. Hastings, Amanda E. Guyer & Luis A. Parra. (2022) Conceptualizing the Influence of Social and Structural Determinants of Neurobiology and Mental Health: Why and How Biological Psychiatry Can Do Better at Addressing the Consequences of Inequity. Biological Psychiatry: Cognitive Neuroscience and Neuroimaging 7:12, pages 1215-1224.
Crossref
Crossref
Elizabeth E. Umberfield, Sharon L. R. Kardia, Yun Jiang, Andrea K. Thomer & Marcelline R. Harris. (2021) Regulations and Norms for Reuse of Residual Clinical Biospecimens and Health Data. Western Journal of Nursing Research 44:11, pages 1068-1081.
Crossref
Crossref
Jan Piasecki & Phaik Yeong Cheah. (2022) Ownership of individual-level health data, data sharing, and data governance. BMC Medical Ethics 23:1.
Crossref
Crossref
Anita S. Jwa & Russell A. Poldrack. (2022) The spectrum of data sharing policies in neuroimaging data repositories. Human Brain Mapping 43:8, pages 2707-2721.
Crossref
Crossref
Maryam Rostami, Jane Paik Kim, Laura Turner-Essel & Laura Weiss Roberts. (2021) Maternal Perceptions of Safeguards for Research Involving Children. Journal of Child and Family Studies 31:5, pages 1220-1231.
Crossref
Crossref
MICHAEL D. ROZIER, KAVITA K. PATEL & DORI A. CROSS. (2021) Electronic Health Records as Biased Tools or Tools Against Bias: A Conceptual Model. The Milbank Quarterly 100:1, pages 134-150.
Crossref
Crossref
Sara Jafarbeiki, Amin Sakzad, Shabnam Kasra Kermanshahi, Raj Gaire, Ron Steinfeld, Shangqi Lai, Gad Abraham & Chandra Thapa. (2022) PrivGenDB: Efficient and privacy-preserving query executions over encrypted SNP-Phenotype database. Informatics in Medicine Unlocked 31, pages 100988.
Crossref
Crossref
Jimmy Le. 2022. Principles and Practice of Clinical Trials. Principles and Practice of Clinical Trials
2115
2136
.
Paul Quinn. (2021) Research under the GDPR – a level playing field for public and private sector research?. Life Sciences, Society and Policy 17:1.
Crossref
Crossref
Damian Eke, Ida E.J. Aasebø, Simisola Akintoye, William Knight, Alexandros Karakasidis, Ezequiel Mikulan, Paschal Ochang, George Ogoh, Robert Oostenveld, Andrea Pigorini, Bernd Carsten Stahl, Tonya White & Lyuba Zehl. (2021) Pseudonymisation of neuroimages and data protection: Increasing access to data while retaining scientific utility. Neuroimage: Reports 1:4, pages 100053.
Crossref
Crossref
Susan Estabrooks Hahn, Adam Buchanan, Chantelle Wolpert & Susan H. Blanton. 2021. Genetic Analysis of Complex Diseases. Genetic Analysis of Complex Diseases
79
104
.
Georges Assaf, Sarah Jawhar, Kamal Wahab, Rita El Hachem, Tanjeev Kaur, Maria Tanielian, Lea Feghali, Adina Zeki Al Hazzouri & Martine Elbejjani. (2021) Awareness and attitudes towards advance care planning in primary care: role of demographic, socioeconomic and religiosity factors in a cross-sectional Lebanese study. BMJ Open 11:10, pages e052170.
Crossref
Crossref
Ariadne A Nichol, Eran Bendavid, Farirai Mutenherwa, Chirag Patel & Mildred K Cho. (2021) Diverse experts’ perspectives on ethical issues of using machine learning to predict HIV/AIDS risk in sub-Saharan Africa: a modified Delphi study. BMJ Open 11:7, pages e052287.
Crossref
Crossref
Qiao Zhang, Chunsheng Xin & Hongyi Wu. (2021) Privacy-Preserving Deep Learning Based on Multiparty Secure Computation: A Survey. IEEE Internet of Things Journal 8:13, pages 10412-10429.
Crossref
Crossref
Jan Piasecki & Vilius Dranseika. (2021) Balancing professional obligations and risks to providers in learning healthcare systems. Journal of Medical Ethics 47:6, pages 413-416.
Crossref
Crossref
Yingxiang Huang, Xiaoqian Jiang, Rodney A. Gabriel & Lucila Ohno-Machado. (2021) Calibrating predictive model estimates in a distributed network of patient data. Journal of Biomedical Informatics 117, pages 103758.
Crossref
Crossref
Matthew P. Abrams, Felix E. Torres & Susan J. Little. (2020) Biometric Registration to an HIV Research Study may Deter Participation. AIDS and Behavior 25:5, pages 1552-1559.
Crossref
Crossref
Dhamanpreet Kaur, Matthew Sobiesk, Shubham Patil, Jin Liu, Puran Bhagat, Amar Gupta & Natasha Markuzon. (2021) Application of Bayesian networks to generate synthetic health data. Journal of the American Medical Informatics Association 28:4, pages 801-811.
Crossref
Crossref
Olalekan Akanbi, Adeyinka Charles Adejumo, Mohanad Soliman & Praneeth Kudaravalli. (2020) Chronic Pancreatitis Patients Who Leave Against Medical Advice: Prevalence, Trend, and Predictors. Digestive Diseases and Sciences 66:2, pages 424-433.
Crossref
Crossref
Mark A. Rothstein. (2021) Informed Consent for Secondary Research under the New NIH Data Sharing Policy. Journal of Law, Medicine & Ethics 49:3, pages 489-494.
Crossref
Crossref
Jimmy Le. 2020. Principles and Practice of Clinical Trials. Principles and Practice of Clinical Trials
1
22
.
Siao Sun, Fusheng Wang, Sina Rashidian, Tahsin Kurc, Kayley Abell-Hart, Janos Hajagos, Wei Zhu, Mary Saltz & Joel Saltz. 2021. Heterogeneous Data Management, Polystores, and Analytics for Healthcare. Heterogeneous Data Management, Polystores, and Analytics for Healthcare
153
165
.
John G. Francis & Leslie P. FrancisJohn G. Francis & Leslie P. Francis. 2021. Sustaining Surveillance: The Importance of Information for Public Health. Sustaining Surveillance: The Importance of Information for Public Health
159
187
.
Phaik Yeong Cheah & Jan Piasecki. (2020) Data Access Committees. BMC Medical Ethics 21:1.
Crossref
Crossref
Avigail Stekel, Moshe Hanukoglu, Aviv Rovshitz, Nissan Goldberg & Amos Azaria. (2020) Learning to Conceal: A Method for Preserving Privacy and Avoiding Prejudice in Images. Learning to Conceal: A Method for Preserving Privacy and Avoiding Prejudice in Images.
William McGeveran & Caroline Schmitz. (2021) General-Purpose Privacy Regulation and Translational Genomics. Journal of Law, Medicine & Ethics 48:1, pages 142-150.
Crossref
Crossref
Nabile M. Safdar, John D. Banja & Carolyn C. Meltzer. (2020) Ethical considerations in artificial intelligence. European Journal of Radiology 122, pages 108768.
Crossref
Crossref
Joseph Millum, Megan Campbell, Florencia Luna, Arianne Malekzadeh & Quarraisha Abdool Karim. (2019) Ethical challenges in global health-related stigma research. BMC Medicine 17:1.
Crossref
Crossref
Francis Kazungu Kombe, Vicki Marsh, Sassy Molyneux, Dorcas Mwikali Kamuya, Dorothy Ikamba & Samson Muchina Kinyanjui. (2019) Enhancing fieldworkers’ performance management support in health research: an exploratory study on the views of field managers and fieldworkers from major research centres in Africa. BMJ Open 9:12, pages e028453.
Crossref
Crossref
Adeyinka Charles Adejumo, Olalekan Akanbi & Lydie Pani. (2019) Protein Energy Malnutrition Is Associated with Worse Outcomes in Sepsis—A Nationwide Analysis. Journal of the Academy of Nutrition and Dietetics 119:12, pages 2069-2084.
Crossref
Crossref
Victoria Nembaware, Katherine Johnston, Alpha A. Diallo, Maritha J. Kotze, Alice Matimba, Keymanthri Moodley, Godfrey B. Tangwa, Rispah Torrorey-Sawe & Nicki Tiffin. (2019) A framework for tiered informed consent for health genomic research in Africa. Nature Genetics 51:11, pages 1566-1571.
Crossref
Crossref
Elizabeth R. Eisenhauer, Alan R. Tait, Lisa Kane Low & Cynthia M. Arslanian-Engoren. (2019) Mothers' Decisions About Donating Newborns' Blood Spots for Research. Journal of Perinatal & Neonatal Nursing 33:4, pages 361-371.
Crossref
Crossref
Adeyinka Charles Adejumo, Kelechi Lauretta AdejumoLydie N. Pani. (2019) Risk and Outcomes of Clostridium difficile Infection With Chronic Pancreatitis. Pancreas 48:8, pages 1041-1049.
Crossref
Crossref
Jihoon Kim, Hyeoneui Kim, Elizabeth Bell, Tyler Bath, Paulina Paul, Anh Pham, Xiaoqian Jiang, Kai Zheng & Lucila Ohno-Machado. (2019) Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research. JAMA Network Open 2:8, pages e199550.
Crossref
Crossref
Luc Rocher, Julien M. Hendrickx & Yves-Alexandre de Montjoye. (2019) Estimating the success of re-identifications in incomplete datasets using generative models. Nature Communications 10:1.
Crossref
Crossref
Jenifer Sunrise Winter & Elizabeth Davidson. (2019) Governance of artificial intelligence and personal health information. Digital Policy, Regulation and Governance 21:3, pages 280-290.
Crossref
Crossref
Malissa Kay Shaw, Mojca Babovič & Lynn Valerie Monrouxe. (2019) Healthcare professionals’, students’, patients’ and donors’ perceptions of stem cell research and therapy: a systematic review protocol. BMJ Open 9:2, pages e025801.
Crossref
Crossref
Nicki Tiffin, Asha George & Amnesty Elizabeth LeFevre. (2019) How to use relevant data for maximal benefit with minimal risk: digital health data governance to protect vulnerable populations in low-income and middle-income countries. BMJ Global Health 4:2, pages e001395.
Crossref
Crossref
Liang Hong, Mengqi Luo, Ruixue Wang, Peixin Lu, Wei Lu & Long Lu. (2019) Big Data in Health Care: Applications and Challenges. Data and Information Management 0:0.
Crossref
Crossref
Matthew M Kavanagh, Stefan D Baral, Maureen Milanga & Jeremy Sugarman. (2019) Biometrics and public health surveillance in criminalised and key populations: policy, ethics, and human rights considerations. The Lancet HIV 6:1, pages e51-e59.
Crossref
Crossref
Janet Mifsud & Cristina Gavrilovici. 2018. Ethics and Integrity in Health and Life Sciences Research. Ethics and Integrity in Health and Life Sciences Research
63
83
.
Liang Hong, Mengqi Luo, Ruixue Wang, Peixin Lu, Wei Lu & Long Lu. (2018) Big Data in Health Care: Applications and Challenges. Data and Information Management 2:3, pages 175-197.
Crossref
Crossref
Nathaniel Paul Sharadin. (2018) Patient preference predictors and the problem of naked statistical evidence. Journal of Medical Ethics 44:12, pages 857-862.
Crossref
Crossref
Feng-Jen Tsai & Valérie Junod. (2018) Medical research using governments’ health claims databases: with or without patients’ consent?. Journal of Public Health 40:4, pages 871-877.
Crossref
Crossref
Abhishek Jain & Khushboo Tripathi. (2018) Biometric Signature Authentication Scheme with RNN (BIOSIG_RNN) Machine Learning Approach. Biometric Signature Authentication Scheme with RNN (BIOSIG_RNN) Machine Learning Approach.
Satchit Balsari, Alexander Fortenko, Joaquín A Blaya, Adrian Gropper, Malavika Jayaram, Rahul Matthan, Ram Sahasranam, Mark Shankar, Suptendra N Sarbadhikari, Barbara E Bierer, Kenneth D Mandl, Sanjay Mehendale & Tarun Khanna. (2018) Reimagining Health Data Exchange: An Application Programming Interface–Enabled Roadmap for India. Journal of Medical Internet Research 20:7, pages e10725.
Crossref
Crossref
Stephen J. MooneyVikas Pejaver. (2018) Big Data in Public Health: Terminology, Machine Learning, and Privacy. Annual Review of Public Health 39:1, pages 95-112.
Crossref
Crossref
Pascal Borry, Heidi Beate Bentzen, Isabelle Budin-Ljøsne, Martina C. Cornel, Heidi Carmen Howard, Oliver Feeney, Leigh Jackson, Deborah Mascalzoni, Álvaro Mendes, Borut Peterlin, Brigida Riso, Mahsa Shabani, Heather Skirton, Sigrid Sterckx, Danya Vears, Matthias Wjst & Heike Felzmann. (2017) The challenges of the expanded availability of genomic information: an agenda-setting paper. Journal of Community Genetics 9:2, pages 103-116.
Crossref
Crossref
Laura E. Schleelein, Kathleen A. Harris & Elizabeth M. Elliott. (2018) Developing Multicenter Registries to Advance Quality Science. Anesthesiology Clinics 36:1, pages 75-86.
Crossref
Crossref
Kathleen Liddell & Jeffrey M Skopek. 2005. Encyclopedia of Life Sciences. Encyclopedia of Life Sciences
1
10
.
Jessica Stockdale, Jackie Cassell & Elizabeth Ford. (2018) “Giving something back”: A systematic review and ethical enquiry of public opinions on the use of patient data for research in the United Kingdom and the Republic of Ireland. Wellcome Open Research 3, pages 6.
Crossref
Crossref
Zoltán Alexin. (2017) Hungary’s unorthodox approach to personal privacy. Health and Technology 7:4, pages 423-440.
Crossref
Crossref
Mahsa ShabaniEdward S. DoveMadeleine MurtaghBartha Maria KnoppersPascal Borry. (2017) Oversight of Genomic Data Sharing: What Roles for Ethics and Data Access Committees?. Biopreservation and Biobanking 15:5, pages 469-474.
Crossref
Crossref
Karola V Kreitmair, Mildred K Cho & David C Magnus. (2017) Consent and engagement, security, and authentic living using wearable and mobile health technology. Nature Biotechnology 35:7, pages 617-620.
Crossref
Crossref
Leslie P. Francis & John G. Francis. 2017. Studies in Law, Politics, and Society. Studies in Law, Politics, and Society
141
164
.
Garrath Williams & Iris Pigeot. (2017) Consent and confidentiality in the light of recent demands for data sharing. Biometrical Journal 59:2, pages 240-250.
Crossref
Crossref
Kristina Hug & Mats Johansson. (2017) The ethics of withdrawal: the case of follow-up from first-in-human clinical trials. Regenerative Medicine 12:1, pages 25-36.
Crossref
Crossref
. (2017) Presidential Commission for the Study of Bioethical Issues (USA) Ethics and Ebola. Jahrbuch für Wissenschaft und Ethik 21:1.
Crossref
Crossref
Melissa M. Goldstein. (2021) Revising the Common Rule: Ethics, Scientific Advancement, and Public Policy in Conflict. Journal of Law, Medicine & Ethics 45:3, pages 452-459.
Crossref
Crossref
Kieran C. O’Doherty, Emily Christofides, Jeffery Yen, Heidi Beate Bentzen, Wylie Burke, Nina Hallowell, Barbara A. Koenig & Donald J. Willison. (2016) If you build it, they will come: unintended future uses of organised health data collections. BMC Medical Ethics 17:1.
Crossref
Crossref
Mahsa Shabani, Adrian Thorogood & Pascal Borry. (2016) Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts. European Journal of Human Genetics 24:12, pages 1671-1675.
Crossref
Crossref
Mats G Hansson, Hanns Lochmüller, Olaf Riess, Franz Schaefer, Michael Orth, Yaffa Rubinstein, Caron Molster, Hugh Dawkins, Domenica Taruscio, Manuel Posada & Simon Woods. (2016) The risk of re-identification versus the need to identify individuals in rare disease research. European Journal of Human Genetics 24:11, pages 1553-1558.
Crossref
Crossref
Joan A. CaseyBrian S. Schwartz, Walter F. StewartNancy E. Adler. (2016) Using Electronic Health Records for Population Health Research: A Review of Methods and Applications. Annual Review of Public Health 37:1, pages 61-81.
Crossref
Crossref
Michael Madary & Thomas K. Metzinger. (2016) Recommendations for Good Scientific Practice and the Consumers of VR-Technology. Frontiers in Robotics and AI 3.
Crossref
Crossref
Mark A. Rothstein. (2021) The End of the HIPAA Privacy Rule?. Journal of Law, Medicine & Ethics 44:2, pages 352-358.
Crossref
Crossref
Jules J. Berman. 2016. Data Simplification. Data Simplification
189
231
.
M. Shabani, B.M. Knoppers & P. Borry. 2016. Medical and Health Genomics. Medical and Health Genomics
29
35
.
Bryce Goodman. 2016. The Ethics of Biomedical Big Data. The Ethics of Biomedical Big Data
139
167
.
Benjamin E. Berkman, Zachary E. Shapiro, Lisa Eckstein & Elizabeth R. Pike. 2016. Ethical Reasoning in Big Data. Ethical Reasoning in Big Data
53
69
.
Ming Hsu & Winston Chiong. 2016. Handbook of Health Decision Science. Handbook of Health Decision Science
39
52
.
Hyo Joung Choi, Min Joung Lee, Chang-Min Choi, JaeHo Lee, Soo-Yong Shin, Yungman Lyu, Yu Rang Park & Soyoung Yoo. (2015) Establishing the role of honest broker: bridging the gap between protecting personal health data and clinical research efficiency. PeerJ 3, pages e1506.
Crossref
Crossref
Elliott M. Antman, Emelia J. Benjamin, Robert A. Harrington, Steven R. Houser, Eric D. Peterson, Mary Ann Bauman, Nancy Brown, Vincent Bufalino, Robert M. Califf, Mark A. Creager, Alan Daugherty, David L. Demets, Bernard P. Dennis, Shahram Ebadollahi, Mariell Jessup, Michael S. Lauer, Bernard Lo, Calum A. MacRae, Michael V. McConnell, Alexa T. McCray, Michelle M. Mello, Eric Mueller, Jane W. Newburger, Sally Okun, Milton Packer, Anthony Philippakis, Peipei Ping, Prad Prasoon, Véronique L. Roger, Steve Singer, Robert Temple, Melanie B. Turner, Kevin Vigilante, John Warner & Patrick Wayte. (2015) Acquisition, Analysis, and Sharing of Data in 2015 and Beyond: A Survey of the Landscape. Journal of the American Heart Association 4:11.
Crossref
Crossref
Christine M. O'Keefe & Donald B. Rubin. (2015) Individual privacy versus public good: protecting confidentiality in health research. Statistics in Medicine 34:23, pages 3081-3103.
Crossref
Crossref
Deven McGraw, Sarah M Greene, Caroline S Miner, Karen L Staman, Mary Jane Welch & Alan Rubel. (2015) Privacy and confidentiality in pragmatic clinical trials. Clinical Trials 12:5, pages 520-529.
Crossref
Crossref
Raffaella Burioni, Pierluigi Contucci, Micaela Fedele, Cecilia Vernia & Alessandro Vezzani. (2015) Enhancing participation to health screening campaigns by group interactions. Scientific Reports 5:1.
Crossref
Crossref
Mi Jung Rho, Kwang Soo Jang, Kyung-Yong Chung & In Young Choi. (2013) Comparison of knowledge, attitudes, and trust for the use of personal health information in clinical research. Multimedia Tools and Applications 74:7, pages 2391-2404.
Crossref
Crossref
Zhiyu Wan, Yevgeniy Vorobeychik, Weiyi Xia, Ellen Wright Clayton, Murat Kantarcioglu, Ranjit Ganta, Raymond Heatherly & Bradley A. Malin. (2015) A Game Theoretic Framework for Analyzing Re-Identification Risk. PLOS ONE 10:3, pages e0120592.
Crossref
Crossref
S. Joshua Swamidass, Matthew Matlock & Leon Rozenblit. (2015) Securely Measuring the Overlap between Private Datasets with Cryptosets. PLOS ONE 10:2, pages e0117898.
Crossref
Crossref
Edward S. Dove. (2021) Biobanks, Data Sharing, and the Drive for a Global Privacy Governance Framework. Journal of Law, Medicine & Ethics 43:4, pages 675-689.
Crossref
Crossref
Mark A. Rothstein. (2021) Ethical Issues in Big Data Health Research. Journal of Law, Medicine & Ethics 43:2, pages 425-429.
Crossref
Crossref
John Petrila. 2015. Actionable Intelligence. Actionable Intelligence
39
75
.
Emma E. Kowal. 2015. International Encyclopedia of the Social & Behavioral Sciences. International Encyclopedia of the Social & Behavioral Sciences
962
968
.
Kimberlyn M. McGrail, Kaitlyn Gutteridge & Nancy L. Meagher. 2015. Medical Data Privacy Handbook. Medical Data Privacy Handbook
737
764
.
Felicity Callard, Matthew Broadbent, Mike Denis, Matthew Hotopf, Murat Soncul, Til Wykes, Simon Lovestone & Robert Stewart. (2014) Developing a new model for patient recruitment in mental health services: a cohort study using Electronic Health Records. BMJ Open 4:12, pages e005654.
Crossref
Crossref
Magnus Jändel. (2014) Decision support for releasing anonymised data. Computers & Security 46, pages 48-61.
Crossref
Crossref
Tevah Platt, Jodyn Platt, Daniel B. Thiel, Nicole Fisher & Sharon L. R. Kardia. (2014) ‘Cool! and creepy’: engaging with college student stakeholders in Michigan’s biobank. Journal of Community Genetics 5:4, pages 349-362.
Crossref
Crossref
Phillip S. Blanchette, Anna Spreafico, Fiona A. Miller, Kelvin Chan, Jessica Bytautas, Steve Kang, Philippe L. Bedard, Andrea Eisen, Larissa Potanina, Jack Holland, Suzanne Kamel-Reid, John D. McPherson, Albiruni R. Razak & Lillian L. Siu. (2014) Genomic testing in cancer: Patient knowledge, attitudes, and expectations. Cancer 120:19, pages 3066-3073.
Crossref
Crossref
Gail Horlick & Jean O'Connor. 2014. Concepts and Methods in Infectious Disease Surveillance. Concepts and Methods in Infectious Disease Surveillance
7
13
.
Nikolas Rose. (2014) The Human Brain Project: Social and Ethical Challenges. Neuron 82:6, pages 1212-1215.
Crossref
Crossref
Debra Mathews & Leila Jamal. (2014) Revisiting Respect for Persons in Genomic Research. Genes 5:1, pages 1-12.
Crossref
Crossref
Shawneequa L Callier, Ian Toma, Timothy McCaffrey, Arthur F Harralson & Travis J O’Brien. (2014) Engaging the next generation of healthcare professionals in genomics: planning for the future. Personalized Medicine 11:1, pages 89-98.
Crossref
Crossref
Gail E. HendersonTeresa P. EdwardsR. Jean CadiganArlene M. DavisCatherine ZimmerIan ConlonBryan J. Weiner. (2013) Stewardship Practices of U.S. Biobanks. Science Translational Medicine 5:215.
Crossref
Crossref
Xiaogang Chen, Jing Ma, Jiafei Jin & Patricia Fosh. (2013) Information privacy, gender differences, and intrinsic motivation in the workplace. International Journal of Information Management 33:6, pages 917-926.
Crossref
Crossref
Scott E. Coull & Erin Kenneally. (2013) Toward a comprehensive disclosure control framework for shared data. Toward a comprehensive disclosure control framework for shared data.
Joanna Stjernschantz Forsberg, Mats G. Hansson & Kathinka Evers. (2013) International guidelines on biobank research leave researchers in ambiguity: why is this so?. European Journal of Epidemiology 28:6, pages 449-451.
Crossref
Crossref
Khaled Emam. 2013. Guide to the De-Identification of Personal Health Information. Guide to the De-Identification of Personal Health Information
159
168
.
Thomas W. LeBlancLawrence N. ShulmanPeter P. YuBradford R. HirschAmy P. Abernethy. (2013) The Ethics of Health Information Technology in Oncology: Emerging Isssues from Both Local and Global Perspectives. American Society of Clinical Oncology Educational Book:33, pages 136-142.
Crossref
Crossref
Y. Joly & B.M. Knoppers. 2013. Brenner's Encyclopedia of Genetics. Brenner's Encyclopedia of Genetics
528
530
.
Mark A. Rothstein. 2013. Environmental Epigenomics in Health and Disease. Environmental Epigenomics in Health and Disease
297
308
.
Effy VayenaAnna MastroianniJeffrey Kahn. (2012) Ethical Issues in Health Research With Novel Online Sources. American Journal of Public Health 102:12, pages 2225-2230.
Crossref
Crossref
Barbara J. Evans. (2021) The Ethics of Postmarketing Observational Studies of Drug Safety Under Section 505(o)(3) of the Food, Drug, and Cosmetic Act. American Journal of Law & Medicine 38:4, pages 577-606.
Crossref
Crossref
Mats G. Hansson, Bengt Simonsson, Nils Feltelius, Joanna Stjernschantz Forsberg & Joerg Hasford. (2012) Medical registries represent vital patient interests and should not be dismantled by stricter regulation. Cancer Epidemiology 36:6, pages 575-578.
Crossref
Crossref
Steven K. Hoge & Paul S. Appelbaum. (2012) Ethics and neuropsychiatric genetics: a review of major issues. The International Journal of Neuropsychopharmacology 15:10, pages 1547-1557.
Crossref
Crossref
Mark A. Rothstein. 2012. Genetic Research on Addiction. Genetic Research on Addiction
84
96
.
Mats Hansson. (2012) Where should we draw the line between quality of care and other ethical concerns related to medical registries and biobanks?. Theoretical Medicine and Bioethics 33:4, pages 313-323.
Crossref
Crossref
Khaled El Emam, Saeed Samet, Jun Hu, Liam Peyton, Craig Earle, Gayatri C. Jayaraman, Tom Wong, Murat Kantarcioglu, Fida Dankar & Aleksander Essex. (2012) A Protocol for the Secure Linking of Registries for HPV Surveillance. PLoS ONE 7:7, pages e39915.
Crossref
Crossref
Varun Bhagwan, Tyrone Grandison & Carlos Maltzahn. (2012) Recommendation-Based De-identification: A Practical Systems Approach towards De-identification of Unstructured Text in Healthcare. Recommendation-Based De-identification: A Practical Systems Approach towards De-identification of Unstructured Text in Healthcare.
Peter B. Jensen, Lars J. Jensen & Søren Brunak. (2012) Mining electronic health records: towards better research applications and clinical care. Nature Reviews Genetics 13:6, pages 395-405.
Crossref
Crossref
Khaled El Emam, Elizabeth Jonker, Luk Arbuckle & Bradley Malin. (2011) A Systematic Review of Re-Identification Attacks on Health Data. PLoS ONE 6:12, pages e28071.
Crossref
Crossref
Stephanie M Fullerton & Sandra S-J Lee. (2011) Secondary uses and the governance of de-identified data: Lessons from the human genome diversity panel. BMC Medical Ethics 12:1.
Crossref
Crossref
Sergio I. Prada, Claudia González-Martínez, Joshua Borton, Johannes Fernandes-Huessy, Craig Holden, Elizabeth Hair & and Tim Mulcahy. (2011) Avoiding Disclosure of Individually Identifiable Health Information. SAGE Open 1:3, pages 215824401143127.
Crossref
Crossref
Kristien Hens, Emmanuelle Lévesque & Kris Dierickx. (2011) Children and biobanks: a review of the ethical and legal discussion. Human Genetics 130:3, pages 403-413.
Crossref
Crossref
S. B. TrinidadS. M. FullertonE. J. LudmanG. P. JarvikE. B. LarsonW. Burke. (2011) Research Practice and Participant Preferences: The Growing Gulf. Science 331:6015, pages 287-288.
Crossref
Crossref
Sharona Hoffman & Andy Podgurski. (2021) Improving Health Care Outcomes through Personalized Comparisons of Treatment Effectiveness Based on Electronic Health Records. Journal of Law, Medicine & Ethics 39:3, pages 425-436.
Crossref
Crossref
Viktor Shestak & Alyona Tsyplakova. (2020) Legal Issues Regarding Protection of Genetic Information. SSRN Electronic Journal.
Crossref
Crossref
Leslie P. Francis & John G. Francis. (2017) Data Re-Use and the Problem of Group Identity. SSRN Electronic Journal.
Crossref
Crossref
Kathleen Liddell & Jeffrey M. Skopek. (2017) Informed Consent for Research Using Biospecimens, Genetic Information and Other Personal Data. SSRN Electronic Journal.
Crossref
Crossref
Presidential Commission for the Study of Bioethical Issues. (2015) Ethics and Ebola: Public Health Planning and Response. SSRN Electronic Journal.
Crossref
Crossref
Aliza Y. Glasner, Erin E. Wilhelm, Lawrence O. Gostin & Ira Shoulson. (2014) Facilitating Medical Product Development Through Voluntary Data Sharing: A Look at the Legal Issues. SSRN Electronic Journal.
Crossref
Crossref
David Dittrich, Erin Kenneally & Michael Bailey. (2013) Applying Ethical Principles to Information and Communication Technology Research: A Companion to the Menlo Report. SSRN Electronic Journal.
Crossref
Crossref
Scott E. Coull & Erin Kenneally. (2013) Toward a Comprehensive Disclosure Control Framework for Shared Data. SSRN Electronic Journal.
Crossref
Crossref
Scott E. Coull & Erin E. Kenneally. (2012) A Qualitative Risk Assessment Framework for Sharing Computer Network Data. SSRN Electronic Journal.
Crossref
Crossref