If you build it, they will come: unintended future uses of organised health data collections
出版年份 2016 全文链接
标题
If you build it, they will come: unintended future uses of organised health data collections
作者
关键词
Health data, Privacy, Secondary uses, Discrimination, Health research, Biobanks, Data sharing, DNA
出版物
BMC Medical Ethics
Volume 17, Issue 1, Pages -
出版商
Springer Nature
发表日期
2016-09-06
DOI
10.1186/s12910-016-0137-x
参考文献
相关参考文献
注意:仅列出部分参考文献,下载原文获取全部文献信息。- Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
- (2016) Isabelle Budin-Ljøsne et al. BIOPRESERVATION AND BIOBANKING
- Company disclosure and consumer perceptions of the privacy implications of direct-to-consumer genetic testing
- (2016) Emily Christofides et al. NEW GENETICS AND SOCIETY
- Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
- (2016) Isabelle Budin-Ljøsne et al. Biopreservation and Biobanking
- Technical and Policy Approaches to Balancing Patient Privacy and Data Sharing in Clinical and Translational Research
- (2016) Bradley Malin et al. JOURNAL OF INVESTIGATIVE MEDICINE
- Mobile Health Apps to Facilitate Self-Care: A Qualitative Study of User Experiences
- (2016) Kevin Anderson et al. PLoS One
- Unaddressed privacy risks in accredited health and wellness apps: a cross-sectional systematic assessment
- (2015) Kit Huckvale et al. BMC Medicine
- Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research
- (2015) Anna Middleton et al. EUROPEAN JOURNAL OF HUMAN GENETICS
- Linking Personal Health Data to Genomic Research
- (2015) Andrew M. Li et al. Genetic Testing and Molecular Biomarkers
- How State And Federal Policies As Well As Advances In Genome Science Contribute To The High Cost Of Cancer Drugs
- (2015) Scott D. Ramsey HEALTH AFFAIRS
- The Precision Medicine Initiative
- (2015) Euan A. Ashley JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION
- Mobile data: Made to measure
- (2015) Neil Savage NATURE
- Return of genetic testing results in the era of whole-genome sequencing
- (2015) Bartha Maria Knoppers et al. NATURE REVIEWS GENETICS
- A New Initiative on Precision Medicine
- (2015) Francis S. Collins et al. NEW ENGLAND JOURNAL OF MEDICINE
- Liberating the data from clinical trials
- (2015) David Henry et al. BMJ-British Medical Journal
- Liberating the data from clinical trials
- (2015) David Henry et al. BMJ-British Medical Journal
- “It’s my blood”: ethical complexities in the use, storage and export of biological samples: perspectives from South African research participants
- (2014) Keymanthri Moodley et al. BMC Medical Ethics
- Biobanking 3.0: Evidence based and customer focused biobanking
- (2014) Daniel Simeon-Dubach et al. CLINICAL BIOCHEMISTRY
- Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature
- (2014) Ellen Otten et al. GENETICS IN MEDICINE
- Have We Asked Too Much of Consent?
- (2014) Barbara A. Koenig HASTINGS CENTER REPORT
- The Legal And Ethical Concerns That Arise From Using Complex Predictive Analytics In Health Care
- (2014) I. Glenn Cohen et al. HEALTH AFFAIRS
- Ethical Considerations in Biobanks: How a Public Health Ethics Perspective Sheds New Light on Old Controversies
- (2014) Alice Hawkins Virani et al. Journal of Genetic Counseling
- FDA Regulation of Mobile Health Technologies
- (2014) Nathan G. Cortez et al. NEW ENGLAND JOURNAL OF MEDICINE
- Opinion: Learning as we go: Lessons from the publication of Facebook's social-computing research
- (2014) J. P. Kahn et al. PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES OF THE UNITED STATES OF AMERICA
- Changes on the horizon for consumer genomics in the EU
- (2014) L. Kalokairinou et al. SCIENCE
- A Mechanism for Controlled Access to GWAS Data: Experience of the GAIN Data Access Committee
- (2013) Erin M. Ramos et al. AMERICAN JOURNAL OF HUMAN GENETICS
- Financial Incentives for Healthy Behavior
- (2013) Karsten Lunze et al. AMERICAN JOURNAL OF PREVENTIVE MEDICINE
- Mandated data archiving greatly improves access to research data
- (2013) Timothy H. Vines et al. FASEB JOURNAL
- Free the Data: The End of Genetic Data as Trade Secrets
- (2013) Stephanie Nguyen et al. Genetic Testing and Molecular Biomarkers
- The Inevitable Application of Big Data to Health Care
- (2013) Travis B. Murdoch et al. JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION
- Mobile phone health apps for diabetes management: Current evidence and future developments
- (2013) S. Goyal et al. QJM-AN INTERNATIONAL JOURNAL OF MEDICINE
- Identifying Personal Genomes by Surname Inference
- (2013) M. Gymrek et al. SCIENCE
- A common type system for clinical natural language processing
- (2013) Stephen T Wu et al. Journal of Biomedical Semantics
- Biobank participation and returning research results: Perspectives from a deliberative engagement in South Side Chicago
- (2012) Amy A. Lemke et al. AMERICAN JOURNAL OF MEDICAL GENETICS PART A
- Sharing Clinical Data Electronically
- (2012) Ashish K. Jha JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION
- Strategies for De-identification and Anonymization of Electronic Health Record Data for Use in Multicenter Research Studies
- (2012) Clete A. Kushida et al. MEDICAL CARE
- Biobanks, consent and claims of consensus
- (2012) Zubin Master et al. NATURE METHODS
- From patients to partners: participant-centric initiatives in biomedical research
- (2012) Jane Kaye et al. NATURE REVIEWS GENETICS
- Public Attitudes Regarding the Use of Residual Newborn Screening Specimens for Research
- (2012) J. R. Botkin et al. PEDIATRICS
- The Public Interest, Public Goods, and Third-Party Access to UK Biobank
- (2012) B. Capps Public Health Ethics
- Familial Identification: Population Structure and Relationship Distinguishability
- (2012) Rori V. Rohlfs et al. PLoS Genetics
- The Tension Between Data Sharing and the Protection of Privacy in Genomics Research
- (2011) Jane Kaye Annual Review of Genomics and Human Genetics
- Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience
- (2011) A. L. McGuire et al. GENOME RESEARCH
- Realizing the promise of population biobanks: a new model for translation
- (2011) Madeleine J. Murtagh et al. HUMAN GENETICS
- A Systematic Review of the Empirical Literature Evaluating IRBs: What We Know and What We Still Need to Learn
- (2011) Lura Abbott et al. Journal of Empirical Research on Human Research Ethics
- The Assassination of the Swedish Minister for Foreign Affairs*
- (2011) Edvard Unsgaard et al. JOURNAL OF FORENSIC SCIENCES
- From consent to institutions: Designing adaptive governance for genomic biobanks
- (2011) Kieran C. O’Doherty et al. SOCIAL SCIENCE & MEDICINE
- Is Deidentification Sufficient to Protect Health Privacy in Research?
- (2010) Mark A. Rothstein AMERICAN JOURNAL OF BIOETHICS
- Genomic research and wide data sharing: Views of prospective participants
- (2010) Susan Brown Trinidad et al. GENETICS IN MEDICINE
- Genetic discrimination in private insurance: global perspectives
- (2010) Yann Joly et al. NEW GENETICS AND SOCIETY
- Research Ethics in the Era of Personalized Medicine: Updating Science’s Contract with Society
- (2010) Eric M. Meslin et al. Public Health Genomics
- Emergency preparedness for newborn screening and genetic services
- (2009) Kenneth A Pass et al. GENETICS IN MEDICINE
- Expectations, validity, and reality in pharmacogenetics
- (2009) Nita A. Limdi et al. JOURNAL OF CLINICAL EPIDEMIOLOGY
- Evolutionary concepts in biobanking - the BC BioLibrary
- (2009) Peter H Watson et al. Journal of Translational Medicine
- Carrots, Sticks, and Health Care Reform — Problems with Wellness Incentives
- (2009) Harald Schmidt et al. NEW ENGLAND JOURNAL OF MEDICINE
- Can genomics tell me who I am? Essentialistic rhetoric in direct-to-consumer DNA testing
- (2009) A. Nordgren et al. NEW GENETICS AND SOCIETY
- Predicting Social Security numbers from public data
- (2009) A. Acquisti et al. PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES OF THE UNITED STATES OF AMERICA
- Congress Passes Bill to Ban Discrimination Based on Individuals’ Genetic Makeup
- (2008) Tracy Hampton JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION
- European Practices of Genetic Information and Insurance
- (2008) Ine Van Hoyweghen et al. JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION
- Wellness Programs and Lifestyle Discrimination — The Legal Limits
- (2008) Michelle M. Mello et al. NEW ENGLAND JOURNAL OF MEDICINE
- Biobanking in British Columbia: discussions of the future of personalized medicine through deliberative public engagement
- (2008) Michael Burgess et al. Personalized Medicine
- Health-Related Direct-to-Consumer Genetic Tests: A Public Health Assessment and Analysis of Practices Related to Internet-Based Tests for Risk of Thrombosis
- (2008) K.A.B. Goddard et al. Public Health Genomics
- RESEARCH ETHICS: Certificates of Confidentiality and Compelled Disclosure of Data
- (2008) L. M. Beskow et al. SCIENCE
- Research Ethics Recommendations for Whole-Genome Research: Consensus Statement
- (2008) Timothy Caulfield et al. PLOS BIOLOGY
- Resolving Individuals Contributing Trace Amounts of DNA to Highly Complex Mixtures Using High-Density SNP Genotyping Microarrays
- (2008) Nils Homer et al. PLoS Genetics
Find Funding. Review Successful Grants.
Explore over 25,000 new funding opportunities and over 6,000,000 successful grants.
ExploreDiscover Peeref hubs
Discuss science. Find collaborators. Network.
Join a conversation