Literature DB >> 23078484

Ethical issues in health research with novel online sources.

Effy Vayena1, Anna Mastroianni, Jeffrey Kahn.   

Abstract

Health-related research is increasingly drawing on novel sources of online data, such as crowdsourced information about disease outbreaks, consumer-supplied information provided to health or wellness Web sites, Internet search queries about personal health, and social network postings that identify health behaviors. We offer examples of online sources and their uses, identify ethical and policy issues they generate, and formulate key questions for future discussion and investigation. Further work in this area will require cross-disciplinary collaboration to develop ethics and policy guidance for the ethical use of these novel data sources in health-related research.

Mesh：

Year:  2012        PMID： 23078484      PMCID： PMC3519346          DOI： 10.2105/AJPH.2012.300813

Source DB:  PubMed          Journal:  Am J Public Health        ISSN： 0090-0036            Impact factor:   9.308


  32 in total

1.  Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm.

Authors:  Paul Wicks; Timothy E Vaughan; Michael P Massagli; James Heywood
Journal:  Nat Biotechnol       Date:  2011-04-24       Impact factor: 54.908

2.  Interoperability: what it means, why it matters.

Authors:  Kevin Heubusch
Journal:  J AHIMA       Date:  2006-01

3.  Infodemiology and infoveillance tracking online health information and cyberbehavior for public health.

Authors:  Gunther Eysenbach
Journal:  Am J Prev Med       Date:  2011-05       Impact factor: 5.043

Review 4.  Voting with their mice: personal genome testing and the "participatory turn" in disease research.

Authors:  Barbara Prainsack
Journal:  Account Res       Date:  2011-05       Impact factor: 2.622

Review 5.  Predictive, personalized, preventive, participatory (P4) cancer medicine.

Authors:  Leroy Hood; Stephen H Friend
Journal:  Nat Rev Clin Oncol       Date:  2011-03       Impact factor: 66.675

6.  Power to the people: participant ownership of clinical trial data.

Authors:  Sharon F Terry; Patrick F Terry
Journal:  Sci Transl Med       Date:  2011-02-09       Impact factor: 17.956

Review 7.  The emerging role of electronic medical records in pharmacogenomics.

Authors:  R A Wilke; H Xu; J C Denny; D M Roden; R M Krauss; C A McCarty; R L Davis; T Skaar; J Lamba; G Savova
Journal:  Clin Pharmacol Ther       Date:  2011-01-19       Impact factor: 6.875

8.  The eMERGE Network: a consortium of biorepositories linked to electronic medical records data for conducting genomic studies.

Authors:  Catherine A McCarty; Rex L Chisholm; Christopher G Chute; Iftikhar J Kullo; Gail P Jarvik; Eric B Larson; Rongling Li; Daniel R Masys; Marylyn D Ritchie; Dan M Roden; Jeffery P Struewing; Wendy A Wolf
Journal:  BMC Med Genomics       Date:  2011-01-26       Impact factor: 3.063

9.  Monitoring influenza activity in the United States: a comparison of traditional surveillance systems with Google Flu Trends.

Authors:  Justin R Ortiz; Hong Zhou; David K Shay; Kathleen M Neuzil; Ashley L Fowlkes; Christopher H Goss
Journal:  PLoS One       Date:  2011-04-27       Impact factor: 3.240

10.  Sharing data for public health research by members of an international online diabetes social network.

Authors:  Elissa R Weitzman; Ben Adida; Skyler Kelemen; Kenneth D Mandl
Journal:  PLoS One       Date:  2011-04-27       Impact factor: 3.240
View more
  10 in total

1.  Crowdsourced Health Data: Comparability to a US National Survey, 2013-2015.

Authors:  Veronica Yank; Sanjhavi Agarwal; Pooja Loftus; Steven Asch; David Rehkopf
Journal:  Am J Public Health       Date:  2017-06-22       Impact factor: 9.308

2.  Key challenges for next-generation pharmacogenomics: Science & Society series on Science and Drugs.

Authors:  Kostas Kampourakis; Effy Vayena; Christina Mitropoulou; Ron H van Schaik; David N Cooper; Joseph Borg; George P Patrinos
Journal:  EMBO Rep       Date:  2014-04-10       Impact factor: 8.807

3.  Constructing Ebola transmission chains from West Africa and estimating model parameters using internet sources.

Authors:  W B P Pettey; M E Carter; D J A Toth; M H Samore; A V Gundlapalli
Journal:  Epidemiol Infect       Date:  2017-05-02       Impact factor: 2.451

4.  Social media and physicians' online identity crisis.

Authors:  Matthew DeCamp; Thomas W Koenig; Margaret S Chisolm
Journal:  JAMA       Date:  2013-08-14       Impact factor: 56.272

5.  Ethical challenges of big data in public health.

Authors:  Effy Vayena; Marcel Salathé; Lawrence C Madoff; John S Brownstein
Journal:  PLoS Comput Biol       Date:  2015-02-09       Impact factor: 4.475

6.  Research led by participants: a new social contract for a new kind of research.

Authors:  Effy Vayena; Roger Brownsword; Sarah Jane Edwards; Bastian Greshake; Jeffrey P Kahn; Navjoyt Ladher; Jonathan Montgomery; Daniel O'Connor; Onora O'Neill; Martin P Richards; Annette Rid; Mark Sheehan; Paul Wicks; John Tasioulas
Journal:  J Med Ethics       Date:  2015-03-30       Impact factor: 2.903

7.  Rethinking the ethical approach to health information management through narration: pertinence of Ricœur's 'little ethics'.

Authors:  Corine Mouton Dorey
Journal:  Med Health Care Philos       Date:  2016-12

8.  Open sharing of genomic data: Who does it and why?

Authors:  Tobias Haeusermann; Bastian Greshake; Alessandro Blasimme; Darja Irdam; Martin Richards; Effy Vayena
Journal:  PLoS One       Date:  2017-05-09       Impact factor: 3.240

9.  Adapting standards: ethical oversight of participant-led health research.

Authors:  Effy Vayena; John Tasioulas
Journal:  PLoS Med       Date:  2013-03-12       Impact factor: 11.069

10.  The Ethics Ecosystem: Personal Ethics, Network Governance and Regulating Actors Governing the Use of Social Media Research Data.

Authors:  Gabrielle Samuel; Gemma E Derrick; Thed van Leeuwen
Journal:  Minerva       Date:  2019-02-07
  10 in total

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