Literature DB >> 21574070

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

Barbara Prainsack1.   

Abstract

While the availability of genome tests on the internet has given rise to heated debates about the likely impact on personal genome information on test-takers, on insurance, and on healthcare systems, in this article I argue that a more tangible effect of personal genomics is that it has started to change how participation in disease research is conceived and enacted. I examine three models of research participation that personal genomics customers are encouraged to engage in. I conclude with an evaluation of the pitfalls and benefits of "crowdsourcing" genetic disease research in the context of personal genomics.

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Year:  2011        PMID: 21574070     DOI: 10.1080/08989621.2011.575032

Source DB:  PubMed          Journal:  Account Res        ISSN: 0898-9621            Impact factor:   2.622


  11 in total

1.  Exposome informatics: considerations for the design of future biomedical research information systems.

Authors:  Fernando Martin Sanchez; Kathleen Gray; Riccardo Bellazzi; Guillermo Lopez-Campos
Journal:  J Am Med Inform Assoc       Date:  2013-11-01       Impact factor: 4.497

Review 2.  Direct-to-consumer personalized genomic testing.

Authors:  Cinnamon S Bloss; Burcu F Darst; Eric J Topol; Nicholas J Schork
Journal:  Hum Mol Genet       Date:  2011-08-09       Impact factor: 6.150

3.  Ethical issues in health research with novel online sources.

Authors:  Effy Vayena; Anna Mastroianni; Jeffrey Kahn
Journal:  Am J Public Health       Date:  2012-10-18       Impact factor: 9.308

4.  Health research 2.0: The use in research of personal fitness or health data shared on social network raises both scientific and ethical concerns.

Authors:  Katrin Weigmann
Journal:  EMBO Rep       Date:  2014-02-11       Impact factor: 8.807

5.  Tactics of material participation: How patients shape their engagement through e-health.

Authors:  Karen Dam Nielsen; Henriette Langstrup
Journal:  Soc Stud Sci       Date:  2018-04-20       Impact factor: 3.885

6.  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

7.  Research conducted using data obtained through online communities: ethical implications of methodological limitations.

Authors:  A Cecile J W Janssens; Peter Kraft
Journal:  PLoS Med       Date:  2012-10-23       Impact factor: 11.069

Review 8.  Governing the research-care divide in clinical biobanking: Dutch perspectives.

Authors:  Martin Boeckhout; Conor M W Douglas
Journal:  Life Sci Soc Policy       Date:  2015-08-06

9.  The powers of participatory medicine.

Authors:  Barbara Prainsack
Journal:  PLoS Biol       Date:  2014-04-15       Impact factor: 8.029

10.  Disentangling public participation in science and biomedicine.

Authors:  Christopher Kelty; Aaron Panofsky
Journal:  Genome Med       Date:  2014-01-31       Impact factor: 11.117

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