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Data Donation as a Model for Citizen Science Health Research Cover

Data Donation as a Model for Citizen Science Health Research

Citizen Science: Theory and Practice
Volume 4 (2019): Issue 1
By: Matthew Bietz,  Kevin Patrick and  Cinnamon Bloss  
Open Access
|Mar 2019

References

  1. 123andMe. 2018. Research – 23andMe. Available at: https://www.23andme.com/research/ [Last accessed 15 October 2018].
    Back to article
  2. 2American Gut. n.d. American Gut Overview. Available at: http://americangut.org/american-gut-overview/ [Last accessed 15 October 2018].
    Back to article
  3. 3Anderson, M. 2017. Digital divide persists even as lower-income Americans make gains in tech adoption. Available at: http://www.pewresearch.org/fact-tank/2017/03/22/digital-divide-persists-even-as-lower-income-americans-make-gains-in-tech-adoption/ [Last accessed 15 October 2018].
    Back to article
  4. 4Ankeny, R and Leonelli, S. 2015. Valuing data in postgenomic biology: How data donation and curation practices challenge the scientific publication system. In: Stevens, H and Richardson, S (eds.), Postgenomics: Perspectives on biology after the genome, 126–149. Durham, NC: Duke University Press.
    Back to article
  5. 5Barrett, MA, Humblet, O, Hiatt, RA and Adler, NE. 2013. Big data and disease prevention: From quantified self to quantified communities. Big Data, 1(3): 168–175. DOI: 10.1089/big.2013.0027
    Back to article
  6. 6Bietz, MJ, Bloss, CS, Calvert, S, Godino, JG, Gregory, J, Claffey, MP, Sheehan, J and Patrick, K. 2015. Opportunities and challenges in the use of personal health data for health research. Journal of the American Medical Informatics Association, 23(e1): e42–e48. DOI: 10.1093/jamia/ocv118
    Back to article
  7. 7Bloss, C, Nebeker, C, Bietz, M, Bae, D, Bigby, B, Devereaux, M, Fowler, J, Waldo, A, Weibel, N, Patrick, K, Klemmer, S and Melichar, L. 2016. Reimagining human research protections for 21st century science. Journal of Medical Internet Research, 18(12): e329. DOI: 10.2196/jmir.6634
    Back to article
  8. 8Bonney, R, Ballard, H, Jordan, R, McCallie, E, Phillips, T, Shirk, J and Wilderman, CC. 2009. Public Participation in Scientific Research: Defining the Field and Assessing Its Potential for Informal Science Education. A CAISE Inquiry Group Report. Available at: https://eric.ed.gov/?id=ED519688 [Last accessed 15 October 2018].
    Back to article
  9. 9Centers for Disease Control and Prevention. 2015. The Tuskegee Timeline. Available at: https://www.cdc.gov/tuskegee/timeline.htm [Last accessed 15 October 2018].
    Back to article
  10. 10Contreras, JL. 2011. Bermuda’s legacy: Policy, patents, and the design of the genome commons. Minnesota Journal of Law, Science & Technology, 12(1): 61–125.
    Back to article
  11. 11De Mooy, M. 2018. The ethics of design: Unintended (but foreseeable) consequences. Available at: https://cdt.org/blog/the-ethics-of-design-unintended-but-foreseeable-consequences/ [Last accessed 15 October 2018].
    Back to article
  12. 12European Commission. n.d. Participant Portal H2020 Online Manual: Ethics. Available at: http://ec.europa.eu/research/participants/docs/h2020-funding-guide/cross-cutting-issues/ethics_en.htm [Last accessed 15 October 2018].
    Back to article
  13. 13Fabsitz, RR, McGuire, A, Sharp, RR, Puggal, M, Beskow, LM, Biesecker, LG, Bookman, E, Burke, W, Burchard, EG, Church, G, Clayton, EW, Eckfeldt, JH, Fernandez, CV, Fisher, R, Fullerton, SM, Gabriel, S, Gachupin, F, James, C, Jarvik, GP, Kittles, R, Leib, JR, O’Donnell. C, O’Rourke. PP, Rodriguez. LL, Schully. SD, Shuldiner. AR, Sze. RKF, Thakuria. JV, Wolf. SM and Burke. GL. 2010. Ethical and practical guidelines for reporting genetic research results to study participants: Updated guidelines from an NHLBI working group. Circulation: Cardiovascular Genetics, 3(6): 574–580. DOI: 10.1161/CIRCGENETICS.110.958827
    Back to article
  14. 14Harvard PGP. n.d. The Harvard Personal Genome Project (PGP) – enabling Participant-driven Science [Online]. Cambridge, MA: Harvard Medical School. Available: https://pgp.med.harvard.edu/ [Accessed 14 October 2018].
    Back to article
  15. 15Hilgartner, S. 1995. Biomolecular databases: New communication regimes for biology? Science Communication, 17(2): 240–263. DOI: 10.1177/1075547095017002009
    Back to article
  16. 16Knoppers, BM, Joly, Y, Simard, J and Durocher, F. 2006. The emergence of an ethical duty to disclose genetic research results: International perspectives. European Journal of Human Genetics, 14(11): 1170. DOI: 10.1038/sj.ejhg.5201690
    Back to article
  17. 17Lerman, J. 2013. Big data and its exclusions. Stanford Law Review Online, 66: 55. DOI: 10.2139/ssrn.2293765
    Back to article
  18. 18Liu, Y, Ferreira, D, Goncalves, J, Hosio, S, Pandab, P and Kostakos, V. 2017. Donating context data to science: The effects of social signals and perceptions on action-taking. Interacting with Computers, 29(2): 132–146. DOI: 10.1093/iwc/iww013
    Back to article
  19. 19McCain, KW. 1995. Mandating sharing: Journal policies in the natural sciences. Science Communication, 16(4): 403–431. DOI: 10.1177/1075547095016004003
    Back to article
  20. 20McDonald, D, Hyde, E, Debelius, JW, Morton, JT, Gonzalez, A, Ackermann, G, Aksenov, AA, Behsaz, B, Brennan, C, Chen, Y, DeRight Goldasich, L, Dorrestein, PC, Dunn, RR, Fahimipour, AK, Gaffney, J, Gilbert, JA, Gogul, G, Green, JL, Hugenholtz, P, Humphrey, G, Huttenhower, C, Jackson, MA, Janssen, S, Jeste, DV, Jiang, L, Kelley, ST, Knights, D, Kosciolek, T, Ladau, J, Leach, J, Marotz, C, Meleshko, D, Melnik, AV, Metcalf, JL, Mohimani, H, Montassier, E, Navas-Molina, J, Nguyen, TT, Peddada, S, Pevzner, P, Pollard, KS, Rahnavard, G, Robbins-Pianka, A, Sangwan, N, Shorenstein, J, Smarr, L, Song, SJ, Spector, T, Swafford, AD, Thackray, VG, Thompson, LR, Tripathi, A, Vázquez-Baeza. Y, Vrbanac. A, Wischmeyer. P, Wolfe. E, Zhu. Q and Knight. R. 2018. American Gut: An Open Platform for Citizen Science Microbiome Research. mSystems, 3(3). DOI: 10.1128/mSystems.00031-18
    Back to article
  21. 21Milgram, S. 1974. Obedience to authority: An experimental view. New York, Harper & Row.
    Back to article
  22. 22Nafus, D and Sherman, J. 2014. Big data, big questions|This one does not go up to 11: The quantified self movement as an alternative big data practice. International Journal of Communication, 8: 1784–1794.
    Back to article
  23. 23National Center for Biotechnology Information, U.S. National Library of Medicine. n.d. GenBank Overview. Available at: https://www.ncbi.nlm.nih.gov/genbank/ [Last accessed 15 October 2018].
    Back to article
  24. 24National Institutes of Health. 2018. Inclusion of women and minorities as participants in research involving human subjects – policy implementation page. Available at: https://grants.nih.gov/grants/funding/women_min/women_min.htm [Last accessed 15 October 2018].
    Back to article
  25. 25Nest Labs. 2018. Privacy statement for Nest products and services. Available at: https://nest.com/legal/privacy-statement-for-nest-products-and-services/ [Last accessed 15 October 2018].
    Back to article
  26. 26Open Humans Foundation. n.d.a About Open Humans. [Online]. Available at: https://www.openhumans.org/about/ [Last accessed 15 October 2018].
    Back to article
  27. 27Open Humans Foundation. n.d.b The Personal Genome Project. Available at: https://www.personalgenomes.org/us [Last accessed 15 October 2018].
    Back to article
  28. 28Quantified Self. 2018. Camille Nebeker: Informed Consent, Self-Consent. Available at: https://medium.com/quantified-self-public-health/camille-nebeker-informed-consent-self-consent-db63b842276e [Last accessed 15 October 2018].
    Back to article
  29. 29Quantified Self Labs. 2015. Quantified Self: Self Knowledge Through Numbers. Available at: http://quantifiedself.com/ [Last accessed 15 October 2018].
    Back to article
  30. 30Rolland, B, Lee, CP and Potter, JD. 2017. Greater than the sum of its parts: A qualitative study of the role of the Coordinating Center in facilitating Coordinated Collaborative Science. Journal of Research Administration, 48(1): 65–85.
    Back to article
  31. 31Rothstein, MA, Wilbanks, JT and Brothers, KB. 2015. Citizen science on your smartphone: An ELSI research agenda. The Journal of Law, Medicine & Ethics, 43(4): 897–903. DOI: 10.1111/jlme.12327
    Back to article
  32. 32Shirk, JL, Ballard, HL, Wilderman, CC, Phillips, T, Wiggins, A, Jordan, R, McCallie, E, Minarchek, M, Lewenstein, BV, Krasny, ME and Bonney, R. 2012. Public participation in scientific research: A framework for deliberate design. Ecology and Society, 17(2): 29. DOI: 10.5751/ES-04705-170229
    Back to article
  33. 33Smith, A. 2013. Smartphone ownership - 2013 update. Washington, DC: Pew Research Center. Available at: http://www.pewinternet.org/2013/06/05/smartphone-ownership-2013/ [Last accessed 15 October 2018].
    Back to article
  34. 34Swan, M. 2012. Crowdsourced health research studies: An important emerging complement to clinical trials in the public health research ecosystem. Journal of Medical Internet Research, 14(2): e46. DOI: 10.2196/jmir.1988
    Back to article
  35. 35U.S. Department of Health and Human Services. n.d. Federal policy for the protection of human subjects (‘Common Rule’). Available at: https://www.hhs.gov/ohrp/regulations-and-policy/regulations/common-rule/index.html [Last accessed 15 October 2018].
    Back to article
  36. 36Vayena, E, Mastroianni, A and Kahn, J. 2012. Ethical issues in health research with novel online sources. American Journal of Public Health, 102(12): 2225–30. DOI: 10.2105/AJPH.2012.300813
    Back to article
  37. 37Vayena, E, Salathe, M, Madoff, LC and Brownstein, JS. 2015. Ethical challenges of big data in public health. PLoS Computaional Biology, 11(2): e1003904. DOI: 10.1371/journal.pcbi.1003904
    Back to article
  38. 38Vayena, E and Tasioulas, J. 2013. Adapting standards: Ethical oversight of participant-led health research. PLoS Medicine, 10(3): e1001402. DOI: 10.1371/journal.pmed.1001402
    Back to article
  39. 39Weibel, N, Desai, P, Saul, L, Gupta, A and Little, S. 2017. HIV risk on twitter: The ethical dimension of social media evidence-based prevention for vulnerable populations. Proceedings of the 50th Hawaii International Conference on System Sciences, 1775–1784. DOI: 10.24251/HICSS.2017.216
    Back to article
  40. 40Wikilife Foundation. n.d. Datadonors|Bye bye! Available at: http://datadonors.org/ [Last accessed 15 October 2018].
    Back to article
  41. 41Wolf, G. 2009. Know thyself: Tracking every face of life, from sleep to mood to pain, 24/7/365. Wired, 22 June [online access at: https://www.wired.com/2009/06/lbnp-knowthyself/ last accessed 15 October 2018].
    Back to article
  42. 42Zimbardo, PG. 2018. Stanford Prison Experiment. Available at: http://www.prisonexp.org/ [Last accessed 15 October 2018].
    Back to article
DOI: https://doi.org/10.5334/cstp.178 | Journal eISSN: 2057-4991
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Language: English
Submitted on: May 18, 2018
Accepted on: Sep 22, 2018
Published on: Mar 8, 2019
Published by: Ubiquity Press
In partnership with: Paradigm Publishing Services
Publication frequency: 1 issue per year
Keywords:
citizen science,
data donation,
informed consent,
data access,
privacy,
data governance

© 2019 Matthew Bietz, Kevin Patrick, Cinnamon Bloss, published by Ubiquity Press
This work is licensed under the Creative Commons Attribution 4.0 License.

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