Author(s):

  • Gimbert, Carine
  • Lapointe, François Joseph

Abstract:

The quantified self community brings together enthusiasts who are using technological devices to monitor their health and social media to share their personal data with others online. In light of the growing popularity of this movement, self-trackers are challenging the health-care system by raising important questions about data ownership and risk-taking. As we enter a new era of consumer genomics, a significant number of quantified self (QS) individuals are now interested in the monitoring of their microbiome and performing personal interventions. In this paper, we discuss the scientific validity of experiments involving serial observations of a single individual as opposed to randomized clinical trials. We look at self-tracking from an ethical standpoint by questioning the risks and assessing the potential benefits for personalized medicine in general and for microbiome research in particular.

Documentation:

https://doi.org/10.1186/s40168-015-0138-x

References:

  • 1.Swan M. The quantified-self: fundamental disruption in big data science and biological discovery. Big Data. 2013;1(2):85–99.Article  Google Scholar 
  • 2.Swan M. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. Int J Environ Res Public Health. 2009;6(2):492–525.PubMed Central  Article  PubMed  Google Scholar 
  • 3.Appelboom G, LoPresti M, Reginster JY, Sander Connolly E, Dumont EP. The quantified patient: a patient participatory culture. Curr Med Res Opin. 2014;30(12):2585–7.Article  PubMed  Google Scholar 
  • 4.Thornquist E, Kirkengen AL. The quantified self: closing the gap between general knowledge and particular case? J Eval Clin Pract. 2015;21(3):398–403.Article  PubMed  Google Scholar 
  • 5.McCurdy K. How visualizing health problems could help solve medical mysteries. 2011. https://sensical.wordpress.com/2011/11/16/how-visualizing-health-problems-could-help-solve-medical-mysteries/. Accessed 2 Dec 2015.
  • 6.Blenkinsopp D. Treatment strategy for chronic fatigue syndrome (ME): A work in progress. 2013. http://biohacked.net/treatment-strategy-for-me-chronic-fatigue-syndrome/. Accessed 2 Dec 2015.
  • 7.Meisel A. How I overcame Crohn’s disease: my diet, supplements, and lifestyle strategies to beat Crohn’s disease and take back your life. CreateSpace; 2014.
  • 8.Marshall J. Kickstart your research. Proc Natl Acad Sci U S A. 2013;110(13):4857–9.PubMed Central  Article  CAS  PubMed  Google Scholar 
  • 9.Weigmann K. Tapping the crowds for research funding. Crowdfunding, a common practice to support projects in the arts, music or gaming, has also attracted the attention of scientists. EMBO Rep. 2013;14(12):1043–6.PubMed Central  Article  CAS  PubMed  Google Scholar 
  • 10.Costandi M. Citizen microbiome. Nature Biotech. 2013;31(2):90.Article  CAS  Google Scholar 
  • 11.Smarr L. Quantifying your body: a how-to guide from a systems biology perspective. Biotechnol J. 2012;7(8):980–91.Article  CAS  PubMed  Google Scholar 
  • 12.Dudley JT, Listgarten J, Stegle O, Brenner SE, Parts L. Personalized medicine: from genotypes, molecular phenotypes and the quantified self, towards improved medicine. Pac Symp Biocomput. 2015:342–346.
  • 13.Choe EK, Lee NB, Lee B, Pratt W, Kientz JA. Understanding quantified-selfers’ practices in collecting and exploring personal data. In: Proceedings of the 32nd Annual ACM conference on Human Factors in Computing Systems. New York: ACM; 2014. p. 1143–52. Google Scholar 
  • 14.Bottles K. Will the quantified self movement take off in health care? Physician Exec. 2012;38(5):74–5.PubMed  Google Scholar 
  • 15.Lupton D. Quantifying the body: monitoring and measuring health in the age of mHealth technologies. Crit Public Health. 2013;23(4):393–403.Article  Google Scholar 
  • 16.Altman LK. Who goes first? The story of self experimentation in medicine. Berkeley: University of California Press; 1987. Google Scholar 
  • 17.Barrett MA, Humblet O, Hiatt RA, Adler NE. Big data and disease prevention: from quantified self to quantified communities. Big Data. 2013;1(3):168–75.Article  Google Scholar 
  • 18.Lupton D. Self-tracking modes: reflexive self-monitoring and data practices. Soc Sci Res Net. 2014:2483549.
  • 19.Hawkins AK, O’Doherty KC. “Who owns your poop?”: insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies. BMC Med Genomics. 2011;4:72.PubMed Central  Article  PubMed  Google Scholar 
  • 20.Rose N, Novas C. Biological citizenship. In: Ong A, Collier S, editors. Global assemblages: technology, politics, and ethics as anthropological problems. London: Blackwell; 2004. p. 439–63. Google Scholar 
  • 21.Plows A, Boddington P. Troubles with biocitizenship? Genomics Soc Policy. 2006;2:115–35. Google Scholar 
  • 22.Cooter R. Biocitizenship. Lancet. 2008;372(9651):1725.Article  PubMed  Google Scholar 
  • 23.Lupton D. The digitally engaged patient: self-monitoring and self-care in the digital health era. Soc Theory Health. 2013;11(3):256–70.Article  Google Scholar 
  • 24.Hood L. A personal journey of discovery: developing technology and changing biology. Annu Rev Anal Chem. 2008;1(1):1–43.Article  CAS  Google Scholar 
  • 25.Hood L. Systems biology and P4 medicine: past, present, and future. Rambam Maimonides Med J. 2013;4(2):e0012.PubMed Central  Article  PubMed  Google Scholar 
  • 26.Chen R, Mias GI, Li-Pook-Than J, Jiang L, Lam HY, Chen R, et al. Personal omics profiling reveals dynamic molecular and medical phenotypes. Cell. 2012;148(6):1293–307.PubMed Central  Article  CAS  PubMed  Google Scholar 
  • 27.Roberts S. Self-experimentation as a source of new ideas: ten examples about sleep, mood, health, and weight. Behav Brain Sci. 2004;27(2):227–62.PubMed  Google Scholar 
  • 28.Roberts S. The unreasonable effectiveness of my self-experimentation. Med Hypotheses. 2010;75(6):482–9.PubMed Central  Article  PubMed  Google Scholar 
  • 29.Paton C, Hansen M, Fernandez-Luque L, Lau AY. Self-tracking, social media and personal health records for patient empowered self-care. Yearb Med Inform. 2012;7:16–24.CAS  PubMed  Google Scholar 
  • 30.Miller HL. Self-experimentation as science. Behav Brain Sci. 2004;27(2):270–1.Article  Google Scholar 
  • 31.Weisse AB. Self-experimentation and its role in medical research. Tex Heart Inst J. 2012;39(1):51–4.PubMed Central  PubMed  Google Scholar 
  • 32.Davis JK. Self-experimentation. Account Res. 2003;10(3):175–87.Article  PubMed  Google Scholar 
  • 33.Schafer A. Experimentation with human subjects: a critique of the views of Hans Jonas. J Med Ethics. 1983;9(2):76–9.PubMed Central  Article  CAS  PubMed  Google Scholar 
  • 34.Williams-Jones B, Olivier C, Smith E. Governing ‘dual-use’ research in Canada: a policy review. Sci Public Policy. 2014;41:76–93.Article  Google Scholar 
  • 35.Bezuidenhout L. Data sharing and dual-use issues. Sci Eng Ethics. 2013;19(1):83–92.Article  PubMed  Google Scholar 
  • 36.Hunter D. Participant-led health research and ethical regulation. Res Ethics. 2013;9(2):50.Article  Google Scholar 
  • 37.Richman J, Apte Z. Crowdfunding and IRBs: the case of uBiome. Sci Am 2013. http://blogs.scientificamerican.com/guest-blog/crowdfunding-and-irbs-the-case-of-ubiome/. Accessed 2 Dec 2015.
  • 38.Vayena E, Tasioulas J. Adapting standards: ethical oversight of participant-led health research. PLoS Med. 2013;10(3):e1001402.PubMed Central  Article  PubMed  Google Scholar 
  • 39.Knoppers BM, Harris JR, Tassé AM, Budin-Ljøsne I, Kaye J, Deschênes M, et al. Towards a data sharing Code of Conduct for international genomic research. Genome Med. 2011;3(7):46.PubMed Central  Article  PubMed  Google Scholar 
  • 40.Swan M. Health 2050: the realization of personalized medicine through crowdsourcing, the quantified self, and the participatory biocitizen. J Pers Med. 2012;2(3):93–118.PubMed Central  Article  PubMed  Google Scholar 
  • 41.Leach JD. Rewild: you’re 99 % microbe—it’s time your start eating like it. Human Food Project; 2015.
  • 42.Smith MB, Kelly C, Alm EJ. How to regulate faecal transplants. Nature. 2014;506(7488):290–1.Article  PubMed  Google Scholar 
  • 43.David LA, Materna AC, Friedman J, Campos-Baptista MI, Blackburn MC, Perrotta A, et al. Host lifestyle affects human microbiota on daily timescales. Genome Biol. 2014;15(7):R89.PubMed Central  Article  PubMed  Google Scholar 
  • 44.Kerridge I. Altruism or reckless curiosity? A brief history of self experimentation in medicine. Intern Med J. 2003;33(4):203–7.Article  CAS  PubMed  Google Scholar 
  • 45.Nowotny H. The place of people in our knowledge. European Rev. 1999;7(2):247–62.Article  Google Scholar 
  • 46.Petrof EO, Gloor GB, Vanner SJ, Weese SJ, Carter D, Daigneault MC, et al. Stool substitute transplant therapy for the eradication of Clostridium difficile infection: ‘RePOOPulating’ the gut. Microbiome. 2013;1(1):3.PubMed Central  Article  PubMed  Google Scholar 
  • 47.Stone J. uBiome: ethical lapse or not? Sci Am 2013. http://blogs.scientificamerican.com/molecules-to-medicine/ubiome-ethical-lapse-or-not/. Accessed 2 Dec 2015.
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