People are more valuable than the data they generate on social media. Genetic research needs to recognize this fact when attempting to recruit people from social media networks and share information using these tools.
A fellow librarian sent a call for submissions to the Hastings Center’s Bioethics Forum on ethical issues in the use of social media for genetics research. In response, I submitted this piece: http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=7650&blogid=140
Basically, In order to protect individuals, there is a need for improved informed consent (Terms and Conditions) and updated regulations.
Here is a bibliography for the post:
Angrist, M. 2015. Start me up: ways to encourage sharing of genomic information with research participants. Nature Reviews Genetics 16 (17 July): 435-436. http://www.nature.com/nrg/journal/v16/n8/full/nrg3981.html
Barbaro, M. and T. Zeller. 2006. “A face is exposed for AOL searcher no. 4417749.” New York Times, August 9. http://www.nytimes.com/2006/08/09/technology/09aol.html
Bazelon, E. 2014. “The online avengers.” The New York Times Magazine, January 15. http://www.nytimes.com/2014/01/19/magazine/the-online-avengers.html
Ginsberg, J., M. H. Mohebbi, R. S. Patel, L. Brammer, M. S. Smolinski, L. Brilliant. 2009. Detecting influenza epidemics using search engine query data. Nature 457 (19 February): 1012-1014. http://www.nature.com/nature/journal/v457/n7232/full/nature07634.html
Hayden, E. C. 2015. Consumer DNA firms get serious about drug development. Nature 520 (30 April): 597-598. http://www.nature.com/news/consumer-dna-firms-get-serious-about-drug-development-1.17423
—. 2015. Scientists hope to attract millions to ‘DNA.LAND.’ Nature News. 09 October. http://www.nature.com/news/scientists-hope-to-attract-millions-to-dna-land-1.18514
Henry, J., B. W. Palmer, L. Palinkas, D. K. Glorioso, M. P. Caligiuri, D. V. Jeste. 2009. Reformed consent: adapting to new media and research participant preferences. IRB 31(2): 1-8. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2743865/
Landi, H. 2015. Survey: Majority of Americans underestimate the threat of stolen medical data. Healthcare Informatics Magazine (30 October). http://www.healthcare-informatics.com/news-item/survey-majority-americans-underestimate-threat-stolen-medical-data
Lazer, D., R. Kennedy, G. King, A.Vespignani. 2014. The parable of Google flu: traps in big data analysis. Science 343 (14 March): 1203-1205. https://www.sciencemag.org/content/343/6176/1203
Nature Publishing Group. 2015. To share is human. Nature Biotechnology 33(8): 796-800. http://www.nature.com/nbt/journal/v33/n8/full/nbt.3309.html
Nuffield Council on Bioethics. 2015. Ethical governance of data initiatives. In The collection, linking and use of data in biomedical research and healthcare: ethical issues. Chapter 5. 84-95. http://nuffieldbioethics.org/report/collection-linking-use-data-biomedical-research-health-care/chapter-downloads-2/
Ponemon Institute. 2015. Fifth annual survey on medical identity theft. Ponemon Institute Research Report, February. http://medidfraud.org/wp-content/uploads/2015/02/2014_Medical_ID_Theft_Study1.pdf
Search ID. About AOL search data scandal. SearchID.com. http://search-id.com/aol/about
Vormetric. 2015. Vormetric survey reveals 89% of Americans fail to recognize the threat posed by stolen medical records. Vormetric.com, 29 October. http://www.vormetric.com/company/newsroom/press-releases/vormetric-survey-reveals-89-of-americans-fail-to-recognize-the-threat-posed-by-stolen-medical-records
