## Materials
- Talk slides: [HTML](http://gilmore-lab.github.io/sips-2017-07-30/). [Source on GitHub](http://github.com/gilmore-lab/sips-2017-07-30/).
- Gilmore's contact info:
- [@rogilmore](http://twitter.com/rogilmore)
- rick.o.gilmore AT-SIGN gmail PERIOD com
- [gilmore-lab.github.io](http://gilmore-lab.github.io)
- [rick-gilmore.com](http://rick-gilmore.com)
- Nilsonne's contact info:
- [@GustavNilsonne](https://twitter.com/GustavNilsonne)
- gustav.nilsonne AT-SIGN ki PERIOD se
- [nilsonne.net](http://nilsonne.net)
## Additional resources
Bankert, E., & Amdur, R. (2000). The IRB is not a data and safety monitoring board. IRB, 22(6), 9–11. Retrieved from <https://www.ncbi.nlm.nih.gov/pubmed/11883486>
Burnham, B. (2014, February 5). Open Science Collaboration Blog · Open Data and IRBs. Retrieved July 20, 2017, from <http://osc.centerforopenscience.org/2014/02/05/open-data-and-IRBs/>
Canadian Institutes of Health Research (CIHR) [Open Access Policy](http://www.cihr-irsc.gc.ca/e/46068.html)
Canadian Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans [(TCPS 2)](http://www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/Default/), especially [Chapter 5](http://www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/chapter5-chapitre5/#toc05-1e)
**C**onnected and **O**pen **R**esearch **E**thics (CORE). <https://thecore.ucsd.edu/>
Dankar FK, El Emam K, Neisa A, Roffey T. Estimating the re-identification risk of clinical data sets. BMC Medical Informatics and Decision Making. 2012;12:66. Available from: <http://dx.doi.org/10.1186/1472-6947-12-66>
[Databrary.org](http://databrary.org)
[DataTags](http://datatags.org)
[Dataverse](http://dataverse.org)
de Montjoye, Y.-A., Radaelli, L., Singh, V. K., & Pentland, A. S. (2015). Identity and privacy. Unique in the shopping mall: on the reidentifiability of credit card metadata. Science, 347(6221), 536–539. Retrieved from <http://dx.doi.org/10.1126/science.1256297>
de Wolf, V. A., Sieber, J. E., Steel, P. M., & Zarate, A. O. (2005). Part I: What Is the Requirement for Data Sharing? IRB: Ethics & Human Research, 27(6), 12–16. Hastings Center. Retrieved from <http://www.jstor.org/stable/3563537>
de Wolf, V. A., Sieber, J. E., Steel, P. M., & Zarate, A. O. (2006). Part III: meeting the challenge when data sharing is required. IRB, 28(2), 10–15. Retrieved from <https://www.ncbi.nlm.nih.gov/pubmed/16770883>
Gilmore, R. O., & Adolph, K. E. (2017). Video can make behavioural science more reproducible. Nature Human Behavior, 1. Retrieved from <http://dx.doi.org/10.1038/s41562-017-0128>
Gymrek, M., McGuire, A. L., Golan, D., Halperin, E., & Erlich, Y. (2013). Identifying personal genomes by surname inference. Science, 339(6117), 321–324. Retrieved from <http://dx.doi.org/10.1126/science.1229566>
Hansson MG, Hanns L, Olaf R, Franz S, Michael O, Yaffa R, et al. The risk of re-identification versus the need to identify individuals in rare disease research. European Journal of Human Genetics. 2016 May 25; Available from: <http://www.nature.com/ejhg/journal/vaop/ncurrent/full/ejhg201652a.html>
[ICPSR Confidentiality Language](https://www.icpsr.umich.edu/icpsrweb/content/datamanagement/confidentiality/conf-language.html)
Lane, J., Stodden, V., Bender, S., Nissenbaum, H., Strandburg, K. J., Barocas, S., Acquisti, A., et al. (n.d.). Privacy, Big Data, and the Public Good edited by Julia Lane. Cambridge Core. Retrieved July 28, 2017, from <https://www.cambridge.org/core/books/privacy-big-data-and-the-public-good/1ACB10292B07EC30F071B4AD9650955C>
Latanya Sweeney's Data Privacy Lab: <https://dataprivacylab.org/people/sweeney/>
Ohm, P. (2009). Broken Promises of Privacy: Responding to the Surprising Failure of Anonymization. Retrieved July 5, 2017, from <https://papers.ssrn.com/sol3/papers.cfm?abstract_id=1450006>.
[Open Brain Consent](http://open-brain-consent.readthedocs.io/en/latest/#)
[Open Humans Project](http://openhumans.org)
[OpenNeuro.org](http://openneuro.org)
Schönbrodt, F., Gollwitzer, M. & Abele-Brehm A. (2016). Data Management in Psychological Science: Specification of the DFG Guidelines. <http://www.dgps.de/fileadmin/documents/Empfehlungen/Data_Management_eng_9.11.16.pdf>
## Draft consent language from Penn State
- *"Your research records will be labeled with <<list all identifiers that apply: your code number, your initials, your date of birth, etc.>> and will be kept <<describe safe area where research records are to be stored, which may include electronic storage with a University-approved third party provider.>>"*
- *"{Include if sharing data in an online data library} At the end of this research study, you will be asked for permission for researchers to share your research data with others in an online, digital data library, for example Databrary (Databrary.org), for an indefinite period of time. Your data will be identified by a code number, not by name. No one in the data library will have access to the materials linking your name to your code. While your data may be stored with the online digital library, you do not need to agree to share your data with others authorized by the online digital library. Refusing to do so has no bearing on your participation in this study, course credit, or possible payments to which you are eligible. The research data may contain the following:"*
- *"{Include those applicable to the proposed study} Video recordings, photographs and images that contain identifiable information, such as facial images."*
- *"{Include data points that are not directly identifying applicable to the proposed study} Other information such as your age, birth date, sex, ethnicity, education, and any health information you reported to us; and,"*
- *"Information supplied by researchers who analyze data from this research study. For example: survey responses, diaries, interview responses, etc."*
