TY - BOOK PY - 2011 DA - 2011// TI - Toward precision medicine: building a knowledge network for biomedical research and a new taxonomy of disease ID - ref1 ER - TY - JOUR AU - Cook-Deegan, R. AU - Ankeny, R. A. AU - Jones, K. M. PY - 2017 DA - 2017// TI - Sharing data to build a medical information commons: from Bermuda to the Global Alliance JO - Annu Rev Genomics Hum Genet VL - 18 UR - https://doi.org/10.1146/annurev-genom-083115-022515 DO - 10.1146/annurev-genom-083115-022515 ID - Cook-Deegan2017 ER - TY - CHAP AU - Ostrom, E. PY - 1990 DA - 1990// TI - Analyzing long-enduring, self-organized, and self-governed CPRs BT - Governing the commons: the evolution of institutions for collective action PB - Cambridge University Press CY - Cambridge; New York UR - https://doi.org/10.1017/CBO9780511807763.005 DO - 10.1017/CBO9780511807763.005 ID - Ostrom1990 ER - TY - BOOK PY - 2007 DA - 2007// TI - Understanding knowledge as a commons: from theory to practice PB - MIT Press CY - Cambridge ID - ref4 ER - TY - JOUR AU - Schofield, P. N. AU - Bubela, T. AU - Weaver, T. AU - Portilla, L. AU - Brown, S. D. AU - Hancock, J. M. PY - 2009 DA - 2009// TI - Post-publication sharing of data and tools JO - Nature VL - 461 UR - https://doi.org/10.1038/461171a DO - 10.1038/461171a ID - Schofield2009 ER - TY - BOOK AU - Evans, B. J. PY - 2016 DA - 2016// TI - Barbarians at the gate: consumer-driven health data commons and the transformation of citizen science. SSRN Scholarly Paper PB - Social Science Research Network CY - Rochester ID - Evans2016 ER - TY - JOUR AU - Evans, B. J. PY - 2016 DA - 2016// TI - Power to the people: data citizens in the age of precision medicine JO - Vanderbilt Entertainment and Technology Law VL - 19 ID - Evans2016 ER - TY - JOUR AU - Erlich, Y. AU - Williams, J. B. AU - Glazer, D. AU - Yocum, K. AU - Farahany, N. AU - Olson, M. PY - 2014 DA - 2014// TI - Redefining genomic privacy: trust and empowerment JO - PLoS Biol VL - 12 UR - https://doi.org/10.1371/journal.pbio.1001983 DO - 10.1371/journal.pbio.1001983 ID - Erlich2014 ER - TY - STD TI - National Congress of American Indians. American Indian and Alaska Native Genetics Resource Center. http://genetics.ncai.org/. Accessed 8 Sept 2017. UR - http://genetics.ncai.org/ ID - ref9 ER - TY - JOUR AU - Joosten, Y. A. AU - Israel, T. L. AU - Williams, N. A. AU - Boone, L. R. AU - Schlundt, D. G. AU - Mouton, C. P. PY - 2015 DA - 2015// TI - Community engagement studios: a structured approach to obtaining meaningful input from stakeholders to inform research JO - Acad Med VL - 90 UR - https://doi.org/10.1097/ACM.0000000000000794 DO - 10.1097/ACM.0000000000000794 ID - Joosten2015 ER - TY - JOUR AU - Evans, B. J. AU - Dorschner, M. O. AU - Burke, W. AU - Jarvik, G. P. PY - 2014 DA - 2014// TI - Regulatory changes raise troubling questions for genomic testing JO - Genet Med VL - 16 UR - https://doi.org/10.1038/gim.2014.127 DO - 10.1038/gim.2014.127 ID - Evans2014 ER - TY - BOOK AU - Mattison, J. PY - 2013 DA - 2013// TI - Secondary use of protected health information PB - Information privacy in the evolving healthcare environment. HIMSS CY - In ID - Mattison2013 ER - TY - STD TI - Stead WW. Recommendations on de-identification of protected health information under HIPAA. 2017. https://www.ncvhs.hhs.gov/wp-content/uploads/2013/12/2017-Ltr-Privacy-DeIdentification-Feb-23-Final-w-sig.pdf. Accessed 8 Sept 2017 UR - https://www.ncvhs.hhs.gov/wp-content/uploads/2013/12/2017-Ltr-Privacy-DeIdentification-Feb-23-Final-w-sig.pdf ID - ref13 ER - TY - JOUR AU - McGuire, A. L. AU - Oliver, J. M. AU - Slashinski, M. J. AU - Graves, J. L. AU - Wang, T. AU - Kelly, P. A. PY - 2011 DA - 2011// TI - To share or not to share: a randomized trial of consent for data sharing in genome research JO - Genet Med VL - 13 UR - https://doi.org/10.1097/GIM.0b013e3182227589 DO - 10.1097/GIM.0b013e3182227589 ID - McGuire2011 ER - TY - JOUR AU - Burstein, M. D. AU - Robinson, J. O. AU - Hilsenbeck, S. G. AU - McGuire, A. L. AU - Lau, C. C. PY - 2014 DA - 2014// TI - Pediatric data sharing in genomic research: attitudes and preferences of parents JO - Pediatrics VL - 133 UR - https://doi.org/10.1542/peds.2013-1592 DO - 10.1542/peds.2013-1592 ID - Burstein2014 ER - TY - JOUR AU - Shelton, R. H. PY - 2011 DA - 2011// TI - Electronic consent channels: preserving patient privacy without handcuffing researchers JO - Sci Transl Med VL - 3 UR - https://doi.org/10.1126/scitranslmed.3002037 DO - 10.1126/scitranslmed.3002037 ID - Shelton2011 ER - TY - JOUR AU - Kaye, J. AU - Whitley, E. A. AU - Lund, D. AU - Morrison, M. AU - Teare, H. AU - Melham, K. PY - 2015 DA - 2015// TI - Dynamic consent: a patient interface for twenty-first century research networks JO - Eur J Hum Genet VL - 23 UR - https://doi.org/10.1038/ejhg.2014.71 DO - 10.1038/ejhg.2014.71 ID - Kaye2015 ER - TY - JOUR AU - Horn, E. J. AU - Edwards, K. AU - Terry, S. F. PY - 2011 DA - 2011// TI - Engaging research participants and building trust JO - Genet Test Mol Biomarkers VL - 15 UR - https://doi.org/10.1089/gtmb.2011.1526 DO - 10.1089/gtmb.2011.1526 ID - Horn2011 ER - TY - STD TI - Moore v. Regents of the University of California, 51 Cal. 3d 120 (1990); 271 Cal. Rptr. 146; 793 P.2d 479 [https://www.courtlistener.com/opinion/2608931/moore-v-regents-of-university-of-california/] UR - https://www.courtlistener.com/opinion/2608931/moore-v-regents-of-university-of-california/ ID - ref19 ER - TY - STD TI - Greenberg v. Miami Children’s Hospital Res. Inst., Inc., 264 F. Supp. 2d 1064 (S.D. Fl. 2003) [https://www.courtlistener.com/opinion/2507167/greenberg-v-miami-childrens-hospital-res-inst-inc/] UR - https://www.courtlistener.com/opinion/2507167/greenberg-v-miami-childrens-hospital-res-inst-inc/ ID - ref20 ER - TY - STD TI - Washington University v. Catalona, 437 F. Supp. 2d 985 (E.D.Mo. 2006) [https://www.courtlistener.com/opinion/2492481/washington-university-v-catalona/] UR - https://www.courtlistener.com/opinion/2492481/washington-university-v-catalona/ ID - ref21 ER -