TY - STD TI - Decode genetics. http://www.decode.com/. UR - http://www.decode.com/ ID - ref1 ER - TY - JOUR AU - Gulcher, J. AU - Stefansson, K. PY - 1999 DA - 1999// TI - An Icelandic saga on a centralized healthcare database and democratic decision making JO - Nat Biotechnol VL - 17 UR - https://doi.org/10.1038/10796 DO - 10.1038/10796 ID - Gulcher1999 ER - TY - JOUR AU - Gudbjartsson, D. F. AU - Helgason, H. AU - Gudjonsson, S. A. AU - Zink, F. AU - Oddson, A. AU - Gylfason, A. PY - 2015 DA - 2015// TI - Large-scale whole-genome sequencing of the Icelandic population JO - Nat Genet VL - 47 UR - https://doi.org/10.1038/ng.3247 DO - 10.1038/ng.3247 ID - Gudbjartsson2015 ER - TY - STD TI - Genome England. http://genomicsengland.co.uk. UR - http://genomicsengland.co.uk ID - ref4 ER - TY - STD TI - Human Longevity. http://www.humanlongevity.com/. UR - http://www.humanlongevity.com/ ID - ref5 ER - TY - STD TI - Precision Medicine Initiative. http://www.nih.gov/precisionmedicine/. UR - http://www.nih.gov/precisionmedicine ID - ref6 ER - TY - JOUR AU - Cyranoski, D. PY - 2016 DA - 2016// TI - China embraces precision medicine on a massive scale JO - Nat News VL - 529 UR - https://doi.org/10.1038/529009a DO - 10.1038/529009a ID - Cyranoski2016 ER - TY - STD TI - Korean Reference Genome Project. http://152.99.75.168/KRGDB/menuPages/intro.jsp. UR - http://152.99.75.168/KRGDB/menuPages/intro.jsp ID - ref8 ER - TY - JOUR AU - Abu-Elmagd, M. AU - Assidi, M. AU - Schulten, H. -. J. AU - Dallol, A. AU - Pushparaj, P. N. AU - Ahmed, F. PY - 2015 DA - 2015// TI - Individualized medicine enabled by genomics in Saudi Arabia JO - BMC Merd Genomics VL - 8 UR - https://doi.org/10.1186/1755-8794-8-S1-S3 DO - 10.1186/1755-8794-8-S1-S3 ID - Abu-Elmagd2015 ER - TY - STD TI - Qatar BioBank. http://www.qatarbiobank.org.qa/media-center/event-detail?item=33&backArt=29. UR - http://www.qatarbiobank.org.qa/media-center/event-detail?item=33&backArt=29 ID - ref10 ER - TY - STD TI - The DNA law. Kuwait Times. 2016. http://news.kuwaittimes.net/website/the-dna-law/. Accessed 26 Feb 2017. UR - http://news.kuwaittimes.net/website/the-dna-law ID - ref11 ER - TY - JOUR AU - Nyholt, D. R. AU - Yu, C. -. E. AU - Visscher, P. M. PY - 2009 DA - 2009// TI - On Jim Watson’s APOE status: genetic information is hard to hide JO - Eur J Hum Genet VL - 17 UR - https://doi.org/10.1038/ejhg.2008.198 DO - 10.1038/ejhg.2008.198 ID - Nyholt2009 ER - TY - JOUR AU - El Emam, K. PY - 2011 DA - 2011// TI - Methods for the de-identification of electronic health records for genomic research JO - Genome Med VL - 3 UR - https://doi.org/10.1186/gm239 DO - 10.1186/gm239 ID - El Emam2011 ER - TY - BOOK AU - Gelfand, A. PY - 2012 DA - 2012// TI - Privacy and biomedical research: building a trust infrastructure ID - Gelfand2012 ER - TY - STD TI - Cassa CA, Schmidt B, Kohane IS, Mandl KD. My sister’s keeper?: genomic research and the identifiability of siblings. BMC Med Genomics. 2008;1. https://doi.org/10.1186/1755-8794-1-32. ID - ref15 ER - TY - JOUR AU - Naveed, M. AU - Ayday, E. AU - Clayton, E. W. AU - Fellay, J. AU - Gunter, C. A. AU - Hubaux, J. -. P. PY - 2015 DA - 2015// TI - Privacy in the genomic era JO - ACM Comput Surv CSUR VL - 48 ID - Naveed2015 ER - TY - JOUR AU - Dankar, F. K. AU - Al-Ali, R. PY - 2016 DA - 2016// TI - Building of a large scale de-identified biomedical database in Qatar—principles and challenges JO - Qatar Found Annu Res Conf Proc VL - 2016 ID - Dankar2016 ER - TY - STD TI - McCarty CA, Chisholm RL, Chute CG, Kullo IJ, Jarvik GP, Larson EB, et al. The eMERGE network: a consortium of biorepositories linked to electronic medical records data for conducting genomic studies. BMC Med Genomics. 2011;4:13. ID - ref18 ER - TY - JOUR AU - Roden, D. M. AU - Pulley, J. M. AU - Basford, M. A. AU - Bernard, G. R. AU - Clayton, E. W. AU - Balser, J. R. PY - 2008 DA - 2008// TI - Development of a large-scale de-identified DNA biobank to enable personalized medicine JO - Clin Pharmacol Ther VL - 84 UR - https://doi.org/10.1038/clpt.2008.89 DO - 10.1038/clpt.2008.89 ID - Roden2008 ER - TY - STD TI - All About The Human Genome Project (HGP). National Human Genome Research Institute (NHGRI). https://www.genome.gov/10001772/All-About-The%2D-Human-Genome-Project-HGP. Accessed 26 Feb 2017. UR - https://www.genome.gov/10001772/All-About-The%2D-Human-Genome-Project-HGP ID - ref20 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 - McGuire, A. L. AU - Hamilton, J. A. AU - Lunstroth, R. AU - McCullough, L. B. AU - Goldman, A. PY - 2008 DA - 2008// TI - DNA data sharing: research participants’ perspectives JO - Genet Med. VL - 10 UR - https://doi.org/10.1097/GIM.0b013e31815f1e00 DO - 10.1097/GIM.0b013e31815f1e00 ID - McGuire2008 ER - TY - JOUR AU - Oliver, J. M. AU - Slashinski, M. J. AU - Wang, T. AU - Kelly, P. A. AU - Hilsenbeck, S. G. AU - McGuire, A. L. PY - 2011 DA - 2011// TI - Balancing the risks and benefits of genomic data sharing: genome research participants’ perspectives JO - Public Health Genomics. VL - 15 UR - https://doi.org/10.1159/000334718 DO - 10.1159/000334718 ID - Oliver2011 ER - TY - CHAP AU - Abokhodair, N. AU - Vieweg, S. PY - 2016 DA - 2016// TI - Privacy & social media in the context of the Arab Gulf BT - Proceedings of the 2016 ACM Conference on Designing Interactive Systems PB - ACM CY - New York ID - Abokhodair2016 ER - TY - STD TI - Hubbard T. HPC infrastructure at King’s College London and Genomics England. In: Farr-ADRN-MB eInfrastructure Workshop. 2015. ID - ref25 ER - TY - CHAP AU - Leitsalu, L. AU - Metspalu, A. ED - Ginsburg, G. S. ED - Willard, H. F. PY - 2017 DA - 2017// TI - Chapter 8—from biobanking to precision medicine: the Estonian experience BT - Genomic and precision medicine PB - Academic Press CY - Boston UR - https://doi.org/10.1016/B978-0-12-800681-8.00008-6 DO - 10.1016/B978-0-12-800681-8.00008-6 ID - Leitsalu2017 ER - TY - STD TI - Abouelhoda M. The informatics side of the Saudi human genome project. In: GenoME. 2016. ID - ref27 ER - TY - STD TI - Ayday E, Cristofaro ED, Hubaux JP, Tsudik G. The Chills and Thrills of Whole Genome Sequencing. IEEE Computer Magazine; 2013. ID - ref28 ER - TY - JOUR AU - Wang, S. AU - Jiang, X. AU - Singh, S. AU - Marmor, R. AU - Bonomi, L. AU - Fox, D. PY - 2017 DA - 2017// TI - Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States JO - Ann N Y Acad Sci VL - 1387 UR - https://doi.org/10.1111/nyas.13259 DO - 10.1111/nyas.13259 ID - Wang2017 ER - TY - STD TI - ExAC Browser. http://exac.broadinstitute.org/about. Accessed 6 Mar 2018. UR - http://exac.broadinstitute.org/about ID - ref30 ER - TY - JOUR AU - Check Hayden, E. PY - 2013 DA - 2013// TI - Privacy protections: the genome hacker JO - Nature VL - 497 UR - https://doi.org/10.1038/497172a DO - 10.1038/497172a ID - Check Hayden2013 ER - TY - JOUR AU - Gymrek, M. AU - McGuire, A. L. AU - Golan, D. AU - Halperin, E. AU - Erlich, Y. PY - 2013 DA - 2013// TI - Identifying personal genomes by surname inference JO - Science VL - 339 UR - https://doi.org/10.1126/science.1229566 DO - 10.1126/science.1229566 ID - Gymrek2013 ER - TY - BOOK AU - Sweeney, L. AU - Abu, A. AU - Winn, J. PY - 2013 DA - 2013// TI - Identifying participants in the personal genome project by name ID - Sweeney2013 ER - TY - JOUR AU - Homer, N. AU - Szelinger, S. AU - Redman, M. AU - Duggan, D. AU - Tembe, W. AU - Muehling, J. PY - 2008 DA - 2008// TI - Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays JO - PLoS Genet VL - 4 UR - https://doi.org/10.1371/journal.pgen.1000167 DO - 10.1371/journal.pgen.1000167 ID - Homer2008 ER - TY - STD TI - Malin B, Cassa C, Kantarcioglu M. A survey of challenges and solutions for privacy in clinical genomics data mining. In: Bonchi F, Ferrari E, editors. Privacy-Preserving Knowledge Discovery. New York: Chapman & Hall/CRC Press; 2011. ID - ref35 ER - TY - STD TI - Federal policy for the protection of human subjects (‘Common Rule’). http://www.hhs.gov/ohrp/humansubjects/commonrule/. UR - http://www.hhs.gov/ohrp/humansubjects/commonrule ID - ref36 ER - TY - STD TI - Sweeney L. Data sharing under HIPAA: 12 years later. In: Workshop on the HIPAA Privacy Rule’s de-identification standard. 2010. ID - ref37 ER - TY - STD TI - U.S. Department of Health & Human Services. http://www.hhs.gov/. Accessed 22 Sept 2015. UR - http://www.hhs.gov/ ID - ref38 ER - TY - STD TI - European Data Protection Directive. https://ico.org.uk/media/about-the-ico/documents/1042349/review-of-eu-dp-directive.pdf. UR - https://ico.org.uk/media/about-the-ico/documents/1042349/review-of-eu-dp-directive.pdf ID - ref39 ER - TY - JOUR AU - Murphy, S. N. AU - Weber, G. AU - Mendis, M. AU - Gainer, V. AU - Chueh, H. C. AU - Churchill, S. PY - 2010 DA - 2010// TI - Serving the enterprise and beyond with informatics for integrating biology and the bedside (i2b2) JO - J Am Med Inform Assoc JAMIA VL - 17 UR - https://doi.org/10.1136/jamia.2009.000893 DO - 10.1136/jamia.2009.000893 ID - Murphy2010 ER - TY - JOUR AU - Wolf, L. E. AU - Walden, J. F. AU - Lo, B. PY - 2005 DA - 2005// TI - Human subjects issues and IRB review in practice-based research JO - Ann Fam Med VL - 3 UR - https://doi.org/10.1370/afm.302 DO - 10.1370/afm.302 ID - Wolf2005 ER - TY - JOUR AU - Graham, D. G. AU - Spano, M. S. AU - Manning, B. PY - 2007 DA - 2007// TI - The IRB challenge for practice-based research: strategies of the American Academy of Family Physicians National Research Network (AAFP NRN) JO - J Am Board Fam Med VL - 20 UR - https://doi.org/10.3122/jabfm.2007.02.060110 DO - 10.3122/jabfm.2007.02.060110 ID - Graham2007 ER - TY - JOUR AU - He, S. AU - Narus, S. P. AU - Facelli, J. C. AU - Lau, L. M. AU - Botkin, J. R. AU - Hurdle, J. F. PY - 2014 DA - 2014// TI - A domain analysis model for eIRB systems: addressing the weak link in clinical research informatics JO - J Biomed Inform VL - 52 UR - https://doi.org/10.1016/j.jbi.2014.05.003 DO - 10.1016/j.jbi.2014.05.003 ID - He2014 ER - TY - JOUR AU - Silberman, G. AU - Kahn, K. L. PY - 2011 DA - 2011// TI - Burdens on research imposed by institutional review boards: the state of the evidence and its implications for regulatory reform JO - Milbank Q VL - 89 UR - https://doi.org/10.1111/j.1468-0009.2011.00644.x DO - 10.1111/j.1468-0009.2011.00644.x ID - Silberman2011 ER - TY - JOUR AU - Appelbaum, P. S. AU - Waldman, C. R. AU - Fyer, A. AU - Klitzman, R. AU - Parens, E. AU - Martinez, J. PY - 2013 DA - 2013// TI - Informed consent for return of incidental findings in genomic research JO - Genet Med VL - 16 UR - https://doi.org/10.1038/gim.2013.145 DO - 10.1038/gim.2013.145 ID - Appelbaum2013 ER - TY - STD TI - Ohno-Machado L, Bafna V, Boxwala AA, Chapman BE, Chapman WW, Chaudhuri K, et al. iDASH: integrating data for analysis, anonymization, and sharing. J Am Med Inform Assoc. 2011;19(2):196-201. ID - ref46 ER - TY - JOUR AU - Whitley, E. A. AU - Kanellopoulou, N. AU - Kaye, J. PY - 2012 DA - 2012// TI - Consent and research governance in biobanks: evidence from focus groups with medical researchers JO - Public Health Genomics VL - 15 UR - https://doi.org/10.1159/000336544 DO - 10.1159/000336544 ID - Whitley2012 ER - TY - STD TI - Steinsbekk KS, Myskja BK are, Solberg B. Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem? Eur J Hum Genet 2013;21:897–902. ID - ref48 ER - TY - STD TI - Goetz T. 23andMe will decode your DNA for $1,000: welcome to the age of genomics. Wired Mag. 2007. http://davehakes.com/weblog/wp-content/uploads/2007/11/11-17-07_wired_welcome_to_the_age_of_genomics.pdf. Accessed 26 Feb 2017. UR - http://davehakes.com/weblog/wp-content/uploads/2007/11/11-17-07_wired_welcome_to_the_age_of_genomics.pdf ID - ref49 ER - TY - JOUR AU - McGuire, A. L. AU - Beskow, L. M. PY - 2010 DA - 2010// TI - Informed consent in genomics and genetic research JO - Annu Rev Genomics Hum Genet VL - 11 UR - https://doi.org/10.1146/annurev-genom-082509-141711 DO - 10.1146/annurev-genom-082509-141711 ID - McGuire2010 ER - TY - STD TI - Grady, C. Enduring and emerging challenges of informed consent. New Engl J Med. 2015;372(9):855-62. ID - ref51 ER - TY - JOUR AU - Dankar, F. K. AU - Badji, R. PY - 2017 DA - 2017// TI - A risk-based framework for biomedical data sharing JO - J Biomed Inform VL - 66 UR - https://doi.org/10.1016/j.jbi.2017.01.012 DO - 10.1016/j.jbi.2017.01.012 ID - Dankar2017 ER - TY - STD TI - Adams A. The implications of users’ multimedia privacy perceptions on communication and information privacy policies. In: Proceedings of Telecommunications Policy Research Conference. 1999. http://www.researchgate.net/profile/Anne_Adams4/publication/228641284_The_Implications_of_Users’_Multimedia_Privacy_Perceptions_on_Communication_and_Information_Privacy_Policies/links/0046352a751ad9c417000000.pdf. Accessed 14 Jun 2015. UR - http://www.researchgate.net/profile/Anne_Adams4/publication/228641284_The_Implications_of_Users%E2%80%99_Multimedia_Privacy_Perceptions_on_Communication_and_Information_Privacy_Policies/links/0046352a751ad9c417000000.pdf ID - ref53 ER - TY - BOOK AU - Lederer, S. AU - Dey, A. K. AU - Mankoff, J. PY - 2002 DA - 2002// TI - A conceptual model and a metaphor of everyday privacy in ubiquitous PB - University of California at Berkeley CY - Berkeley ID - Lederer2002 ER - TY - JOUR AU - Lessig, L. PY - 1999 DA - 1999// TI - Architecture of privacy JO - The Vand J Ent Pr VL - 1 ID - Lessig1999 ER - TY - STD TI - Barker K, Askari M, Banerjee M, Ghazinour K, Mackas B, Majedi M, et al. A data privacy taxonomy. In: Dataspace: the final frontier. Springer; 2009. p. 42–54. http://link.springer.com/chapter/10.1007/978-3-642-02843-4_7. Accessed 7 Jul 2015. UR - http://link.springer.com/chapter/10.1007/978-3-642-02843-4_7 ID - ref56 ER - TY - STD TI - Banerjee M, Adl RK, Wu L, Barker K. Quantifying privacy violations. In: Secure data management. Springer; 2011. p. 1–17. http://link.springer.com/chapter/10.1007/978-3-642-23556-6_1. Accessed 7 Jul 2015. UR - http://link.springer.com/chapter/10.1007/978-3-642-23556-6_1 ID - ref57 ER - TY - JOUR AU - El Emam, K. AU - Dankar, F. K. AU - Vaillancourt, R. AU - Roffey, T. AU - Lysyk, M. PY - 2009 DA - 2009// TI - Evaluating the risk of re-identification of patients from hospital prescription records JO - Can J Hosp Pharm VL - 62 ID - El Emam2009 ER - TY - JOUR AU - El Emam, K. PY - 2010 DA - 2010// TI - Risk-based de-identification of health data JO - IEEE Secur Priv VL - 8 UR - https://doi.org/10.1109/MSP.2010.103 DO - 10.1109/MSP.2010.103 ID - El Emam2010 ER - TY - STD TI - El Emam K, Jonker E, Fineberg A. The case for de-identifying personal health information. Soc Sci Res Netw. 2011. http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1744038. Accessed 18 Sep 2012. UR - http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1744038 ID - ref60 ER - TY - JOUR AU - Dankar, F. K. AU - El Emam, K. AU - Neisa, A. AU - Roffey, T. PY - 2012 DA - 2012// TI - Estimating the re-identification risk of clinical data sets JO - BMC Med Inform Decis Mak VL - 12 UR - https://doi.org/10.1186/1472-6947-12-66 DO - 10.1186/1472-6947-12-66 ID - Dankar2012 ER - TY - JOUR AU - El Emam, K. AU - Dankar, F. K. AU - Neisa, A. AU - Jonker, E. PY - 2013 DA - 2013// TI - Evaluating the risk of patient re-identification from adverse drug event reports JO - BMC Med Inform Decis Mak. VL - 13 UR - https://doi.org/10.1186/1472-6947-13-114 DO - 10.1186/1472-6947-13-114 ID - El Emam2013 ER - TY - JOUR AU - Dankar, F. K. AU - Al-Ali, R. PY - 2015 DA - 2015// TI - A theoretical multi-level privacy protection framework for biomedical data warehouses JO - Procedia Comput Sci VL - 63 UR - https://doi.org/10.1016/j.procs.2015.08.386 DO - 10.1016/j.procs.2015.08.386 ID - Dankar2015 ER - TY - CHAP AU - Cogo, V. V. AU - Bessani, A. AU - Couto, F. M. AU - Verissimo, P. PY - 2015 DA - 2015// TI - A high-throughput method to detect privacy-sensitive human genomic data BT - Proceedings of the 14th ACM Workshop on Privacy in the Electronic Society PB - ACM CY - New York ID - Cogo2015 ER - TY - STD TI - Dyke SO, Dove ES, Knoppers BM. Sharing health-related data: a privacy test? Npj Genomic Med 2016;1:16024. ID - ref65 ER - TY - STD TI - Dankar F, Brien R, Adams C, Matwin S. Secure multi-party linear regression. In: EDBT/ICDT workshops. 2014. p. 406–414. http://ceur-ws.org/Vol-1133/paper-68.pdf. Accessed 14 Jan 2015. UR - http://ceur-ws.org/Vol-1133/paper-68.pdf ID - ref66 ER - TY - JOUR AU - Dankar, F. PY - 2015 DA - 2015// TI - Privacy preserving linear regression on distributed databases JO - Trans Data Priv VL - 8 ID - Dankar2015 ER - TY - STD TI - Ugwuoke C, Erkin Z, Lagendijk I. A Privacy-Preserving GWAS Computation with Homomorphic Encryption. 37th WIC Symposium on Information Theory in the Benelux/6th WIC/IEEE SP Symposium on Information Theory and Signal Processing in the Benelux, Louvain, Belgium. 2016. p. 166-73. https://pure.tudelft.nl/portal/files/11312239/11312198.pdf. UR - https://pure.tudelft.nl/portal/files/11312239/11312198.pdf ID - ref68 ER - TY - JOUR AU - Kamm, L. AU - Bogdanov, D. AU - Laur, S. AU - Vilo, J. PY - 2013 DA - 2013// TI - A new way to protect privacy in large-scale genome-wide association studies JO - Bioinformatics VL - 29 UR - https://doi.org/10.1093/bioinformatics/btt066 DO - 10.1093/bioinformatics/btt066 ID - Kamm2013 ER - TY - STD TI - Wagner J, Paulson JN, Wang X, Bhattacharjee B, Corrada Bravo H. Privacy-preserving microbiome analysis using secure computation. Bioinformatics. 2016;32(12):1873-9. ID - ref70 ER - TY - JOUR AU - Lindell, Y. AU - Pinkas, B. PY - 2009 DA - 2009// TI - Secure multiparty computation for privacy-preserving data mining JO - J Priv Confidentiality VL - 1 ID - Lindell2009 ER - TY - CHAP AU - de, C. M. AU - Dowsley, R. AU - Nascimento, A. C. A. AU - Newman, S. C. PY - 2015 DA - 2015// TI - Fast, privacy preserving linear regression over distributed datasets based on pre-distributed data BT - Proceedings of the 8th ACM Workshop on Artificial Intelligence and Security PB - ACM CY - New York ID - de2015 ER - TY - STD TI - Dankar FK, Boughorbel S, Badji R. Using robust estimation theory to design efficient secure multiparty linear regression. In: Proceedings of the 2016 Joint EDBT/ICDT Workshops. 2016. http://ceur-ws.org/Vol-1558/paper33.pdf. Accessed 9 Sept 2016. UR - http://ceur-ws.org/Vol-1558/paper33.pdf ID - ref73 ER - TY - JOUR AU - Rebbeck, T. R. AU - Friebel, T. AU - Lynch, H. T. AU - Neuhausen, S. L. AU - van’t Veer, L. AU - Garber, J. E. PY - 2004 DA - 2004// TI - Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: the PROSE study group JO - J Clin Oncol VL - 22 UR - https://doi.org/10.1200/JCO.2004.04.188 DO - 10.1200/JCO.2004.04.188 ID - Rebbeck2004 ER - TY - JOUR AU - Domchek, S. M. AU - Friebel, T. M. AU - Singer, C. F. AU - Evans, D. G. AU - Lynch, H. T. AU - Isaacs, C. PY - 2010 DA - 2010// TI - Association of risk-reducing surgery in BRCA1 or BRCA2 mutation carriers with cancer risk and mortality JO - JAMA VL - 304 UR - https://doi.org/10.1001/jama.2010.1237 DO - 10.1001/jama.2010.1237 ID - Domchek2010 ER - TY - JOUR AU - Hartmann, L. C. AU - Schaid, D. J. AU - Woods, J. E. AU - Crotty, T. P. AU - Myers, J. L. AU - Arnold, P. G. PY - 1999 DA - 1999// TI - Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer JO - N Engl J Med VL - 340 UR - https://doi.org/10.1056/NEJM199901143400201 DO - 10.1056/NEJM199901143400201 ID - Hartmann1999 ER - TY - JOUR AU - Terry, S. F. PY - 2013 DA - 2013// TI - Don’t just invite us to the table: authentic community engagement JO - Genet Test Mol Biomark VL - 17 UR - https://doi.org/10.1089/gtmb.2013.1545 DO - 10.1089/gtmb.2013.1545 ID - Terry2013 ER - TY - JOUR AU - Dresser, R. PY - 2014 DA - 2014// TI - Public preferences and the challenge to genetic research policy JO - J Law Biosci VL - 1 UR - https://doi.org/10.1093/jlb/lst001 DO - 10.1093/jlb/lst001 ID - Dresser2014 ER -