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Biomedical Big Data: New Models of Control Over Access, Use and Governance.

Vayena E, Blasimme A.

J Bioeth Inq. 2017 Dec;14(4):501-513. doi: 10.1007/s11673-017-9809-6. Epub 2017 Oct 5.


Variation among Consent Forms for Clinical Whole Exome Sequencing.

Fowler SA, Saunders CJ, Hoffman MA.

J Genet Couns. 2018 Feb;27(1):104-114. doi: 10.1007/s10897-017-0127-2. Epub 2017 Jul 8.


Quickly identifying identical and closely related subjects in large databases using genotype data.

Jin Y, Schäffer AA, Sherry ST, Feolo M.

PLoS One. 2017 Jun 13;12(6):e0179106. doi: 10.1371/journal.pone.0179106. eCollection 2017.


Moving beyond Bermuda: sharing data to build a medical information commons.

Cook-Deegan R, McGuire AL.

Genome Res. 2017 Jun;27(6):897-901. doi: 10.1101/gr.216911.116. Epub 2017 Apr 3.


Genomic sequencing in clinical practice: applications, challenges, and opportunities.

Krier JB, Kalia SS, Green RC.

Dialogues Clin Neurosci. 2016 Sep;18(3):299-312. Review.


The Virtuous Cycle of a Data Ecosystem.

Voytek B.

PLoS Comput Biol. 2016 Aug 4;12(8):e1005037. doi: 10.1371/journal.pcbi.1005037. eCollection 2016 Aug. No abstract available.


Rare disease research: Breaking the privacy barrier.

Mascalzoni D, Paradiso A, Hansson M.

Appl Transl Genom. 2014 Apr 18;3(2):23-9. doi: 10.1016/j.atg.2014.04.003. eCollection 2014 Jun 1.


The risk of re-identification versus the need to identify individuals in rare disease research.

Hansson MG, Lochmüller H, Riess O, Schaefer F, Orth M, Rubinstein Y, Molster C, Dawkins H, Taruscio D, Posada M, Woods S.

Eur J Hum Genet. 2016 Nov;24(11):1553-1558. doi: 10.1038/ejhg.2016.52. Epub 2016 May 25.


An open access pilot freely sharing cancer genomic data from participants in Texas.

Becnel LB, Pereira S, Drummond JA, Gingras MC, Covington KR, Kovar CL, Doddapaneni HV, Hu J, Muzny D, McGuire AL, Wheeler DA, Gibbs RA.

Sci Data. 2016 Feb 16;3:160010. doi: 10.1038/sdata.2016.10.


Improving the informed consent process in international collaborative rare disease research: effective consent for effective research.

Gainotti S, Turner C, Woods S, Kole A, McCormack P, Lochmüller H, Riess O, Straub V, Posada M, Taruscio D, Mascalzoni D.

Eur J Hum Genet. 2016 Aug;24(9):1248-54. doi: 10.1038/ejhg.2016.2. Epub 2016 Feb 10.


Securely measuring the overlap between private datasets with cryptosets.

Swamidass SJ, Matlock M, Rozenblit L.

PLoS One. 2015 Feb 25;10(2):e0117898. doi: 10.1371/journal.pone.0117898. eCollection 2015.


Neglected ethical issues in biobank management: Results from a U.S. study.

Cadigan RJ, Lassiter D, Haldeman K, Conlon I, Reavely E, Henderson GE.

Life Sci Soc Policy. 2013 Dec 1;9(1):1.


International Charter of principles for sharing bio-specimens and data.

Mascalzoni D, Dove ES, Rubinstein Y, Dawkins HJ, Kole A, McCormack P, Woods S, Riess O, Schaefer F, Lochmüller H, Knoppers BM, Hansson M.

Eur J Hum Genet. 2015 Jun;23(6):721-8. doi: 10.1038/ejhg.2014.197. Epub 2014 Sep 24. Erratum in: Eur J Hum Genet. 2016 Jul;24(7):1096.


Open access data sharing in genomic research.

Pereira S, Gibbs RA, McGuire AL.

Genes (Basel). 2014 Aug 29;5(3):739-47. doi: 10.3390/genes5030739.


Practical barriers and ethical challenges in genetic data sharing.

Simpson CL, Goldenberg AJ, Culverhouse R, Daley D, Igo RP, Jarvik GP, Mandal DM, Mascalzoni D, Montgomery CG, Pierce B, Plaetke R, Shete S, Goddard KA, Stein CM.

Int J Environ Res Public Health. 2014 Aug 15;11(8):8383-98. doi: 10.3390/ijerph110808383.


Genomic research with the newly dead: a crossroads for ethics and policy.

Walker RL, Juengst ET, Whipple W, Davis AM.

J Law Med Ethics. 2014 Summer;42(2):220-31. doi: 10.1111/jlme.12137.


Attitudes regarding privacy of genomic information in personalized cancer therapy.

Rogith D, Yusuf RA, Hovick SR, Peterson SK, Burton-Chase AM, Li Y, Meric-Bernstam F, Bernstam EV.

J Am Med Inform Assoc. 2014 Oct;21(e2):e320-5. doi: 10.1136/amiajnl-2013-002579. Epub 2014 Apr 15.


Bodies of Data: Genomic Data and Bioscience Data Sharing.

Ossorio PN.

Soc Res (New York). 2011 Fall;78(3):907-932. No abstract available.

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