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Items: 19

1.

Study newsletters, community and ethics advisory boards, and focus group discussions provide ongoing feedback for a large biobank.

McCarty CA, Garber A, Reeser JC, Fost NC; Personalized Medicine Research Project Community Advisory Group and Ethics and Security Advisory Board.

Am J Med Genet A. 2011 Apr;155A(4):737-41. doi: 10.1002/ajmg.a.33896. Epub 2011 Mar 15.

2.

The eMERGE Network: a consortium of biorepositories linked to electronic medical records data for conducting genomic studies.

McCarty CA, Chisholm RL, Chute CG, Kullo IJ, Jarvik GP, Larson EB, Li R, Masys DR, Ritchie MD, Roden DM, Struewing JP, Wolf WA; eMERGE Team.

BMC Med Genomics. 2011 Jan 26;4:13. doi: 10.1186/1755-8794-4-13.

3.

Research ethics. Research practice and participant preferences: the growing gulf.

Trinidad SB, Fullerton SM, Ludman EJ, Jarvik GP, Larson EB, Burke W.

Science. 2011 Jan 21;331(6015):287-8. doi: 10.1126/science.1199000. No abstract available.

4.

Never too old for anonymity: a statistical standard for demographic data sharing via the HIPAA Privacy Rule.

Malin B, Benitez K, Masys D.

J Am Med Inform Assoc. 2011 Jan-Feb;18(1):3-10. doi: 10.1136/jamia.2010.004622.

5.

The paradoxical problem with multiple-IRB review.

Menikoff J.

N Engl J Med. 2010 Oct 21;363(17):1591-3. doi: 10.1056/NEJMp1005101. Epub 2010 Oct 13. No abstract available.

PMID:
20942660
6.

Glad you asked: participants' opinions of re-consent for dbGap data submission.

Ludman EJ, Fullerton SM, Spangler L, Trinidad SB, Fujii MM, Jarvik GP, Larson EB, Burke W.

J Empir Res Hum Res Ethics. 2010 Sep;5(3):9-16. doi: 10.1525/jer.2010.5.3.9.

7.

Leveraging informatics for genetic studies: use of the electronic medical record to enable a genome-wide association study of peripheral arterial disease.

Kullo IJ, Fan J, Pathak J, Savova GK, Ali Z, Chute CG.

J Am Med Inform Assoc. 2010 Sep-Oct;17(5):568-74. doi: 10.1136/jamia.2010.004366.

8.

Public and biobank participant attitudes toward genetic research participation and data sharing.

Lemke AA, Wolf WA, Hebert-Beirne J, Smith ME.

Public Health Genomics. 2010;13(6):368-77. doi: 10.1159/000276767. Epub 2010 Jan 15.

9.

Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium.

Clayton EW, Smith M, Fullerton SM, Burke W, McCarty CA, Koenig BA, McGuire AL, Beskow LM, Dressler L, Lemke AA, Ramos EM, Rodriguez LL; Consent and Community Consultation Working Group of the eMERGE Consortium.

Genet Med. 2010 Oct;12(10):616-20. doi: 10.1097/GIM.0b013e3181efdbd0. No abstract available.

10.

Genomic research and wide data sharing: views of prospective participants.

Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W.

Genet Med. 2010 Aug;12(8):486-95. doi: 10.1097/GIM.0b013e3181e38f9e.

11.

Evaluating re-identification risks with respect to the HIPAA privacy rule.

Benitez K, Malin B.

J Am Med Inform Assoc. 2010 Mar-Apr;17(2):169-77. doi: 10.1136/jamia.2009.000026.

12.

Technical and policy approaches to balancing patient privacy and data sharing in clinical and translational research.

Malin B, Karp D, Scheuermann RH.

J Investig Med. 2010 Jan;58(1):11-8. doi: 10.2310/JIM.0b013e3181c9b2ea.

13.

Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays.

Homer N, Szelinger S, Redman M, Duggan D, Tembe W, Muehling J, Pearson JV, Stephan DA, Nelson SF, Craig DW.

PLoS Genet. 2008 Aug 29;4(8):e1000167. doi: 10.1371/journal.pgen.1000167.

14.

Development of a large-scale de-identified DNA biobank to enable personalized medicine.

Roden DM, Pulley JM, Basford MA, Bernard GR, Clayton EW, Balser JR, Masys DR.

Clin Pharmacol Ther. 2008 Sep;84(3):362-9. doi: 10.1038/clpt.2008.89. Epub 2008 May 21.

15.

The NCBI dbGaP database of genotypes and phenotypes.

Mailman MD, Feolo M, Jin Y, Kimura M, Tryka K, Bagoutdinov R, Hao L, Kiang A, Paschall J, Phan L, Popova N, Pretel S, Ziyabari L, Lee M, Shao Y, Wang ZY, Sirotkin K, Ward M, Kholodov M, Zbicz K, Beck J, Kimelman M, Shevelev S, Preuss D, Yaschenko E, Graeff A, Ostell J, Sherry ST.

Nat Genet. 2007 Oct;39(10):1181-6.

16.

Genetics. No longer de-identified.

McGuire AL, Gibbs RA.

Science. 2006 Apr 21;312(5772):370-1. No abstract available.

PMID:
16627725
17.

Health-information altruists--a potentially critical resource.

Kohane IS, Altman RB.

N Engl J Med. 2005 Nov 10;353(19):2074-7. No abstract available.

PMID:
16282184
18.

Genetics. Genomic research and human subject privacy.

Lin Z, Owen AB, Altman RB.

Science. 2004 Jul 9;305(5681):183. No abstract available.

PMID:
15247459
19.

Dementia and Alzheimer disease incidence: a prospective cohort study.

Kukull WA, Higdon R, Bowen JD, McCormick WC, Teri L, Schellenberg GD, van Belle G, Jolley L, Larson EB.

Arch Neurol. 2002 Nov;59(11):1737-46.

PMID:
12433261

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