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Items: 1 to 20 of 159

1.

The tension between data sharing and the protection of privacy in genomics research.

Kaye J.

Annu Rev Genomics Hum Genet. 2012;13:415-31. doi: 10.1146/annurev-genom-082410-101454. Epub 2012 Mar 9. Review.

2.

Ethical and legal implications of whole genome and whole exome sequencing in African populations.

Wright GE, Koornhof PG, Adeyemo AA, Tiffin N.

BMC Med Ethics. 2013 May 28;14:21. doi: 10.1186/1472-6939-14-21.

3.

Sampling populations of humans across the world: ELSI issues.

Knoppers BM, Zawati MH, Kirby ES.

Annu Rev Genomics Hum Genet. 2012;13:395-413. doi: 10.1146/annurev-genom-090711-163834. Epub 2012 Mar 8. Review.

PMID:
22404491
4.

Genomic research data: open vs. restricted access.

Resnik DB.

IRB. 2010 Jan-Feb;32(1):1-6. No abstract available.

5.

Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries.

de Vries J, Munung SN, Matimba A, McCurdy S, Ouwe Missi Oukem-Boyer O, Staunton C, Yakubu A, Tindana P; H3Africa Consortium.

BMC Med Ethics. 2017 Feb 2;18(1):8. doi: 10.1186/s12910-016-0165-6.

6.

Balancing the risks and benefits of genomic data sharing: genome research participants' perspectives.

Oliver JM, Slashinski MJ, Wang T, Kelly PA, Hilsenbeck SG, McGuire AL.

Public Health Genomics. 2012;15(2):106-14. doi: 10.1159/000334718. Epub 2011 Dec 30.

7.

To share or not to share: a randomized trial of consent for data sharing in genome research.

McGuire AL, Oliver JM, Slashinski MJ, Graves JL, Wang T, Kelly PA, Fisher W, Lau CC, Goss J, Okcu M, Treadwell-Deering D, Goldman AM, Noebels JL, Hilsenbeck SG.

Genet Med. 2011 Nov;13(11):948-55. doi: 10.1097/GIM.0b013e3182227589.

8.

Are Data Sharing and Privacy Protection Mutually Exclusive?

Joly Y, Dyke SOM, Knoppers BM, Pastinen T.

Cell. 2016 Nov 17;167(5):1150-1154. doi: 10.1016/j.cell.2016.11.004.

9.

Ethical norms and the international governance of genetic databases and biobanks: findings from an international study.

Capron AM, Mauron A, Elger BS, Boggio A, Ganguli-Mitra A, Biller-Andorno N.

Kennedy Inst Ethics J. 2009 Jun;19(2):101-24.

PMID:
19623818
10.
11.

Trends in ethical and legal frameworks for the use of human biobanks.

Cambon-Thomsen A, Rial-Sebbag E, Knoppers BM.

Eur Respir J. 2007 Aug;30(2):373-82.

12.

Informed consent, and an ethico-legal framework for paediatric observational research and biobanking: the experience of an Italian birth cohort study.

Toccaceli V, Serino L, Stazi MA.

Cell Tissue Bank. 2014 Dec;15(4):579-90. doi: 10.1007/s10561-014-9431-3. Epub 2014 Mar 5. Erratum in: Cell Tissue Bank. 2016 Sep;17(3):541.

PMID:
24595523
13.

Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.

Sanderson SC, Brothers KB, Mercaldo ND, Clayton EW, Antommaria AHM, Aufox SA, Brilliant MH, Campos D, Carrell DS, Connolly J, Conway P, Fullerton SM, Garrison NA, Horowitz CR, Jarvik GP, Kaufman D, Kitchner TE, Li R, Ludman EJ, McCarty CA, McCormick JB, McManus VD, Myers MF, Scrol A, Williams JL, Shrubsole MJ, Schildcrout JS, Smith ME, Holm IA.

Am J Hum Genet. 2017 Mar 2;100(3):414-427. doi: 10.1016/j.ajhg.2017.01.021. Epub 2017 Feb 9.

14.

Privacy, anonymity and subjectivity in genomic research.

McGonigle I, Shomron N.

Genet Res (Camb). 2016 Jan 14;98:e2. doi: 10.1017/S0016672315000221.

PMID:
26763729
15.

Patients would benefit from simplified ethical review and consent procedure.

Hansson MG, van Ommen GJ, Chadwick R, Dillner J.

Lancet Oncol. 2013 May;14(6):451-3. doi: 10.1016/S1470-2045(13)70129-3. Epub 2013 Mar 21. No abstract available.

PMID:
23522924
16.

Challenges in biobank governance in Sub-Saharan Africa.

Staunton C, Moodley K.

BMC Med Ethics. 2013 Sep 11;14:35. doi: 10.1186/1472-6939-14-35. Review.

17.

Broadening consent--and diluting ethics?

Hofmann B.

J Med Ethics. 2009 Feb;35(2):125-9. doi: 10.1136/jme.2008.024851.

PMID:
19181887
18.

[Ethical issues in personal genome research].

Kato K, Minari J.

Brain Nerve. 2013 Mar;65(3):267-72. Review. Japanese.

PMID:
23475518
19.

International Guidelines for Privacy in Genomic Biobanking (or the Unexpected Virtue of Pluralism).

Thorogood A, Zawati MH.

J Law Med Ethics. 2015 Winter;43(4):690-702. doi: 10.1111/jlme.12312.

PMID:
26711410
20.

Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States.

Wang S, Jiang X, Singh S, Marmor R, Bonomi L, Fox D, Dow M, Ohno-Machado L.

Ann N Y Acad Sci. 2017 Jan;1387(1):73-83. doi: 10.1111/nyas.13259. Epub 2016 Sep 28. Review.

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