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Items: 1 to 20 of 101

1.

Registered access: authorizing data access.

Dyke SOM, Linden M, Lappalainen I, De Argila JR, Carey K, Lloyd D, Spalding JD, Cabili MN, Kerry G, Foreman J, Cutts T, Shabani M, Rodriguez LL, Haeussler M, Walsh B, Jiang X, Wang S, Perrett D, Boughtwood T, Matern A, Brookes AJ, Cupak M, Fiume M, Pandya R, Tulchinsky I, Scollen S, Törnroos J, Das S, Evans AC, Malin BA, Beck S, Brenner SE, Nyrönen T, Blomberg N, Firth HV, Hurles M, Philippakis AA, Rätsch G, Brudno M, Boycott KM, Rehm HL, Baudis M, Sherry ST, Kato K, Knoppers BM, Baker D, Flicek P.

Eur J Hum Genet. 2018 Dec;26(12):1721-1731. doi: 10.1038/s41431-018-0219-y. Epub 2018 Aug 2.

2.

Registered access: a 'Triple-A' approach.

Dyke SO, Kirby E, Shabani M, Thorogood A, Kato K, Knoppers BM.

Eur J Hum Genet. 2016 Dec;24(12):1676-1680. doi: 10.1038/ejhg.2016.115. Epub 2016 Sep 28.

3.

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.

4.

Primer on medical genomics. Part XIII: Ethical and regulatory issues.

Hook CC, DiMagno EP, Tefferi A.

Mayo Clin Proc. 2004 May;79(5):645-50. Review.

PMID:
15132406
5.

Regulation: The FDA is overcautious on consumer genomics.

Green RC, Farahany NA.

Nature. 2014 Jan 16;505(7483):286-7. No abstract available.

PMID:
24436984
6.

An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health.

Rahimzadeh V, Dyke SO, Knoppers BM.

Biopreserv Biobank. 2016 Jun;14(3):256-9. doi: 10.1089/bio.2016.0005. Epub 2016 Apr 15.

PMID:
27082668
7.

A human rights approach to an international code of conduct for genomic and clinical data sharing.

Knoppers BM, Harris JR, Budin-Ljøsne I, Dove ES.

Hum Genet. 2014 Jul;133(7):895-903. doi: 10.1007/s00439-014-1432-6. Epub 2014 Feb 27.

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.

Balancing the local and the universal in maintaining ethical access to a genomics biobank.

Heeney C, Kerr SM.

BMC Med Ethics. 2017 Dec 28;18(1):80. doi: 10.1186/s12910-017-0240-7. Review.

10.

Knowing who to trust: exploring the role of 'ethical metadata' in mediating risk of harm in collaborative genomics research in Africa.

de Vries J, Williams TN, Bojang K, Kwiatkowski DP, Fitzpatrick R, Parker M.

BMC Med Ethics. 2014 Aug 13;15:62. doi: 10.1186/1472-6939-15-62.

11.

Worth waiting for.

[No authors listed]

Nature. 2010 Nov 11;468(7321):134. doi: 10.1038/468134a. No abstract available.

PMID:
21068784
12.

Data sharing in stem cell translational science: policy statement by the International Stem Cell Forum Ethics Working Party.

Bredenoord AL, Mostert M, Isasi R, Knoppers BM.

Regen Med. 2015;10(7):857-61. doi: 10.2217/rme.15.42. Epub 2015 Oct 27.

PMID:
26506014
13.

The legal risks of returning results of genomics research.

Clayton EW, McGuire AL.

Genet Med. 2012 Apr;14(4):473-7. doi: 10.1038/gim.2012.10. Epub 2012 Feb 9.

14.

Can I be sued for that? Liability risk and the disclosure of clinically significant genetic research findings.

McGuire AL, Knoppers BM, Zawati MH, Clayton EW.

Genome Res. 2014 May;24(5):719-23. doi: 10.1101/gr.170514.113. Epub 2014 Mar 27.

15.

Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance.

Cook-Deegan R, Ankeny RA, Maxson Jones K.

Annu Rev Genomics Hum Genet. 2017 Aug 31;18:389-415. doi: 10.1146/annurev-genom-083115-022515. Epub 2017 Apr 17. Review.

16.

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.

17.

Geneticists push for global data-sharing.

Hayden EC.

Nature. 2013 Jun 6;498(7452):16-7. doi: 10.1038/498017a. No abstract available.

PMID:
23739403
18.

[Genetics, genomics and medicine].

Lacombe D.

Presse Med. 2012 Jan;41(1):1-2. doi: 10.1016/j.lpm.2011.09.003. Epub 2011 Oct 12. French. No abstract available.

PMID:
21996474
19.

Genomics education for the public: perspectives of genomic researchers and ELSI advisors.

Dressler LG, Jones SS, Markey JM, Byerly KW, Roberts MC.

Genet Test Mol Biomarkers. 2014 Mar;18(3):131-40. doi: 10.1089/gtmb.2013.0366. Epub 2014 Feb 4.

20.

Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research.

Tabor HK, Berkman BE, Hull SC, Bamshad MJ.

Am J Med Genet A. 2011 Dec;155A(12):2916-24. doi: 10.1002/ajmg.a.34357. Epub 2011 Oct 28.

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