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Items: 1 to 20 of 185

1.

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.

2.

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.

3.

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 AH, 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.

PMID:
28190457
4.

Participants' recall and understanding of genomic research and large-scale data sharing.

Robinson JO, Slashinski MJ, Wang T, Hilsenbeck SG, McGuire AL.

J Empir Res Hum Res Ethics. 2013 Oct;8(4):42-52. doi: 10.1525/jer.2013.8.4.42.

5.

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.

6.

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.

7.

DNA data sharing: research participants' perspectives.

McGuire AL, Hamilton JA, Lunstroth R, McCullough LB, Goldman A.

Genet Med. 2008 Jan;10(1):46-53. doi: 10.1097/GIM.0b013e31815f1e00.

8.

Pediatric data sharing in genomic research: attitudes and preferences of parents.

Burstein MD, Robinson JO, Hilsenbeck SG, McGuire AL, Lau CC.

Pediatrics. 2014 Apr;133(4):690-7. doi: 10.1542/peds.2013-1592. Epub 2014 Mar 10.

9.

Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents.

Munung NS, Marshall P, Campbell M, Littler K, Masiye F, Ouwe-Missi-Oukem-Boyer O, Seeley J, Stein DJ, Tindana P, de Vries J.

J Med Ethics. 2016 Feb;42(2):132-7. doi: 10.1136/medethics-2015-102796. Epub 2015 Dec 7.

10.

Research ethics. The complexities of genomic identifiability.

Rodriguez LL, Brooks LD, Greenberg JH, Green ED.

Science. 2013 Jan 18;339(6117):275-6. doi: 10.1126/science.1234593. No abstract available.

PMID:
23329035
11.

[Ethical issues in personal genome research].

Kato K, Minari J.

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

PMID:
23475518
12.

Public opinion about the importance of privacy in biobank research.

Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL.

Am J Hum Genet. 2009 Nov;85(5):643-54. doi: 10.1016/j.ajhg.2009.10.002. Epub 2009 Oct 29.

13.
14.

Balancing Benefits and Risks of Immortal Data: Participants' Views of Open Consent in the Personal Genome Project.

Zarate OA, Brody JG, Brown P, Ramirez-Andreotta MD, Perovich L, Matz J.

Hastings Cent Rep. 2016 Jan-Feb;46(1):36-45. doi: 10.1002/hast.523. Epub 2015 Dec 17.

15.

Understandings of genomic research in developing countries: a qualitative study of the views of MalariaGEN participants in Mali.

Traore K, Bull S, Niare A, Konate S, Thera MA, Kwiatkowski D, Parker M, Doumbo OK.

BMC Med Ethics. 2015 Jun 16;16:42. doi: 10.1186/s12910-015-0035-7.

16.

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.

17.

Public perspectives regarding data-sharing practices in genomics research.

Haga SB, O'Daniel J.

Public Health Genomics. 2011;14(6):319-24. doi: 10.1159/000324705. Epub 2011 Mar 24.

18.

Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project.

Sanderson SC, Linderman MD, Suckiel SA, Diaz GA, Zinberg RE, Ferryman K, Wasserstein M, Kasarskis A, Schadt EE.

Eur J Hum Genet. 2016 Jan;24(1):14-20. doi: 10.1038/ejhg.2015.118. Epub 2015 Jun 3. Erratum in: Eur J Hum Genet. 2016 Jan;24(1):153.

19.

Data re-identification: protect the children.

Gurwitz D.

Science. 2013 Mar 1;339(6123):1033. doi: 10.1126/science.339.6123.1033-a. No abstract available.

PMID:
23449578
20.

Ethical aspects of participation in the database of genotypes and phenotypes of the National Center for Biotechnology Information: the Cancer and Leukemia Group B Experience.

Peppercorn J, Shapira I, Deshields T, Kroetz D, Friedman P, Spears P, Collyar DE, Shulman LN, Dressler L, Bertagnolli MM.

Cancer. 2012 Oct 15;118(20):5060-8. doi: 10.1002/cncr.27515. Epub 2012 Mar 13.

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