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Items: 19

1.

The Belmont Report. Ethical principles and guidelines for the protection of human subjects of research.

Department of Health, Education, and Welfare; National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research.

J Am Coll Dent. 2014 Summer;81(3):4-13.

PMID:
25951677
2.

IRB chairs' perspectives on genotype-driven research recruitment.

Beskow LM, Namey EE, Miller PR, Nelson DK, Cooper A.

IRB. 2012 May-Jun;34(3):1-10. No abstract available.

3.

Offering aggregate results to participants in genomic research: opportunities and challenges.

Beskow LM, Burke W, Fullerton SM, Sharp RR.

Genet Med. 2012 Apr;14(4):490-6. doi: 10.1038/gim.2011.62. Epub 2012 Jan 26.

4.

Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment.

Tabor HK, Brazg T, Crouch J, Namey EE, Fullerton SM, Beskow LM, Wilfond BS.

J Empir Res Hum Res Ethics. 2011 Dec;6(4):41-52. doi: 10.1525/jer.2011.6.4.41.

5.

The meaning of genetic research results: reflections from individuals with and without a known genetic disorder.

Cadigan RJ, Michie M, Henderson G, Davis AM, Beskow LM.

J Empir Res Hum Res Ethics. 2011 Dec;6(4):30-40. doi: 10.1525/jer.2011.6.4.30.

6.

Epilepsy patient-participants and genetic research results as "answers".

Namey EE, Beskow LM.

J Empir Res Hum Res Ethics. 2011 Dec;6(4):21-9. doi: 10.1525/jer.2011.6.4.21.

7.

Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.

National Heart, Lung, and Blood Institute working group, Fabsitz RR, McGuire A, Sharp RR, Puggal M, Beskow LM, Biesecker LG, Bookman E, Burke W, Burchard EG, Church G, Clayton EW, Eckfeldt JH, Fernandez CV, Fisher R, Fullerton SM, Gabriel S, Gachupin F, James C, Jarvik GP, Kittles R, Leib JR, O'Donnell C, O'Rourke PP, Rodriguez LL, Schully SD, Shuldiner AR, Sze RK, Thakuria JV, Wolf SM, Burke GL.

Circ Cardiovasc Genet. 2010 Dec;3(6):574-80. doi: 10.1161/CIRCGENETICS.110.958827.

8.

Communication of biobanks' research results: what do (potential) participants want?

Meulenkamp TM, Gevers SK, Bovenberg JA, Koppelman GH, van Hylckama Vlieg A, Smets EM.

Am J Med Genet A. 2010 Oct;152A(10):2482-92. doi: 10.1002/ajmg.a.33617.

PMID:
20799322
9.

Ethical challenges in genotype-driven research recruitment.

Beskow LM, Linney KN, Radtke RA, Heinzen EL, Goldstein DB.

Genome Res. 2010 Jun;20(6):705-9. doi: 10.1101/gr.104455.109. Epub 2010 Apr 23. No abstract available.

10.

Prospective biorepository participants' perspectives on access to research results.

Beskow LM, Smolek SJ.

J Empir Res Hum Res Ethics. 2009 Sep;4(3):99-111. doi: 10.1525/jer.2009.4.3.99.

11.

Disclosure of APOE genotype for risk of Alzheimer's disease.

Green RC, Roberts JS, Cupples LA, Relkin NR, Whitehouse PJ, Brown T, Eckert SL, Butson M, Sadovnick AD, Quaid KA, Chen C, Cook-Deegan R, Farrer LA; REVEAL Study Group.

N Engl J Med. 2009 Jul 16;361(3):245-54. doi: 10.1056/NEJMoa0809578.

12.

Assessing the understanding of biobank participants.

Ormond KE, Cirino AL, Helenowski IB, Chisholm RL, Wolf WA.

Am J Med Genet A. 2009 Feb;149A(2):188-98. doi: 10.1002/ajmg.a.32635.

PMID:
19161150
13.

Public expectations for return of results from large-cohort genetic research.

Murphy J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K.

Am J Bioeth. 2008 Nov;8(11):36-43. doi: 10.1080/15265160802513093.

14.

Subjects matter: a survey of public opinions about a large genetic cohort study.

Kaufman D, Murphy J, Scott J, Hudson K.

Genet Med. 2008 Nov;10(11):831-9. doi: 10.1097/GIM.0b013e31818bb3ab.

PMID:
19011407
15.

Don't throw the baby out with the bathwater: enabling a bottom-up approach in genome-wide association studies.

McGuire SE, McGuire AL.

Genome Res. 2008 Nov;18(11):1683-5. doi: 10.1101/gr.083584.108. No abstract available.

16.

The Environmental Polymorphisms Registry: a DNA resource to study genetic susceptibility loci.

Chulada PC, Vahdat HL, Sharp RR, DeLozier TC, Watkins PB, Pusek SN, Blackshear PJ.

Hum Genet. 2008 Mar;123(2):207-14. doi: 10.1007/s00439-007-0457-5. Epub 2008 Jan 10.

PMID:
18193459
17.

Reporting genetic results in research studies: summary and recommendations of an NHLBI working group.

Bookman EB, Langehorne AA, Eckfeldt JH, Glass KC, Jarvik GP, Klag M, Koski G, Motulsky A, Wilfond B, Manolio TA, Fabsitz RR, Luepker RV; NHLBI Working Group.

Am J Med Genet A. 2006 May 15;140(10):1033-40.

18.

Ethical issues in identifying and recruiting participants for familial genetic research.

Beskow LM, Botkin JR, Daly M, Juengst ET, Lehmann LS, Merz JF, Pentz R, Press NA, Ross LF, Sugarman J, Susswein LR, Terry SF, Austin MA, Burke W.

Am J Med Genet A. 2004 Nov 1;130A(4):424-31.

PMID:
15455364
19.

The debate over research on stored biological samples: what do sources think?

Wendler D, Emanuel E.

Arch Intern Med. 2002 Jul 8;162(13):1457-62.

PMID:
12090881

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