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Items: 1 to 20 of 75

2.

Return of genomic results to research participants: the floor, the ceiling, and the choices in between.

Jarvik GP, Amendola LM, Berg JS, Brothers K, Clayton EW, Chung W, Evans BJ, Evans JP, Fullerton SM, Gallego CJ, Garrison NA, Gray SW, Holm IA, Kullo IJ, Lehmann LS, McCarty C, Prows CA, Rehm HL, Sharp RR, Salama J, Sanderson S, Van Driest SL, Williams MS, Wolf SM, Wolf WA; eMERGE Act-ROR Committee and CERC Committee; CSER Act-ROR Working Group, Burke W.

Am J Hum Genet. 2014 Jun 5;94(6):818-26. doi: 10.1016/j.ajhg.2014.04.009. Epub 2014 May 8.

3.

Disclosure of individual genetic data to research participants: the debate reconsidered.

Bredenoord AL, Kroes HY, Cuppen E, Parker M, van Delden JJ.

Trends Genet. 2011 Feb;27(2):41-7. doi: 10.1016/j.tig.2010.11.004. Epub 2010 Dec 27. Review.

PMID:
21190750
4.

Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy.

Bredenoord AL, Onland-Moret NC, Van Delden JJ.

Hum Mutat. 2011 Aug;32(8):861-7. doi: 10.1002/humu.21518. Epub 2011 Jun 30.

PMID:
21538687
5.

Ethical Considerations for the Return of Incidental Findings in Ophthalmic Genomic Research.

Souzeau E, Burdon KP, Mackey DA, Hewitt AW, Savarirayan R, Otlowski M, Craig JE.

Transl Vis Sci Technol. 2016 Feb 9;5(1):3. eCollection 2016 Feb.

6.

[The information of the schizophrenic patient: actuality].

Palazzolo J, Brousse G, Favre P, Llorca PM.

Encephale. 2005 Mar-Apr;31(2):227-34. Review. French.

PMID:
15959449
7.

Guidelines, editors, pharma and the biological paradigm shift.

Singh AR, Singh SA.

Mens Sana Monogr. 2007 Jan;5(1):27-30. doi: 10.4103/0973-1229.32176.

8.

Should genetic findings from genome research be reported back to the participants?

Steinsbekk KS, Solberg B.

Tidsskr Nor Laegeforen. 2012 Oct 16;132(19):2190-3. Review. English, Norwegian.

PMID:
23243670
9.

Disclosing pathogenic genetic variants to research participants: quantifying an emerging ethical responsibility.

Cassa CA, Savage SK, Taylor PL, Green RC, McGuire AL, Mandl KD.

Genome Res. 2012 Mar;22(3):421-8. doi: 10.1101/gr.127845.111. Epub 2012 Jan 6.

10.

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.

11.

Duty to disclose what? Querying the putative obligation to return research results to participants.

Miller FA, Christensen R, Giacomini M, Robert JS.

J Med Ethics. 2008 Mar;34(3):210-3. doi: 10.1136/jme.2006.020289.

PMID:
18316466
12.

Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries.

Ries NM, LeGrandeur J, Caulfield T.

BMC Med Ethics. 2010 Mar 23;11:4. doi: 10.1186/1472-6939-11-4. Review.

13.

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.

14.

The research imperative revisited: considerations for advancing the debate surrounding medical research as moral imperative.

Wayne K, Glass KC.

Perspect Biol Med. 2010 Summer;53(3):373-87. doi: 10.1353/pbm.0.0173.

PMID:
20639606
15.

Focus groups in health research: exploring the meanings of health and illness.

Wilkinson S.

J Health Psychol. 1998 Jul;3(3):329-48. doi: 10.1177/135910539800300304.

PMID:
22021395
16.

What research participants want to know about genetic research results: the impact of "genetic exceptionalism".

Ruiz-Canela M, Valle-Mansilla JI, Sulmasy DP.

J Empir Res Hum Res Ethics. 2011 Sep;6(3):39-46. doi: 10.1525/jer.2011.6.3.39.

PMID:
21931236
17.

Familial communication of research results: a need to know?

Black L, McClellan KA.

J Law Med Ethics. 2011 Winter;39(4):605-13. doi: 10.1111/j.1748-720X.2011.00627.x.

PMID:
22084846
19.

What is a meaningful result? Disclosing the results of genomic research in autism to research participants.

Miller FA, Hayeems RZ, Bytautas JP.

Eur J Hum Genet. 2010 Aug;18(8):867-71. doi: 10.1038/ejhg.2010.34. Epub 2010 Mar 17.

20.

Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home.

Carnevale FA, Alexander E, Davis M, Rennick J, Troini R.

Pediatrics. 2006 Jan;117(1):e48-60.

PMID:
16396848
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