Sexual and gender minority youth's perspectives on sharing de-identified data in sexual health and HIV prevention research.
HIV prevention
adolescents
data sharing
gender identity
participant perspectives
research ethics
sexual orientation
Journal
Sexuality research & social policy : journal of NSRC : SR & SP
ISSN: 1868-9884
Titre abrégé: Sex Res Social Policy
Pays: United States
ID NLM: 101239794
Informations de publication
Date de publication:
Mar 2019
Mar 2019
Historique:
entrez:
1
1
2020
pubmed:
1
1
2020
medline:
1
1
2020
Statut:
ppublish
Résumé
Funding agencies encourage and sometimes require data sharing. However, there is limited empirical research on participant perspectives on sharing de-identified data from research on sensitive topics (e.g., HIV, sexual health) with other researchers, and virtually none from adolescents or sexual and gender minority (SGM) participants. SGM teens (N = 197) ages 14-17 completed an online survey with multiple choice and open-ended items assessing perspectives toward sharing survey responses and blood samples from sexual health and HIV testing studies with other researchers. SGM youth were willing to share data but frequently cited confidentiality and privacy concerns, including fears about parents finding out about their identities even after de-identification was explained. Researchers need to ensure youth understand explanations of data security protections in order to make well-informed decisions about participating in research.
Identifiants
pubmed: 31890053
doi: 10.1007/s13178-018-0372-7
pmc: PMC6936765
mid: NIHMS1524955
doi:
Types de publication
Journal Article
Langues
eng
Pagination
1-11Subventions
Organisme : NIAID NIH HHS
ID : P30 AI117943
Pays : United States
Organisme : NIMHD NIH HHS
ID : R01 MD009561
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1 TR001422
Pays : United States
Références
Adv Methods Pract Psychol Sci. 2018 Mar;1(1):121-130
pubmed: 31157320
J Sex Res. 2011 Mar;48(2-3):218-53
pubmed: 21409715
AIDS Educ Prev. 2016 Jun;28(3):191-201
pubmed: 27244188
J Adolesc Health. 2016 Apr;58(4):474-480
pubmed: 27013273
Arch Sex Behav. 2011 Aug;40(4):673-86
pubmed: 21528402
Code Fed Regul Public Welfare. 1995 Oct 1;Title 45(Sections 46-101 to 46-409):Unknown
pubmed: 11686173
AIDS Educ Prev. 2017 Jun;29(3):205-217
pubmed: 28650227
Genet Med. 2011 Nov;13(11):948-55
pubmed: 21785360
Ann Epidemiol. 2002 May;12(4):248-56
pubmed: 11988413
JRSM Short Rep. 2013 Sep 13;4(10):2042533313493271
pubmed: 24319581
Perspect Sex Reprod Health. 2017 Jun;49(2):111-121
pubmed: 28445608
Pediatrics. 2014 Apr;133(4):690-7
pubmed: 24616359
Hastings Cent Rep. 2014 Sep;44 Suppl 4:S28-31
pubmed: 25231783
PLoS One. 2018 Jul 25;13(7):e0200560
pubmed: 30044845
Public Health Genomics. 2012;15(2):106-14
pubmed: 22213783
Prev Sci. 2018 Oct;19(7):871-879
pubmed: 30145751
J Empir Res Hum Res Ethics. 2010 Jun;5(2):65-80
pubmed: 20569151
J Empir Res Hum Res Ethics. 2016 Feb;11(1):3-14
pubmed: 26956988
Med Care. 2006 Nov;44(11):1048-53
pubmed: 17063137
Soc Sci Med. 2001 Mar;52(5):797-808
pubmed: 11218181
Am J Med Genet C Semin Med Genet. 2008 Feb 15;148C(1):31-9
pubmed: 18189289
Ethics Behav. 2000;10(2):99-118
pubmed: 11841105
PLoS One. 2016 Jul 14;11(7):e0159113
pubmed: 27415017
Public Health Genomics. 2010;13(6):368-77
pubmed: 20805700
IRB. 2008 May-Jun;30(3):1-9
pubmed: 18814439
Am J Prev Med. 2016 Aug;51(2):249-252
pubmed: 27061893
Ethics Behav. 2003;13(4):303-32
pubmed: 15000093
Life Sci Soc Policy. 2016;12:1
pubmed: 26790860
Am J Hum Genet. 2009 Nov;85(5):643-54
pubmed: 19878915
Health Psychol. 2012 May;31(3):269-77
pubmed: 22059617
J Acquir Immune Defic Syndr. 2010 Jul;54 Suppl 1:S12-7
pubmed: 20571418
BMC Med Ethics. 2015 May 08;16:32
pubmed: 25953109
J Consult Clin Psychol. 1994 Apr;62(2):221-7
pubmed: 8201058
Arch Sex Behav. 2017 Jul;46(5):1393-1409
pubmed: 27469352
J Gen Intern Med. 1999 Sep;14(9):537-46
pubmed: 10491242