The reuse of genetic information in research and informed consent.
Journal
European journal of human genetics : EJHG
ISSN: 1476-5438
Titre abrégé: Eur J Hum Genet
Pays: England
ID NLM: 9302235
Informations de publication
Date de publication:
Dec 2023
Dec 2023
Historique:
received:
05
12
2022
accepted:
31
08
2023
revised:
28
05
2023
pmc-release:
01
12
2024
medline:
4
12
2023
pubmed:
13
9
2023
entrez:
12
9
2023
Statut:
ppublish
Résumé
Important advances in genetics research have been made in recent years. Such advances have facilitated the availability of huge amounts of genetic information that could potentially be reused beyond the original purpose for which such information was obtained. Any such reuse must meet certain ethical criteria to ensure that the dignity, integrity, and autonomy of the individual from whom that information was obtained are protected. The aim of this paper is to reflect on these criteria through a critical analysis of the literature. To guarantee these values, ethical criteria need to be established in several respects. For instance, the question must be posed whether the information requires special attention and protection (so-called genetic exceptionalism). Another aspect to bear in mind is the most appropriate type of consent to be given by the person involved, on the one hand favouring research and the reuse of genetic information while on the other protecting the autonomy of that person. Finally, there is a need to determine what protection such reuse should have in order to avoid detrimental consequences and protect the rights of the individual. The main conclusions are that genetic information requires special care and protection (genetic exceptionalism) and that broad consent is the most practical and trustworthy type of consent for the reuse of genetic information.
Identifiants
pubmed: 37699995
doi: 10.1038/s41431-023-01457-y
pii: 10.1038/s41431-023-01457-y
pmc: PMC10689789
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1393-1397Informations de copyright
© 2023. The Author(s), under exclusive licence to European Society of Human Genetics.
Références
J Med Ethics. 2009 Feb;35(2):125-9
pubmed: 19181887
Yearb Med Inform. 2017 Aug;26(1):28-37
pubmed: 28480474
PLoS One. 2018 Oct 31;13(10):e0204417
pubmed: 30379944
Soc Sci Med. 2004 Nov;59(9):1975-84
pubmed: 15312931
Bioethics. 2016 Sep;30(7):471-8
pubmed: 26990222
Genet Med. 2008 Jul;10(7):500-1
pubmed: 18580684
J Epidemiol Community Health. 2015 Nov;69(11):1125-8
pubmed: 25669218
Soc Sci Med. 2010 Jan;70(2):217-20
pubmed: 19853341
Monash Bioeth Rev. 2021 Jul;39(1):115-124
pubmed: 33635509
Nat Biotechnol. 2007 Sep;25(9):973-6
pubmed: 17846619
Eur J Hum Genet. 2022 Dec;30(12):1391-1397
pubmed: 36064788
J Med Genet. 2019 Mar;56(3):176-185
pubmed: 30464052
Nat Rev Genet. 2020 Oct;21(10):615-629
pubmed: 32694666
Eur J Hum Genet. 2021 Apr;29(4):649-656
pubmed: 33249421
IRB. 2003 May-Jun;25(3):12-9
pubmed: 14569989
Int J Med Inform. 2013 Jan;82(1):1-9
pubmed: 23182430
J Med Ethics. 2022 Mar;48(3):184-188
pubmed: 33722983
Community Genet. 2003;6(1):37-45
pubmed: 12748437
BMC Med Ethics. 2020 Feb 4;21(1):13
pubmed: 32019532
Science. 2006 Jul 28;313(5786):441-2
pubmed: 16873628
Eur J Hum Genet. 2020 Aug;28(8):989-996
pubmed: 32424324
BMJ. 2008 Jul 10;337:a337
pubmed: 18617495
Med Health Care Philos. 2022 Jun;25(2):269-280
pubmed: 35286521
Public Health Genomics. 2011;14(6):319-24
pubmed: 21430368
BMC Med Ethics. 2017 Jan 25;18(1):4
pubmed: 28122615
J Med Ethics. 2008 Sep;34(9):e17
pubmed: 18757617
Front Genet. 2022 Feb 18;13:719317
pubmed: 35251121
Clin Genet. 2014 Sep;86(3):199-206
pubmed: 24646408
Public Health Genomics. 2010;13(6):368-77
pubmed: 20805700
Arch Intern Med. 2002 Jul 8;162(13):1457-62
pubmed: 12090881
PLoS Med. 2008 Sep 16;5(9):e192
pubmed: 18798689
Eur J Hum Genet. 2015 Feb;23(2):141-6
pubmed: 24801761
J Law Med Ethics. 2005 Spring;33(1):15-21
pubmed: 15934662
Am J Bioeth. 2015;15(9):34-42
pubmed: 26305750
BMJ. 2004 Jul 17;329(7458):165-7
pubmed: 15258076
Curr Opin Oncol. 2011 Jan;23(1):112-9
pubmed: 21076300
Sci Eng Ethics. 2021 Feb 4;27(1):9
pubmed: 33538942
Annu Rev Genomics Hum Genet. 2010;11:361-81
pubmed: 20477535
Front Genet. 2019 Dec 20;10:1254
pubmed: 31956328
Eur J Hum Genet. 2006 Nov;14(11):1170-8
pubmed: 16868560
Life Sci Soc Policy. 2015;11:3
pubmed: 26085313
Life Sci Soc Policy. 2020 Jan 6;16(1):1
pubmed: 31903508
Eur J Hum Genet. 2016 Nov;24(11):1524-1529
pubmed: 27329739
Genet Med. 2008 Jul;10(7):495-9
pubmed: 18580687
Lancet Oncol. 2006 Mar;7(3):266-9
pubmed: 16510336