Lessons learned during the process of reporting individual genomic results to participants of a population-based biobank.
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:
09 2023
09 2023
Historique:
received:
29
04
2022
accepted:
13
09
2022
revised:
06
08
2022
pmc-release:
01
09
2024
medline:
5
9
2023
pubmed:
4
10
2022
entrez:
3
10
2022
Statut:
ppublish
Résumé
The return of individual genomic results (ROR) to research participants is still in its early phase, and insight on how individuals respond to ROR is scarce. Studies contributing to the evidence base for best practices are crucial before these can be established. Here, we describe a ROR procedure conducted at a population-based biobank, followed by surveying the responses of almost 3000 participants to a range of results, and discuss lessons learned from the process, with the aim of facilitating large-scale expansion. Overall, participants perceived the information that they received with counseling as valuable, even when the reporting of high risks initially caused worry. The face-to-face delivery of results limited the number of participants who received results. Although the participants highly valued this type of communication, additional means of communication need to be considered to improve the feasibility of large-scale ROR. The feedback collected sheds light on the value judgements of the participants and on potential responses to the receipt of genetic risk information. Biobanks in other countries are planning or conducting similar projects, and the sharing of lessons learned may provide valuable insight and aid such endeavors.
Identifiants
pubmed: 36192438
doi: 10.1038/s41431-022-01196-6
pii: 10.1038/s41431-022-01196-6
pmc: PMC10474261
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
1048-1056Informations de copyright
© 2022. The Author(s), under exclusive licence to European Society of Human Genetics.
Références
Eur J Hum Genet. 2021 Mar;29(3):365-377
pubmed: 33223530
Circ Genom Precis Med. 2022 Apr;15(2):e003459
pubmed: 35130028
Nat Genet. 2012 Sep;44(9):981-90
pubmed: 22885922
Health Aff (Millwood). 2019 Mar;38(3):399-407
pubmed: 30830824
PLoS One. 2021 Nov 8;16(11):e0258646
pubmed: 34748551
Nature. 2020 May;581(7809):434-443
pubmed: 32461654
Genet Med. 2019 May;21(5):1173-1180
pubmed: 30270359
Eur J Hum Genet. 2011 Dec;19(12):1213-7
pubmed: 21731059
Genome Med. 2021 Jul 15;13(1):115
pubmed: 34266500
Br J Clin Psychol. 1992 Sep;31(3):301-6
pubmed: 1393159
Wiley Interdiscip Rev Syst Biol Med. 2018 Jul;10(4):e1417
pubmed: 29474005
Med Decis Making. 2003 Jul-Aug;23(4):281-92
pubmed: 12926578
Clin Pharmacol Ther. 2011 Mar;89(3):464-7
pubmed: 21270786
Public Health Genomics. 2013;16(5):241-50
pubmed: 24029681
Genet Med. 2022 May;24(5):1120-1129
pubmed: 35125311
Clin J Am Soc Nephrol. 2020 Aug 7;15(8):1181-1189
pubmed: 32041801
Genet Med. 2017 Mar;19(3):322-329
pubmed: 27513194
Eur Heart J. 2016 Nov 14;37(43):3267-3278
pubmed: 27655226
Nucleic Acids Res. 2018 Jan 4;46(D1):D1062-D1067
pubmed: 29165669
Genet Med. 2017 Feb;19(2):249-255
pubmed: 27854360
Genet Med. 2019 Mar;21(3):727-735
pubmed: 29976988
Int J Epidemiol. 2015 Aug;44(4):1137-47
pubmed: 24518929
Nat Rev Genet. 2020 Sep;21(9):505-506
pubmed: 32601319
Eur J Hum Genet. 2016 Jan;24(1):21-9
pubmed: 25920556
Genet Med. 2019 Jun;21(6):1345-1354
pubmed: 30327539
J Pers Med. 2015 Apr 16;5(2):96-106
pubmed: 25894366
Eur J Hum Genet. 2021 Mar;29(3):471-481
pubmed: 33230308
Genet Med. 2014 Oct;16(10):727-35
pubmed: 24625446
Per Med. 2016 Jul;13(4):303-314
pubmed: 29749813
J Law Med Ethics. 2019 Mar;47(1):12-20
pubmed: 30994067
Biopreserv Biobank. 2016 Jun;14(3):241-8
pubmed: 27082461
Am J Hum Genet. 2021 Dec 2;108(12):2224-2237
pubmed: 34752750
Nat Genet. 2015 Nov;47(11):1294-1303
pubmed: 26414677
J Law Med Ethics. 2008 Summer;36(2):219-48, 211
pubmed: 18547191