دورية أكاديمية
أعرض في EDS

Cancer patients' intentions towards receiving unsolicited genetic information obtained using next-generation sequencing.

التفاصيل البيبلوغرافية
العنوان: Cancer patients' intentions towards receiving unsolicited genetic information obtained using next-generation sequencing.
المؤلفون: Bijlsma RM; Department of Medical Oncology, Cancer Center, University Medical Center Utrecht, Q05.4.300, PO Box 85500, 3508 GA, Utrecht, The Netherlands. r.m.bijlsma@umcutrecht.nl., Wessels H; Department of Corporate Communications, University Medical Center Utrecht, Utrecht, The Netherlands., Wouters RHP; Department of Medical Humanities, Julius Center, University Medical Center Utrecht, Utrecht, The Netherlands., May AM; Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands., Ausems MGEM; Department of Genetics, University Medical Center Utrecht, Utrecht, The Netherlands., Voest EE; Department of Medical Oncology, Netherlands Cancer Institute Antoni van Leeuwenhoek, Amsterdam, The Netherlands., Bredenoord AL; Department of Medical Humanities, Julius Center, University Medical Center Utrecht, Utrecht, The Netherlands.
المصدر: Familial cancer [Fam Cancer] 2018 Apr; Vol. 17 (2), pp. 309-316.
نوع المنشور: Journal Article; Research Support, Non-U.S. Gov't
اللغة: English
بيانات الدورية: Publisher: Springer Country of Publication: Netherlands NLM ID: 100898211 Publication Model: Print Cited Medium: Internet ISSN: 1573-7292 (Electronic) Linking ISSN: 13899600 NLM ISO Abbreviation: Fam Cancer Subsets: MEDLINE
أسماء مطبوعة: Publication: Dordrecht : Springer
Original Publication: Dordrecht ; Boston : Kluwer Academic Publishers, c2001-
مواضيع طبية MeSH: Decision Making* , Genetic Testing* , Precision Medicine*, Neoplastic Syndromes, Hereditary/*genetics , Patient Preference/*psychology, Adaptation, Psychological ; Adult ; Aged ; Family/psychology ; Female ; High-Throughput Nucleotide Sequencing ; Humans ; Intention ; Male ; Middle Aged ; Netherlands ; Professional-Patient Relations ; Qualitative Research ; Truth Disclosure
مستخلص: Next-generation sequencing (NGS) can be used to generate information about a patient's tumour and personal genome. This powerful diagnostic tool provides solicited and unsolicited hereditary genetic (risk) information that could have consequences for cancer patients and their quality of life. A well-defined approach for returning appropriate genetic risk information is needed in personalized cancer care. A qualitative design with semi-structured interviews was used. We conducted interviews with 24 Dutch patients with different types of cancer, both NGS-experienced and NGS-inexperienced, to learn their intentions, needs and preferences towards receiving unsolicited genetic information obtained using NGS. Almost all participants had a positive attitude towards receiving unsolicited findings. After receiving comprehensive background information on NGS, including a binning model of four categories of unsolicited findings, most participants preferred to receive only subsets of genetic information. Their main concern was their own and others' (including family members) ability to cope with (the increased risk of having) a genetic disorder. Providing background information gave cancer patients the opportunity to select subsets of findings and increased their ability to make an informed choice. Special attention is needed for social and emotional factors to support the patients themselves and when communicating test results with their family members.
References: Trends Genet. 2011 Feb;27(2):41-7. (PMID: 21190750)
Genome Res. 2009 Sep;19(9):1665-74. (PMID: 19602640)
Genet Med. 2014 May;16(5):395-9. (PMID: 24113345)
BMJ. 2011 Jul 26;343:d4163. (PMID: 21791490)
Am J Bioeth. 2015;15(7):28-30. (PMID: 26147261)
J Genet Couns. 2014 Aug;23(4):539-51. (PMID: 24449059)
Eur J Hum Genet. 2016 Jan;24(1):21-9. (PMID: 25920556)
Genet Med. 2017 Mar;19(3):283-293. (PMID: 27584911)
Lancet. 2001 Aug 11;358(9280):483-8. (PMID: 11513933)
J R Soc Med. 1990 May;83(5):303-5. (PMID: 2380946)
Genet Med. 2016 Oct;18(10 ):1011-9. (PMID: 26866579)
Eur J Hum Genet. 2013 Mar;21(3):261-5. (PMID: 22892536)
Hum Mutat. 2011 Aug;32(8):861-7. (PMID: 21538687)
Clin Genet. 2016 Mar;89(3):378-84. (PMID: 25871653)
J Clin Oncol. 2013 May 20;31(15):1842-8. (PMID: 23589552)
J Med Screen. 1994 Oct;1(4):238-44. (PMID: 8790528)
Nat Rev Genet. 2013 May;14(5):306. (PMID: 23729034)
Genet Med. 2014 Jun;16(6):442-7. (PMID: 24310310)
Circ Cardiovasc Genet. 2010 Dec;3(6):574-80. (PMID: 21156933)
Genet Med. 2012 Apr;14(4):451-7. (PMID: 22402755)
Patient Educ Couns. 1998 Sep;35(1):27-34. (PMID: 9832894)
Eur J Hum Genet. 2014 Jan;22(1):3-5. (PMID: 23921532)
Eur J Hum Genet. 2014 Mar;22(3):391-5. (PMID: 23860039)
Eur J Hum Genet. 2013 Jun;21 Suppl 1:S1-5. (PMID: 23819146)
Eur J Hum Genet. 2015 Oct;23 (10 ):1423-6. (PMID: 25604854)
Eur J Hum Genet. 2016 Oct;24(10 ):1496-500. (PMID: 27071717)
Genet Med. 2013 Jul;15(7):565-74. (PMID: 23788249)
معلومات مُعتمدة: grant UU2014-7469 International KWF Kankerbestrijding
فهرسة مساهمة: Keywords: Cancer patients’ intentions; Ethics; Genetics; Incidental finding; Needs and preferences; Next-generation DNA sequencing; Theory of planned behaviour; Unsolicited finding
تواريخ الأحداث: Date Created: 20170831 Date Completed: 20190128 Latest Revision: 20190128
رمز التحديث: 20231215
مُعرف محوري في PubMed: PMC5893692
DOI: 10.1007/s10689-017-0033-7
PMID: 28852913
قاعدة البيانات: MEDLINE
الوصف
تدمد:1573-7292
DOI:10.1007/s10689-017-0033-7