Communicating genetic information to family members : analysis of consent forms for diagnostic genomic sequencing
Phillips, Amicia ; Niemiec, Emilia LU
; Howard, Heidi Carmen
LU
; Kagkelari, Kalliopi
; Borry, Pascal
and Vears, Danya F.
(2020)
In European Journal of Human Genetics
28(9).
p.1160-1167
- Abstract
Communicating results from genomic sequencing to family members can play an essential role allowing access to surveillance, prevention, treatment or prophylactic measures. Yet, many patients struggle with communication of these results and it is unclear to what extent this is discussed during the consent process. We conducted an online systematic search and used content analysis to explore how consent forms for genomic sequencing address communication of genetic information to family members. Our search yielded 68 consent forms from 11 countries. Although 57 forms alluded to the familial nature of results, forms varied in their discussion of the potential familial implications of results. Only 11 addressed communication of genetic... (More)
Communicating results from genomic sequencing to family members can play an essential role allowing access to surveillance, prevention, treatment or prophylactic measures. Yet, many patients struggle with communication of these results and it is unclear to what extent this is discussed during the consent process. We conducted an online systematic search and used content analysis to explore how consent forms for genomic sequencing address communication of genetic information to family members. Our search yielded 68 consent forms from 11 countries. Although 57 forms alluded to the familial nature of results, forms varied in their discussion of the potential familial implications of results. Only 11 addressed communication of genetic information with family members, with differences in who would be responsible for this process. Several forms offered patients options regarding communication, even in countries where national guidelines and legislation allow for the disclosure of results in the absence of patient consent. These findings are concerning because they show how forms may potentially mislead patients and health care professionals about whether communication is permissible in cases where the patient does not consent. We suggest that providers and health care professionals reconsider how consent forms address communicating genetic information to family members.
(Less)
- author
- Phillips, Amicia
; Niemiec, Emilia
LU
; Howard, Heidi Carmen
LU
; Kagkelari, Kalliopi
; Borry, Pascal
and Vears, Danya F.
- publishing date
- 2020-09-01
- type
- Contribution to journal
- publication status
- published
- subject
- in
- European Journal of Human Genetics
- volume
- 28
- issue
- 9
- pages
- 8 pages
- publisher
- Nature Publishing Group
- external identifiers
-
- scopus:85084121332
- pmid:32341470
- ISSN
- 1018-4813
- DOI
- 10.1038/s41431-020-0627-7
- language
- English
- LU publication?
- no
- id
- 97de35e8-ac0e-4c4c-8bff-16f6edc91db7
- date added to LUP
- 2020-11-11 13:18:06
- date last changed
- 2024-06-14 03:01:38
@article{97de35e8-ac0e-4c4c-8bff-16f6edc91db7,
abstract = {{<p>Communicating results from genomic sequencing to family members can play an essential role allowing access to surveillance, prevention, treatment or prophylactic measures. Yet, many patients struggle with communication of these results and it is unclear to what extent this is discussed during the consent process. We conducted an online systematic search and used content analysis to explore how consent forms for genomic sequencing address communication of genetic information to family members. Our search yielded 68 consent forms from 11 countries. Although 57 forms alluded to the familial nature of results, forms varied in their discussion of the potential familial implications of results. Only 11 addressed communication of genetic information with family members, with differences in who would be responsible for this process. Several forms offered patients options regarding communication, even in countries where national guidelines and legislation allow for the disclosure of results in the absence of patient consent. These findings are concerning because they show how forms may potentially mislead patients and health care professionals about whether communication is permissible in cases where the patient does not consent. We suggest that providers and health care professionals reconsider how consent forms address communicating genetic information to family members.</p>}},
author = {{Phillips, Amicia and Niemiec, Emilia and Howard, Heidi Carmen and Kagkelari, Kalliopi and Borry, Pascal and Vears, Danya F.}},
issn = {{1018-4813}},
language = {{eng}},
month = {{09}},
number = {{9}},
pages = {{1160--1167}},
publisher = {{Nature Publishing Group}},
series = {{European Journal of Human Genetics}},
title = {{Communicating genetic information to family members : analysis of consent forms for diagnostic genomic sequencing}},
url = {{http://dx.doi.org/10.1038/s41431-020-0627-7}},
doi = {{10.1038/s41431-020-0627-7}},
volume = {{28}},
year = {{2020}},
}