Abstract:
OBJECTIVE:We explore the stability of parental attitudes to the ethical issues raised by the return of genomic research results. METHODS:A 19-item questionnaire was mailed to participants in a large genome research consortium 18 months following a baseline survey. We describe the stability of parental attitudes to (a) sharing of genomic research results, (b) endorsement of children in genomic research, (c) responsibilities of researchers, and (d) responsibilities to extended family. We also explore their experience in receiving results. RESULTS:Of 170 original participants, 154 (91%) responded. Most participants expressed positive rights to receive incidental genomic research findings (85%), including when ameliorative therapy was unknown (85%). Only 3% found it acceptable to delegate the decision to return results to an independent committee. Researchers, either with a parent (42%) or physician (17%), were felt to be responsible to convey research results to children when they reach adulthood. Most participants (74%) indicated that results should be shared with potentially affected extended family. These results are very similar to those of the baseline survey. All participants who received genomic results would do so again and reported actions similar to their expressed attitudes. CONCLUSIONS:The opinions of parents regarding genomic research remain stable over time. Guidelines on the return of results should incorporate these findings.
journal_name
Public Health Genomicsjournal_title
Public health genomicsauthors
Fernandez CV,OʼConnell C,Ferguson M,Orr AC,Robitaille JM,Knoppers BM,McMaster CRdoi
10.1159/000439244subject
Has Abstractpub_date
2015-01-01 00:00:00pages
299-308issue
5eissn
1662-4246issn
1662-8063pii
000439244journal_volume
18pub_type
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