Stability of Attitudes to the Ethical Issues Raised by the Return of Incidental Genomic Research Findings in Children: A Follow-Up Study.
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.
Department of Pediatrics, IWK Health Centre and Dalhousie University, Halifax, N.S., Canada.
Conrad V
CV
Fernandez
Colleen
C
OʼConnell
Meghan
M
Ferguson
Andrew C
AC
Orr
Johane M
JM
Robitaille
Bartha M
BM
Knoppers
Christopher R
CR
McMaster
D000293:Adolescent; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D002648:Child; D032984:Ethics, Research; D005190:Family; D005260:Female; D005500:Follow-Up Studies; D036281:Genetic Research / Q000941:ethics; D016678:Genome / Q000941:ethics; D023281:Genomics / Q000941:ethics*; D006805:Human Experimentation / Q000941:ethics*; D006801:Humans; D033162:Incidental Findings; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D010820:Physicians / Q000941:ethics; D012108:Research Personnel / Q000941:ethics; D012919:Social Behavior; D012941:Social Responsibility; D011795:Surveys and Questionnaires; D055815:Young Adult