scholarly journals Attitudes of the general public towards the disclosure of individual research results and incidental findings from biobank genomic research in Australia

2015 ◽  
Vol 45 (12) ◽  
pp. 1274-1279 ◽  
Author(s):  
J. Fleming ◽  
C. Critchley ◽  
M. Otlowski ◽  
C. Stewart ◽  
I. Kerridge
Keyword(s):  
General Public ◽  
Incidental Findings ◽  
Genomic Research ◽  
Research Results ◽  
Individual Research Results

scholarly journals Understanding Incidental Findings in the Context of Genetics and Genomics

2008 ◽  
Vol 36 (2) ◽  
pp. 280-285 ◽  
Author(s):  
Mildred K. Cho
Keyword(s):  
Incidental Findings ◽  
Human Subjects ◽  
Association Studies ◽  
Human Migration ◽  
Genomic Research ◽  
Human Subjects Research ◽  
Research Results ◽  
Yield Information ◽  
Individual Research Results ◽  
Genetics And Genomics

Human genetic and genomic research can yield information that may be of clinical relevance to the individuals who participate as subjects of the research. However, no consensus exists as yet on the responsibilities of researchers to disclose individual research results to participants in human subjects research. “Genetic and genomic research” on humans varies widely, including association studies, examination of allele frequencies, and studies of natural selection, human migration, and genetic variation. For the purposes of this article, it is defined broadly to include analysis of DNA collected from humans that has implications for human health (even if the purpose of the study is not medical). This paper addresses both research results of individual research participants that may be an intended product of the research, as well as unanticipated, “incidental” findings.

scholarly journals Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations

2015 ◽  
Vol 43 (3) ◽  
pp. 440-463 ◽  
Author(s):  
Susan M. Wolf ◽  
Rebecca Branum ◽  
Barbara A. Koenig ◽  
Gloria M. Petersen ◽  
Susan A. Berry ◽  
...  
Keyword(s):  
Incidental Findings ◽  
Genomic Research ◽  
Research Results ◽  
Health Implications ◽  
Multiple Contexts ◽  
Important Health ◽  
Reproductive Concerns ◽  
Genomic Results ◽  
Individual Research Results ◽  
Genetic Results

The debate about how to manage individual research results and incidental findings in genetic and genomic research has focused primarily on what information, if any, to offer back to research participants. However, increasing controversy surrounds the question of whether researchers have any responsibility to offer a participant’s results (defined here to include both individual research results and incidental findings) to the participant’s relatives, including after the participant’s death. This question arises in multiple contexts, including when researchers discover a result with potentially important health implications for genetic relatives, when a participant’s relatives ask a researcher whether any research results about the participant have implications for their own health or reproductive planning, when a participant’s relative asks whether any of the participant’s results have implications for a child’s health, and when the participant is deceased and the participant’s relatives seek information about the participant’s genetic results in order to address their own health or reproductive concerns.

scholarly journals An implementation framework for the feedback of individual research results and incidental findings in research

2014 ◽  
Vol 15 (1) ◽  
Author(s):  
Adrian Thorogood ◽  
Yann Joly ◽  
Bartha Maria Knoppers ◽  
Tommy Nilsson ◽  
Peter Metrakos ◽  
...  
Keyword(s):  
Incidental Findings ◽  
Implementation Framework ◽  
Research Results ◽  
Individual Research Results

scholarly journals Participant Satisfaction With a Preference-Setting Tool for the Return of Individual Research Results in Pediatric Genomic Research

2015 ◽  
Vol 10 (4) ◽  
pp. 414-426 ◽  
Author(s):  
Ingrid A. Holm ◽  
Brittany R. Iles ◽  
Sonja I. Ziniel ◽  
Phoebe L. Bacon ◽  
Sarah K. Savage ◽  
...  
Keyword(s):  
Genomic Research ◽  
Research Results ◽  
Participant Satisfaction ◽  
Individual Research Results

scholarly journals Managing incidental findings and research results in genomic research involving biobanks and archived data sets

2012 ◽  
Vol 14 (4) ◽  
pp. 361-384 ◽  
Author(s):  
Susan M. Wolf ◽  
Brittney N. Crock ◽  
Brian Van Ness ◽  
Frances Lawrenz ◽  
Jeffrey P. Kahn ◽  
...  
Keyword(s):  
Incidental Findings ◽  
Genomic Research ◽  
Data Sets ◽  
Research Results ◽  
Archived Data

scholarly journals International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access

2015 ◽  
Vol 43 (3) ◽  
pp. 576-593
Author(s):  
Rebecca Branum ◽  
Susan M. Wolf
Keyword(s):  
Genetic Risk ◽  
Incidental Findings ◽  
Research Community ◽  
Genomic Research ◽  
Return Of Results ◽  
Research Results ◽  
International Policies

Debate over return of results and incidental findings to participants in genetic and genomic research has exploded over the last decade. At this point, there is wide agreement that investigators have a responsibility to anticipate discovery of findings that may warrant return, to incorporate in protocols a plan for evaluating such findings, and to offer at least some of these results to participants consenting to such return. However, the issue of how to handle questions from a participant’s genetic relatives about their own risk, or whether investigators should alert relatives to a genetic risk they may share, has garnered much less attention. Only recently has the genomic research community begun to debate these questions and offer recommendations.

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