Return of individual research results: Policies and experiences of cancer genomic researchers.

2014 ◽  
Vol 32 (15_suppl) ◽  
pp. 11025-11025
Author(s):  
Lynn G. Dressler ◽  
Nikolajs Zeps ◽  
Allison Mary Deal ◽  
Janell Markey ◽  
Bartha Knoppers
2020 ◽  
Vol 190 (5) ◽  
pp. 918-933
Author(s):  
Mark E. Sobel ◽  
Jennifer C. Dreyfus ◽  
Kelsey Dillehay McKillip ◽  
Christi Kolarcik ◽  
William A. Muller ◽  
...  

2010 ◽  
Vol 5 (3) ◽  
pp. 17-30 ◽  
Author(s):  
J. Scott Roberts ◽  
David I. Shalowitz ◽  
Kurt D. Christensen ◽  
Jessica N. Everett ◽  
Scott Y. H. Kim ◽  
...  

2014 ◽  
Vol 15 (1) ◽  
Author(s):  
Adrian Thorogood ◽  
Yann Joly ◽  
Bartha Maria Knoppers ◽  
Tommy Nilsson ◽  
Peter Metrakos ◽  
...  

2008 ◽  
Vol 36 (2) ◽  
pp. 280-285 ◽  
Author(s):  
Mildred K. Cho

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.


2011 ◽  
Vol 39 (4) ◽  
pp. 593-604 ◽  
Author(s):  
Denise Avard ◽  
Karine Sénécal ◽  
Parvaz Madadi ◽  
Daniel Sinnett

As a matter of respect for the person, it is considered an ethical duty to offer to return research results to participants where appropriate. Nevertheless, the return of individual research results to participants raises many socio-ethical issues and greater challenges when the participant is a child. This discrepancy arises partly because the return of individual pediatric research results entails a tripartite relationship between researcher, child, and parent(s) and is embroiled in numerous considerations (e.g., acting in the best interest of the child, respect for the person, and respect for the autonomy of the parents/child).Extra caution is required in the pediatric research context because children cannot generally decide (consent) whether they want to be informed of their own research results or whether the results should be disclosed to parents. Children have long been considered a special and vulnerable group, and their parents, as guardians, play a critical role in the consent process. However, with regards to the return of individual research results, this might pose a potential conflict of interest between the current or future desires of the child and those of the parents.


2012 ◽  
Vol 14 (4) ◽  
pp. 478-483 ◽  
Author(s):  
Marianna J. Bledsoe ◽  
William E. Grizzle ◽  
Brian J. Clark ◽  
Nikolajs Zeps

2014 ◽  
Vol 10 ◽  
pp. P812-P812 ◽  
Author(s):  
Jonathan Gooblar ◽  
Catherine M. Roe ◽  
Natalie J. Selsor ◽  
Matthew Gabel ◽  
John Morris

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

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