scholarly journals Returning Individual Research Results: Development of a Cancer Genetics Education and Risk Communication Protocol

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 ◽  
...  
Keyword(s):  
Risk Communication ◽  
Communication Protocol ◽  
Cancer Genetics ◽  
Genetics Education ◽  
Research Results ◽  
Individual Research Results

Resource document for curriculum development in cancer genetics education. American Society of Clinical Oncology.

1997 ◽  
Vol 15 (5) ◽  
pp. 2157-2169 ◽  
Keyword(s):  
Genetic Testing ◽  
Clinical Oncology ◽  
Social Issues ◽  
Cancer Genetics ◽  
Cancer Predisposition ◽  
Genetics Education ◽  
Formal Instruction ◽  
Curriculum Guidelines ◽  
American Society

PURPOSE The rapid growth in the use of genetic testing for heritable cancers and other diseases has led to the establishment of many committees to assess the status and future implications of such testing. The American Society of Clinical Oncology (ASCO) published a statement on genetic testing for cancer susceptibility in May 1996. In that statement, ASCO recognized the need for a major initiative to develop courses and other educational materials for ASCO members and other health care professionals that were pertinent to cancer genetics and the role of cancer predisposition testing in clinical oncology. These curriculum guidelines represent an effort to promote formal instruction on the assessment and management of familial cancer risks in training programs and continuing education courses. DESIGN AND RESULTS An Ad hoc Task Force was created from the ASCO membership and other professional organizations. Goals of ASCO's cancer genetics education initiative, curriculum guidelines, and plans for implementation of the curriculum have been developed. To gain understanding and competency in cancer genetics and cancer predisposition testing, the curriculum emphasizes formal instruction in: (1) basic concepts and principles of genetics; (2) an understanding of the role of genetics in the etiology, diagnosis, and management of different malignancies; (3) an understanding of the ethical, legal, and social issues that surround predisposition testing; and (4) long-term management plans for individuals at high risk for cancer. This document is broad in scope and applicable to all types of malignancies. It should be considered as the framework around which cancer genetics education is developed. It is expected that implementation of training activities over the next few years will allow ASCO to fulfill its obligations to the membership. CONCLUSION This curriculum should prove a valuable guide to those who wish further education on cancer genetics and the appropriate use of cancer predisposition testing.

scholarly journals Return of Individual Research Results

2020 ◽  
Vol 190 (5) ◽  
pp. 918-933
Author(s):  
Mark E. Sobel ◽  
Jennifer C. Dreyfus ◽  
Kelsey Dillehay McKillip ◽  
Christi Kolarcik ◽  
William A. Muller ◽  
...  
Keyword(s):  
Research Results ◽  
Individual Research Results

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 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.

Pediatric Research and the Return of Individual Research Results

2011 ◽  
Vol 39 (4) ◽  
pp. 593-604 ◽  
Author(s):  
Denise Avard ◽  
Karine Sénécal ◽  
Parvaz Madadi ◽  
Daniel Sinnett
Keyword(s):  
Conflict Of Interest ◽  
Ethical Issues ◽  
Critical Role ◽  
Pediatric Research ◽  
Best Interest ◽  
Vulnerable Group ◽  
Potential Conflict ◽  
Research Results ◽  
Ethical Duty ◽  
Individual Research Results

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.

scholarly journals Practical implementation issues and challenges for biobanks in the return of individual research results

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

Commentary on hormesis and public risk communication: is there a basis for public discussions?

2003 ◽  
Vol 22 (1) ◽  
pp. 31-34 ◽  
Author(s):  
James Flynn ◽  
Donald MacGregor
Keyword(s):  
Decision Making ◽  
Risk Communication ◽  
Risk Perceptions ◽  
Threshold Model ◽  
Exposure Model ◽  
Social Good ◽  
Research Results ◽  
Daunting Task ◽  
Public Risk ◽  
The Impact

Research on radiation exposure is now focusing on microbiology and the impact of low dose exposures on cells and cell components. Eventually, this research may provide evidence to support changes in the models used to regulate human and environmental exposures. Currently, three models using older research results are subjects of interest and comparison. The linear no threshold model, the most restrictive on behalf of public health values, dominates regulatory decision making. Alternative models (i.e., the threshold model and the hormesis model) could reduce costs of radiation management, depending upon new research results and public acceptance. Enacting a new public exposure model is a daunting task for risk communication given existing public risk perceptions and the established public decision-making processes. Each of the three prominent models must answer the question, ‘what social good requires the use of this model in contrast to the others?’

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