New Guidelines on Genomic Data Sharing Could be Key to Success of Precision Medicine

2017 ◽  
Vol 4 (1) ◽  
pp. 4-4
2021 ◽  
Vol 4 (2) ◽  
pp. 42
Author(s):  
Yeu-Yao Cheng ◽  
Jack Nunn ◽  
John Skinner ◽  
Boe Rambaldini ◽  
Tiffany Boughtwood ◽  
...  

(1) Background: Genomic precision medicine (PM) utilises people’s genomic data to inform the delivery of preventive and therapeutic health care. PM has not been well-established for use with people of Aboriginal and Torres Strait Islander ancestry due to the paucity of genomic data from these communities. We report the development of a new protocol using co-design methods to enhance the potential use of PM for Aboriginal Australians. (2) Methods: This iterative qualitative study consists of five main phases. Phase-I will ensure appropriate governance of the project and establishment of a Project Advisory Committee. Following an initial consultation with the Aboriginal community, Phase-II will invite community members to participate in co-design workshops. In Phase-III, the Chief Investigators will participate in co-design workshops and document generated ideas. The notes shall be analysed thematically in Phase-IV with Aboriginal community representatives, and the summary will be disseminated to the communities. In Phase-V, we will evaluate the co-design process and adapt our protocol for the use in partnership with other communities. (3) Discussion: This study protocol represents a crucial first step to ensure that PM research is relevant and acceptable to Aboriginal Australians. Without fair access to PM, the gap in health outcome between Aboriginal and non-Aboriginal Australians will continue to widen.


2018 ◽  
Vol 137 (8) ◽  
pp. 583-591 ◽  
Author(s):  
Lisa Eckstein ◽  
Donald Chalmers ◽  
Christine Critchley ◽  
Ruthie Jeanneret ◽  
Rebekah McWhirter ◽  
...  

2019 ◽  
Vol 2 ◽  
pp. 30-30
Author(s):  
Vincent Le Texier ◽  
Nesrine Henda ◽  
Stéphanie Cox ◽  
Marina Rousseau-Tsangaris ◽  
Pierre Saintigny

2019 ◽  
Vol 47 (1) ◽  
pp. 31-40 ◽  
Author(s):  
Angela G. Villanueva ◽  
Robert Cook-Deegan ◽  
Jill O. Robinson ◽  
Amy L. McGuire ◽  
Mary A. Majumder

Making data broadly accessible is essential to creating a medical information commons (MIC). Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.


2019 ◽  
Vol 66 (1) ◽  
pp. 33-41 ◽  
Author(s):  
Linnea M Baudhuin ◽  
Leslie G Biesecker ◽  
Wylie Burke ◽  
Eric D Green ◽  
Robert C Green

Author(s):  
Heather P. Nick ◽  
Kelsey Kehoe ◽  
Amanda Gammon ◽  
Jorge L. Contreras ◽  
Kimberly A. Kaphingst

This study examines knowledge, attitudes, and communication practices toward genomic data sharing among principal investigators and research coordinators engaged in cancer and non-cancer studies. We conducted 25 individual semi-structured interviews and conducted a qualitative thematic analysis. Most interviewees had basic knowledge of data sharing requirements, but lacked specific details of recent changes to NIH policy. Principal investigators perceived more risks to participants for data sharing than the research coordinators who generally obtained consent. Interviewees perceived a trend toward providing fewer data sharing options to participants in the consent process, and had observed that parents of pediatric patients asked more questions than adult patients. Our findings highlight potential areas for improvement related to data sharing during consent processes.


2020 ◽  
Vol 21 (10) ◽  
pp. 615-629 ◽  
Author(s):  
James Brian Byrd ◽  
Anna C. Greene ◽  
Deepashree Venkatesh Prasad ◽  
Xiaoqian Jiang ◽  
Casey S. Greene
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