Facilitating a culture of responsible and effective sharing of cancer genome data

Siu, Lillian L.; Lawler, Mark; Haussler, David; Knoppers, Bartha Maria; Lewin, Jeremy; Vis, Daniël J.; Liao, Rachel G.; Varga, Andrea; Banks, Ian; Barrett, J. Carl; Caldas, Carlos; Camargo, Anamaria A.; Fitzgerald, Rebecca C.; Mao, Mao; Mattison, John E.; Pao, William; Sellers, William R.; Sullivan, Patrick F.; Teh, Bin Tean; Ward, Robyn L.; Zenklusen, Jean C.; Sawyers, Charles L.; Voest, Emile E.

doi:10.1038/nm.4089

Cited by 86 publications

(64 citation statements)

References 58 publications

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“…Many of the recommendations that emerged from the think tank discussions align with other recent meeting reports (32,33) as well as the priorities of the Precision Medicine Initiative, including the following recommendations of the National Cancer Moonshot Initiative Blue Ribbon Panel (BRP): * Creation of a network for direct patient engagement.…”

Section: Next Stepsmentioning

confidence: 96%

Obstacles, Opportunities and Priorities for Advancing Metastatic Breast Cancer Research

et al. 2017

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In January 2016, the Metastatic Breast Cancer Alliance (the Alliance) convened a think tank of stakeholders from academia, government, industry, and patient advocacy to discuss gaps and opportunities in clinical and translational research in metastatic breast cancer. Priorities that emerged from the meeting included the following: the need for innovative preclinical model systems to study metastatic disease; increased sharing of resources and data; collaboration across cancer care teams and scientists; biorepositories for studies to identify biomarkers for treatment response; creation of patient registries to increase access to clinical trials and tissue procurement; and redesign of clinical trials in metastatic breast cancer. Cancer Res; 77(13); 3386-90. Ó2017 AACR.

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Section: Next Stepsmentioning

confidence: 96%

Obstacles, Opportunities and Priorities for Advancing Metastatic Breast Cancer Research

et al. 2017

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“…For example, the Genomic Alliance for Genomics and Health (http://ga4gh.org.) allows the sharing of genomic and health-related clinical data to improve human health [43].…”

Section: Sample and Data Sharing Barriers In Biobankingmentioning

confidence: 99%

Specialized biobank for Diabetes Research: current prospect

Nawaz¹,

Usmani²,

Siddiqui³

2018

IJMDC

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The exponential increase in human population depicted by the recent population trend shows that every 15 years the world population would increase by at least 1 billion. Consequently, there is a large increase in the use of human biospecimens for academic and pharmaceutical research. The global demand for human biospecimen is estimated to be worth $700 million and projected to increase 20%-30% annually. Biospecimens and associated data sharing are essential for biomedical research findings, discovery of disease markers, and improving patients' health care. One of the most prevalent chronic diseases worldwide that involves extensive interdisciplinary research-based studies is diabetes. In this review, we emphasized the need and importance of biobanks in diabetes, which will serve as a resource to promote research in understanding disease link, and mechanisms related to molecular pathways, protein and drug targets, and also in improving health outcomes.

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“…But they must be faced if society is to live in the real world, rather than seeking, out of timidity, to emulate the head-hiding behaviour of the ostrich [6]. A refusal to admit there are questions - out of apathy or of flat rejectionism - is not a responsible response.…”

Section: Innovation and Healthcarementioning

confidence: 99%

Keeping the Person in Personalised Healthcare

Horgan¹

2017

Biomed Hub

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Proponents of personalised medicine believe that the involvement of the patients, including in “risk-sharing agreements,” will result in cost savings, the use of the genetic makeup of an individual patient as the starting point will save resources and, indirectly, there will be great potential for startups and new business in many areas. But how can Europe ensure that the “person” is central stage and allow us to focus on the development of personalised medicine for his or her ultimate benefit? The EU has a clear role to play, argues the author. One way for this to happen is for the EU to focus investment in guidelines for governance. This will go a long way to ensuring that the citizen is the principal factor when it comes to utilising the new wealth of innovation in health. The citizen must always come first when innovation is harnessed.

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Facilitating a culture of responsible and effective sharing of cancer genome data

Cited by 86 publications

References 58 publications

Obstacles, Opportunities and Priorities for Advancing Metastatic Breast Cancer Research

Obstacles, Opportunities and Priorities for Advancing Metastatic Breast Cancer Research

Specialized biobank for Diabetes Research: current prospect

Keeping the Person in Personalised Healthcare

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