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Hot Topics of the Day are picked by experts to capture the latest information and publications on public health genomics and precision health for various diseases and health topics. Sources include published scientific literature, reviews, blogs and popular press articles.

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123 hot topic(s) found with the query "Data sharing"

Big Data and Collaboration Seek to Fight COVID-19
E Yazinski, The Scientist, July 21, 2020 (Posted: Jul-26-2020 7AM)

Researchers try unprecedented data sharing and cooperation to understand COVID-19—and develop a model for diseases beyond the coronavirus pandemic.


Responsible, practical genomic data sharing that accelerates research
JB Byrd et al, Nat Rev Genetics, July 21, 2020 (Posted: Jul-22-2020 8AM)

To illuminate the rationales for sharing data, the technical challenges and the social and cultural challenges, we consider the stakeholders in the scientific enterprise. We discuss current best practices for various types of genomic data, as well as opportunities to promote ethical data sharing that accelerates science by aligning incentives.


Privacy challenges and research opportunities for genomic data sharing
L Bonomi et al, Nature Genetics, June 29, 2020 (Posted: Jun-30-2020 9AM)

In this work, we provide an overview of major privacy threats identified by the research community and examine the privacy challenges in the context of emerging direct-to-consumer genetic-testing applications. We additionally present general privacy-protection techniques for genomic data sharing and their potential applications.


The Project Baseline Health Study: a step towards a broader mission to map human health
K Arges et al, NPJ Digital Medicine, June 5, 2020 (Posted: Jun-06-2020 6AM)

The PBHS will contribute to precision health and medicine by integrating state of the art testing, longitudinal monitoring and participant engagement, and by contributing to the development of an improved platform for data sharing and analysis


Data Sharing for the Public Good.
Helzlsouer Kathy J et al. Journal of the National Cancer Institute 2020 Jan (Posted: May-10-2020 7AM)


Use of Real-World Evidence in US Payer Coverage Decision-Making for Next-Generation Sequencing–Based Tests: Challenges, Opportunities, and Potential Solutions
P Deverka et al, Value in Health, May 2020 (Posted: May-08-2020 9AM)

We identified 3 categories of innovation that may help address the current undersupply of RWE studies for NGS: (1) increasing use of RWE to inform outcomes-based contracting for new technologies, (2) precision medicine initiatives that integrate clinical and genomic data and enable data sharing, and (3) FDA reforms to encourage the use of RWE.


Aggregating multiple real-world data sources using a patient-centered health-data-sharing platform
SS Dhruva et al NPJ Digital Medicine, April 20, 2020 (Posted: Apr-21-2020 10AM)

We successfully obtained EHR data for all patients at both hospitals, as well as from ten additional health systems, which were successfully aggregated with pharmacy data obtained for patients using pharmacies; personal digital device data from activity monitors, digital weight scales, and single-lead ECGs, and patient-reported outcome measure survey data.


Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data
M Hudson et al, Nat Rev Genetics, April 7, 2020 (Posted: Apr-08-2020 8AM)

Although Indigenous experiences with genetic research have been shaped by negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data.


As Use of Genomic Data Expands in Cancer Care, Patients Share Their Stories
NCI, December 3, 2019 Brand (Posted: Dec-06-2019 8AM)

The expanding use of personal genomic data has raised questions, including: Which patients should undergo genomic testing? Who controls a person’s genomic data? What are the potential benefits and risks of sharing one’s genomic data with researchers or family members?


Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data.
Middleton Anna et al. European journal of human genetics : EJHG 2019 Nov (Posted: Dec-02-2019 8AM)

This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n?=?8967) towards the donation of DNA and health data.


Data sharing is key to innovation in health care
MIT Tech Review, September 27, 2019 (Posted: Sep-30-2019 8AM)


A framework for the investigation of rare genetic disorders in neuropsychiatry
SJ Sanders et al, Nature Medicine, September 23, 2019 (Posted: Sep-24-2019 9AM)

De novo and inherited rare genetic disorders (RGDs) are a major cause of human morbidity, frequently involving neuropsychiatric symptoms. Recent advances in genomic technologies and data sharing have revolutionized the identification and diagnosis of RGDs.


Rethinking the ethical principles of genomic medicine services
SB Johnson et al, Eur J Hum Genetics, September 18, 2019 (Posted: Sep-21-2019 1PM)

This paper examines ethical principles that should guide regulatory processes regarding consent and data sharing in this context. We argue that genomic data in a health system carries substantial societal benefits, and that the collective nature of genomics means that patients who benefit from sequencing have an ethical obligation to share health information


Leveraging European infrastructures to access 1 million human genomes by 2022
G Saunders et al, Nature Rev Genetics, August 27, 2019 (Posted: Aug-28-2019 7AM)

Human genomics is undergoing a step change from being a predominantly research-driven activity to one driven through health care as many countries in Europe now have nascent precision medicine programs. To maximize the value of the genomic data generated, these data will need to be shared between institutions and across countries


Data Sharing For Research—Encouraging Signs Amid Ethical Tensions
SP Hey, JAMA Network Open, August 21, 2019 (Posted: Aug-22-2019 7AM)

Most patients seemed to be comfortable sharing some of their health care data for the public good. So long as this willingness or consent to share data is grounded in the patient’s understanding of the history, risks, and benefits of the practice, then the broad support seems to be a great sign for the health care community.


Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research
J Kim et al, JAMA Network Open, August 21, 2019 (Posted: Aug-22-2019 7AM)


The Childhood Cancer Data Initiative: Transforming the Pediatric Cancer Landscape through Sharing Data
DR Lowy, NCI, August 15, 2019 Brand (Posted: Aug-19-2019 8AM)

The Childhood Cancer Data Initiative presents a tremendous opportunity—and responsibility—to leverage new technologies for gathering and integrating data and building a framework for easily sharing data among researchers who study pediatric cancer and clinicians who treat our youngest patients with cancer.


Emerging technologies towards enhancing privacy in genomic data sharing
B Berger et al, Genome Biology, July 2, 2019 (Posted: Jul-05-2019 9AM)

As the scale of genomic and health-related data explodes and our understanding of these data matures, the privacy of the individuals behind the data is increasingly at stake. Traditional approaches to protect privacy have fundamental limitations. The authors discuss emerging privacy-enhancing technologies that can enable broader data sharing and collaboration in genomics research.


Genetic data partnerships: academic publications with privately owned or generated genetic data
KS Bagdady, et al, Genetics in Medicine, June 17, 2019 (Posted: Jun-17-2019 7AM)


The Childhood Cancer Data Initiative: Why Data Sharing Is Essential to Progress
D Lowy, NCI Director Blog, June 12, 2019 Brand (Posted: Jun-12-2019 10AM)


Credit data generators for data reuse
HH pierce et al, Nature, June 4, 2019 (Posted: Jun-04-2019 0PM)


BRCA1/2 Variant Data-Sharing Practices.
Bollinger Juli M et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2019 Mar 47(1) 88-96 (Posted: Apr-24-2019 7AM)


Responsible data sharing in international health research: a systematic review of principles and norms.
Kalkman Shona et al. BMC medical ethics 2019 Mar (1) 21 (Posted: Mar-31-2019 10AM)


Data sharing for pediatric cancers
AM Vaske et al, Science, March 15, 2019 (Posted: Mar-15-2019 8AM)


"A love letter to your future self": What scientists need to know about FAIR data
J Brock, Nature Index, February 11, 2019 (Posted: Feb-14-2019 10AM)


Genomic variant sharing: a position statement [version 1; referees: awaiting peer review]
Wright CF et al, Wellcome Open Research, 2019 (Posted: Feb-06-2019 8AM)


Motivations for data sharing—views of research participants from four European countries: A DIRECT study
N Shah et al, EJHG, January 30, 2019 (Posted: Jan-31-2019 4PM)


Toward unrestricted use of public genomic data.
Amann Rudolf I et al. Science (New York, N.Y.) 2019 Jan (6425) 350-352 (Posted: Jan-28-2019 7AM)


NHS to offer paid-for DNA tests if patients share data
BBC News, January 26, 2019 (Posted: Jan-26-2019 0PM)


The Open Data Explosion
V Callier, The Scientist, January 2`019 (Posted: Jan-16-2019 9AM)


BRCA Exchange: Data sharing for the Benefit of Science and Medicine
Global Alliance for Genetics and Health, 2019 (Posted: Jan-10-2019 9AM)


Protecting Participants, Empowering Researchers: Providing Access to Genomic Summary Results
ED Green et al, NHGRI, November 1, 2018 Brand (Posted: Nov-05-2018 10AM)


Variant data sharing by clinical laboratories through public databases: consent, privacy and further contact for research policies
M Shabani et al,. Genetics in Medicine, October 8, 2018 (Posted: Oct-08-2018 0PM)


Registered access: authorizing data access.
Dyke Stephanie O M et al. European journal of human genetics : EJHG 2018 Aug (Posted: Aug-08-2018 10AM)


Data Enclaves for Sharing Information Derived From Clinical and Administrative Data
R Platt et al, JAMA< August 6, 2018 (Posted: Aug-06-2018 11AM)


The Future Is Data- Precision medicine symposium focuses on data sharing, costs, access
N Fliesler, Harvard Medical School. July 2018 (Posted: Jul-24-2018 8AM)


Responsible sharing of biomedical data and biospecimens via the “Automatable Discovery and Access Matrix” (ADA-M)
JP Woolley et al, npj Genomic Medicine, July 23, 2018 (Posted: Jul-23-2018 11AM)


Moving From Hope to Hard Work in Data Sharing.
Gibson C Michael et al. JAMA cardiology 2018 Jul (Posted: Jul-05-2018 9AM)


Finding Means to Fulfill the Societal and Academic Imperative for Open Data Access and Sharing.
Peterson Eric D et al. JAMA cardiology 2018 Jul (Posted: Jul-05-2018 9AM)


Data Sharing-The Time Has (Not Yet?) Come.
Yancy Clyde W et al. JAMA cardiology 2018 Jul (Posted: Jul-05-2018 9AM)


Development of a consent resource for genomic data sharing in the clinical setting.
Riggs Erin Rooney et al. Genetics in medicine : official journal of the American College of Medical Genetics 2018 Jun (Posted: Jun-26-2018 7PM)


Clinical Trial Participants' Views of the Risks and Benefits of Data Sharing.
Mello Michelle M et al. The New England journal of medicine 2018 Jun (23) 2202-2211 (Posted: Jun-07-2018 9AM)


Data Sharing For Precision Medicine: Policy Lessons And Future Directions
A Blasimmme et al, Health Affairs, May 2018 (Posted: May-08-2018 8AM)


Ethics of Genomic Data Sharing: An Interview with Bartha Maria Knoppers
Global Alliance for Genomics and Health, Apr 2018 (Posted: Apr-20-2018 1PM)


Building Global Genomics Initiatives and Enabling Data Sharing: Insights from Multiple Case Studies.
Fusi Federica et al. Omics : a journal of integrative biology 2018 Mar (Posted: Apr-04-2018 11AM)


Key Implications of Data Sharing in Pediatric Genomics.
Rahimzadeh Vasiliki et al. JAMA pediatrics 2018 Mar (Posted: Mar-21-2018 4PM)


Laying the Groundwork for Real-World Genomic Data Sharing by 2020
Frontline Genomics, Feb 9, 2018 (Posted: Feb-09-2018 11AM)


Sharing rare data for a common cause
MRC Blog, Jan 10, 2018 (Posted: Jan-12-2018 11AM)


Accessing your own genomic data is a civil right but requires strategies to manage safety
Medical XPress, Jan 4, 2018 (Posted: Jan-05-2018 7AM)


NIH awards to test ways to store, access, share, and compute on biomedical data in the cloud
NIH, Nov 6, 2017 Brand (Posted: Nov-06-2017 1PM)


GA4GH Announces New Strategic Plan, Vision To Create Standards
Bio IT Word, Oct 17, 2017 (Posted: Oct-17-2017 11AM)


GA4GH Strikes Formal Collaborations with 15 International Genomic Data Initiatives
Global Alliance for Genomics and Health, Oct 15, 2017 (Posted: Oct-17-2017 11AM)


Response to “Proposal to Update Data Management of Genomic Summary Results Under the NIH Genomic Data Sharing Policy
D MacArthur, Broad Institute, Oct 10, 2017 (Posted: Oct-11-2017 7AM)


Sharing genetic information
N Rahman, TGMI Blog Post, Oct 6, 2017 (Posted: Oct-07-2017 10AM)


NIH seeks comment on proposal to update data management of genomic summary results
NIH, Sep 21, 2017 Brand (Posted: Sep-21-2017 8AM)


Genomic medicine and data sharing.
Raza Sobia et al. British medical bulletin 2017 Sep 123(1) 35-45 (Posted: Sep-20-2017 11AM)


Impact of HIPAA's minimum necessary standard on genomic data sharing.
Evans Barbara J et al. Genetics in medicine : official journal of the American College of Medical Genetics 2017 Sep (Posted: Sep-16-2017 7AM)


Assessment of the impact of shared data on the scientific literature
M Milham et al, BioRxIV, September 4, 2017 (Posted: Sep-04-2017 7PM)


Clinical Trial Data as Public Goods: Fair Trade and the Virtual Knowledge Bank as a Solution to the Free Rider Problem - A Framework for the Promotion of Innovation by Facilitation of Clinical Trial Data Sharing among Biopharmaceutical Companies in the Era of Omics and Big Data.
Evangelatos Nikolaos et al. Public health genomics 2016 19(4) 211-9 (Posted: Aug-16-2017 8AM)


Building consensus on genomic data sharing
PHG Foundation, August 2, 2017 (Posted: Aug-02-2017 8AM)


Data sharing as a national quality improvement program: reporting on BRCA1 and BRCA2 variant-interpretation comparisons through the Canadian Open Genetics Repository (COGR).
Lebo Matthew S et al. Genetics in medicine : official journal of the American College of Medical Genetics 2017 Jul (Posted: Jul-26-2017 9AM)


Sharing Clinical Research Data—Finding the Right Balance
B Lo et al, JAMA Internal Medicine, July 17, 2017 (Posted: Jul-17-2017 0PM)


A new era in the interpretation of human genomic variation
Science Mag, July 17, 2017 (Posted: Jul-17-2017 0PM)


Data Sharing Statements for Clinical Trials: A Requirement of the International Committee of Medical Journal Editors.
Taichman Darren B et al. JAMA 2017 Jun (Posted: Jun-07-2017 1PM)


Sharing data under the 21st Century Cures Act
MA Majumder et al, Genetics in Medicine, May 25, 2017 (Posted: May-25-2017 0PM)


Sharing Clinical and Genomic Data on Cancer — The Need for Global Solutions
The Clinical Cancer Genome Task Team of the Global Alliance for Genomics and Health, N Engl J Med May 25, 2017 (Posted: May-24-2017 7PM)


Myriad take two: Can genomic databases remain secret?
Christi J. Guerrini, et al, Science, May 12, 2017 (Posted: May-12-2017 7AM)


Open sharing of genomic data: Who does it and why?
Haeusermann Tobias et al. PloS one 2017 12(5) e0177158 (Posted: May-10-2017 10AM)


Sharing Genome Data
C Wright, TGMI Blog Post, April 2017 (Posted: Apr-25-2017 10AM)


Massive-scale genomic data sharing to improve rare disease diagnosis
D MacArthu8r VIDEO presentation, Scripps Institute, Future of Genomic Medicine 2017 (Posted: Apr-21-2017 8AM)


Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.
Sanderson Saskia C et al. American journal of human genetics 2017 Mar 100(3) 414-427 (Posted: Apr-12-2017 8AM)


Ten Simple Rules to Enable Multi-site Collaborations through Data Sharing
MR Boland et al, Plos Comp Biol, January 2017 (Posted: Jan-27-2017 8AM)


An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health.
Rahimzadeh Vasiliki et al. Biopreservation and biobanking 2016 Jun 14(3) 256-9 (Posted: Jan-18-2017 8AM)


The Adoption of Cloud Computing in the Field of Genomics Research: The Influence of Ethical and Legal Issues.
Charlebois Kathleen et al. PloS one 2016 (10) e0164347 (Posted: Nov-02-2016 6AM)


The Importance — and the Complexities — of Data Sharing
JM Drazen et al, NEJM, September 21, 2016 (Posted: Sep-21-2016 9PM)


Data Sharing at a Crossroads
F Rockhold et al, NEJM, September 21, 2016 (Posted: Sep-21-2016 8PM)


The Virtuous Cycle of a Data Ecosystem
B Voytek, PLOS Computational Biology, AUgust 4, 2016 (Posted: Aug-11-2016 5AM)


NIH Makes Data Sharing Repositories Publically Viewable on HealthData.gov
L Dunneback, NIH, July 2016 Brand (Posted: Aug-06-2016 4PM)


Toward Fairness in Data Sharing
The International Consortium of Investigators for Fairness in Trial Data Sharing, NEJM, August 3, 2016 (Posted: Aug-04-2016 8AM)


Strengthening Research through Data Sharing
E Warren, NEJM, August 3, 2016 (Posted: Aug-04-2016 8AM)


Data Sharing and Inductive Learning — Toward Healthy Birth, Growth, and Development
N. L?ntshotsholé Jumbe, et al, NEJM, June 23, 2016 (Posted: Jun-29-2016 7AM)


The ups and downs of data sharing in science
Nature editorial, June 21, 2016 (Posted: Jun-27-2016 7AM)


Survey Launch on Public Attitudes Toward Genomic Data Sharing
A Proffit, Bio IT World, June 2016 (Posted: Jun-15-2016 7AM)


A federated ecosystem for sharing genomic, clinical data
Global Alliance for Genomics and Health, Science, June 8, 2016 (Posted: Jun-10-2016 10AM)


Sharing genomic, clinical data
EMBL-EBI, June 2016 (Posted: Jun-10-2016 7AM)


Global Alliance for Genomics & Health Argues for Federated Data Ecosystem
BioIT World, June 9, 2016 (Posted: Jun-09-2016 6PM)


U.S. project launched to promote data sharing by cancer researchers
Reuters, June 6, 2016 (Posted: Jun-06-2016 0PM)


Newly launched Genomic Data Commons to facilitate data and clinical information sharing
NCI, June 6, 2016 (Posted: Jun-06-2016 0PM)


Why an integrated network of genomic and clinical information on cancer is essential
Dog Lowy, NCI director, The Medium, June, 2016 (Posted: Jun-06-2016 0PM)


After a prominent gene-testing firm declined to give patients their complete data, ACLU filed a legal complaint
J Couzin-Frankel, Science Magazine, May 19, 2016 (Posted: May-19-2016 9PM)


Facilitating a culture of responsible and effective sharing of cancer genome data.
Siu Lillian L et al. Nature medicine 2016 May (5) 464-471 (Posted: May-06-2016 10AM)


Federal Researchers Build Massive Online Database of Genomic Data
NextGov, April 2016 (Posted: Apr-30-2016 8AM)


Genetic Test Firm to Put Customers’ Data in Public Domain
A Pollack, New York Times, March 8, 2016 (Posted: Mar-08-2016 0PM)


Genomic data sharing: How much oversight is necessary
N. Kovalevskaya,·DNA Digest, February 23, 2016 (Posted: Feb-26-2016 7AM)


Benefits of sharing
Nature editorial, February 10, 2016 (Posted: Feb-10-2016 1PM)


Open innovation in early drug discovery: roadmaps and roadblocks.
Reichman Melvin et al. Drug discovery today 2015 Dec (Posted: Jan-27-2016 10AM)


Open Access Could Transform Drug Discovery: A Case Study of JQ1.
Arshad Zeeshaan et al. Expert opinion on drug discovery 2016 Jan (Posted: Jan-27-2016 10AM)


Can Data Sharing Become the Path of Least Resistance?
PLOS Medicine editorial, January 26, 2016 (Posted: Jan-27-2016 10AM)


Balancing Benefits and Risks of Immortal Data: Participants' Views of Open Consent in the Personal Genome Project.
Zarate Oscar A et al. The Hastings Center report 2015 Dec (Posted: Jan-06-2016 7PM)


Biobanks, Data Sharing, and the Drive for a Global Privacy Governance Framework.
Dove Edward S et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2015 Dec (4) 675-89 (Posted: Jan-06-2016 7PM)


more


Disclaimer: Articles listed in Hot Topics of the Day are selected by the CDC Office of Public Health Genomics to provide current awareness of the scientific literature and news. Inclusion in the update does not necessarily represent the views of the Centers for Disease Control and Prevention nor does it imply endorsement of the article's methods or findings. CDC and DHHS assume no responsibility for the factual accuracy of the items presented. The selection, omission, or content of items does not imply any endorsement or other position taken by CDC or DHHS. Opinion, findings and conclusions expressed by the original authors of items included in the Clips, or persons quoted therein, are strictly their own and are in no way meant to represent the opinion or views of CDC or DHHS. References to publications, news sources, and non-CDC Websites are provided solely for informational purposes and do not imply endorsement by CDC or DHHS.
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