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

Secondary use of genomic data: patients’ decisions at point of testing and perspectives to inform international data sharing
M Martyn et al, EJHG, March 25, 2024 (Posted: Mar 25, 2024 8AM)

From the abstract: "International sharing of genomic data files arising from clinical testing of patients is essential to further improve genomic medicine. Whilst the general public are reluctant to donate DNA for research, the choices patients actually make about sharing their clinical genomic data for future re-use (research or clinical) are unknown. We ascertained the data-sharing choices of 1515 patients having genomic testing for inherited conditions or cancer treatment from clinical consent forms. "

Next-generation sequencing and bioinformatics in rare movement disorders.
Michael Zech et al. Nat Rev Neurol 2024 1 (Posted: Jan 15, 2024 10AM)

From the abstract: "In this Perspective, we outline multidimensional strategies for genetic diagnosis in patients with rare movement disorders. We examine bioinformatics tools and computational metrics that have been developed to facilitate accurate prioritization of disease-causing variants. Additionally, we highlight community-driven data-sharing and case-matchmaking platforms, which are designed to foster the discovery of new genotype–phenotype relationships. Finally, we consider how multiomic data integration might optimize diagnostic success by combining genomic, epigenetic, transcriptomic and/or proteomic profiling. "

Organizational Factors in Clinical Data Sharing for Artificial Intelligence in Health Care.
Alaa Youssef et al. JAMA Netw Open 2023 12 (12) e2348422 (Posted: Dec 20, 2023 9AM)

From the abstract: "Are organizational factors associated with the motivation of health organizations to share clinical data for artificial intelligence (AI) development? In this qualitative study, 27 leaders from 18 health organizations were interviewed, and a predominant concern among them was data privacy risks. Most stakeholders viewed these as a substantial barrier for public health data sharing due to potential liability and reputational consequences; however, they identified external incentives as key factors for enhancing organizational motivation and fostering both within and across-sector data-sharing collaborations for AI development. The findings of this study suggest that data-sharing policies should be rooted in feasibility and incentivization strategies to promote responsible and equitable AI development in the health care sector. "

Federated Analysis for Privacy-Preserving Data Sharing: A Technical and Legal Primer.
James Casaletto et al. Annu Rev Genomics Hum Genet 2023 5 (Posted: Jul 25, 2023 8AM)

Continued advances in precision medicine rely on the widespread sharing of data that relate human genetic variation to disease. However, data sharing is severely limited by legal, regulatory, and ethical restrictions that safeguard patient privacy. Federated analysis addresses this problem by transferring the code to the data—providing the technical and legal capability to analyze the data within their secure home environment rather than transferring the data to another institution for analysis.

Old and new challenges regarding comparable and viable data sharing in population-scale genomic research
A Raz et al, EJHG, March 31, 2023 (Posted: Mar 31, 2023 6AM)

Despite the rapid expansion of large-scale national genomic repositories and efforts to create diverse datasets, genomic diversity, which is crucial in comparative research, is not easily attainable. Many barriers to sharing genomic data have already been identified, including the interrelated challenges of comparability, confidentiality, and viability.

Data Sharing and the Growth of Medical Knowledge
A Flanagin et al, JAMA, December 5, 2022 (Posted: Dec 05, 2022 3PM)

In medical research, data sharing facilitates discovery and innovation, transparency, and reproducibility, and, ultimately, trust in science. Impelled by the COVID-19 pandemic, demands for data sharing have accelerated with increasing calls for more rapid dissemination, assessment, combination, and analyses of new medical research results. Contemporary recommendations for data sharing are based on policies developed 4 decades ago. For example, GenBank was established in 1982 as a public access repository of nucleotide sequences. In 1985, the US National Research Council (NRC)3 released a report on data sharing that continues to serve as a useful guide for researchers, authors, editors, and journals. Among the NRC’s recommendations, the following have relevance for scientific journal publication.

Without appropriate metadata, data-sharing mandates are pointless
MA Musen, Nature, September 5, 2022 (Posted: Sep 06, 2022 7AM)

The motivation behind data-sharing policies is to make data more accessible so others can use them to both verify results and conduct further analyses. But just getting those data sets online will not bring anticipated benefits: few data sets will really be FAIR, because most will be unfindable. What’s needed are policies and infrastructure to organize metadata.

A blockchain-based framework to support pharmacogenetic data sharing
F Albalwy et all, The PGX journal, July 22, 2022 (Posted: Jul 22, 2022 8AM)

The successful implementation of pharmacogenetics (PGx) into clinical practice requires patient genomic data to be shared between stakeholders in multiple settings. This creates a number of barriers to widespread adoption of PGx, including privacy concerns related to the storage and movement of identifiable genomic data. Informatic solutions that support secure and equitable data access for genomic data are therefore important to PGx. Here we propose a methodology that uses smart contracts implemented on a blockchain-based framework, PGxChain, to address this issue.

Global genomic surveillance strategy for pathogens with pandemic and epidemic potential, 2022–2032
WHO, March 2022 (Posted: Jul 19, 2022 9AM)

The Strategy provides a high-level unifying framework to leverage existing capacities, address barriers and strengthen the use of genomic surveillance in the detection, monitoring and response to public health threats. Genomic surveillance is part of the broader surveillance and laboratory system, and its implementation should reinforce end-to-end capacities including sample collection, diagnostics, data sharing and analysis. The strategy aims to facilitate the connectivity between different disease control programs and surveillance networks.

Recommendations for achieving interoperable and shareable medical data in the USA
A Sfarzman et al, Comm Medicine, July 19, 2022 (Posted: Jul 19, 2022 8AM)

We recommend the implementation of standardized data collection and transmission systems, universal identifiers for individual patients and end users, a reference standard infrastructure to support calibration and integration of laboratory results from equivalent tests, and modernized working practices. Requiring comprehensive and binding standards, rather than incentivizing voluntary and often piecemeal efforts for data exchange, will allow us to achieve the analytical information environment that patients need.

Many researchers say they’ll share data — but don’t
C Watson, Nature, June 21, 2022 (Posted: Jun 21, 2022 8AM)

Reasons included a lack of informed consent or ethics approval to share; misplaced data; and that others had moved on from the project. The team identified 381 articles with links to data stored in online repositories and another 1,792 papers for which the authors indicated in statements that their data sets would be available on reasonable request. The remaining studies stated that their data were in the published manuscript and its supplements, or generated no data, so sharing did not apply. But of the 1,792 manuscripts for which the authors stated they were willing to share their data, more than 90% of corresponding authors either declined or did not respond to requests for raw data

Maximizing Cancer Data-The Future of Cancer Is Now.
Barnholtz-Sloan Jill S et al. JAMA oncology 2022 5 (Posted: May 29, 2022 11AM)

A national cancer data ecosystem, outlined as a priority for the original Cancer Moonshot, and to be continued with the recent announcement of the Moonshot extension, could one day unite these valuable, yet disparate, initiatives, as well as new initiatives being planned, under a single publicly available system. For these data to truly be available to everyone, easy to use interfaces must be built, tested, and adjusted to allow anyone the ability to use the data regardless of their scientific or nonscientific orientation.

Walking the tightrope between data sharing and data protection
Nature Medicine, May 18, 2022 (Posted: May 19, 2022 10AM)

The potential of genomic data to advance human health is enormous, but it can be tapped only if everyone feels safe taking part. Therefore, now is the time for the field to start thinking of how to best deal with emerging and future issues of data security and privacy in genomic research. Although the solution might not be a one-size-fits-all approach, it is key to involve different expertise in the process, probably from diverse backgrounds such as informatics, ethics and law, as well as to include patients and the public in these discussions.

China expands control over genetic data used in scientific research Guidelines released this year are the latest regulations to protect China’s genetic resources, but some scientists say they are making collaborations harder.
S Mallapaty, Nature, May 6, 2022 (Posted: May 06, 2022 1PM)

Global landscape of SARS-CoV-2 genomic surveillance and data sharing
Z Chen et a, Nature Genetics, March 28, 2022 (Posted: Mar 29, 2022 7AM)

We characterize increasing circulation of the Alpha variant in early 2021, subsequently replaced by the Delta variant around May 2021. SARS-CoV-2 genomic surveillance and sequencing availability varied markedly across countries, with 45 countries performing a high level of routine genomic surveillance and 96 countries with a high availability of SARS-CoV-2 sequencing. We also observed a marked heterogeneity of sequencing percentage, sequencing technologies, turnaround time and completeness of released metadata across regions and income groups. A total of 37% of countries with explicit reporting on variants shared less than half of their sequences of variants of concern (VOCs) in public repositories.

Translational Science, DNA Commercialization, and Informed Consent: The Need for Specific Terminology, Insights from a Review of H3Africa Projects
P Marshall et al, Public Health Genomics, March 2022 (Posted: Mar 13, 2022 10AM)

Eighteen investigators submitted documents for projects involving data sharing and use of genetic information. A total of 39 informed consent documents associated with the 18 projects were reviewed. All 18 projects specified that samples would be used in future research. Less than half of the projects included language noting that samples could be used in drug or product development, that DNA samples would not be sold, and that profits would not be shared with participants. Four projects referred to commercialization. Analysis of information included in consent documents contributed to the development of a Commercialization Typology. The Typology identifies factors to consider regarding acceptability of particular instances of commercialization. DNA samples for translational research in product development require a transparent commercialization framework to inform the consent process.

NIH issues a seismic mandate: share data publicly- The data-sharing policy could set a global standard for biomedical research, scientists say, but they have questions about logistics and equity.
M Koslov, Nature, February 16, 2022 (Posted: Feb 16, 2022 2PM)

Time to make rare disease diagnosis accessible to all
HL Rehm, Nature Medicine, February 7, 2022 (Posted: Feb 07, 2022 0PM)

Studies have demonstrated the value of genomic analysis for the diagnosis of rare diseases, but accessibility is still in its infancy; global data sharing is needed to further advance our knowledge of all causes of rare disease.

Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life
AM Mc Cartney et al, PNAS, January 25, 2022 (Posted: Jan 24, 2022 1PM)

Past model of large consortia generating vast troves of data, favoring the inclusion of some over the exclusion of others, is both damaging and inequitable. These ambitious projects will require contributions from community and academic partners around the globe, and so the genomics community must develop and implement inclusive data-sharing policies and infrastructure that respect the rights and interests of all people.

Stewardship of patient genomic data: A policy statement of the American College of Medical Genetics and Genomics (ACMG)
RG Best et al, Genetics in Medicine, December 16, 2021 (Posted: Dec 17, 2021 6AM)

When ordering genetic tests, clinicians should alert patients of any laboratory policies noted in the laboratory’s consent/requisition form about how patient results and data may be shared in de-identified form for research, giving patients the choice to participate or not. At a minimum, patients must have the opportunity to opt out. The testing laboratory is the primary steward over the protection of the patient’s interests in controlling the privacy of genetic information.

Genomics in Health Implementation Forum
GA4GH Meeting November 16-17,2021 (Posted: Oct 09, 2021 7AM)

On November 16 & 17, 2021, initiatives from around the globe will convene for a meeting of the Genomics in Health Implementation Forum (GHIF). The GHIF aims to support accurate data interpretation, diagnosis, and innovative solutions through global cooperation in data sharing and clinical implementation of genomics. The forum helps initiatives reduce duplication of efforts and promote the collection of compatible clinical genomic data and health information to enable data sharing.

Computational challenges and opportunities in spatially resolved transcriptomic data analysis
L Atta et al, Nature Comms, September 6, 2021 (Posted: Sep 08, 2021 9AM)

Spatially resolved transcriptomic data demand new computational analysis methods to derive biological insights. Here, we comment on these associated computational challenges as well as highlight the opportunities for standardized benchmarking metrics and data-sharing infrastructure in spurring innovation moving forward.

A safer way to share health data.
O'Leary Karen et al. Nature medicine 2021 6 (Posted: Jun 12, 2021 7AM)

Artificial intelligence (AI)-based tools are becoming ever more proficient at clinical decision-making. However, the requirement for large datasets means that data must be either stored centrally or controlled by central custodians, which raises concerns about data ownership, confidentiality and security.

Solve-RD: systematic pan-European data sharing and collaborative analysis to solve rare diseases
B Zurek et al, EJHG, June 1, 2021 (Posted: Jun 01, 2021 10AM)

Two major approaches are being pursued (i) massive data re-analysis of >19,000 unsolved rare disease patients and (ii) novel combined -omics approaches. The minimum requirement to be eligible for the analysis activities is an inconclusive exome that can be shared with controlled access. The first preliminary data re-analysis has already diagnosed 255 cases form 8393 exomes/genome datasets.

Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
R Milne et al, Genome Medicine, May 25, 2021 (Posted: May 26, 2021 6AM)

Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data.

Host Genomics and COVID-19: One Year Later
MJ Khoury et al, CDC Blog Post, April 2, 2021 Brand (Posted: Apr 03, 2021 7AM)

Current collaborative efforts illustrate how quickly the human genetics scientific community has come together from around the world to address the pandemic. The identification of new host genetic factors associated with COVID-19 is propelled by data sharing, joint analyses, and publications of findings. Such collaborations provide an example for team science in addressing future pandemics of human disease.

Emerging Infectious Diseases — Learning from the Past and Looking to the Future
C. Elias et al, NEJM, March 31, 2021 (Posted: Apr 01, 2021 6AM)

In an era of nearly limitless digital potential, we can harness the tools of the information age to share essential data for detecting new pathogens, accelerating product development, and enhancing pandemic response efforts. Countries should work together to break down barriers to data sharing while taking steps to protect privacy and prevent misuse

Disease monitoring programs of rare genetic diseases: transparent data sharing between academic and commercial stakeholders.
Lochmüller Hanns et al. Orphanet journal of rare diseases 2021 16(1) 141 (Posted: Mar 26, 2021 9AM)

Is “bioinformatics” dead?
P Bourne, PLOS Biology, March 2021 (Posted: Mar 22, 2021 7AM)

Now that I have your attention, clearly, bioinformatics as a field is very much alive. The name, however, no longer applies to what we actually do in the field. It is not what forward-thinking scientists should be calling themselves in this era of the fourth paradigm of data science [1], where data sharing lies at the core of biology. If you’re asking why anyone should care, let me explain.

The broken promise that undermines human genome research
K Powell, Nature News, February 10, 2021 (Posted: Feb 11, 2021 7AM)

Data sharing was a core principle that led to the success of the Human Genome Project 20 years ago. Now scientists are struggling to keep information free.

Scientists call for fully open sharing of coronavirus genome data
R van Noorden, Nature News, February 3, 2021 (Posted: Feb 04, 2021 7AM)

Hundreds of scientists are urging that SARS-CoV-2 genome data should be shared more openly to help analyze how viral variants are spreading around the world. Researchers have posted huge numbers of SARS-CoV-2 genome sequences online since January 2020. The most popular data-sharing platform, called GISAID, now hosts more than 450,000 viral genomes.

The Brazilian Initiative on Precision Medicine (BIPMed): fostering genomic data-sharing of underrepresented populations
CS Rocha et al, NPJ Genomic Medicine, October 2, 2020 (Posted: Oct 03, 2020 5PM)

The development of precision medicine strategies requires prior knowledge of the genetic background of the target population. However, despite the availability of data from admixed Americans within large reference population databases, we cannot use these data as a surrogate for that of the Brazilian population.

Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?
Middleton Anna et al. American journal of human genetics 2020 Sep (Posted: Sep 24, 2020 10AM)

Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of the concepts of DNA, genetics, and genomics. Willingness to donate one's DNA and health data for research is relatively low, and trust in the process of data's being shared with multiple users is also low.

Data Sharing in a Time of Pandemic
S Callaghan, Patterns, August 2020 (Posted: Aug 15, 2020 6AM)

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)

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