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GA4GH: International policies and standards for data sharing across genomic research and healthcare.

ABSTRACT: The Global Alliance for Genomics and Health (GA4GH) aims to accelerate biomedical advances by enabling the responsible sharing of clinical and genomic data through both harmonized data aggregation and federated approaches. The decreasing cost of genomic sequencing (along with other genome-wide molecular assays) and increasing evidence of its clinical utility will soon drive the generation of sequence data from tens of millions of humans, with increasing levels of diversity. In this perspective, we present the GA4GH strategies for addressing the major challenges of this data revolution. We describe the GA4GH organization, which is fueled by the development efforts of eight Work Streams and informed by the needs of 24 Driver Projects and other key stakeholders. We present the GA4GH suite of secure, interoperable technical standards and policy frameworks and review the current status of standards, their relevance to key domains of research and clinical care, and future plans of GA4GH. Broad international participation in building, adopting, and deploying GA4GH standards and frameworks will catalyze an unprecedented effort in data sharing that will be critical to advancing genomic medicine and ensuring that all populations can access its benefits.

SUBMITTER: Rehm HL

PROVIDER: S-EPMC8774288 | biostudies-literature | 2021 Nov

REPOSITORIES: biostudies-literature

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GA4GH: International policies and standards for data sharing across genomic research and healthcare.

Rehm Heidi L HL Page Angela J H AJH Smith Lindsay L Adams Jeremy B JB Alterovitz Gil G Babb Lawrence J LJ Barkley Maxmillian P MP Baudis Michael M Beauvais Michael J S MJS Beck Tim T Beckmann Jacques S JS Beltran Sergi S Bernick David D Bernier Alexander A Bonfield James K JK Boughtwood Tiffany F TF Bourque Guillaume G Bowers Sarion R SR Brookes Anthony J AJ Brudno Michael M Brush Matthew H MH Bujold David D Burdett Tony T Buske Orion J OJ Cabili Moran N MN Cameron Daniel L DL Carroll Robert J RJ Casas-Silva Esmeralda E Chakravarty Debyani D Chaudhari Bimal P BP Chen Shu Hui SH Cherry J Michael JM Chung Justina J Cline Melissa M Clissold Hayley L HL Cook-Deegan Robert M RM Courtot Mélanie M Cunningham Fiona F Cupak Miro M Davies Robert M RM Denisko Danielle D Doerr Megan J MJ Dolman Lena I LI Dove Edward S ES Dursi L Jonathan LJ Dyke Stephanie O M SOM Eddy James A JA Eilbeck Karen K Ellrott Kyle P KP Fairley Susan S Fakhro Khalid A KA Firth Helen V HV Fitzsimons Michael S MS Fiume Marc M Flicek Paul P Fore Ian M IM Freeberg Mallory A MA Freimuth Robert R RR Fromont Lauren A LA Fuerth Jonathan J Gaff Clara L CL Gan Weiniu W Ghanaim Elena M EM Glazer David D Green Robert C RC Griffith Malachi M Griffith Obi L OL Grossman Robert L RL Groza Tudor T Guidry Auvil Jaime M JM Guigó Roderic R Gupta Dipayan D Haendel Melissa A MA Hamosh Ada A Hansen David P DP Hart Reece K RK Hartley Dean Mitchell DM Haussler David D Hendricks-Sturrup Rachele M RM Ho Calvin W L CWL Hobb Ashley E AE Hoffman Michael M MM Hofmann Oliver M OM Holub Petr P Hsu Jacob Shujui JS Hubaux Jean-Pierre JP Hunt Sarah E SE Husami Ammar A Jacobsen Julius O JO Jamuar Saumya S SS Janes Elizabeth L EL Jeanson Francis F Jené Aina A Johns Amber L AL Joly Yann Y Jones Steven J M SJM Kanitz Alexander A Kato Kazuto K Keane Thomas M TM Kekesi-Lafrance Kristina K Kelleher Jerome J Kerry Giselle G Khor Seik-Soon SS Knoppers Bartha M BM Konopko Melissa A MA Kosaki Kenjiro K Kuba Martin M Lawson Jonathan J Leinonen Rasko R Li Stephanie S Lin Michael F MF Linden Mikael M Liu Xianglin X Udara Liyanage Isuru I Lopez Javier J Lucassen Anneke M AM Lukowski Michael M Mann Alice L AL Marshall John J Mattioni Michele M Metke-Jimenez Alejandro A Middleton Anna A Milne Richard J RJ Molnár-Gábor Fruzsina F Mulder Nicola N Munoz-Torres Monica C MC Nag Rishi R Nakagawa Hidewaki H Nasir Jamal J Navarro Arcadi A Nelson Tristan H TH Niewielska Ania A Nisselle Amy A Niu Jeffrey J Nyrönen Tommi H TH O'Connor Brian D BD Oesterle Sabine S Ogishima Soichi S Wang Vivian Ota VO Paglione Laura A D LAD Palumbo Emilio E Parkinson Helen E HE Philippakis Anthony A AA Pizarro Angel D AD Prlic Andreas A Rambla Jordi J Rendon Augusto A Rider Renee A RA Robinson Peter N PN Rodarmer Kurt W KW Rodriguez Laura Lyman LL Rubin Alan F AF Rueda Manuel M Rushton Gregory A GA Ryan Rosalyn S RS Saunders Gary I GI Schuilenburg Helen H Schwede Torsten T Scollen Serena S Senf Alexander A Sheffield Nathan C NC Skantharajah Neerjah N Smith Albert V AV Sofia Heidi J HJ Spalding Dylan D Spurdle Amanda B AB Stark Zornitza Z Stein Lincoln D LD Suematsu Makoto M Tan Patrick P Tedds Jonathan A JA Thomson Alastair A AA Thorogood Adrian A Tickle Timothy L TL Tokunaga Katsushi K Törnroos Juha J Torrents David D Upchurch Sean S Valencia Alfonso A Guimera Roman Valls RV Vamathevan Jessica J Varma Susheel S Vears Danya F DF Viner Coby C Voisin Craig C Wagner Alex H AH Wallace Susan E SE Walsh Brian P BP Williams Marc S MS Winkler Eva C EC Wold Barbara J BJ Wood Grant M GM Woolley J Patrick JP Yamasaki Chisato C Yates Andrew D AD Yung Christina K CK Zass Lyndon J LJ Zaytseva Ksenia K Zhang Junjun J Goodhand Peter P North Kathryn K Birney Ewan E

Cell genomics 20211101 2

The Global Alliance for Genomics and Health (GA4GH) aims to accelerate biomedical advances by enabling the responsible sharing of clinical and genomic data through both harmonized data aggregation and federated approaches. The decreasing cost of genomic sequencing (along with other genome-wide molecular assays) and increasing evidence of its clinical utility will soon drive the generation of sequence data from tens of millions of humans, with increasing levels of diversity. In this perspective, ...[more]

PMID: 35072136

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Project description:BACKGROUND:There is wide agreement in the biomedical research community that research data sharing is a primary ingredient for ensuring that science is more transparent and reproducible. Publishers could play an important role in facilitating and enforcing data sharing; however, many journals have not yet implemented data sharing policies and the requirements vary widely across journals. This study set out to analyze the pervasiveness and quality of data sharing policies in the biomedical literature. METHODS:The online author's instructions and editorial policies for 318 biomedical journals were manually reviewed to analyze the journal's data sharing requirements and characteristics. The data sharing policies were ranked using a rubric to determine if data sharing was required, recommended, required only for omics data, or not addressed at all. The data sharing method and licensing recommendations were examined, as well any mention of reproducibility or similar concepts. The data was analyzed for patterns relating to publishing volume, Journal Impact Factor, and the publishing model (open access or subscription) of each journal. RESULTS:A total of 11.9% of journals analyzed explicitly stated that data sharing was required as a condition of publication. A total of 9.1% of journals required data sharing, but did not state that it would affect publication decisions. 23.3% of journals had a statement encouraging authors to share their data but did not require it. A total of 9.1% of journals mentioned data sharing indirectly, and only 14.8% addressed protein, proteomic, and/or genomic data sharing. There was no mention of data sharing in 31.8% of journals. Impact factors were significantly higher for journals with the strongest data sharing policies compared to all other data sharing criteria. Open access journals were not more likely to require data sharing than subscription journals. DISCUSSION:Our study confirmed earlier investigations which observed that only a minority of biomedical journals require data sharing, and a significant association between higher Impact Factors and journals with a data sharing requirement. Moreover, while 65.7% of the journals in our study that required data sharing addressed the concept of reproducibility, as with earlier investigations, we found that most data sharing policies did not provide specific guidance on the practices that ensure data is maximally available and reusable.

Project description:BackgroundData sharing is commonly seen as beneficial for science but is not yet common practice. Research funding agencies are known to play a key role in promoting data sharing, but German funders' data sharing policies appear to lag behind in international comparison. This study aims to answer the question of how German data sharing experts inside and outside funding agencies perceive and evaluate German funders' data sharing policies and overall efforts to promote data sharing.MethodsThis study is based on sixteen guided expert interviews with representatives of German funders and German research data experts from stakeholder organisations, who shared their perceptions of German' funders efforts to promote data sharing. By applying the method of qualitative content analysis to our interview data, we categorise and describe noteworthy aspects of the German data sharing policy landscape and illustrate our findings with interview passages.ResultsWe present our findings in five sections to distinguish our interviewees' perceptions on a) the status quo of German funders' data sharing policies, b) the role of funders in promoting data sharing, c) current and potential measures by funders to promote data sharing, d) general barriers to those measures, and e) the implementation of more binding data sharing requirements.Discussion and conclusionAlthough funders are perceived to be important promoters and facilitators of data sharing throughout our interviews, only few German funding agencies have data sharing policies in place. Several interviewees stated that funders could do more, for example by providing incentives for data sharing or by introducing more concrete policies. Our interviews suggest the academic freedom of grantees is widely perceived as an obstacle for German funders in introducing mandatory data sharing requirements. However, some interviewees stated that stricter data sharing requirements could be justified if data sharing is a part of good scientific practice.

Dataset Information

GA4GH: International policies and standards for data sharing across genomic research and healthcare.

Publications

GA4GH: International policies and standards for data sharing across genomic research and healthcare.

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