Project description
Ethical distribution of data: from citizens to scientists
Genetics provides crucial information on many diseases, and isolating genetic markers associated with phenotypes is one of the most promising frontiers of scientific discovery. However, the collection of such data is undertaken by commercial genetics companies, with scientists having limited access to them. Individual citizens can donate their genetic data to ensure that they are available to scientists in exchange for information transparency. The EU-funded DNA4Science project aims to develop a social business enterprise for the ethical distribution of data that will be accessible to scientists on a cost-recovery basis. The scientists will gain access to aggregated digital phenotypes and cost-effective data collections, and they will be able to customise questionnaire modules. DNA4Science highlights citizens’ rights in data collection and distribution with the potential to lower the costs of medical treatments.
Objective
Isolating genetic markers associated with phenotypes (i.e. diseases and behaviour) is one of the most promising frontiers of scientific discovery. Genetics plays a key role in understanding multiple diseases, holding a promise for medical interventions and drug targets. Attention to genotype measurement has resulted in a neglect of novel and precision phenotypes and novel measurement of other individual and environmental characteristics. Although combined genotype-phenIsolating genetic markers associated with phenotypes (i.e. diseases and behaviour) is one of the most promising frontiers of scientific discovery. Genetics plays a key role in understanding multiple diseases, holding a promise for medical interventions and drug targets. Attention to genotype measurement has resulted in a neglect of novel and precision phenotypes and attention to the measurement of other individual and environmental characteristics. Although this data is vital for scientific discovery, the largest datasets are now held by commercial direct-to-consumer (DTC) genetics companies, with increasingly limited access to scientists. Individual citizens, however, are ‘data owners’ and can freely download and donate their DTC genetic data, digital archives and fill in surveys to DNA4Science to take back control and ensure their data is used broadly by scientists. In return they receive transparency, control and reciprocity. The aim of DNA4Science is to develop a sustainable social business enterprise to ethically distribute donated data for use by certified scientists on a cost-recovery basis. Researchers will gain access to unique and novel data including aggregated digital phenotypes, ability to add customized questionnaire modules, cost-effective data collection and professional rapid dissemination. DNA4Science has the potential to lower costs of treatments and hasten their speed to market, democratizes data ownership with the rights of citizens first and lowers the costs of data collection.
Fields of science (EuroSciVoc)
CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: The European Science Vocabulary.
CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: The European Science Vocabulary.
- natural sciences biological sciences genetics heredity
- humanities other humanities library sciences digital humanities
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Keywords
Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)
Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)
Programme(s)
Multi-annual funding programmes that define the EU’s priorities for research and innovation.
Multi-annual funding programmes that define the EU’s priorities for research and innovation.
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H2020-EU.1.1. - EXCELLENT SCIENCE - European Research Council (ERC)
MAIN PROGRAMME
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Topic(s)
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Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.
Funding Scheme
Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.
Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.
ERC-POC - Proof of Concept Grant
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Call for proposal
Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.
Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.
(opens in new window) ERC-2020-PoC
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Net EU financial contribution. The sum of money that the participant receives, deducted by the EU contribution to its linked third party. It considers the distribution of the EU financial contribution between direct beneficiaries of the project and other types of participants, like third-party participants.
OX1 2JD Oxford
United Kingdom
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