Table 1.
Overview of survey results, describing the different calls of IRDiRC members that are dedicated, in part or fully to ELSI aspects
| IRDiRC funder(s) | Country | Name of call | Topics covered |
|---|---|---|---|
| Rare diseases calls covering ELSI | |||
| • EC | • Europe | • Horizon 2020 Call Topic “Rare Disease European Joint Program Cofund” | • Relevant ethical, legal, sex/gender and societal aspects of rare diseases research on consequences of a rare disease at the individual and societal levels |
| • FFRD | • France | • Social Sciences and Humanities & Rare Diseases | • Aims to better understand the consequences related to the rarity of the disease and the specific impacts in terms of disability and quality of life |
| • ZonMW | • The Netherlands | • Personalized medicine: service desk ethics and law | • Service desk that offers information on ethical, societal and juridical questions on personalized medicine research |
| General call covering ELSI | |||
| • ANR | • France | • Franco-German call for proposals in Social Sciences and Humanities | • To support projects that address health and social care delivery at the system and infrastructure level as well as the patient, carers and family level |
| • ANR | • France | • Joint Translational Call for Multinational Research Projects on Health and Social Care for Neurodegenerative Diseases | • To join networks of research in the humanities and social sciences |
| • AMED | • Japan | • Leading the way to Genomic Medicine by ELSI Research Program | • A research program that promotes to address ELSI in order to realize genome medicine |
| • BMBF | • Germany | • Ethical, Legal and Social Aspects of the Modern Life Sciences | • To promote research projects on the ethical, legal and social aspects of digitization in health research and care |
| • NEI, NICHD, NINDS | • USA | • BRAIN Initiative: Research on the Ethical Implications of Advancements in Neurotechnology and Brain Science | • Addressing core ethical issues associated with research focused on the human brain and resulting from emerging technologies |
| • NHGRI | • USA | • Human Heredity and Health in Africa (H3Africa): ELSI Collaborative Centers | • Study the ELSI of human genome research in African populations, particularly projects that focus on bioethical, legal, and social science analyses of new or emerging issues |
| • NHGRI | • USA | • Centers of Excellence in ELSI Research | • Supports the establishment of sustainable trans-disciplinary research teams to conduct research on, and quickly address a range of cutting edge ELSI issues related to genetics and genomics |
| • NHGRI, NCI, NICHD, NINDS | • USA | • ELSI of Genomics Research Project Grant Program | • Study the ELSI of human genome research, using either single or mixed methods |
| • ZonMw | • The Netherlands | • Ethics and Health | • Allows research in the field of ethics in health care, in order to increase insight into and knowledge about concrete, current, ethical dilemmas or questions in the area of ethics and health |
| Call programs with ELSI component | |||
| • ANR | • France | • General call | • Includes a topic to support research in support of the challenge “Life, health and well-being” |
| • AMED | • Japan | • Research and Development Program for Enhancement of Research Integrity | • To support research on strengthening research integrity |
| • CIHR, Genome Canada | • Canada | • Large-Scale Applied Research Project Competition: Genomics and Precision Health | • Includes an element to study genomics and its ethical, environmental, economic, legal and social aspects |
| • EC | • Europe | • General H2020 call | • A part of each project has a “Science with and for Society” section, that is dedicated to societal and ethics aspects of research and innovation |
| • E-Rare | • Europe | • General call | • Each project should cover issues in relation to data sharing (data management plan), involvement of patients, ethical aspects of use of iPSC and animal models, when applicable |
| • ISCIII | • Spain | • General call | • Implies using a legal and ethical framework that needs to be applied to all research projects |
| • NCI | • USA | • Social Epigenomics Research Focused on Minority Health and Health Disparities | • Characterize the mechanisms by which social experiences at various stages in life, both positive and negative, affect gene function and thereby influence health trajectories |
| • NCI, NEI | • USA | • Methodology and Measurement in the Behavioral and Social Sciences | • Aimed at improving and developing methodology in the behavioral and social sciences |
| • NCI, NIAMS | • USA | • Exploratory/Developmental Surgical Disparities Research | • To address disparities in surgical care and outcomes, in minority and health disparity populations |
| • NICHD, NCI, NIDCR | • USA | • The Health of Sexual and Gender Minority (SGM) Populations | • To investigate ethical and legal implications of the proposed research on SGM population |
| • NHGRI, NICHD | • USA | • Genomic Sequencing and Newborn Screening Disorders | • To explore the challenges, opportunities, and ELSI implications associated with the use of genomic sequencing in the newborn period, including newborn screening. |
| • FIC, NHGRI | • USA | • International Research Ethics Education and Curriculum Development Award | • Support educational activities that foster a better understanding of biomedical, behavioral and clinical research and its implications, by strengthening research ethics capacity in low- and middle-income countries |
| • FIC, NHGRI | • USA | • International Bioethics Research Training Program | • Support the development of a sustainable critical mass of bioethics scholars in low- and middle-income country research |
| • NHGRI, NCI | • USA | • Clinical Sequencing Evidence-Generating Research | • Serve as a venue for consideration of ethical and psychosocial implications of returning genomic data results to patients |
| • ZonMw | • The Netherlands | • General call | • Includes a data management plan, so that underlying data, can be verified and reused |
Calls are separated in three types: (1) Rare diseases calls, that cover ELSI; (2) General calls, covering ELSI, where rare diseases researchers could apply; and (3) Calls with an ELSI component, potentially related to, but not specific to rare diseases