Who manages ELSIhub?
CERA, and the management of its web platform ELSIhub, are co-led by the Stanford Center for Biomedical Ethics and the Division of Ethics at Columbia University, in partnership with The Hastings Center and the Personal Genetics Education Project (pgEd) at Harvard University.
Who is ELSIhub funded by?
CERA and ELSIhub are funded by the ELSI Research Program of the National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH) (1U24HG010733-01).
What is the mission of the Center for ELSI Resources and Analysis (CERA)?
The Center for ELSI Resources & Analysis (CERA) builds the community of multidisciplinary researchers focused on the ethical, legal, and social implications (ELSI) of genetics and genomics and provides this platform to enhance the production, sharing, and use of ELSI research.
How do you make decisions about which programs or initiatives should be prioritized?
CERA hosts an annual CERA Programming Meeting in which members of its Steering Committee and Advisory Board brainstorm future plans, engagement strategies, and programmatic prioritization. CERA also engages stakeholders in priority setting discussions at the the American Society of Bioethics and Humanities (ASBH) and the American Society of Human Genetics (ASHG).
What is the purpose of the ELSI Friday Forum?
The ELSI Friday Forum (EFF) was intended to create a community of scholars, scientists and other stakeholders in ELSI research through regular, ongoing discussion of high priority ELSI research, and policies and practices related to ELSI.
The EFF was designed to generate traffic to ELSIhub through the registration process and return visits for EFF recordings and resources. The topics inform the foci of ELSIhub Collections and create a synergistic mechanism for convening and building community and providing curated scholarly resources through engagement and participation by ELSI researchers.
How do you select topics and speakers for the ELSI Friday Forum?
The ELSI Friday Forum (EFF) topics are identified through review of ELSI related RFAs, funded research, conferences and workshops, and suggestions offered from the CERA Advisory Board, steering committee members, staff, and direct suggestions from colleagues and survey results and suggestions from ELSIhub event audience members. EFF topics are also chosen to attract new audiences to ELSI such as topics of interest to genetic counselors and data scientists.
The EFF organizing committee meets every two weeks and is formed from members of the CERA Advisory Board, organizing committee, and consultants as well as staff members from both the Stanford and Columbia teams. The first EFF survey invited trainees to serve on the EFF committee; as a result of this call, trainees Julie Cakici and Sheethal Jose joined.
Current members include:
Sandra Soo-Jin Lee, Columbia University
Mildred Cho, Stanford University
Dounya Alami-Nassif, Columbia University
Shawna Benston, Columbia University
Maya Sabatello, Columbia University
Josephine Johnston, The Hastings Center, University of Otago
Aaron Goldenberg, Case Western Reserve University,
Sheethal Jose, Johns Hopkins University
Julie Cakici, University of California, San Diego
Rachel Yarmolinsky, Columbia University
Tiana Sepahpour, Columbia University
David Lamb, Columbia University
Membership in the EFF Organizing Committee memberships is on a rotating basis. Open calls are announced in the CERA newsletter.
We welcome and encourage members of the ELSI community to share ideas for CERA programming. To share ideas with us, anyone can click the “Tell us anything” or “Contribute content” buttons on ELSIhub, email us personally or at [email protected], and fill out the evaluation survey they receive after every event.
What is the purpose of ELSIconversations?
ELSIconversations is a series of networking events focused on a range of ELSI research topics. Each series brings something new to the conversation–be it a novel use of research methodologies, the latest developments in genomics, new trainee research, or any topic suggested by our community of ELSI researchers and those with an interest in ELSI research. The goal of ELSIconversations is for everyone involved to make new connections and start new conversations about ELSI research.
How are ELSIconversations topics and contributors selected?
Anyone can propose a new ELSIconversations session or series by sending a proposal to CERA (see “How do I submit a proposal for an ELSIconversations Series” for more information). CERA organizes ELSIconversations in response to post-event survey suggestions, submissions via the “Tell us Anything” button on ELSIhub.org, email submissions, our TraineeHub, and from the biennial ELSI Congresses. Proposals are selected following review by CERA staff, Steering Committee, and Advisory Board based on their potential to be of interest to the CERA audience and ability to advance our aim to include contributors from a broad range of disciplines, professional backgrounds, and lived experiences. CERA may arrange external review if specific expertise is needed.
How do I submit a proposal for an ELSIconversations Series?
To propose a new ELSIconversations event or series, please fill out this form. We recommend that you attend or watch a recording of a past ELSIconversations session prior to submitting a proposal form to familiarize yourself with the format and structure of ELSIconversations. Approved proposers will receive CERA support with logistics, including guidance toward an effective format; outreach support and administration. Recorded videos of the event or events in the series and other outputs will be hosted on ELSIhub.org.
What is the purpose of ELSIhub Collections?
ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors, often paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information.
How are topics and contributors for ELSIhub Collections selected?
Our selection of ELSIhub Collections topics and contributors are guided by 3 considerations: 1) that the topic complement or expand, but not duplicate, the discussion in the ELSI Friday Forum (EFF) seminar convened within the same month (at which the collection will be shared), 2) for the purposes of distributing effort, that the Collection Editor not be a speaker or moderator for the EFF seminar convened in the same month, and 3) that the collection fill a gap in our coverage of ELSI research topics and/or be non-duplicative of others in the ELSIhub Collections series.
How do we determine which publications are included in the database?
The database includes English-language materials on the ethical, legal, and social implications of genetics and genomics and related life sciences. As we are defining it, ELSI research includes materials that have a genetics or genomics component and an ethical, legal, and/or social implications component.
How does the CERA populate the ELSI Publications Database?
CERA staff add ELSI publications as they appear in weekly PubMed and APA PsychNet email alerts and scan the following popular ELSI journals for relevant content monthly:
- Genetics in Medicine
- Journal of Law, Medicine & Ethics
- American Journal of Bioethics
- AJOB Empirical Bioethics
- Journal of Empirical Research on Human Research Ethics
- Public Health Genomics
- Journal of Genetic Counseling
- Journal of the American Medical Informatics Association
- American Journal of Medical Genetics
- Hastings Center Report
- American Journal of Human Genetics
- Ethics & Human Research
- The European Journal of Human Genetics
- New England Journal of Medicine
- Journal of Law and the Biosciences
- Journal of Law, Medicine & Ethics
Our journal list includes the most frequently occurring journal titles in the NHGRI ELSI Research Program Publications and Products database. To ensure inclusive coverage, we also augmented the list with journal suggestions from law and biosecurity focused ELSI scholars
In addition to works sourced by CERA staff each month from the journal list, the database includes publications and products funded by the ELSI Research Program of the National Human Genome Research Institute (NHGRI); selections from the GenETHX: Genetics and Ethics database created by the Bioethics Research Library, Georgetown University; the ELSI Archives, curated by the Center for Genetic Research Ethics and Law, Case Western Reserve University; relevant items from the retrospective of the DOE ELSI program, prepared by Daniel Drell, then manager of the ELSI component of the DOE Human Genome Program, and Anne Adamson, then of Human Genome Management Information System (HGMIS); and publications curated by the guest editors of ELSIhub Collections.
We welcome submissions of published articles from the ELSI community to [email protected].
How do I submit my published article to be included in the database?
Please send the citation of your publication to [email protected].
How do we determine which publications to promote to the ELSI community?
CERA staff selects recently published articles to feature in the New Publications section of ELSIhub and the CERA Twitter account. We choose items that are of interest to a general audience, offer novel findings or new perspectives on well-studied issues, and/or shine a light on emerging or understudied issues. We review these items for potential conflicts of interest that could introduce bias and make an effort to highlight a broad range of institutions and research groups.
Is the ELSI Publications database comprehensive of all ELSI scholarship?
We make every effort to ensure that the database includes all ELSI scholarship reported to the ELSI Research Program of the National Human Genome Research Institute (NHGRI) as the product of an ELSI grant. Because empirical scholarship is overrepresented in the portfolio of the ELSI Research Program, it is likely that our strategy misses some normative, legal, and conceptual works. Given the lack of a central reporting mechanism for these works and their location in a variety of discipline-specific repositories, their exact number is unknown. We attempt to source unfunded works using the hand search and acquisition methods described above; however, given the scope of this challenge, it is unlikely that our database is comprehensive of all ELSI scholarship.
What content types and date range does the ELSI Publications database cover?
The database includes journal articles, book chapters, books, conference proceedings, reports, documents, videos, and websites authored from 1990 (the birth of the ELSI Research Program at NHGRI) through the present.
How frequently is the ELSI Publications database updated?
The ELSI Publications database is systematically updated monthly and on an ad hoc basis.
What is a research tool?
The CERA broadly defines research tools as data collection instruments and other materials used in the production of empirical research. The ELSIhub database includes a diverse set of published and unpublished items relevant to the empirical study of the ethical, legal, and social implications of genetics and genomics including, for example, recruitment flyers, consent form templates, interview guides, psychometric scales, surveys, participant screeners, curricula, educational brochures, videos, and more. While correspondence with the CERA prior to submission is not required, if you would like to confirm that your tool is appropriate for submission to the database, you can email us at [email protected].
What is the purpose of the ELSIhub Research Tools database?
This resource was created to support the development of a synergistic and coordinated scholarly community engaged in the study of the ethical, legal, and social implications (ELSI) of genetics and genomics across disciplines and national boundaries. We hope it will advance the shared aim of producing a robust evidence base for the ELSI field.
Why should I share my published and unpublished research tools?
Shared research tools promise the following benefits to ELSI scholars and scholarship:
- the ability to compare results across studies, populations, institutions, geographies, etc.;
- the ability to pool data to construct larger sample sizes;
- enhanced ability to synthesize the published findings of ELSI research;
- greater methodological transparency and improved study reporting;
- the more efficient use of research resources, including public money and academic labor
Sharing research tools also promises the following benefits to individuals:
- the ability to see what already exists before developing new instruments;
- citation by individuals who use your published instruments;
- enhanced visibility for your scholarship;
- the possibility of having your results confirmed by others.
I am concerned that people will use my work without properly crediting me, alter it, or use it in ways I never intended. What can I do?
If you own the copyright to your work, you can grant the public permission to use your work under copyright law by applying one of the 6 Creative Commons license types (CC BY, CC BY-SA, CC BY-NC, CC BY-NC-SA, CC BY-ND, or CC BY-NC-ND). All of these require that users of the work attribute it to the creator, and you can select a license within a permissive to restrictive range of possible uses. To CC-license your work, choose the license that suits your needs and communicate your choice by adding text and a link to the license to your work, like this: “© 2021. This work is licensed under a CC BY 4.0 license”.
I am concerned about competition in my research area. Is sharing research tools for me?
Yes! It is to your advantage to share published tools in your research area because doing so may result in increased citation of your work. If your tool is unpublished, to address this concern, you might consider publishing your study before sharing the associated tools.
I don’t think my research tools have utility beyond the study they were originally created for. Should I still submit them?
Yes! Over half of the ELSI scholars we surveyed reported that the ability to modify a research tool was relevant to their decision to use it in their research. This suggests the community is interested in refining or adapting existing tools for their purposes.
How long will the ELSIhub Research Tools database exist?
The CERA is funded through May 2024 as a cooperative agreement between the universities that manage ELSIhub and the ELSI Research Program of the National Human Genome Research Institute (NHGRI). As a condition of our funding, NHGRI requires that all CERA resources be designed as non-proprietary, open source, and easily transferred to other institutions. In short, the ELSIhub Research Tools database will exist as long as the NHGRI funds the CERA and, should that funding end, is set up to be transferred to an archival website.
What is the research tool submission process?
Please complete the questionnaire below and email your responses with a PDF version or link to the website that houses the research tool to [email protected].
- Title of research tool:
- Year created:
- Research population:
- Does this research tool contain any copyrighted material, e.g., logos, published text, images not in the public domain, etc.? If yes, please explain.
- Has this research tool ever been published? If yes, please provide a citation.
- Are there any published validations of this research tool (e.g., examination of reliability coefficients, factor or principal components analyses, and/or correlations between scores on the instrument and other variables)?
- How would you describe this research tool to another researcher? Please limit your response to 100 words.
I do not own the copyright to my research tool or it contains material for which I do not own the copyright, can I submit it?
We may be able to include the tool in the database by linking to the item from its location on a third-party website, but please contact CERA staff to discuss the particulars of your case.
Many study contributors were involved in the production of my research tool. Do I need their permission to submit it?
The CERA does not require documentation of these permissions. However, you may decide it is appropriate to ask your coauthors for their permission.
Who can I contact if I have questions?
Please contact CERA staff at [email protected].
As an ELSI scholar, is there a way I can help grow the Research Tools database?
Yes! To help promote research tool submission and grow the database, you can:
- Submit your research tools and encourage your peers to do the same.
- As a grant peer-reviewer, encourage inclusion of the ELSIhub Research Tool repository in the data sharing plans of applicants.
- Collaborate with the CERA to present the ELShub Research Tools database to your institution or research group.
- Tweet the ELSIhub links to your research tools in the database and tag the CERA @ELSIhub.
- Sign up to be featured in an article for our newsletter. Link to example feature.
- Email the CERA at [email protected] to tell us about instrument repositories with content suitable for ELSIhub.
- Email your suggested improvements to the database at [email protected].