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21,000 GenETHX Records Added to the ELSIhub Publications Database


Deanne Dunbar Dolan
Caroline B. Moore
Emily Van Poetsh

We are excited to announce the migration of over 21,000 publications from the Genetics and Ethics Database (GenETHX) created by the Bioethics Research Library (BRL), Kennedy Institute of Ethics (KIE), Georgetown University into the ELSI Publications database on ELSIhub! The ELSIhub database now includes books, book chapters, conference proceedings, and journal articles selected by CERA staff from the over 45,000 citations in the full GenETHX database. These selections focus on the ethical, legal, and social implications (ELSI) of genetics, genomics, and related life sciences; are updated with a link to a full text version of the content; and have a publication date between 1990 (the start date for the ELSIhub database) and 2011 (the newest material in GenETHX). The publications offer ELSIhub users the ability to see the evolution of scholarship on classic ELSI topics such as prenatal testing, GMO foods, patents on biological material, cloning, human diversity, behavioral genetics, and more. In addition to these selections from the GenETHX database, the keyword searchable and filterable ELSI Publications database includes the contents of the ELSI Publications & Products database complied by the National Human Genome Research Institute (NHGRI); the ELSI Archives, curated by the Center for Genetic Research Ethics and Law, Case Western Reserve University; selections from a retrospective of the DOE ELSI program, prepared by Daniel Drell and Anne Adamson; works sourced by the editors of ELSIhub Collections; and recently published works in popular journals for ELSI scholarship sourced monthly by CERA staff.

For almost 50 years, the BRL at the KIE has supported ELSI scholarship by making it easier for researchers to find and access materials that explore the normative dimensions of human genetics. Its staff have been collecting genetics and ethics-focused materials since the founding of the library in 1973. Notably, in conjunction with the Bioethics Information Retrieval Project that began creating bioethics records for the National Library of Medicine in 1976, a small subset of the literature collected by the BRL was indexed (which is like adding hashtags using a limited vocabulary of terms drawn from the field) in Bioethicsline, and eventually in the PubMed, and LocatorPlus Databases. In 1994, funding from the National Human Genome Research Institute (NHGRI) allowed the BRL to create The National Information Resource on Ethics and Human Genetics (NIREHG). NIREHG allowed the KIE to consolidate the genetics and ethics collection into the GenETHX database; purchase additional books, journal subscriptions, and videos to expand collection and indexing (tagging) efforts; share information about the resource with interested professional groups; and produce a newsletter. This funding was secured by the director of the KIE at that time, Dr. LeRoy Walters, and the founding director of the BRL, Doris Goldstein.

CERA staff spoke with our Georgetown collaborators over the past year, Laura Bishop, PhD, Associate Teaching Professor and Academic Program Director at the KIE, and Patricia Martin, MA, Technical Services Manager at the KIE Library, about the creation of the GenETHX database and the decision by the KIE to share this exciting resource with the CERA. Ms. Martin was hired as a data entry coordinator and library assistant at the KIE Library back in 1998. She worked closely with the Bioethics Information Retrieval Project bibliographers/indexers who were collecting resources for the library, including items that would ultimately be included in the GenETHX database. Dr. Bishop started as a research assistant at the KIE Library when she was a doctoral student in the Philosophy Department at Georgetown. Back then, she identified and acquired literature for the library, created database records, supervised student assistants, and eventually attended professional meetings to share information about the NIREHG and the GenETHX database.

CERA: When the Bioethics Research Library at the KIE decided to create GenETHX, what value did you think a collection of materials on genetics and ethics would have for the bioethics community?

Dr. Bishop & Ms. Martin: At the time, we were not aware of any other database that systematically identified, collected, classified, and organized the ethics and human genetics literature. Certainly, no source tried to collect those materials across a range of fields and publication types, which was the aim of the Bioethics Library staff during the creation of GenETHX.

CERA: How were the records in GenETHX selected?

Dr. Bishop & Ms. Martin: The staff of the KIE Library and Bioethics Information Retrieval Project monitored a wide range of sources with the aim of identifying the most productive sources of timely, reliable genetics-related information. This included daily searches of PubMed and review of books, a set of key journals, newsletters, audiovisual materials, government hearings, reports, bills, and laws. Newspaper articles, using a Lexis-Nexis search strategy, and legal materials, including court cases and statutes, were also monitored by library staff. Finally, a wide range of journal table of contents in clinical medicine and social science and medicine were monitored for relevant articles.

CERA: We noticed some trends in topics over the years (e.g., GMO foods, patenting genetic material, cloning, etc.). Can you think of any other topics that are covered in GenETHX?

Dr. Bishop & Ms. Martin: Topics that seem to be consistently considered, and might be noted as of special interest, are ethical issues in the conduct of genetic research among a range of human populations. Biobanks and genetic databases are topics with an interesting origin story in the GenETHX database, as are considerations of the impact of genetic testing beyond the individual tested, for example, on the family members of the person who has been tested.

Do you have an idea of how these records have been used over the years? For example, have you used the database for teaching purposes or recommended it to students?

Dr. Bishop & Ms. Martin: The GenETHX database and the NIREHG were resources that the KIE Library recommended, distributed basic training and usage information about, and publicized to a diverse range of practitioners and researchers at a range of meetings within bioethics and in other fields, including human genetics, medical, and hospital librarianship, etc. Information about the database also was shared with undergraduate students in bioethics courses and graduate students specializing in philosophy and bioethics at Georgetown University. KIE Bioethics Library staff also used GenETHX to respond to incoming reference questions.

Researchers in the field of bioethics, human genetics and related topic areas have benefitted from these records when embarking on a systematic review or starting a new research project pertaining to genetics and ethics. The records have also been helpful for researchers attempting to connect with others working in their subject area. Those new to scholarship on genetics and ethics topics have a better context for the history and development of important issues, and students are made aware of the history of collecting information and resources in bioethics and special topics within bioethics, when exposed to these records.

Why did you decide to share this database with the CERA for the ELSI Publications database on ELSIhub? 

Dr. Bishop & Ms. Martin: After we received the initial inquiry, we consulted with Dr. LeRoy Walters, Doris Goldstein, and our current KIE director, Dr. Daniel Sulmasy. All of us read the ELSIhub project summary and proposal and discussed the fact that many of the ELSIhub aims were like the goals of the KIE when we were actively developing and maintaining the GenETHX database. The aspect of the ELSIhub project “to serve as a locus for resource sharing and community building to enhance the production, sharing, and use of research on the ethical, legal, and social implications of genetics and genomics” was particularly appealing to us since we are no longer in a position to play this role ourselves. The experienced ELSIhub team and collaborators, all very well respected in the field and with skills and knowledge critical to carrying out the project, also factored heavily into the decision. We were very encouraged by the project’s intent to keep GenETHX updated and to enable links to full text and enhanced search functions, since again we are not able to do this ourselves. While we had the citations, we migrated them into a digital repository that is more static and doesn’t support the type of use described in the ELSIhub project description. In general, this opportunity seemed like a very carefully thought-out extension of our earlier work with more dissemination and promotion aspects built into the project. It was exciting for us to learn about this opportunity to become a small part of the database and the ELSHIhub’s work.

CERA: What benefits for ELSI scholars and scholarship do you expect to come from your decision to widely share this database?

Dr. Bishop & Ms. Martin: We hope that through use of the GenETHX database researchers and scholars will be able to understand the roots of the discussion of many classic and contemporary topics in bioethics, especially in genetics and ethics. These conversations have been ongoing for some time and did not spring up de novo just recently. In addition, we hope that a broader range of voices and scholarship might become part of the research conversation. Too often people tend to read or cite the same limited set of literature. Doris Goldstein’s guiding goal was to identify quality, substantive, and relevant literature for inclusion in GenETHX and the broader KIE Library collection. In this way, GenETHX is an egalitarian sort of platform. When searching through the database, our hope was that a scholar might be exposed to the ideas of a diverse range of scholars who might then be included or represented in the conversation.

CERA welcomes inquiries from individuals and institutions who are interested in sharing resources with the ELSI scholarly community and submissions of published ELSI literature via email to [email protected]. To learn more about the ELSI Publications database and its contents, please see our FAQ page.