Authors

  1. Gould, Kathleen Ahern RN, MSN, PhD

Article Content

JAMA NETWORK

https://sites.jamanetwork.com/research-ethics/index.html

 

ETHICAL PRINCIPLES FOR MEDICAL RESEARCH

As the World Medical Association (WMA) continues to update and circulate policy papers every decade, the JAMA graciously shares this information in a concise and efficient publication. The site is a historical treasure, filled with rich resources, factual information, and interesting commentary.

 

Using an impressive web design readers, can click on tabs for the Nuremberg Code, the Declaration of Helsinki, and the Declaration of Geneva. Each document explains a set of ethical principles regarding human experimentation and clinical care. This work, with continued support and revision, continues to inform our practice today.

 

These key documents were instituted over 70 years ago. The initial product, the Nuremberg Code, is a 10-point set of rules guiding the conduct of research on human subjects, formulated in 1947 following the trails of Nazi medical staff and leaders charged with crimes for their treatment and human experimentation of prisoners in concentration camps. On the site, the reader is guided to more literature and research related to each document, such as a 2017 editorial entitled "The Nuremberg Code 70 Years Later." Additional related reading materials are posted in block format, listing titles, authors, and dates of articles, discussions, original research, and opinion papers for each of the 3 major documents, including previous copies of the original documents.

 

The next section introduces the first Declaration of Helsinki, which was initially adopted by the WMA in 1964. This represents the first attempt to transform reactions to the atrocities committed in the name of biomedical research during the Nazi period into preventive measures with a full global perspective. Revisions continued, and in 1975, a workgroup addressed active clinical science and establishment of research ethics committees. A fifth revision and discussion of where we are 50 years later highlights the advances now guiding professional and public protections for research subjects.

 

The final section of this site describes the Declaration of Geneva, the contemporary successor to the 2500-year-old Hippocratic Oath! This document, adopted by the WMA at its second General Assembly in 1948, opens with a discussion of the newly revised version-most recently adopted by the WMA General Assembly on October 14, 2017, in Chicago. In the supporting documents, one gets a sense of the commitment and expertise of the work groups that completed the revisions, where special attention was directed to concepts such as patient autonomy.

 

The entire site includes links to supporting documents to the WMA, historical documents, and timelines. This digital tool provides a comprehensive review of these historic events and our continued utilization of their principles. The link may be easily added to course work or used to reference a wealth of information. The site may be used in conjunction with medical or nursing education course work, human subjects education, and in many ethics classes and lectures.

 

OPEN ACCESS BOOKS AND ARTICLES BOOKS FROM THE JOHNS HOPKINS UNIVERSITY PROJECT: PROJECT MUSE

This open access (OA) project began in 2017 at Johns Hopkins University (JHU) as an endeavor to bring books to a platform that is free and open to a global audience. Project MUSE aligned with the university's mission to disseminate scholarship and to embrace the model of OA. This format also addresses the question of equity in open knowledge-and the model for exploring literature that may not have been exposed to OA models, especially in areas such as humanities.

 

The goal is to bring older books back to life while also responding to the demand to make newer work open. This year, 100 additional books from Johns Hopkins University Press (JHUP) represent a continuation of work at MUSE Open (https://about.muse.jhu.edu/muse/open-accessoverview/), which launched in 2018 and currently hosts OA monographs and journals from more than 60 publishers. MUSE is a responsive platform, which provides novel support systems to new model and experiment formats, specifically targeting OA and equity in dissemination of scholarly work.

 

Project MUSE is a trusted source, drawing from books and journals in the humanities and social sciences from more than 200 university presses and social scientists. The Mellon Foundation and the National Endowment fund the JHU project engaging Project MUSE. The first 100 Books from this collaboration were launched in October 2019; however, the list of resources at JHUP are extraordinary. Titles of available text can be found at https://about.muse.jhu.edu/muse/open-access-overview/.

 

As one enters the Muse Project site, you can browse freely, or search using keywords. Browsing under the keyword "Nursing," I was delighted to find Fealy and Dietz's1Histories of Nursing Practice from 2015. Text and journal titles are listed separately or found in bundles using keywords or topical descriptions. Many references are from university sites and specifically from JHUP. An article by Shaddock2 from 1995 entitled "Florence Nightingales' Notes on Nursing as Survival Memoir" was a new article for me, but one that I added to my Florence collection!

 

A recent blog post in The Scholarly Kitchen describes the project. Karin Wulf3 interviews directors from Project MUSE and JHUP, as they explain that the 100 additional books from JHUP represent a continuation of the work at MUSE Open. (https://about.muse.jhu.edu/muse/open-accessoverview/), which launched in 2018 and currently hosts OA monographs and journals from more than 60 publishers (https://about.muse.jhu.edu/muse/open-accessoverview/).

 

The next 100 books will represent newly created digital editions of more than 200 significant but currently out-of-print scholarly books published by the Press. The grant, in association with JHUP, makes it possible for these new digital editions to be accessible for free through MUSE Open, a new publishing initiative by Project MUSE; the highly regarded online collection is to be released between October 2019 and March 2020.4

 

Follow Project MUSE and JHUP on Twitter to stay apprised of new releases! @JHUP home of Project MUSE or @ProjectMUSE.

 

Project MUSE offers digital full-text access to humanities and social science scholarship from leading university presses and scholarly publishers.

 

References

 

1. Fealy GM, Dietz CE. Histories of Nursing Practice. Manchester University Press. 2015. Project MUSE. http://muse.jhu.edu/book/51382. Accessed October 10, 2019. [Context Link]

 

2. Shaddock J. Florence Nightingales' notes on nursing as survival memoir. Lit Med. 1995;14(1):23-35. [Context Link]

 

3. Wulf K. Open Access Books: the first 100 books from Johns Hopkins University Project. Scholarly Kitchen. October 21, 2019. https://scholarlykitchen.sspnet.org/2019/10/21/open-access-books-the-first-100-b. Accessed January 7, 2020. [Context Link]

 

4. Johns Hopkins University Press. JHU Press receives NEH/Mellon Humanities Open Book Grant. News & Events. https://www.press.jhu.edu/news/announcements/jhu-press-receives-nehmellon-humani. Accessed January 7, 2020. [Context Link]