AMIA's Code of Professional and Ethical Conduct

Goodman, Kenneth W.; Adams, Samantha; Berner, Eta S.; Embí, Peter J.; Hsiung, Robert C.; Hurdle, John F.; Jones, Dixie A.; Lehmann, Christoph U.; Maulden, Sarah A.; Petersen, Carolyn; Terrazas, Enrique; Winkelstein, Peter

doi:10.1136/amiajnl-2012-001035

Cited by 20 publications

(6 citation statements)

References 2 publications

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“…Regarding the purpose of ensuring protection of human data while enabling data sharing, several approaches have been suggested that range from the creation of a political framework in the form of resolutions or treaties, to operational guidelines for data sharing [101]. Such frameworks include concepts like legitimate public health purpose, minimum information necessary, privacy and security standards, data use agreements [102], ethical codes like the IMIA (International Medical Informatics Association) Code of Ethics for Health Information Professionals [103] and AMIA’s (American Medical Informatics Association) Code of Professional and Ethical Conduct, guidance for genomic data, and potential privacy risks [104]. More concrete approaches are a human rights-based system for an international code of conduct for genomic and clinical data sharing [105], recommendations about clinical databases and privacy protections [106], and healthcare privacy protection based on differential privacy-preserving methods (iDASH, integrating Data for Analysis, Anonymization, and Sharing) [107, 108].…”

Section: Discussionmentioning

confidence: 99%

Orchestrating differential data access for translational research: a pilot implementation

Brandizi

Melnichuk

Bild

et al. 2017

BMC Med Inform Decis Mak

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BackgroundTranslational researchers need robust IT solutions to access a range of data types, varying from public data sets to pseudonymised patient information with restricted access, provided on a case by case basis. The reason for this complication is that managing access policies to sensitive human data must consider issues of data confidentiality, identifiability, extent of consent, and data usage agreements. All these ethical, social and legal aspects must be incorporated into a differential management of restricted access to sensitive data.MethodsIn this paper we present a pilot system that uses several common open source software components in a novel combination to coordinate access to heterogeneous biomedical data repositories containing open data (open access) as well as sensitive data (restricted access) in the domain of biobanking and biosample research. Our approach is based on a digital identity federation and software to manage resource access entitlements.ResultsOpen source software components were assembled and configured in such a way that they allow for different ways of restricted access according to the protection needs of the data. We have tested the resulting pilot infrastructure and assessed its performance, feasibility and reproducibility.ConclusionsCommon open source software components are sufficient to allow for the creation of a secure system for differential access to sensitive data. The implementation of this system is exemplary for researchers facing similar requirements for restricted access data. Here we report experience and lessons learnt of our pilot implementation, which may be useful for similar use cases. Furthermore, we discuss possible extensions for more complex scenarios.

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Section: Discussionmentioning

confidence: 99%

Orchestrating differential data access for translational research: a pilot implementation

Brandizi

Melnichuk

Bild

et al. 2017

BMC Med Inform Decis Mak

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“…They include MEDLINE 2 , PubMed 3 , PubMed Central 4 the Visible Human Project 5 , the Unified Medical Language System (UMLS) 6 , TOXNET 7 , and 8 9 among the major systems that the National Library of Medicine (NLM) developed and freely opened to the world under Lindberg's direction. Lindberg's profound understanding and ethical approach to the practices of medicine and nursing, and the pursuit of biomedical knowledge and its informatics for the benefit of all persons everywhere regardless of gender, cultural, linguistic, or other backgrounds, was essential in helping biomedical and healthcare informatics grow with its own culture of open, shared research and practices exemplified in the codes of ethics of national and regional societies as well as IMIA itself 9 10 . Lindberg's leadership of the NLM helped promote and produce a very fertile mix of science, technology, and training that helped a wide range of academic groups around the world become very successful in bringing together like-minded practitioners, scientists, and technologists to help transform the field.…”

Section: Lindberg a Humanist Catalyzing Biomedical Research And Clinmentioning

confidence: 99%

Donald A. B. Lindberg: Inspiring Leader and Visionary in Biomedicine, Healthcare, and Informatics

Kulikowski

2020

Yearb Med Inform

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Summary Background: As Director of the US National Library of Medicine (NLM) for 30 years, Dr. Donald A. B. Lindberg was instrumental in bringing biomedical research and healthcare worldwide into the age of genomic and translational medicine through the informatics systems developed by the NLM. Lindberg opened free access and worldwide public dissemination of all the NLM's biomedical literature and databases, thus helping transform not only biomedical research like the Human Genome Project and its successors, but also the practices of medicine and healthcare internationally. Guiding, leading, and teaching-by-example at national, regional, and global levels of biomedical and healthcare informatics, Lindberg helped coalesce a dynamic discipline that provides a foundation for the human understanding which promotes the future health of our world. Objectives: To provide historical insight into the scientific, technological, and practical clinical accomplishments of Donald Lindberg, and to describe how this led to contributions in the worldwide interdisciplinary evolution of informatics, and its impact on the biosciences and practices of medicine, nursing, and other healthcare-related disciplines. Methods: Review and comment on the publications, scientific contributions, and leadership of Donald Lindberg in the evolution of biomedical and health informatics which anticipate the vision, scholarship, research in the field, and represent the deeply ethical humanism he exhibited throughout his life. These were essential in producing the informatics systems, such as the Unified Medical Language System (UMLS), MEDLINE, PubMed, PubMed Central, and ClinicalTrials.gov, which, together with NLM training programs and conferences, made possible the interactions among researchers and practitioners leading to the past quarter-century of rapid and dramatic advances in biomedical scientific inquiry and clinical discoveries, openly shared across the globe. Conclusion: Dr. Lindberg was a uniquely talented physician and pioneering researcher in biomedical and health informatics. As the main leader in developing and funding innovative informatics research for more than 30 years as Director of the National Library of Medicine, he helped bring together the most creative interdisciplinary researchers to bridge the worlds of biomedical research, education, and clinical practice. Lindberg's emphasis on open-access to the biomedical literature through publicly shared computer-mediated methods of search and inquiry are seen as an example of ethical scientific openness.

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“…This is not the place to go into detail about medical informatics ethics, although there are some useful introductions to the topic. (de Lusignan et al, 2007;Jankowski and van Selm, 2007;Goodman et al, 2013;Masters, 2018) For the purposes of this paper, it is enough to note that medical informatics ethics governs the ethical use of medically-related data captured or stored electronically. Because all medical and medical education practitioners and researchers work with such data, they need to be cognisant of medical informatics ethics.…”

Section: Introduction: Medical Informatics Ethicsmentioning

confidence: 99%

Guarding against excess: a frequently ignored ethical principle in medical education research

Masters¹

2018

MedEdPublish

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In the 21 st century, medical ethics has been combined with informatics ethics to form medical informatics ethics, and medical education researchers need to be aware of medical informatics ethics principles. An important medical informatics ethics principle is guarding against excess: gathering only those data that are required, and using all the data that have been gathered. An example of excessive data gathering can be found in the gathering of demographic data: it is considered excessive when these data are gathered for no explicit reason, used minimally in the Results, and mostly ignored in the Discussion. This paper details the problem of excessive data gathering, and then outlines five steps requiring the cooperation of institutional ethics review boards, researchers, journal editors and journal reviewers that should be followed in order to guard against excess in medical education research.

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AMIA's Code of Professional and Ethical Conduct

Cited by 20 publications

References 2 publications

Orchestrating differential data access for translational research: a pilot implementation

Orchestrating differential data access for translational research: a pilot implementation

Donald A. B. Lindberg: Inspiring Leader and Visionary in Biomedicine, Healthcare, and Informatics

Guarding against excess: a frequently ignored ethical principle in medical education research

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