In this article, we present an educational intervention that embeds ethics education within research laboratories. This structure is designed to assist students in addressing ethical challenges in a more informed way, and to improve the overall ethical culture of research environments. The project seeks (a) to identify factors that students and researchers consider relevant to ethical conduct in science, technology, engineering, and math (STEM) and (b) to promote the cultivation of an ethical culture in experimental laboratories by integrating research stakeholders in a bottom-up approach to developing context-specific, ethics-based guidelines. An important assumption behind this approach is that direct involvement in the process of developing laboratory specific ethical guidelines will positively influence researchers’ understanding of ethical research and practice issues, their handling of these issues, and the promotion of an ethical culture in the respective laboratory. The active involvement may increase the sense of ownership and integration of further discussion on these important topics. Based on the project experiences, the project team seeks to develop a module involving the bottom-up building of codes-of-ethics-based guidelines that can be used by a broad range of institutions and that will be distributed widely.

The available treatments for disorders affecting large segments of the population are often costly, complex, and only marginally effective, and many have numerous side effects. These disorders include dementias, debilitating neurological disorders, the multiple types of drug addiction, and the spectrum of mental health disorders.

Preliminary studies have shown that a variety of psychedelic and similar U.S. Drug Enforcement Administration Schedule I drugs may offer better treatment options than those that currently exist and pose potentially the same or even less risk than do legal psychoactive (alcohol, caffeine, nicotine) and nonpsychoactive (aspirin, acetaminophen, ibuprofen) substances. The pharmaceutical industry and academia, however, have largely avoided this avenue of research.

Fairness to the affected populations demands that these drugs be adequately studied and, if they or their congeners are shown to be effective, made available with the proper caveats, instructions, and protections that other potentially abused medications (e.g., narcotics) receive. These substances may prove to relieve patients’ struggles with less effective treatments and decrease mortality from nontreatment of some conditions.

This paper recounts the author’s conversations with Ryan Farnsworth, a 30-year-old ALS patient who consented to be interviewed for the purpose of improving communication between physicians and patients. Under the California End of Life Option (ELOA), the patient had been prescribed medication that would allow him to end his life at a time of his choosing. He describes coping with the challenges of the illness, how he will make the decision when to take the drugs and what he hopes will be his legacy.

This paper explores how Finnish research ethics deals with matters of justice on the levels of practical regulation, political morality, and theoretical studies. The bioethical sets of principles introduced by Tom Beauchamp and James Childress in the United States and Jacob Dahl Rendtorff and Peter Kemp in Europe provide the conceptual background, together with a recently introduced conceptual map of theories of justice and their dimensions. The most striking finding is that the internationally recognized requirement of informed consent for research on humans can be ideologically tricky in a Scandinavian welfare state setting.

Documentation of code status and advance directives for end-of-life (EOL) care improves care and quality of life, decreases cost of care, and increases the likelihood of an experience desired by the patient and his/her family. However, the use of advance directives and code status remains low and only a few organizations maintain code status in electronic form. Members of the American Medical Informatics Association’s Ethics Committee identified a need for a patient’s EOL care wishes to be documented correctly and communicated easily through the electronic health record (EHR) using a minimum data set for the storage and exchange of code status information. After conducting an environmental scan that produced multiple resources, Ethics Committee members used multiple conference calls and a shared document to arrive at consensus on the proposed minimum data set. Ethics Committee members developed a minimum required data set with links to the HL7 C_CDA Advance Directives Module. Data categories include information on the organization obtaining the code status information, the patient, any supporting documentation, and finally the desired code status information including mandatory, optional, and conditional elements. The “minimum set of attributes” to exchange advance directive / code status data described in this manuscript enables communication of patient wishes across multiple providers and health care settings. The data elements described serve as a starting point for a dialog among informatics professionals, physicians experienced in EOL care, and EHR vendors, with the goal of developing standards for incorporating this functionality into the EHR systems.