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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.
This paper provides an analysis of the statement, made in many papers and reports on the use of gene editing in humans, that we should only use the technology when it is safe. It provides an analysis of what the statement means in the context of nonreproductive and reproductive gene editing and argues that the statement is inconsistent with the philosophical commitments of some of the authors, who put it forward in relation to reproductive uses of gene editing, specifically their commitment to Parfitian nonidentity considerations and to a legal principle of reproductive liberty.
But, if that is true it raises a question about why the statement is made. What is its discursive and rhetorical function? Five functions are suggested, some of which are more contentious and problematic than others. It is argued that it is possible, perhaps even likely, that the “only when it is safe” rider is part of a deliberate obfuscation aimed at hiding the full implications of the arguments made about the ethics of gene editing and their underlying philosophical justifications.
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.
During the previous years, voluntary moral bioenhancement (VMBE) has been contrasted to compulsory moral bioenhancement (CMBE). In this paper a third possible type of moral bioenhancement is discussed: genome editing for moral enhancement of the unborn that is neither voluntary nor compulsory, but involuntary. Involuntary moral bioenhancement (IMBE) might engineer people who will be more moral than they otherwise would have been. The possibilities of genome editing aimed at moral enhancement of our offspring is assessed. It is argued that genome editing might have the potential to engineer our offspring in three domains: to be more empathetic, to be less violently aggressive, and to have a higher potential for complex moral reflection. Genome editing is discussed in these three domains, and a proposal made that a combination of VMBE and IMBE might be the best option humans have to become better.
How should we regulate genome editing in the face of persistent substantive disagreement about the moral status of this technology and its applications? In this paper, we aim to contribute to resolving this question. We first present two diametrically opposed possible approaches to the regulation of genome editing. A first approach, which we refer to as “elitist,” is inspired by Joshua Greene’s work in moral psychology. It aims to derive at an abstract theoretical level what preferences people would have if they were committed to implementing public policies regulating genome editing in a context of ethical pluralism. The second approach, which we refer to as the democratic approach, defended by Francoise Baylis and Sheila Jasanoff et al., emphasizes the importance of including the public’s expressed attitudes in the regulation of genome editing. After pointing out a serious shortcoming with each of these approaches, we propose our own favored approach—the “enlightened democracy” approach—which attempts to combine the strengths of the elitist and democratic approaches while avoiding their weaknesses.