Locked-in syndrome (LIS) is a severe neurological condition that typically leaves a patient unable to move, talk and, in many cases, initiate communication. Brain Computer Interfaces (or BCIs) promise to enable individuals with conditions like LIS to re-engage with their physical and social worlds. In this paper we will use extended mind theory to offer a way of seeing the potential of BCIs when attached to, or implanted in, individuals with LIS. In particular, we will contend that functionally integrated BCIs (...) extend the minds of individuals with LIS beyond their bodies, allowing them greater autonomy than they can typically hope for in living with their condition. This raises important philosophical questions about the implications of BCI technology, particularly the potential to change selves, and ethical questions about whether society has a responsibility to aid these individuals in re-engaging with their physical and social worlds. It also raises some important questions about when these interventions should be offered to individuals with LIS and respecting the rights of these individuals to refuse intervention. By aiding willing individuals in re-engaging with their physical and social worlds, BCIs open up avenues of opportunity taken for granted by able individuals and introduce new ways in which these individuals can be harmed. These latter considerations serve to highlight our emergent social responsibilities to those individuals who will be suitable for, and receive, BCIs. (shrink)

Objective: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. -/- Methods: We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a “Points to (...) Consider” (P2C) document, and convened a national expert panel to review and critique the P2C. -/- Results: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. -/- Discussion: The P2C is intended to clarify whatis at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion. (shrink)

Current law does not adequately protect patients' privacy or their medical records. Proposals to computerize these records could further erode confidentiality unless new federal laws are enacted.

In recent years, two distinct trajectories of bioethical inquiry have emerged: neuroethics and nanoethics. The former deals with issues in neuroscience, whereas the latter deals with issues in nanoscience and nanotechnology. In both cases, the ethical inquiries have coalesced in response to rapidly increasing scientific and engineering developments in each field. Both also present major issues for contemplation in bioethics. However, the questions are (1) how different are the ethical issues raised, and (2) is it beneficial for neuroethics and nanoethics (...) inquiries to proceed on often-divergent trajectories by ethicists who otherwise might never interact? If, for example, ethical inquiry occurs only within the disciplinary confines of their predominant area(s) of science (which now seems to be the case) or by overlooking prior discussions in other scientific realms (like genetics), then the opportunity for a richer, more comprehensive discourse may be lost. I argue that this (1) is a disservice to bioethics, (2) is antithetical to some of the aims of bioethical inquiry, and (3) encourages the reductionism bioethicists’ claim that is counterproductive. (shrink)

We have all heard a refrain much like this one over the last decade, increasingly so, as the cost of genetic sequencing has been drastically reduced with improvements in associated techniques and technologies. Already, discoveries are being made in laboratories that can help doctors determine from which drug a particular patient will receive the most efficacious treatment. The working presumption is that, eventually, individuals’ genetic sequence information will be included in each of their personal medical records.