A Code of Ethics for Health Care Ethics Consultants: Journey to the Present and Implications for the Field

For decades a debate has played out in the literature about who bioethicists are, what they do, whether they can be considered professionals qua bioethicists, and, if so, what professional responsibilities they are called to uphold. Health care ethics consultants are bioethicists who work in health care settings. They have been seeking guidance documents that speak to their special relationships/duties toward those they serve. By approving a Code of Ethics and Professional Responsibilities for Health Care Ethics Consultants, the American Society for Bioethics and Humanities (ASBH) has moved the professionalization debate forward in a significant way. This first code of ethics focuses on individuals who provide health care ethics consultation (HCEC) in clinical settings. The evolution of the code's development, implications for the field of HCEC and bioethics, and considerations for future directions are presented here.     

Victims,Their Stories,and Our Rights

Diana Meyers argues that breaking the silence of victims and attending to their stories are necessary steps towards realizing human rights. Yet using highly personal victims' stories to promote human rights raises significant moral concerns, hence Meyers suggests that before victims' stories can be accessed and used, it is morally imperative that requirements of informed consent and non‐retraumatization are secured. This article argues that while Meyers' proviso is important, and necessary, it may not be sufficient. First, one potential problem with seeking to secure “informed consent” is that one has to ask for the consent, and in the act of asking one is potentially retraumatizing the victim. Secondly, the assumption that victims have ownership right over their stories, which is a key premise in Meyers's argument, is much more problematic than may appear.     

The Quantified Relationship

The growth of self-tracking and personal surveillance has given rise to the Quantified Self movement. Members of this movement seek to enhance their personal well-being, productivity, and self-actualization through the tracking and gamification of personal data. The technologies that make this possible can also track and gamify aspects of our interpersonal, romantic relationships. Several authors have begun to challenge the ethical and normative implications of this development. In this article, we build upon this work to provide a detailed ethical analysis of the Quantified Relationship (QR). We identify eight core objections to the QR and subject them to critical scrutiny. We argue that although critics raise legitimate concerns, there are ways in which tracking technologies can be used to support and facilitate good relationships. We thus adopt a stance of cautious openness toward this technology and advocate the development of a research agenda for the positive use of QR technologies.     

线上社交焦虑:社交媒体中的人际负性体验

线上社交焦虑指个体在社交媒体交往情境中感知到的紧张和恐惧等人际负性体验,包含隐私担忧、交往焦虑和负面评价恐惧三个方面。线上社交焦虑可以通过质性分析法、实验诱发法和问卷测量法进行研究。线上社交焦虑既会受到社交媒体自身特点、个体特征因素、网络欺凌和文化因素的影响,还会对个体的心理与行为产生后效。未来研究者需要开发有效的本土化测量工具、探索其形成和作用机制、关注线上社交焦虑悖论以及推动对其干预。     

Information Privacy for Technology Users With Intellectual and Developmental Disabilities: Why Does It Matter?

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities (IDD) related to their information privacy when using information technology (IT). Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but not in situations involving the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy.     

Persons with Intellectual and Developmental Disabilities and Information Technologies. Some Ethical Observations—A Comment on Chalgoumi et al.

This comment on Chalgoumi et al.’s article “Information Privacy for Technology Users with Intellectual and Developmental Disabilities: Why Does It Matter?” focuses on the concept of autonomy in order to expand the scope of the ethical discussion. First we explore the conceptual and practical relations between privacy and autonomy. Following this, we address the issue of underfunding of information technology for persons with intellectual and developmental disabilities in terms of distributive justice and provide some potential policy solutions.     

A Case for Greater Risk Tolerance in Internet Use by Adults with Intellectual Disabilities: A Comment on Chalghoumi et al.

This comment argues for increased tolerance of privacy risks in the Internet activity of adults with intellectual disabilities. Excessive caution about such risks denies those individuals not only the great benefits of Internet use but also the difficult but valuable experiences of loss, disappointment, and hurt associated with those risks. A level of risk-aversion appropriate for small children will be disrespectful for adults with intellectual disabilities. To the extent that additional safeguards are justified, they are better achieved through individualized security and privacy settings than through caregiver oversight.