The role of the genetic testing industry in patient education of hereditary cancer: An observational study assessing the quality of patient education videos.

OBJECTIVES: Genetic testing (GT) companies have developed patient education videos to supplement or replace pre-test genetic counseling (GC) by certified genetic counselors (CGC). The aim of this study was to assess the quality of these videos compared to the standard of care (SOC). METHODS: Videos from four major GT companies were selected from an internet search identifying pre-test patient education videos. A scoring rubric with 22 questions and 36 total points was devised to assess quality metrics, as described by the National Cancer Institute and National Society of Genetic Counselors. Twenty-two individuals with varying genetics expertise (3 gynecologic oncologists, 3 academic generalists, 4 CGC, a genetics community health worker, 3 cancer care navigators, and 8 medical students) scored each video. Scorers were blinded to others' assessments. RESULTS: Invitae had the highest median score (26/36), followed by Myriad (22/36), Ambry (17.5/36), and Color (15/36). All videos scored highly in explaining DNA basics, cancer development, and hereditary cancer predisposition. All addressed benefits of GT but failed to address potential disadvantages. All scored poorly in explaining medical terms and different GT options. There was variability in addressing patient concerns including cost, privacy, and procedure. CONCLUSIONS: There is significant variation in the content of pre-test patient education videos between GT companies. None of the videos met the SOC for pre-test GC, and none addressed disadvantages of GT, possibly due to a conflict of interest. With improvement in content, accessibility, and use of interactive platforms, these videos may serve as an adjunct to in-person pre-test GC.

In-Home Passive Sensor Data Collection and Its Implications for Social Media Research: Perspectives of Community Women in Rural South Africa.

There has been a recent increase in debates on the ethics of social media research, passive sensor data collection, and big data analytics. However, little evidence exists to describe how people experience and understand these applications of technology. This study aimed to passively collect data from mobile phone sensors, lapel cameras, and Bluetooth beacons to assess people's understanding and acceptance of these technologies. Seven households were purposefully sampled and data collected for 10 days. The study generated 48 hr of audio data and 30,000 images. After participant review, the data were destroyed and in-depth interviews conducted. Participants found the data collected acceptable and reported willingness to participate in similar studies. Key risks included that the camera could capture nudity and sex acts, but family review of footage before sharing helped reduce concerns. The Emanuel et al. ethics framework was found to accommodate the concerns and perspectives of study participants.

Live Surgery: Is Operating at Home the Way Forward?

Live surgery events are a popular educational tool, but concerns have been raised, especially regarding patient safety. The Italian Society of Urology has implemented a novel concept in which surgeons operate on their own patients at their own institutions, with the procedures broadcast live at the annual society meetings. This approach retains the live nature of the surgery but removes the risks associated with operating in a foreign environment with distractions.

Is it acceptable to video-record palliative care consultations for research and training purposes? A qualitative interview study exploring the views of hospice patients, carers and clinical staff.

BACKGROUND: Research using video recordings can advance understanding of healthcare communication and improve care, but making and using video recordings carries risks. AIM: To explore views of hospice patients, carers and clinical staff about whether videoing patient-doctor consultations is acceptable for research and training purposes. DESIGN: We used semi-structured group and individual interviews to gather hospice patients, carers and clinical staff views. We used Braun and Clark's thematic analysis. SETTING/PARTICIPANTS: Interviews were conducted at one English hospice to inform the development of a larger video-based study. We invited patients with capacity to consent and whom the care team judged were neither acutely unwell nor severely distressed (11), carers of current or past patients (5), palliative medicine doctors (7), senior nurses (4) and communication skills educators (5). RESULTS: Participants viewed video-based research on communication as valuable because of its potential to improve communication, care and staff training. Video-based research raised concerns including its potential to affect the nature and content of the consultation and threats to confidentiality; however, these were not seen as sufficient grounds for rejecting video-based research. Video-based research was seen as acceptable and useful providing that measures are taken to reduce possible risks across the recruitment, recording and dissemination phases of the research process. CONCLUSION: Video-based research is an acceptable and worthwhile way of investigating communication in palliative medicine. Situated judgements should be made about when it is appropriate to involve individual patients and carers in video-based research on the basis of their level of vulnerability and ability to freely consent.

Engaging research participants to inform the ethical conduct of mobile imaging, pervasive sensing, and location tracking research.

Researchers utilize mobile imaging, pervasive sensing, social media, and location tracking (MISST) technologies to observe and intervene with participants in their natural environment. The use of MISST methods and tools introduces unique ethical issues due to the type and quantity of data, and produces raising new challenges around informed consent, risk assessment, and data management. Since MISST methods are relatively new in behavioral research, there is little documented evidence to guide institutional review board (IRB) risk assessment and inform appropriate risk management strategies. This study was conducted to contribute the participant perspectives when considering ethical and responsible practices. Participants (n = 82) enrolled in an observational study where they wore several MISST devices for 1 week completed an exit survey. Survey items focused on the following: 1-device comfort, 2-informed consent, 3-privacy protections, and 4-bystander engagement. The informed consent process reflected participant actual experience. Device comfort and privacy were raised as concerns to both the participants and bystanders. While the majority of the participants reported a positive experience, it is important to note that the participants were volunteers who were not mandated to wear tracking devices and that persons who are mandated may not have a similar response. Findings support strategies proposed in the Kelly et al. (2013) ethical framework, which emphasizes procedures to improve informed consent, protect privacy, manage data, and respect bystander rights when using a wearable camera.

Too much information: visual research ethics in the age of wearable cameras.

When everything you see is data, what ethical principles apply? This paper argues that first-person digital recording technologies challenge traditional institutional approaches to research ethics, but that this makes ethics governance more important, not less so. We review evolving ethical concerns across four fields: Visual ethics; ubiquitous computing; mobile health; and grey literature from applied or market research. Collectively, these bodies of literature identify new challenges to traditional notions of informed consent, anonymity, confidentiality, privacy, beneficence and maleficence. Challenges come from the ever-increasing power, breadth and multi-functional integration of recording technologies, and the ubiquity and normalization of their use by participants. Some authors argue that these evolving relationships mean that institutional ethics governance procedures are irrelevant or no longer apply. By contrast, we argue that the fundamental principles of research ethics frameworks have become even more important for the protection of research participants, and that institutional frameworks need to adapt to keep pace with the ever-increasing power of recording technologies and the consequent risks to privacy. We conclude with four recommendations for efforts to ensure that contemporary visual recording research is held appropriately accountable to ethical standards: (i) minimizing the detail, scope, integration and retention of captured data, and limiting its accessibility; (ii) formulating an approach to ethics that takes in both the 'common rule' approaches privileging anonymity and confidentiality together with principles of contextual judgement and consent as an ongoing process; (iii) developing stronger ethical regulation of research outside academia; (iv) engaging the public and research participants in the development of ethical guidelines.

Learning through the lens: ethical considerations in videotaping psychotherapy.

Psychiatry training programs have begun to use technology to enhance psychotherapy teaching. Videotaped interviews provide a window into the psychotherapeutic exchange, demystifying the process and capturing verbal and nonverbal interactions, facial expression, and tone of voice-which can illustrate therapeutic elements such as the alliance and resistance. The process of videotaping psychotherapeutic interviews, however, introduces issues related to consent, ethics, and the dynamics of therapy. By examining two cases in which residents asked their patients to videotape a session for didactic purposes and encountered divergent outcomes, we explore the ethical issues unique to providing informed consent for videotaping psychotherapy. Informed consent must be given verbally and in writing. Verbal consent must include discussion of the risks and benefits of therapy. The discussion must also include the risks inherent in memorializing sensitive material on an external device, with disclosure of the logistics of how data will be stored, who will view the recorded material, and when it will be destroyed. Therapists should be aware of the coercive power inherent in the physician-patient relationship and should individualize each informed consent procedure with this knowledge in mind. Despite these potential pitfalls, videotaping sessions provides a wealth of information about both patients and therapists that can improve psychotherapy teaching and supervision, and indirectly improve patient care.

Multimedia applications in nursing curriculum: the process of producing streaming videos for medication administration skills.

PURPOSE: Streaming videos (SVs) are commonly used multimedia applications in clinical health education. However, there are several negative aspects related to the production and delivery of SVs. Only a few published studies have included sufficient descriptions of the videos and the production process and design innovations. This paper describes the production of innovative SVs for medication administration skills for undergraduate nursing students at a public university in Jordan and focuses on the ethical and cultural issues in producing this type of learning resource. METHOD: The curriculum development committee approved the modification of educational techniques for medication administration procedures to include SVs within an interactive web-based learning environment. The production process of the videos adhered to established principles for "protecting patients' rights when filming and recording" and included: preproduction, production and postproduction phases. Medication administration skills were videotaped in a skills laboratory where they are usually taught to students and also in a hospital setting with real patients. The lab videos included critical points and Do's and Don'ts and the hospital videos fostered real-world practices. The range of time of the videos was reasonable to eliminate technical difficulty in access. RESULTS: Eight SVs were produced that covered different types of the medication administration skills. The production of SVs required the collaborative efforts of experts in IT, multimedia, nursing and informatics educators, and nursing care providers. Results showed that the videos were well-perceived by students, and the instructors who taught the course. CONCLUSIONS: The process of producing the videos in this project can be used as a valuable framework for schools considering utilizing multimedia applications in teaching.

The ethics of reality medical television.

Reality medical television, an increasingly popular genre, depicts private medical moments between patients and healthcare providers. Journalists aim to educate and inform the public, while the participants in their documentaries-providers and patients-seek to heal and be healed. When journalists and healthcare providers work together at the bedside, moral problems precipitate. During the summer of 2010, ABC aired a documentary, Boston Med, featuring several Boston hospitals. We examine the ethical issues that arise when journalism and medicine intersect. We provide a framework for evaluating the potential benefits and harms of reality medical television, highlighting critical issues such as informed consent, confidentiality, and privacy.

Not a "reality" show.

The authors of the preceding articles raise legitimate questions about patient and staff rights and the unintended consequences of allowing ABC News to film inside teaching hospitals. We explain why we regard their fears as baseless and not supported by what we heard from individuals portrayed in the filming, our decade-long experience making medical documentaries, and the full un-aired context of the scenes shown in the broadcast. The authors don't and can't know what conversations we had, what documents we reviewed, and what protections we put in place in each televised scene. Finally, we hope to correct several misleading examples cited by the authors as well as their offhand mischaracterization of our program as a "reality" show.

First, do no harm.

In a television news documentary series such as Boston Med, doctors' duty to their patients may be at odds with the duty of TV journalists to their audience. If this happens, who should win out? The patients. If there is any possibility that harm is being done to patients, we must put them first, and turn off the cameras.

Watching Boston Med.

The author reflects on the ABC news documentary series Boston Med--both what it achieved, and what it could have achieved.

Contextualizacion de la mutilación genital femenina desde enfermería. Análisis videográfico / Contextualization of female genital mutilation since nursing. Analysis videographic

El objetivo del presente trabajo se centra en analizar los documentos audiovisuales referentes al ritual que envuelve a la mutilación genital femenina. Material y método: búsqueda y revisión en la red del material videográfico que aporte información de la mutilación genital femenina en su contexto y que sea fuente primaria de información. Resultados: El análisis de los documentos videográficos obtenidos permite identificar un gran número de datos necesarios para estudiar la mutilación genital femenina en su contexto. Para analizar la información recogida se han establecido 10 categorías diferentes. Conclusión: Los documentos visuales constituyen una fuente de investigación fundamental para el análisis de los elementos presentes en el ritual de la mutilación genital femenina; son una herramienta a tener en cuenta en la formación de profesionales de la salud sobre esta práctica, que afecta en gran medida a la salud de mujeres y niñas inmigrantes. El conocimiento obtenido a raíz de esta revisión puede ser utilizado para abordar de forma cultural la mutilación genital femenina (AU)

The purpose of this paper is to analize the audiovisual documents relating to the ritual of the female genital mutilation. Material and method: pursuit and review of the video footage that give us information about the female genital mutilation in context, and be a primary source of information Results: The anlysis of the video footage obtained allows us to identify a large amount of data in order to study the female genital mutilation in context. To analyze the collected information 10 categories have been stablished. Conclusion: The visual documents are a essential source of research for the analysis of the female genital mutilation ritual; they are a tool to consider in the training of health professionals in this area, which affects health of women and immigrant children. The knowledge obtained due to this review can be used in order to approach in a cultural way the female genital mutilation (AU)

[Mental health film festival and ethics]. / Atelier vidéo et éthique en santé mentale.

The mental health film festival is based on the respect of the patient as a subject and is a place where psychic suffering can be expressed. As a film is destined to be shown, there is a dilemma between the aesthetic and the therapeutic aspects and, it's in this link that the ethical dimension concerned by this kind of activity takes place.

Benefits and challenges of electronic surveillance in nursing home research.

Cognitive impairment and frailty associated with dementia renders residents of long-term care (LTC) facilities particularly vulnerable to physical and emotional harm. Resident-to-resident violence affects not only the target of the aggression, but also the aggressor, as well as the formal and informal caregivers who must intervene. To date, little research has been conducted on resident-to-resident violence despite preliminary but emerging evidence that it is a common (and likely growing) problem in LTC settings. Exploration of this phenomenon presents multiple pragmatic and ethical challenges. This article presents a rationale for implementing newer technological methods to collect data in investigations of resident-to-resident violence associated with dementia. The advantages and disadvantages of electronic surveillance in LTC research and the ethical principles involved are discussed, and an argument is developed for using electronic surveillance in both the shared, as well as private, spaces of the facility.