Privacidad de la información en la investigación social de naturaleza cualitativa: la transición hacia el mundo digital / Privacy of information in qualitative social research: the transition to the digital world / Privacidade da informação na pesquisa social qualitativa: a transição para o mundo digital

Resumen: Este texto aborda el problema de la privacidad de la información en la investigación social de tipo cualitativa que se desarrolla en el contexto del mundo digital. Para ello, se revisa el concepto de privacidad desde una mirada analógica hacia su incorporación en el plano digital con la figura de la privacidad de la información y algunos elementos de la hermenéutica de Gadamer. Primero, se revisa el plano analógico y ético de la privacidad. Luego, se revisa el potencial de la información, la distinción entre información privada y sensible y su aplicabilidad a la investigación social mediante los conceptos de confianza y seguridad. Finalmente se esboza una propuesta para una privacidad renovada que propone rescatar la intersubjetividad que se construye en la relación del participante de la investigación con el investigador.

Abstract: This text addresses the problem of information privacy in qualitative social research developed in the context of the digital world. For this purpose, the concept of privacy is reviewed from an analogical view towards its incorporation in the digital plane with the figure of information privacy and some elements of Gadamer's hermeneutics. First, the analogical and ethical plane of privacy is reviewed. Then, the potential of information, the distinction between private and sensitive information and its applicability to social research through the concepts of trust and security are reviewed. Finally, we outline a proposal for a renewed privacy that proposes to rescue the intersubjectivity that is built in the relationship between the research participant and the researcher.

Resumo: Este texto aborda o problema da privacidade da informação na investigação social qualitativa no contexto do mundo digital. Para o fazer, revê o conceito de privacidade de um ponto de vista analógico para a sua incorporação no plano digital com a figura da privacidade da informação e alguns elementos da hermenêutica de Gadamer. Primeiro, o plano analógico e ético da privacidade é revisto. Em seguida, o potencial da informação, a distinção entre informação privada e informação sensível e a sua aplicabilidade à investigação social através dos conceitos de confiança e segurança são revistos. Finalmente, esboça uma proposta para uma privacidade renovada que se propõe resgatar a intersubjetividade que é construída na relação entre o participante da pesquisa e o pesquisador.

Naming the Dead: What information do Physical Therapy and Physician Assistant Anatomy Faculty Share With Students?

In this novel study, the researchers quantify cadaver information provided to Physical Therapy (PT) and Physician Assistant (PA) anatomy faculty and ask what portion of that information is then shared with students. Descriptive statistics were used to the describe demographics of the study respondents and to report survey responses. The majority (60% or greater) of faculty who teach anatomy to PT and PA students have clinical degrees matching the student groups they teach. Chi-square analysis showed no appreciable difference (P < 0.001) between PT and PA anatomy faculty in the amount of cadaver information they receive or then share with students. There was a difference in the type of cadaver information (identifying vs. non-identifying) that is received and then shared by these faculty. Faculty are more likely to receive non-identifying cadaver information (93%) than identifying information (40%) (P < 0.0001) and share non-identifying information (83%) than identifying information (26%) with students (P < 0.0003). Interestingly, there is no consensus as to whether sharing cadaver information is respectful or disrespectful to those who donate their bodies for anatomy education and research. Further research is warranted into the reasons anatomy faculty withhold cadaver information from students and in the value, if any, for students knowing more about the cadavers they are learning from.

Informing offspring of their conception by gamete or embryo donation: an Ethics Committee opinion.

This document discusses the ethical implications of informing offspring about their conception using gamete or embryo donation. It replaces the 2013 ASRM Ethics Committee document of the same name (Fertil Steril 2013;100:45-9).

Mail merge can be used to create personalized questionnaires in complex surveys.

BACKGROUND: Low response rates and inadequate question comprehension threaten the validity of survey results. We describe a simple procedure to implement personalized-as opposed to generically worded-questionnaires in the context of a complex web-based survey of corresponding authors of a random sample of 300 published cluster randomized trials. The purpose of the survey was to gather more detailed information about informed consent procedures used in the trial, over and above basic information provided in the trial report. We describe our approach-which allowed extensive personalization without the need for specialized computer technology-and discuss its potential application in similar settings. RESULTS: The mail merge feature of standard word processing software was used to generate unique, personalized questionnaires for each author by incorporating specific information from the article, including naming the randomization unit (e.g., family practice, school, worksite), and identifying specific individuals who may have been considered research participants at the cluster level (family doctors, teachers, employers) and individual level (patients, students, employees) in questions regarding informed consent procedures in the trial. The response rate was relatively high (64%, 182/285) and did not vary significantly by author, publication, or study characteristics. The refusal rate was low (7%). CONCLUSION: While controlled studies are required to examine the specific effects of our approach on comprehension, quality of responses, and response rates, we showed how mail merge can be used as a simple but useful tool to add personalized fields to complex survey questionnaires, or to request additional information required from study authors. One potential application is in eliciting specific information about published articles from study authors when conducting systematic reviews and meta-analyses.

Selling health data: de-identification, privacy, and speech.

Two court cases that involve selling prescription data for pharmaceutical marketing affect biomedical informatics, patient and clinician privacy, and regulation. Sorrell v. IMS Health Inc. et al. in the United States and R v. Department of Health, Ex Parte Source Informatics Ltd. in the United Kingdom concern privacy and health data protection, data de-identification and reidentification, drug detailing (marketing), commercial benefit from the required disclosure of personal information, clinician privacy and the duty of confidentiality, beneficial and unsavory uses of health data, regulating health technologies, and considering data as speech. Individuals should, at the very least, be aware of how data about them are collected and used. Taking account of how those data are used is needed so societal norms and law evolve ethically as new technologies affect health data privacy and protection.