Normality in medicine: an empirical elucidation

Background Normality is both a descriptive and a normative concept. Undoubtedly, the normal often operates normatively as an exclusionary tool of cultural authority. While it has prominently found its way into the field of medicine, it remains rather unclear in what sense it is used. Thus, our study sought to elucidate people's understanding of normality in medicine and to identify concepts that are linked to it. Methods Using convenient sampling, we carried out a cross-sectional survey. Since the survey was advertised through social media, we employed an online survey. We performed descriptive and inferential analyses. Predictors were chosen in a theory-driven manner. Results In total, 323 persons from 21 countries completed the survey. Analysis revealed that the overall acceptance of normality in medicine was associated with notions of injustice, authority, discrimination, and with having a medical profession. More precisely, for the field of mental health, injustice insensitivity, genderism and transphobia, and authority were positively associated with a person's acceptance of normality; and, for the field of physical health, injustice insensitivity and having a medical profession were positively associated with a person's acceptance of normality. Finally, participants' acceptance of the use of normality in the area of mental health was lower than in the area of physical health. Conclusions What is considered normal has implications for clinical practice, both at an individual and at a policy-level. Acknowledging its normalistic condition, the discipline of medicine has to confront itself with its own contribution to the augmentation of social inequalities through the excessive reliance on the concept of normality. Research that centers the lived experiences of those who are being systematically marginalized because they are deemed abnormal is needed. By empirically elucidating the conceptual relationships between normality in medicine and other variables, we provide points of leverage to deprive normality of its normative power. For medicine, this is needed to first do no harm

Big Data, bigger challenges. On the ethical impact of Big Data on scholarly research practices

The development of Big Data technologies has had a great impact on society and research. The ubiquity and huge quantities of human generated data, together with the enhancement of computational capabilities, hold great promises for the advancement of knowledge in numerous fields from medicine, to behavioral science, to economy. At the same time, however, Big Data is also raising numerous ethical concerns due to the unpredictability of the harm that it poses for research subjects. For this reason, policymakers and scholars, especially in the context of academic research, alike are struggling towards the appropriate ethical management and regulation of research that uses Big Data methods. The goal of this dissertation is therefore to contribute to the development of appropriate ethics frameworks for Big Data research that will assist investigators in navigating the multifaceted ethical issues of Big Data, design ethically sound research projects and avoid regulatory drawbacks. In order to meet this objective, a mixed methods approach was followed. First, two systematic reviews on the ethical issues of Big Data were performed using the PRISMA method. Second, the opinions and attitudes of academic scholars were investigated through a qualitative interview study with Swiss and American university-based scholars working on behavioral Big Data studies

On the Epistemic Status of Prenatal Ultrasound: Are Ultrasound Scans Photographic Pictures?

Medical imaging is predominantly a visual field. In this context, prenatal ultrasound images assume intense social, ethical, and psychological significance by virtue of the subject they represent: the fetus. This feature, along with the sophistication introduced by three-dimensional (3D) ultrasound imaging that allows improved visualization of the fetus, has contributed to the common impression that prenatal ultrasound scans are like photographs of the fetus. In this article we discuss the consistency of such a comparison. First, we investigate the epistemic role of both analogic and digital photographic images as visual information-providing representations holding a high degree of objectivity. Second, we examine the structure and process of production of ultrasound scans and argue that a comparison between two-dimensional (2D) ultrasound and photography is justified. This is in contrast to 3D ultrasound images that, due to the intensive mathematical processing involved in their production, present some structural issues that obfuscate their ontological and epistemic status

Newspaper coverage of human-pig chimera research: A qualitative study on select media coverage of scientific breakthrough

A recently published article in the journal Cell by scientists from the Salk Institute highlighted the successful integration of stem cells from humans in pig embryos. This marks the first step toward the goal of growing human organs in animals for transplantation. There has, to date, been no research performed on the presentation of this breakthrough in the media. We thus assessed early newspaper coverage of the chimera study, looking into the descriptions as well as the benefits and concerns raised by the study mentioned by newspaper sources.status: publishe

On the Epistemic Status of Prenatal Ultrasound: Are Ultrasound Scans Photographic Pictures?

Medical imaging is predominantly a visual field. In this context, prenatal ultrasound images assume intense social, ethical, and psychological significance by virtue of the subject they represent: the fetus. This feature, along with the sophistication introduced by three-dimensional (3D) ultrasound imaging that allows improved visualization of the fetus, has contributed to the common impression that prenatal ultrasound scans are like photographs of the fetus. In this article we discuss the consistency of such a comparison. First, we investigate the epistemic role of both analogic and digital photographic images as visual information-providing representations holding a high degree of objectivity. Second, we examine the structure and process of production of ultrasound scans and argue that a comparison between two-dimensional (2D) ultrasound and photography is justified. This is in contrast to 3D ultrasound images that, due to the intensive mathematical processing involved in their production, present some structural issues that obfuscate their ontological and epistemic status.status: publishe

Newspaper coverage of human‐pig chimera research: A qualitative study on select media coverage of scientific breakthrough

Background: A recently published article in the journal Cell by scientists from the Salk Institute highlighted the successful integration of stem cells from humans in pig embryos. This marks the first step toward the goal of growing human organs in animals for transplantation. There has, to date, been no research performed on the presentation of this breakthrough in the media. We thus assessed early newspaper coverage of the chimera study, looking into the descriptions as well as the benefits and concerns raised by the study mentioned by newspaper sources. Methods: We looked at newspaper coverage of the human-pig chimera study in the two weeks after the publication of the article describing the breakthrough in Cell. This time period spanned from January 26 to February 9, 2017. We used the LexisNexis Academic database and identified articles using the search string "hybrid OR chimera AND pig OR human OR embryo." The relevant articles were analyzed using qualitative content analysis. Two researchers openly coded the articles independently using themes that emerged from the raw texts. Results: Our search yielded 31 unique articles, after extensive screening for relevance and duplicates. Through our analysis, we were able to identify several themes in a majority of the texts. Almost every article gave descriptive information about the chimera experiment with details about the study findings. All of the articles mentioned the benefits of the study, citing both immediate- and long-term goals, which included creating transplantable human organs, disease and drug development, and personalized medicine, among others. Some of the articles highlighted some ethical, social, and health concerns that the study and its future implications pose. Many of the articles also offered reassurances over the concerns brought up by the experiment. Conclusions: Our results appeared to align with similar research performed on the media representation of sensitive scientific news coverage. We also explored the inconsistency between the tone of the titles and the articles that followed. However, it is still too early to speculate what impact the media will play in the public perception of this particular research. Keywords: chimera; genetic research; media representation; public perception; xenotransplantation

Towards an ethics of curiosity? The role of cinema in medical education on variations of sexual development

Objective: Although it is not uncommon to be born with an intersex condition or DSD, it is a topic which is still relatively unknown. The aim of the present paper is to explore the extent to which fiction movies on DSD/intersex can be used to help medical students to gain more experiential knowledge, enhance their empathic abilities and facilitate self-reflection on this issue. Methods: A systematic film review was conducted to identify and critically review relevant fiction movies on intersex or DSD. For this purpose, an online database research was performed in the Internet Movie Database (IMDb). Results: Recent films refrain from conveying a stereotypical image of intersex persons (e.g. freaks, villains, criminals, femme fatale) but tend to focus on young adults’ journey to self-discovery. Still, the many close-ups of body of the character with DSD might be interpreted as a kind morbid curiosity for a body that is considered “different”. Conclusions: Although in some ways reductive, guided discussions on coming-to-age stories can be used in the medical curriculum to offer an insight in the lived experiences of DSD and to allow future healthcare professionals to turn the medical gaze upon themselves

Big Data and discrimination: perils, promises and solutions. A systematic review

Background Big Data analytics such as credit scoring and predictive analytics offer numerous opportunities but also raise considerable concerns, among which the most pressing is the risk of discrimination. Although this issue has been examined before, a comprehensive study on this topic is still lacking. This literature review aims to identify studies on Big Data in relation to discrimination in order to (1) understand the causes and consequences of discrimination in data mining, (2) identify barriers to fair data-mining and (3) explore potential solutions to this problem. Methods Six databases were systematically searched (between 2010 and 2017): PsychINDEX, SocIndex, PhilPapers, Cinhal, Pubmed and Web of Science. Results Most of the articles addressed the potential risk of discrimination of data mining technologies in numerous aspects of daily life (e.g. employment, marketing, credit scoring). The majority of the papers focused on instances of discrimination related to historically vulnerable categories, while others expressed the concern that scoring systems and predictive analytics might introduce new forms of discrimination in sectors like insurance and healthcare. Discriminatory consequences of data mining were mainly attributed to human bias and shortcomings of the law; therefore suggested solutions included comprehensive auditing strategies, implementation of data protection legislation and transparency enhancing strategies. Some publications also highlighted positive applications of Big Data technologies. Conclusion This systematic review primarily highlights the need for additional empirical research to assess how discriminatory practices are both voluntarily and accidentally emerging from the increasing use of data analytics in our daily life. Moreover, since the majority of papers focused on the negative discriminative consequences of Big Data, more research is needed on the potential positive uses of Big Data with regards to social disparity