United in Big Data? Exploring scholars' opinions on academic-industry partnership and the use of corporate data in digital behavioral research.

The growing amount of data produced through digital technologies holds great promise for advancing behavioral research. Scholars worldwide now have the chance to access an incredible amount of personal information, thanks to the digital trace users continuously leave behind them. Private corporations play a crucial role in this scenario as the leading collectors of data on users, thus creating new incentives for partnerships between academic institutions and private companies. Due to the concerns that academic-company partnerships might raise and the ethical issues connected with Big Data research, our study explores the challenges and opportunities associated with the academic use of corporate data. We conducted 39 semi-structured interviews with academic scholars (professors, senior researchers, and postdocs) involved in Big Data research in Switzerland and the United States. We also investigated their opinions on using corporate data for scholarly research. Researchers generally showed an interest in using corporate data; however, they coincidentally shared ethical reservations towards this practice, such as threats to research integrity and concerns about a lack of transparency of companies' practices. Furthermore, participants mentioned issues of scholarly access to corporate data that might both disadvantage the academic research community and create issues of scientific validity. Academic-company partnerships could be a positive development for the advancement of scholarly behavioral research. However, strategies should be implemented to appropriately guide collaborations and appropriate use of corporate data, like implementing updated protocols and tools to govern conflicts of interest and the institution of transparent regulatory bodies to ensure adequate oversight of academic-corporate research collaborations.

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.

Social Media Terms and Conditions and Informed Consent From Children: Ethical Analysis.

BACKGROUND: Terms and conditions define the relationship between social media companies and users. However, these legal agreements are long and written in a complex language. It remains questionable whether users understand the terms and conditions and are aware of the consequences of joining such a network. With children from a young age interacting with social media, companies are acquiring large amounts of data, resulting in longitudinal data sets that most researchers can only dream of. The use of social media by children is highly relevant to their mental and physical health for 2 reasons: their health can be adversely affected by social media and their data can be used to conduct health research. OBJECTIVE: The aim of this paper is to offer an ethical analysis of how the most common social media apps and services inform users and obtain their consent regarding privacy and other issues and to discuss how lessons from research ethics can lead to trusted partnerships between users and social media companies. Our paper focuses on children, who represent a sensitive group among users of social media platforms. METHODS: A thematic analysis of the terms and conditions of the 20 most popular social media platforms and the 2 predominant mobile phone ecosystems (Android and iOS) was conducted. The results of this analysis served as the basis for scoring these platforms. RESULTS: The analysis showed that most platforms comply with the age requirements issued by legislators. However, the consent process during sign-up was not taken seriously. Terms and conditions are often too long and difficult to understand, especially for younger users. The same applies to age verification, which is not realized proactively but instead relies on other users who report underaged users. CONCLUSIONS: This study reveals that social media networks are still lacking in many respects regarding the adequate protection of children. Consent procedures are flawed because they are too complex, and in some cases, children can create social media accounts without sufficient age verification or parental oversight. Adopting measures based on key ethical principles will safeguard the health and well-being of children. This could mean standardizing the registration process in accordance with modern research ethics procedures: give users the key facts that they need in a format that can be read easily and quickly, rather than forcing them to wade through chapters of legal language that they cannot understand. Improving these processes would help safeguard the mental health of children and other social media users.

First do no harm: An exploration of researchers' ethics of conduct in Big Data behavioral studies.

Research ethics has traditionally been guided by well-established documents such as the Belmont Report and the Declaration of Helsinki. At the same time, the introduction of Big Data methods, that is having a great impact in behavioral research, is raising complex ethical issues that make protection of research participants an increasingly difficult challenge. By conducting 39 semi-structured interviews with academic scholars in both Switzerland and United States, our research aims at exploring the code of ethics and research practices of academic scholars involved in Big Data studies in the fields of psychology and sociology to understand if the principles set by the Belmont Report are still considered relevant in Big Data research. Our study shows how scholars generally find traditional principles to be a suitable guide to perform ethical data research but, at the same time, they recognized and elaborated on the challenges embedded in their practical application. In addition, due to the growing introduction of new actors in scholarly research, such as data holders and owners, it was also questioned whether responsibility to protect research participants should fall solely on investigators. In order to appropriately address ethics issues in Big Data research projects, education in ethics, exchange and dialogue between research teams and scholars from different disciplines should be enhanced. In addition, models of consultancy and shared responsibility between investigators, data owners and review boards should be implemented in order to ensure better protection of research participants.

Working Through Ethics Review of Big Data Research Projects: An Investigation into the Experiences of Swiss and American Researchers.

The employment of Big Data as an increasingly used research method has introduced novel challenges to ethical research practices and to ethics committees (ECs) globally. The aim of this study is to explore the experiences of scholars with ECs in the ethical evaluation of Big Data projects. Thirty-five interviews were performed with Swiss and American researchers involved in Big Data research in psychology and sociology. The interviews were analyzed using thematic coding. Our respondents reported lack of support from ECs, absence of appropriate expertise among members of the boards, and lack of harmonized evaluation criteria between committees. To implement ECs practices we argue for updating the expertise of board members and the institution of a consultancy model between researchers and ECs.

Big Data and Digitalization in Dentistry: A Systematic Review of the Ethical Issues.

Big Data and Internet and Communication Technologies (ICT) are being increasingly implemented in the healthcare sector. Similarly, research in the field of dental medicine is exploring the potential beneficial uses of digital data both for dental practice and in research. As digitalization is raising numerous novel and unpredictable ethical challenges in the biomedical context, our purpose in this study is to map the debate on the currently discussed ethical issues in digital dentistry through a systematic review of the literature. Four databases (Web of Science, Pub Med, Scopus, and Cinahl) were systematically searched. The study results highlight how most of the issues discussed by the retrieved literature are in line with the ethical challenges that digital technologies are introducing in healthcare such as privacy, anonymity, security, and informed consent. In addition, image forgery aimed at scientific misconduct and insurance fraud was frequently reported, together with issues of online professionalism and commercial interests sought through digital means.

What is your definition of Big Data? Researchers' understanding of the phenomenon of the decade.

METHODS: Thirty-nine interviews were performed with Swiss and American researchers involved in Big Data research in relevant fields. The interviews were analyzed using thematic coding. RESULTS: No univocal definition of Big Data was found among the respondents and many participants admitted uncertainty towards giving a definition of Big Data. A few participants described Big Data with the traditional "Vs" definition-although they could not agree on the number of Vs. However, most of the researchers preferred a more practical definition, linking it to processes such as data collection and data processing. CONCLUSION: The study identified an overall uncertainty or uneasiness among researchers towards the use of the term Big Data which might derive from the tendency to recognize Big Data as a shifting and evolving cultural phenomenon. Moreover, the currently enacted use of the term as a hyped-up buzzword might further aggravate the conceptual vagueness of Big Data.

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.

Noninvasive prenatal testing: a survey of young (future) parents in Flanders.

AIM: To explore the opinions of young (future) parents toward noninvasive prenatal testing. MATERIALS & METHODS: A questionnaire was administrated. RESULTS: A total of 1006 surveys were completed by visitors of 40 secondhand clothing fairs spread equally over Flanders (Belgium). The respondents expressed an overall positive opinion toward the use and implementation of a noninvasive prenatal test (NIPT). Most respondents claimed that they would test their unborn child for genetic disorders, even if this was to result in a termination of the pregnancy. CONCLUSION: The participants agreed nearly unanimously that NIPT must be offered to pregnant women with an increased risk of having a child with a genetic disorder, but they were also positive about extending NIPT screening to all pregnant women.

Do athletes have a right to access data in their Athlete Biological Passport?

The Athlete Biological Passport (ABP) refers to the collection of data related to an individual athlete. The ABP contains the Haematological Module and the Steroidal Module, which are used for the longitudinal monitoring of variables in blood and urine, respectively. Based on changes in these variables, a statistical model detects outliers which indicate doping use and guide further targeted testing of the athlete. Presently, athletes can access their data of the Haematological Module in the Anti-Doping Administration and Management System (ADAMS). However, granting athletes access to this data has been a matter of debate within the anti-doping community. This article investigates whether an athlete has a right to access the contents of their ABP profile. We approached this discussion by comparing the nature of ABP data with that of forensic and medical data and touched on important concerns with ABP data disclosure to athletes such as potentially allowing for the development of alternative doping techniques to circumvent detection; and making athletes vulnerable to pressure by the media to publicly release their data. Furthermore, given that ABP data may contain medically relevant information that can be used to diagnose disease, athletes may over-interpret its medical significance and wrongly see it as a free health check. We argue that safeguarding the integrity of the ABP system must be seen as the most essential element and thus a departure from immediate data disclosure is necessary. Two different strategies for delayed data disclosure are proposed which diminish the chances of ABP data being misused to refine doping techniques.

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.