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.

Data protection during the coronavirus crisis.

Smartphone apps to track SARS-CoV 2 infections need to fulfill certain minimal requirements to guarantee privacy and justify their use under data protection laws.

All Our Data Will Be Health Data One Day: The Need for Universal Data Protection and Comprehensive Consent.

Tremendous growth in the types of data that are collected and their interlinkage are enabling more predictions of individuals' behavior, health status, and diseases. Legislation in many countries treats health-related data as a special sensitive kind of data. Today's massive linkage of data, however, could transform "nonhealth" data into sensitive health data. In this paper, we argue that the notion of health data should be broadened and should also take into account past and future health data and indirect, inferred, and invisible health data. We also lay out the ethical and legal implications of our model.

Google's Project Nightingale highlights the necessity of data science ethics review.

On November 14 last year, the British Guardian published an account from an anonymous whistleblower at Google, accusing the company of misconduct in regard to handling sensitive health data. The whistleblower works for Project Nightingale, an attempt by Google to get into the lucrative US healthcare market, by storing and processing the personal medical data of up to 50 million customers of Ascension, one of America's largest healthcare providers. As the Wall Street Journal had already reported 3 days earlier, and as the whistleblower confirmed, neither was the data anonymized when transmitted from Ascension nor were patients or their doctors notified, let alone asked for consent to sharing their data with Google (Copeland, 2019; Pilkington, 2019). As a result, Google employees had full access to non-anonymous patient health data. Google Health chief David Feinberg commented that all Google employees involved had gone through medical ethics training and were approved by Ascension (Feinberg, 2019).

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.