Table 3 Included scientific articles.

1.

Bak et al. [16]

Review

Ethical aspects of data protection in Sudden Cardiac Arrest setting

To thematically analyze ethical aspects of non-interventional emergency medicine and critical care research.

2.

Becker et al. [47]

Viewpoint

Legal grounds and derogations in the GDPR for research during a pandemic

To help research institutions navigate European data protection law within the COVID-19 crisis.

3.

Boyd [50]

Commentary

Linking health data with census data on ethnicity

To reflect on the benefits and potential harms of linking health data with census data on ethnicity.

4.

Brown et al. [49]

Original article

Secondary use of health data without consent

To analyze the legality of the use of electronic patient records in the NHS for research without explicit patient consent under UK and EU law.

5.

Casteleyn et al. [51]

Research article

Ethics and data protection in environmental health studies using biomarkers

To summarize the main features of ethics and data protection in studies using biomarkers in the field of environmental health and to highlight current discussions on related questions and bottlenecks.

6.

Hansson [35]

Review

Ethical issues in biobank research

To review the literature regarding some major themes in the discussion about ethics and biobanks.

7.

Hill et al. [38]

Research article

Consent to secondary use of health data

To determine the range of public opinion about the use of existing medical data for research and to explore views about consent to a secondary review of medical records for research.

8.

Holm and Ploug [33]

Symposium article

Big Data and health research governance

To describe the current Danish system, to outline a likely development in the near future and to discuss whether the current Danish governance system for the secondary use of health data is still suitable.

9.

Larson et al. [22]

Original research—Special report

Clinical data for AI applications

To propose an ethical framework for using and sharing clinical data for the development of artificial intelligence applications.

10.

Laurie et al. [19]

Article

Governance of health research

To provide an overview of essential elements of good governance of data linkage for health-related research, to consider lessons learned so far and to examine key factors currently impeding the delivery of good governance in this area.

11.

Laurie and Sethi [34]

Article

Governance of health research

To assess and advocate a principles-based approach contrasting this with traditional rule-based approaches and to propose a model of principled proportionate governance.

12.

McGraw et al. [18]

Article

Patient privacy in pragmatic clinical trials

To explore both the ethical foundation and regulatory framework intended to protect privacy in pragmatic clinical trials and to review examples of novel approaches to respecting persons in research that may have the added benefit of honoring patient privacy considerations.

13.

Mostert et al. [3]

Policy

Big Data in medical research

To review how the dominant “consent or anonymize approach” is challenged in a data-intensive medical research context, and to discuss possible ways forwards within the EU legal framework on data protection.

14.

Parkin and Paul [24]

Research report

Secondary use of health data

To explore public views about the use of medical information for the post-marketing surveillance of medicine safety.

15.

Porsdam Mann et al. [23]

Discussion

Research ethics

To examine the ethical tensions that arise between the conflicting goals of advancing biomedical research and protecting patient privacy and to propose a risk-adapted framework for the facilitation of ethical uses of health data for the benefit of society.

16.

Price and Cohen [21]

Review article

Big Data

To outline the legal and ethical challenges big data brings to patient privacy.

17.

Richter et al. [46]

Article

Secondary use of clinical data

To examine whether abolishing consent for secondary data use would be acceptable to patients.

18.

Rumbold and Pierscionek [39]

Debate

GDPR

To examine and compare data protection laws in seven different jurisdictions governed by the GDPR.

19.

Schmit et al. [17]

Original paper

Patient communication

To improve communication with patients and transparency about how complex software, such as MiNDFIRL, is used to enhance privacy in secondary database studies to maintain the public’s trust in researchers.

20.

Shabani and Borry [36]

Review article

GDPR

To explore the major provisions of the GDPR with regard to processing genetic data, and to assess the influence of such provisions on reinforcing the legal safeguards when sharing genetic data for research purposes.

21.

Shabani et al. [37]

Review article

Genomic data sharing

To review oversight practices by Research Ethics and Data Access Committees and argue that they reveal a compelling need to clarify the scope of ethical considerations by oversight bodies and to delineate core elements such as “objectionable” data uses.

22.

Stjernschantz Forsberg et al. [48]

Analysis

Individual consent in biobank research

To argue that requiring informed consent for research on stored tissue samples and associated data not only defeats the interest of society but also runs counter to the interests of the individuals it purports to protect.

23.

Staunton et al. [4]

Policy

GDPR

To review soft legal tools, international treaties and other legal instruments that regulate the use of health research data.

24.

Thorogood and Zawati [15]

Symposium article

Genomic biobanking

To review international privacy norms governing human genomic biobanks and databases.

25.

Ulrich et al. [52]

Article

Patient privacy and clinical research

To discuss the ethical challenges of balancing patient privacy with advancing clinical research and ask what level of privacy and confidentiality can and should patients expect from their clinician providers, fellow research colleagues, and institutions.

26.

Williams and Pigeot [2]

Opinion paper

Ethical requirements for research

To critically discuss conventional approaches to research ethics that emphasize consent and data protection.