Research Ethics 2.0: New Perspectives on Norms, Values, and Integrity in Genomic Research in Times of Even Scarcer Resources

Brall, Caroline; Maeckelberghe, Els; Porz, Rouven; Makhoul, Jihad; Schröder‐Bäck, Peter

doi:10.1159/000462960

Cited by 14 publications

(11 citation statements)

References 25 publications

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“…This shift mostly affected the role of informed consent. In research ethics 1.0, informed consent referred to regularly informing participants about the purpose of research, the risks and benefits of being involved, and the right of a citizen to withdraw from the research at any time (Brall et al 2017). As such, informed consent was paper based and reflected conventional models of involving human subjects used in 'Engagement 1.0' (Teare et al 2015).…”

Section: Types Of Informed Consentmentioning

confidence: 99%

Ethical Challenges and Dynamic Informed Consent

Tauginienė¹,

Hummer

Albert

et al. 2021

The Science of Citizen Science

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This chapter uses informed consent as a point of departure for the description of multiple ethical facets in citizen science. It sets out an overview of general ethical challenges in citizen science, from conceptual issues around social imbalances and power relations, to practical issues, such as how to deal with privacy for participants as well as data protection, intellectual property rights and other emergent issues. The chapter goes on to describe the different types of informed consent, particularly focusing on dynamic informed consent as the solution to the challenges described. Finally, practice-oriented recommendations about how to tackle some of the ethical issues raised in the chapter are set out.

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Section: Types Of Informed Consentmentioning

confidence: 99%

Ethical Challenges and Dynamic Informed Consent

Tauginienė¹,

Hummer

Albert

et al. 2021

The Science of Citizen Science

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“…This cast questions on actual number of occurrences, as many of them would not have reported misconduct. Other authors have highlighted the same issue and cast doubt on the reproducibility of scientific data (Resnik and Shamoo, 2017;Brall et al, 2017;Shamoo 2016;Collins and Tabak 2014;Kornfeld and Titus 2016).…”

Section: Amongst Academics and Pismentioning

confidence: 99%

Unethical practices within medical research and publication – An exploratory study

et al. 2021

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The data produced by the scientific community impacts on academia, clinicians, and the general public; therefore, the scientific community and other regulatory bodies have been focussing on ethical codes of conduct. Despite the measures taken by several research councils, unethical research, publishing and/or reviewing behaviours still take place. This exploratory study considers some of the current unethical practices and the reasons behind them and explores the ways to discourage these within research and other professional disciplinary bodies. These interviews/discussions with PhD students, technicians, and academics/principal investigators (PIs) (N=110) were conducted mostly in European higher education institutions including UK, Italy, Ireland, Portugal, Czech Republic and Netherlands.Through collegiate discussions, sharing experiences and by examining previously published/reported information, authors have identified several less reported behaviours. Some of these practices are mainly influenced either by the undue institutional expectations of research esteem or by changes in the journal review process. These malpractices can be divided in two categories relating to (a) methodological malpractices including data management, and (b) those that contravene publishing ethics. The former is mostly related to “committed bias”, by which the author selectively uses the data to suit their own hypothesis, methodological malpractice relates to selection of out-dated protocols that are not suited to the intended work. Although these are usually unintentional, incidences of intentional manipulations have been reported to authors of this study. For example, carrying out investigations without positive (or negative) controls; but including these from a previous study. Other methodological malpractices include unfair repetitions to gain statistical significance, or retrospective ethical approvals. In contrast, the publication related malpractices such as authorship malpractices, ethical clearance irregularities have also been reported. The findings also suggest a globalised approach with clear punitive measures for offenders is needed to tackle this problem.

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“…when genetic data are involved, extend the knowledge gained about an individual to his or her genetically related family members. Revision of existing and traditional models of informed consent, such as opt-out, waiver, no consent and open or categorical consent, is needed for meeting the challenges posed and adjusting consent mechanisms accordingly to ensure and promote autonomy for everyone in line with fair data uses 16 …”

Section: Ethical Chances and Challenges Of Digital Healthmentioning

confidence: 99%

Ethical aspects of digital health from a justice point of view

Brall

Schröder‐Bäck

Maeckelberghe

2019

European Journal of Public Health

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Digital health is transforming healthcare systems worldwide. It promises benefits for population health but might also lead to health inequities. From an ethical perspective, it is hence much needed to adopt a fair approach. This article aims at outlining chances and challenges from an ethical perspective, focusing especially on the dimension of justice—a value, which has been described as the core value for public health. Analysed through the lenses of a standard approach for health justice—Norman Daniels’ account of just health and accountability for reasonableness—most recent and relevant literature was reviewed and challenges from a justice point of view were identified. Among them are challenges with regard to digital illiteracy, resulting inequities in access to healthcare, truthful information sharing to end users demanding fully informed consent, dignity and fairness in storage, access, sharing and ownership of data. All stakeholders involved bear responsibilities to shape digital health in an ethical and fair way. When all stakeholders, especially digital health providers and regulators, ensure that digital health interventions are designed and set up in an ethical and fair way and foster health equity for all population groups, there is a chance for this transformation resulting in a fair approach to digital health.

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Research Ethics 2.0: New Perspectives on Norms, Values, and Integrity in Genomic Research in Times of Even Scarcer Resources

Cited by 14 publications

References 25 publications

Ethical Challenges and Dynamic Informed Consent

Ethical Challenges and Dynamic Informed Consent

Unethical practices within medical research and publication – An exploratory study

Ethical aspects of digital health from a justice point of view

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