Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing.

Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support into an ethical dilemma. Shared decision-making with parents has gained ground. However, the need to start immediate life support and the ensuing difficulty of withdrawing treatment stands in tension with the possibility of a fair decision-making process. Both the parental “instinct of saving” and “withdrawal resistance” involved can preclude shared decision-making. To help health care personnel and empower parents, we propose a novel approach labeled “postponed withholding.” In the absence of a prenatal advance directive, life support is started at birth, followed by planned redirection to palliative care after one week, unless parents, after a thorough counseling process, actively ask for continued life support. Despite the emotional challenges, this approach can facilitate ethically balanced decision-making processes in the gray zone.

An increasing number of European research projects return, or plan to return, individual genomic research results (IRR) to participants. While data access is a data subject’s right under the General Data Protection Regulation (GDPR), and many legal and ethical guidelines allow or require participants to receive personal data generated in research, the practice of returning results is not straightforward and raises several practical and ethical issues. Existing guidelines focusing on return of IRR are mostly project-specific, only discuss which results to return, or were developed outside Europe. To address this gap, we analysed existing normative documents identified online using inductive content analysis. We used this analysis to develop a checklist of steps to assist European researchers considering whether to return IRR to participants. We then sought feedback on the checklist from an interdisciplinary panel of European experts (clinicians, clinical researchers, population-based researchers, biobank managers, ethicists, lawyers and policy makers) to refine the checklist. The checklist outlines seven major components researchers should consider when determining whether, and how, to return results to adult research participants: 1) Decide which results to return; 2) Develop a plan for return of results; 3) Obtain participant informed consent; 4) Collect and analyse data; 5) Confirm results; 6) Disclose research results; 7) Follow-up and monitor. Our checklist provides a clear outline of the steps European researchers can follow to develop ethical and sustainable result return pathways within their own research projects. Further legal analysis is required to ensure this checklist complies with relevant domestic laws.

With the introduction of whole genome sequencing in medical research, the debate on how to handle incidental findings is becoming omnipresent. Much of the literature on the topic so far, seems to defend the researcher’s duty to inform, the participant’s right to know combined with a thorough informed consent in order to protect and secure high ethical standards in research. In this paper, we argue that this ethical response to incidental findings and whole genome sequencing is appropriate in a clinical context, in what we call therapeutic research. However, we further argue, that it is rather inappropriate in basic research, like the research going on in public health oriented population based biobanks. Our argument is based on two premises: First, in population based biobank research the duties and rights involved are radically different from a clinical based setting. Second, to introduce the ethical framework from the clinical setting into population based basic research, is not only wrong, but it may lead to unethical consequences. A Norwegian population based biobank and the research-ethical debate in Norway on the regulation of whole genome sequencing is used as an illustrative case to demonstrate the pitfalls when approaching the debate on incidental findings in population based biobank research.

Engagement, involvement, and active participation are buzzwords used in today's ethical debate on research biobanking. There are a variety of context-sensitive governance frameworks for research biobanks. However, many biobanks, especially large-scale population-based ones, seem to endorse a framework of broad consent, participation with minimal or no ongoing engagement, and no return of results. An alternative vision of involvement and active participation in this type of research has become increasingly visible in the literature. The problem, seen from the biobankers' perspective, is that the alternative vision might be costly, cumbersome, and risky, while the prevailing system for governance will maximize the scientific value of the biobank with minimal ethical, legal, and social efforts. Therefore, solid and convincing arguments are needed to determine if biobank institutions should take a radical step toward more ongoing engagement and donor involvement. In this paper, we review the arguments found in articles addressing dynamic consent, participatory research, reciprocity, and participant engagement in biobank research. We identify four core ideas on which the arguments for increased involvement are based. The strength of the arguments are then analyzed. We conclude that despite challenges with increased engagement, there seem to be substantial reasons to increase participant engagement in biobanking.

Health promotion is often been associated with altering social arrangement in order to improve the health of citizens—the domain of public health. Ethical aspects of health promotion then is generally discussed in terms of a public health ethics. In this chapter, I start out with some classical ethical and political dilemmas of health promotion in public health before I move into the ethics of health promotion in health care. I argue that empowerment, better than any other value, may serve as the ethical foundation for health promotion in health care. I further claim that empowerment may serve as the ethical bridge between health promotion in health care and health promotion in public health.