The use of advance directives for autonomy in dementia care: A scoping meta-review and thematic synthesis.

Dementia may reduce individuals' capacity for autonomy and decision-making competence. Advance directives are subject to theoretical bioethical debate as tools to safeguard or extend autonomy in dementia. However, the extent and manner in which advance directives are actually used for these purposes in practice remain less examined. We aimed to examine how advance directives are used as tools for individual autonomy in dementia care. We systematically searched six databases and performed a thematic analysis and synthesis of included reviews based on an original model of six autonomy-relevant dimensions of advance directives. A total of 18 reviews met the inclusion criteria. We identified 12 themes across six dimensions. We found a lack of knowledge integration on the actual use of advance directives for autonomy in dementia care. Evidence suggests significant variation in the autonomy-relevant dimensions of advance directives, with a tendency towards an inconsistent or low level of implementation as a tool for autonomy. Further reviews and primary studies on all aspects of the use of advance directives for autonomy in dementia care would contribute significantly to dementia research and practice.

Blanket Consent and Trust in the Biobanking Context.

Obtaining human genetic samples is vital for many biobank research purposes, yet, the ethics of obtainment seems to many fraught with difficulties. One key issue is consent: it is by many considered ethically vital that consent must be fully informed (at least ideally speaking) in order to be legitimate. In this paper, we argue for a more liberal approach to consent: a donor need not know all the specifics of future uses of the sample. We argue that blanket consent is ethically defensible, and that this is buttressed by considerations of (justified) trust-relations. Given robust institutional oversight, blanket consent is a permissible form of consent in the bio-banking context.

Property and human genetic information.

Do donors (of samples from which genetic information is derived) have some sort of pre-legal (moral) or legal property right to that information? In this paper, we address this question from both a moral philosophical and a legal point of view. We argue that philosophical theories about property do not seem to support a positive answer: We have not mixed our labour with our genes, and the human genome cannot be said to be a fitting object for private ownership based on some idea of self-ownership. An analysis of the term 'property' as seen from a legal perspective yields the conclusion that property is, at best, a linguistic prop whose real content has to be defined at least partially conventionally. Relevant interests that may be seen to be protected seem to be interests of privacy or interests against exploitation. To the extent that the logic behind the patent system holds true limiting incentives decreases innovation in society. A balancing of interest must take place, and we have to make sure that patent protection serves general societal interests and not just those of special interest groups be that inventors or donors.

Challenges for the Sustainability of University-Run Biobanks.

Most university biobanks begin like other university research projects, that is, with an idea conceived by an individual researcher in pursuit of his/her own research interests, publications, funding, and career. Some biobanks, however, come to have scientific value that goes beyond the projects that were initially responsible for the collection of the samples and data they contain. Such value may derive from among other things the uniqueness of the samples in terms of their sheer volume, the quality of the samples, the ability to link the samples with information retrieved in disease registries, or the fact that the samples represent very rare diseases. This article focuses on biobanks of this kind, and the special obligations that publicly funded universities have to ensure the sustainability of biobanks with continued scientific value. We argue that universities should adopt policies to deal with the various, diverse issues which may arise during the lifecycle of a biobank. The policies should be flexible, accommodate the freedoms of individual researchers, and reflect the multifaceted nature of biobanks. Yet they should be specific enough to provide guidance and robust enough to safeguard legal norms and ethical values. The article sets out concrete recommendations which universities should consider and act upon.

"I didn't have anything to decide, I wanted to help my kids"-An interview-based study of consent procedures for sampling human biological material for genetic research in rural Pakistan.

BACKGROUND: Individual, comprehensive, and written informed consent is broadly considered an ethical obligation in research involving the sampling of human material. In developing countries, however, local conditions, such as widespread illiteracy, low levels of education, and hierarchical social structures, complicate compliance with these standards. As a result, researchers may modify the consent process to secure participation. To evaluate the ethical status of such modified consent strategies it is necessary to assess the extent to which local practices accord with the values underlying informed consent. METHODS: Over a 2-week period in April 2014 we conducted semistructured interviews with researchers from a genetic research institute in rural Pakistan and families who had given blood samples for their research. Interviews with researchers focused on the institute's requirements for consent, and the researchers' strategies for and experiences with obtaining consent in the field. Interviews with donors focused on their motivation for donating samples, their experience of consent and donation, and what factors were central in their decisions to give consent. RESULTS: Researchers often reported modifications to consent procedures suited to the local context, standardly employing oral and elder consent, and tailoring information to the social education level of donor families. Central themes in donors' accounts of their decision to consent were the hope of getting something out of their participation and their remarkably high levels of trust in the researchers. Several donor accounts indicated a degree of confusion about participation and diagnosis, resulting in misconceived expectations of therapeutic benefits. CONCLUSIONS: We argue that while building and maintaining trusting relationships in research is important-not least in developing countries-strategies that serve this endeavor should be supplemented with efforts to ensure proper provision and understanding of relevant information, specifically about the nature of research and measures for individual consent and opt-out.

Is Consent Based on Trust Morally Inferior to Consent Based on Information?

Informed consent is considered by many to be a moral imperative in medical research. However, it is increasingly acknowledged that in many actual instances of consent to participation in medical research, participants do not employ the provided information in their decision to consent, but rather consent based on the trust they hold in the researcher or research enterprise. In this article we explore whether trust-based consent is morally inferior to information-based consent. We analyse the moral values essential to valid consent - autonomy, voluntariness, non-manipulation, and non-exploitation - and assess whether these values are less protected and promoted by consent based on trust than they are by consent based on information. We find that this is not the case, and thus conclude that trust-based consent if not morally inferior to information-based consent.