Health Research with Data in a Time of Privacy: Which Information do Patients Want?

When hospitals ask broad consent for the secondary use of patient data for scientific research, it is unknown for which studies the data will be used. We investigated what patients at a cancer hospital consider to be an adequate level and most suitable method of information provision using questionnaires (n = 71) and interviews (n = 24). A part of the respondents indicated that they would feel sufficiently informed by either being notified about potential further use, or by receiving a general brochure before being asked for consent.

FAIR Genomes metadata schema promoting Next Generation Sequencing data reuse in Dutch healthcare and research.

The genomes of thousands of individuals are profiled within Dutch healthcare and research each year. However, this valuable genomic data, associated clinical data and consent are captured in different ways and stored across many systems and organizations. This makes it difficult to discover rare disease patients, reuse data for personalized medicine and establish research cohorts based on specific parameters.

Barriers and Facilitators for Implementing a National Guideline to Foster the Responsible Use of Residual Biospecimens and Data in Health Research.

Residual biospecimens that are stored in hospitals' diagnostic specimen archives can be used for scientific research under strict legal and ethical regulations. In the Netherlands, a Code of Conduct governs responsible secondary use of residual biospecimens. However, implementation of this Code seems to be challenging.

Recall and Retention of Consent Procedure Contents and Decisions: Results of a Randomized Controlled Trial.

Background: Residual tissue samples, i.e., samples excised for diagnosis or during treatment, are commonly used for medical research.

Patients' Attitudes Towards the Return of Incidental Findings After Research with Residual Tissue: A Mixed Methods Study.

Aims: To investigate the attitudes of patients toward the return of individual research results from scientific research with residual tissue.

Methods And Findings: We recruited 1319 patients from 6 Dutch hospitals. In total, 673 patients (51% response rate) completed the questionnaire and 146 were interviewed.

Exceptions to the rule of informed consent for research with an intervention.

Background: In specific situations it may be necessary to make an exception to the general rule of informed consent for scientific research with an intervention. Earlier reviews only described subsets of arguments for exceptions to waive consent.

Methods: Here, we provide a more extensive literature review of possible exceptions to the rule of informed consent and the accompanying arguments based on literature from 1997 onwards, using both Pubmed and PsycINFO in our search strategy.

Altruistic punishment and between-group competition : evidence from n-person prisoner's dilemmas.

Collective action, or the large-scale cooperation in the pursuit of public goods, has been suggested to have evolved through cultural group selection. Previous research suggests that the costly punishment of group members who do not contribute to public goods plays an important role in the resolution of collective action dilemmas. If large-scale cooperation sustained by the punishment of defectors has evolved through the mechanism of cultural group selection, two implications regarding costly punishment follow: (1) that people are more willing to punish defecting group members in a situation of intergroup competition than in a single-group social dilemma game and (2) that levels of "perverse" punishment of cooperators are not affected by intergroup competition.

[Consent for the secondary use of human residual tissue: the patient is best served by an 'opting-out' procedure].

In medical scientific research much use is made of human bodily material (residual tissue) which remains after treatment or diagnosis. Using this, relevant research questions can be answered. The way in which patients can consent to the secondary use of residual tissue is now formalised in a code of conduct, which allows such use unless the patient has objected to this use ('opting-out' procedure).

Social learning of novel route preferences in adult humans.

Non-human animals can acquire novel route preferences by following knowledgeable individuals. Such socially learned route preferences can be stably maintained over multiple transmission episodes, sometimes forming long-lived traditions. In humans, preferences for familiar routes or heavily used worn trails over unfamiliar ones have been described in various contexts.