Mothering a population: How Danish mothers experience newborn dried blood spot samples and their considerations about re-use of samples for research purposes.

Introduction: Newborn dried blood spot (NDBS) samples have a primary clinical purpose of screening, but often also a secondary purpose of re-use for research purposes. This study investigates how Danish mothers experience the sample being taken, their considerations about potential re-use for research, and their reflections on the level of information they receive about NDBS samples and their re-use for research purposes.

Methods: This study is based on semi-structured interviews with 19 mothers of newborn babies, conducted within the first year after the birth.

Newborn dried blood spot samples in Denmark: the hidden figures of secondary use and research participation.

Each year millions of newborns are part of a newborn disease-screening program in which, after initial screening, the newborn dried blood spot (NDBS) samples can be stored and used as a population-based research resource. However, very little knowledge exists about how these samples are used for secondary purposes. Our objective is to estimate and describe the usage of a NDBS-based national population biobank for secondary research purposes.

The rise and fall of an opt-out system.

In Denmark, citizens participate in register-based research without the possibility of opting out. However, in 1995 it was made possible for Danish citizens to register an opt-out called 'researcher protection' [], which implied that researchers could not contact people to invite them to participate in research projects, such as clinical trials or questionnaries, based on their registrations in national registers. Data already registered could still be used for research.

From motivation to acceptability: a survey of public attitudes towards organ donation in Denmark.

Background: Over the past three decades, public attitudes to organ donation have been a subject of numerous studies focusing on donor motivation. Here, we present a fresh approach. We suggest focusing on public acceptability instead of motivation.