Motivations of children and their parents to participate in drug research: a systematic review

Information on motivations for research participation, may enable professionals to better tailor the process of recruitment and informed consent to the perspective of parents and children. Therefore, this systematic review assesses motivating and discouraging factors for children and their parents to decide to participate in clinical drug research. Studies were identified from searches in 6 databases. Two independent reviewers screened and selected relevant articles. Results were aggregated and presented by use of qualitative metasummary. 38 studies fulfilled the selection criteria and were of sufficient quality for inclusion in the qualitative metasummary. Most mentioned motivating factors for parents were: health benefit for child, altruism, trust in research, and relation to researcher. Most mentioned motivating factors for children were: personal health benefit, altruism and increasing comfort. Fear of risks, distrust in research, logistical aspects and disruption of daily life were mentioned most by parents as discouraging factors. Burden and disruption of daily life, feeling like a “guinea pig” and fear of risks were most mentioned as discouraging factors by children. Conclusion: Paying attention to these motivating and discouraging factors of children and their parents during the recruitment and informed consent process in drug research increases the moral and instrumental value of informed consent.What is known:• This systematic review pools the existing empirical literature on motivations of minors and their parents to consent or dissent to participation in clinical drug research.• The most mentioned motivating and discouraging factors for children and their parents to consent to participation in clinical drug research are identified aggregated and presented by use of qualitative metasummary.What is new:• This information can be used to adapt the research protocol, recruitment, and informed consent/assent process to the needs of children and their parents

Between Protection and Participation : Moral promises and perils in pediatric clinical research

This thesis aims to contribute to the optimal inclusion of children in pediatric clinical research in such a way that we can further clinical research to advance scientific knowledge and develop much-needed treatment options for children while protecting children against harm from research. Why do children and parents want to participate (or not)? What are their motivations and what is important to them in their decision? What expectations do they have of participation? Answers to these questions are indispensable in order to incorporate their views into the pediatric research enterprise and tailor the process of recruitment and informed consent to their needs and perspectives. When we know why children and parents consent or dissent to research and what elements they use in their decision, we know what they attach importance to in their decision. From this data, we learn which information they want and need to make a valid informed decision. This information helps us to increase both the moral and instrumental value of informed consent in pediatric clinical research; we obtain more informed consent and probably more informed consent. The main research aims of this thesis are as follows: 1. To explore children’s and their parents’ motivations, views and expectations during recruitment and informed consent processes in pediatric clinical research. 2. To analyze these motivations, views and expectations and the factors that shape them from an ethical and legal perspective. 3. To develop a normative framework to support research professionals in the ethically sound inclusion of children in pediatric clinical research. This framework tailors the proc

Fear, Loathing, and Victorian Xenophobia

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Between Protection and Participation : Moral promises and perils in pediatric clinical research

This thesis aims to contribute to the optimal inclusion of children in pediatric clinical research in such a way that we can further clinical research to advance scientific knowledge and develop much-needed treatment options for children while protecting children against harm from research. Why do children and parents want to participate (or not)? What are their motivations and what is important to them in their decision? What expectations do they have of participation? Answers to these questions are indispensable in order to incorporate their views into the pediatric research enterprise and tailor the process of recruitment and informed consent to their needs and perspectives. When we know why children and parents consent or dissent to research and what elements they use in their decision, we know what they attach importance to in their decision. From this data, we learn which information they want and need to make a valid informed decision. This information helps us to increase both the moral and instrumental value of informed consent in pediatric clinical research; we obtain more informed consent and probably more informed consent. The main research aims of this thesis are as follows: 1. To explore children’s and their parents’ motivations, views and expectations during recruitment and informed consent processes in pediatric clinical research. 2. To analyze these motivations, views and expectations and the factors that shape them from an ethical and legal perspective. 3. To develop a normative framework to support research professionals in the ethically sound inclusion of children in pediatric clinical research. This framework tailors the process of recruitment and informed consent to the perspective and the needs of children and their parents, who have the key role in decisions on research participation

Prevention in the age of personal responsibility: epigenetic risk-predictive screening for female cancers as a case study

Epigenetic markers could potentially be used for risk assessment in risk-stratified population-based cancer screening programmes. Whereas current screening programmes generally aim to detect existing cancer, epigenetic markers could be used to provide risk estimates for not-yet-existing cancers. Epigenetic risk-predictive tests may thus allow for new opportunities for risk assessment for developing cancer in the future. Since epigenetic changes are presumed to be modifiable, preventive measures, such as lifestyle modification, could be used to reduce the risk of cancer. Moreover, epigenetic markers might be used to monitor the response to risk-reducing interventions. In this article, we address ethical concerns related to personal responsibility raised by epigenetic risk-predictive tests in cancer population screening. Will individuals increasingly be held responsible for their health, that is, will they be held accountable for bad health outcomes? Will they be blamed or subject to moral sanctions? We will illustrate these ethical concerns by means of a Europe-wide research programme that develops an epigenetic risk-predictive test for female cancers. Subsequently, we investigate when we can hold someone responsible for her actions. We argue that the standard conception of personal responsibility does not provide an appropriate framework to address these concerns. A different, prospective account of responsibility meets part of our concerns, that is, concerns about inequality of opportunities, but does not meet all our concerns about personal responsibility. We argue that even if someone is responsible on grounds of a negative and/or prospective account of responsibility, there may be moral and practical reasons to abstain from moral sanctions

Charge dynamics and "ferromagnetism" of A1-xLaxB6 (A=Ca and Sr)

Ferromagnetism has been reported recently in La-doped alkaline-earth hexaborides, A1-xLaxB6 (A=Ca, Sr, and Ba). We have performed the reflectivity, Hall resistivity, and magnetization measurements of A1-xLaxB6. The results indicate that A1-xLaxB6 can be regarded as a simple doped semimetal, with no signature of an excitonic state as suggested by several theories. It is also found that the surface of as-grown samples (10 micrometer in thickness) has a different electronic structure from a bulk one, and a fairly large number of paramagnetic moments are confined in this region. After eliminating these paramagnetic moments at the surface, we could not find any evidence of an intrinsic ferromagnetic moment in our samples, implying the possibility that the ferromagnetism of A1-xLaxB6 reported so far is neither intrinsic.Comment: 7 pages, 8 figure

Constraints on the geometry of the subducted Gorda Plate from converted phases generated by local earthquakes

Author Posting. © American Geophysical Union, 2021. This article is posted here by permission of American Geophysical Union for personal use, not for redistribution. The definitive version was published in Journal of Geophysical Research: Solid Earth 126(2), (2021): e2020JB019962, https://doi.org/10.1029/2020JB019962.The largest slip in great megathrust earthquakes often occurs in the 10–30 km depth range, yet seismic imaging of the material properties in this region has proven difficult. We utilize a dense onshore‐offshore passive seismic dataset from the southernmost Cascadia subduction zone where seismicity in the mantle of the subducted Gorda Plate produces S‐to‐P and P‐to‐S conversions generated within a few km of the plate interface. These conversions typically occur in the 10–20 km depth range at either the top or bottom of a ∼5 km thick layer with a high Vp/Vs that we infer to be primarily the subducted crust. We use their arrival times and amplitudes to infer the location of the top and bottom of the subducted crust as well as the velocity contrasts across these discontinuities. Comparing with both the Slab1.0 and the updated Slab2 interface models, the Slab2 model is generally consistent with the converted phases, while the Slab1.0 model is 1–2 km deeper in the 2–20 km depth range and ∼6–8 km too deep in the 10–20 km depth range between 40.25°N and 40.4°N. Comparing the amplitudes of the converted phases to synthetics for simplified velocity structures, the amplitude of the converted phases requires models containing a ∼5 km thick zone with at least a ∼10%–20% reduction in S wave velocity. Thus, the plate boundary is likely contained within or at the top of this low velocity zone, which potentially indicates a significant porosity and fluid content within the seismogenic zone.This work is funded by National Science Foundation Award Numbers EAR‐1520690.2021-07-2