BackgroundBiobanking biospecimens and consent are common practice in paediatric research. We need to explore children and young people’s (CYP) knowledge and perspectives around the use of and consent to biobanking. This will ensure meaningful informed consent can be obtained and improve current consent procedures.MethodsWe designed a survey, in co-production with CYP, collecting demographic data, views on biobanking, and consent using three scenarios: 1) prospective consent, 2) deferred consent, and 3) reconsent and assent at age of capacity. The survey was disseminated (...) via the Young Person’s Advisory Group North England (YPAGne) and participating CYP’s secondary schools. Data were analysed using a qualitative thematic approach by three independent reviewers (including CYP) to identify common themes. Data triangulation occurred independently by a fourth reviewer.ResultsOne hundred two CYP completed the survey. Most were between 16–18 years (63.7%, N = 65) and female (66.7%, N = 68). 72.3% had no prior knowledge of biobanking (N = 73).Acceptability of prospective consent for biobanking was high (91.2%, N = 93) with common themes: ‘altruism’, ‘potential benefits outweigh individual risk’, 'frugality', and ‘(in)convenience’.Deferred consent was also deemed acceptable in the large majority (84.3%, N = 86), with common themes: ‘altruism’, ‘body integrity’ and ‘sample frugality’. 76.5% preferred to reconsent when cognitively mature enough to give assent (N = 78), even if parental consent was previously in place. 79.2% wanted to be informed if their biobanked biospecimen is reused (N = 80).ConclusionProspective and deferred consent acceptability for biobanking is high among CYP in the UK. Altruism, frugality, body integrity, and privacy are the most important themes. Clear communication and justification are paramount to obtain consent. Any CYP with capacity should be part of the consenting procedure, if possible. (shrink)

Background Over the last few decades biobanks have been recognised as institutions that may revolutionise biomedical research and the development of personalised medicine. Poland, however, still lacks clear regulations regarding the running of biobanks and the conducting of biomedical research. While the awareness of the general public regarding biobanks is low, healthcare professions and medical students also lack basic knowledge regarding biobanks, and such ignorance may affect their support for biobanks. Methods This study is aimed at assessing the knowledge and (...) attitudes of future healthcare professionals towards the donation of human biological material for research purposes and is based on a sample of 865 Polish medical students at Poznań University of Medical Sciences. Results This research has shown that the awareness of medical students’ regarding biobanks is low. It has also shown that while the majority of future healthcare professionals enrolled in this study supported the idea of biobank research and declared themselves willing to donate, still many students felt ambivalent about the biobanking of human biological material for research purposes and expressed concerns over biobanking research. While the primarily motivation to participate in biobank research was the desire to help advance science and to develop innovative therapies, the most common reason for a refusal was the fear that the government, insurance companies or employers, might have access to the samples. Concerns over unethical use of samples and data safety were also prevalent. More than half of students opted for a study-specific model of consent and only a few opted for broad consent. Conclusions This research suggests that a lack of knowledge about biobanks, their role and activities may affect medical students’ support for biobanks and their active participation in the collection and management of biospecimens for research purposes. Since in the future medical, nursing and pharmacy students will be involved in the collection, storage, testing and analysis of biospecimens from their patients, medical students in all professional fields should be trained regarding the concept, purposes and operational procedures of biobanks, as well as the ethical, legal and social implications of biobank research. (shrink)

In Western countries, a social trend toward delaying childbearing has been observed in women of reproductive age for the last two decades. This delay is due to different factors related to lifestyle, such as the development of a professional career or the absence of the right partner. As a consequence, women who defer childbearing may find themselves affected by age-related infertility when they decide to conceive. Fertility preservation techniques are, therefore, proposed as a solution for these women. Among all possible (...) solutions, social freezing is an alternative strongly discussed from a scientific, social and ethical point of view.A survey among 930 female students at the University of Padova (Italy) investigated their knowledge and attitudes on social egg freezing and their potential intentions regarding this procedure. To our knowledge, this is the first study to examine the level of awareness of age-related infertility in Italian young women and their attitudes regarding acceptable indications for elective oocyte freezing, their potential personal use, the circumstances in which they would then decide to use cryopreserved eggs, and their attitudes towards cost coverage and oocyte donation.Data collected in this study revealed some important points about young women and their knowledge about social oocyte freezing in Italy as compared to other European countries and the United States.Overall, 34.3% of the students reported having heard about the possibility of oocyte cryopreservation for non-medical reasons and being aware of the meaning of this procedure; only 19.5% were in favour of social egg freezing and 48.4% thought that the cost for this procedure should be borne entirely by the woman herself. Regarding egg donation, the majority of students (64.9%) would not accept donating their eggs to a known woman or couple and 42.5% would instead accept donating to a biobank.Our study shows that young Italian women are significantly less aware of age-related decline in fertility and the possibility of using social egg freezing compared to their similarly situated counterparts in other Western countries. (shrink)