An exploratory survey of professionals on the use of stored tissue samples from minors for genetic research

Hens, Kristien; Snoeck, Joke; Nys, Herman; Cassiman, Jean‐Jacques; Dierickx, Kris

doi:10.4238/vol9-2gmr781

Cited by 6 publications

(7 citation statements)

References 24 publications

(31 reference statements)

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“…Moreover, a survey among Belgian professionals has shown that for research on stored tissue samples from children, although there is still support for broad consent (47.6%), more professionals would support specific consent (79.4%). 25 And a survey of Helgesson et al 26 of parents with and without earlier research experience showed that parents thought research studying the possible prevention of disease and research exploring the impact and importance of environmental factors were the most important followed by research into the role of genetic factors behind disease development. The least important research was deemed to be on medical substances and special groups of children.…”

Section: Broad Versus Specific Consent In Pediatric Biobanksmentioning

confidence: 99%

Children, biobanks and the scope of parental consent

et al. 2011

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The use of stored tissue samples from children for genetic research raises specific ethical questions that are not all analogous to those raised when adult participants are concerned. These include issues with regard to consent, as it is typically a parent who consents to the use of samples from children. In this paper, we discuss the scope of parental consent. This scope has a temporal dimension and one related to the content of consent. It is not questioned that the temporal scope of parental consent is limited and that young adults have the right to decide on the fate of their samples when they reach the age of maturity. With regard to the content of consent, the question remains whether parents are allowed to give full broad consent to any possible future research on the samples of their children. We argue that they should not be allowed to do so, based on two premises. First, it is generally acknowledged that children have a right to express their own values and that they should be given the opportunity to develop their own autonomy as they grow older. Second, research and science are not completely value-free and some types of research may be more sensitive than other types. Children should be given the opportunity to express their values also in this respect.

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Section: Broad Versus Specific Consent In Pediatric Biobanksmentioning

confidence: 99%

Children, biobanks and the scope of parental consent

et al. 2011

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“…Selected topics were identified by referring to the international literature addressing ethical issues pertaining to the collection, storage, and use of biospecimens and data from children, such as proxy consent, minor assent, privacy protection, and return of results. 6,9,17 To finalize the questionnaire, 9 structured interviews were conducted with health professionals involved in biobanking processes. Based on collected data, the questionnaire was revised.…”

Section: Questionnaire Design and Finalizationmentioning

confidence: 99%

“…8,9 Theoretical papers have reviewed ethical positions and/or guidelines concerning the use of pediatric samples and related information for disease or populationbased studies, [10][11][12] whereas empirical investigations have focused on the opinions and attitudes of parents and children, [13][14][15] health professionals, 16,17 and the general public [18][19][20] toward the inclusion of minors in research using their biomaterials and data.…”

Section: Introductionmentioning

confidence: 99%

Pediatric Biobanking: A Pilot Qualitative Survey of Practices, Rules, and Researcher Opinions in Ten European Countries

Salvaterra

Giorda

Bassi

et al. 2012

Biopreservation and Biobanking

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Ethical, legal, and social issues related to the collection, storage, and use of biospecimens and data derived from children raise critical concerns in the international debate. So far, a number of studies have considered a variety of the individual issues crucial to pediatric biobanking such as decision making, privacy protection, minor recontact, and research withdrawal by focusing on theoretical or empirical perspectives. Our research attempted to analyze such issues in a comprehensive manner by exploring practices, rules, and researcher opinions regarding proxy consent, minor assent, specimens and data handling, and return of results as faced in 10 European countries. Because of the lack of comparative analyses of these topics, a pilot study was designed. Following a qualitative methodology, a questionnaire draft mostly including open-ended queries was developed, tested, and sent by e-mail to a selected group of researchers dealing with pediatric biobanking (n=57). Returned questionnaires (n=31) highlighted that the collection, storage, distribution, and use of biospecimens and data from children were widely practiced in the contacted laboratories. In most cases, pediatric biobanking was subjected to national or local regulations covering adult biobanks (n=26). Informed consent was generally given by parents or legal representatives (n=17). Children's opinions were frequently sought and taken into account (n=16). However, minors were usually not recontacted at the age of maturity to express their own choices (n=26). Based on the collected data, dedicated recommendations are needed to govern unique ethical and regulatory issues surrounding pediatric biobanking.

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“…However, in a focus group study by Hens et al it was found that teenagers often quoted higher age thresholds, around 16 years of age (Hens et al 2011d). And in a survey of professionals by the same authors, that age range was quoted as well (Hens et al 2010b). However, empirical data from Williamson et al show that children enrolled in a longitudinal cohort study thought of consent as an ongoing process in relation between themselves and their parents.…”

Section: Consentmentioning

confidence: 99%

Children and biobanks: a review of the ethical and legal discussion

2011

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The use of tissue samples from children is vital to genetic research. Collections of such tissue, in so-called biobanks, can take the form of large-scale prospective cohort studies or disease-specific studies using tissue of children with that specific disease. Collections of samples gathered in a diagnostics context, such as blood spot cards, can also be used for genetic research. Research on stored tissue samples from children poses ethical questions that are different from those posed by the use of samples from adults. Also, the ethical questions raised by the participation of children in biobanks are not analogous to those raised by the participation of children in clinical trials. In this review we first give an overview of the international ethical guidelines and legal regulations concerning biobanking and minors. Next, we review the different themes that occur in the ethical literature on this subject. Specifically we focus on questions of risk and benefit, consent and assent and the return of individual results. We also discuss the concept of solidarity, which is a relatively new concept in the context of children and biomedical research. To conclude, we discuss the gaps and questions raised by the review.

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An exploratory survey of professionals on the use of stored tissue samples from minors for genetic research

Cited by 6 publications

References 24 publications

Children, biobanks and the scope of parental consent

Children, biobanks and the scope of parental consent

Pediatric Biobanking: A Pilot Qualitative Survey of Practices, Rules, and Researcher Opinions in Ten European Countries

Children and biobanks: a review of the ethical and legal discussion

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