Pediatric biobanking: which protocols for children?
To date, human biobanking has mainly concentrated on the
collection, storage and research use of biological samples
(as, for example, blood, tissues, cell lines, Dna) and associated
data recruited from adult individuals (disease biobanks) or
population groups (population biobanks). Pediatric biobanks
as well as other types of collections and repositories of
biomaterials (as, for example, neuropsychiatric biobanks)
remained on the ground of the international debate for a long
time.
Only recently the ethical, legal and societal issues (the
so-called “ELSi”) associated to collections, archives
and biobanks of biospecimens and data from children have become
to be considered by influent scholars (Gurwitz, Knoppers,
Science, 2009) as aspects requiring a peculiar attention within
a technical, managerial, ethical and legal perspective
In this perspective, the Department of Bioethics of the Clinical
and Research Institute “E. Medea”- Associazione
La Nostra Famiglia is promoting a qualitative pilot study
exploring procedures, practices and researchers’ opinions
on pediatric biobanking and research use of biomaterials and
associated data from children. The principal aim of this exploration
is collecting relevant data for the development of a policy
dedicated to the ELSi of pediatric colelctions and banks.
The questionnaire has been sent to clinicians and researchers
working in the field of pediatric biobanking in ten European
countries, including: Denmark, France, Germany, England, Ireland,
Italy, Netherlands, Spain, Switzerland, Hungary. Based on
data collected through the survey, a Workshop focused on the
discussion of gathered information, relating to practices,
procedures and researcher opinions has been hold at the Scientific
Institute “Medea” the last October, in order to
develop a Recommendation regulating the key ethical, legal
and scoial issues related to pediatric biobanking. A research
group, called “Pediatric Biobank ELSI Working Group”,
including researchers who have took part in the survey as
well as researchers interested in the topic, is presently
working on the development of this policy. People interested
may access to the Group via: www.linkedin.
com, by submitting a specific request to join the PEdiatric
Biobanking ELSI group.
For further information related to the project, please e-mail
to:
19-Gen-2016
- © I.R.C.C.S. Medea
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