Data storage and DNA banking for biomedical research: technical, social and ethical issues

Aymé, Ségolène; Bobrow, Martin; Cassiman, Jean‐Jacques; Evers‐Kiebooms, Gerry; Farndon, Peter; Kääriäinen, Helena; Kristoffersson, Ulf; Pembrey, M. S.; Raeburn, Sandy; Schmidtke, Jörg; Kate, Leo ten; Tranebjærg, Lisbeth

doi:10.1038/sj.ejhg.5201107

Cited by 17 publications

(2 citation statements)

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“…Concerning the samples stored in the past without informed consent, in accordance with ESHG (European Society of Human Genetics) document [12], they are used in an identifiable manner guaranteeing confidentiality according to the rules of professional deontology and existing regulations, without the obligation to render the samples anonymous, in order to be able to make any diagnosis and/or important result available to biological patients’ family members.…”

Section: Ethical Legal and Social Issues (Elsi)mentioning

confidence: 99%

Telethon Network of Genetic Biobanks: a key service for diagnosis and research on rare diseases

Filocamo

Baldo

Goldwurm

et al. 2013

Orphanet J Rare Dis

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Several examples have always illustrated how access to large numbers of biospecimens and associated data plays a pivotal role in the identification of disease genes and the development of pharmaceuticals. Hence, allowing researchers to access to significant numbers of quality samples and data, genetic biobanks are a powerful tool in basic, translational and clinical research into rare diseases. Recently demand for well-annotated and properly-preserved specimens is growing at a high rate, and is expected to grow for years to come. The best effective solution to this issue is to enhance the potentialities of well-managed biobanks by building a network.Here we report a 5-year experience of the Telethon Network of Genetic Biobanks (TNGB), a non-profit association of Italian repositories created in 2008 to form a virtually unique catalogue of biospecimens and associated data, which presently lists more than 750 rare genetic defects. The process of TNGB harmonisation has been mainly achieved through the adoption of a unique, centrally coordinated, IT infrastructure, which has enabled (i) standardisation of all the TNGB procedures and activities; (ii) creation of an updated TNGB online catalogue, based on minimal data set and controlled terminologies; (iii) sample access policy managed via a shared request control panel at web portal. TNGB has been engaged in disseminating information on its services into both scientific/biomedical - national and international - contexts, as well as associations of patients and families. Indeed, during the last 5-years national and international scientists extensively used the TNGB with different purposes resulting in more than 250 scientific publications. In addition, since its inception the TNGB is an associated member of the Biobanking and Biomolecular Resources Research Infrastructure and recently joined the EuroBioBank network. Moreover, the involvement of patients and families, leading to the formalization of various agreements between TNGB and Patients’ Associations, has demonstrated how promoting Biobank services can be instrumental in gaining a critical mass of samples essential for research, as well as, raising awareness, trust and interest of the general public in Biobanks. This article focuses on some fundamental aspects of networking and demonstrates how the translational research benefits from a sustained infrastructure.

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Section: Ethical Legal and Social Issues (Elsi)mentioning

confidence: 99%

Telethon Network of Genetic Biobanks: a key service for diagnosis and research on rare diseases

Filocamo

Baldo

Goldwurm

et al. 2013

Orphanet J Rare Dis

View full text Add to dashboard Cite

show abstract

“…The informed consent taken at that time did not contemplate genetic studies. Many commentators criticized the plan to set up biobanks arguing that a conventional readings of key research ethics governance instruments (Council for International Organizations of Medical Sciences 2002; World Medical Association 2013) prohibited the use of stored samples when intended uses were not foreseen at the time participants had given consent unless every participant was recontacted and agreed to the new uses (Ayme 2003). Unfortunately, recontacting is not a viable option because many of the participants have likely died or moved or, if found, could decline to consent to the new uses.…”

Section: The Role Of Experts In Solving Regulatory Obstacles and Negamentioning

confidence: 99%

Population Biobanks’ Governance: A Case Study of Knowledge Commons

Boggio¹

2017

Governing Medical Knowledge Commons

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Queen Christina’s moral claim on the living: Justification of a tenacious moral intuition

Masterton¹,

Helgesson²,

Höglund³

et al. 2007

Med Health Care and Philos

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In the long-running debate on the interest of the dead, Joan C. Callahan argues against such interests and although Søren Holm for practical reasons is prepared to consider posthumous interests, he does not see any moral basis to support such interests. He argues that the whole question is irresolvable, yet finds privacy interests where Tutankhamen is concerned. Callahan argues that there can be reasons to hold on to the fiction that there are posthumous interests, namely if it is comforting for the living and instrumental for society. Thus, despite arguing against the position that the dead have any interests or for any moral basis for such interests, these "interests" are still taken into consideration in the end. This shows the unsatisfactory basis of their positions and indicates the tenacity of the moral intuition that the dead can have moral claims on the living. One example of a posthumous interest is the interest in one's good name. Here we argue that it is an interest of moral significance. This implies that if individuals restrict use of their sample when they are still alive, those restrictions apply after their death. Further, it implies that one should be concerned with the reputation of historic persons. Research that defeats these interests calls for justification. We have suggested two lines of thinking along which such a discussion could go: investigating the truth-value of the good name and the relevance of bringing it into possible disrepute.

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Data storage and DNA banking for biomedical research: technical, social and ethical issues

Cited by 17 publications

References 0 publications

Telethon Network of Genetic Biobanks: a key service for diagnosis and research on rare diseases

Telethon Network of Genetic Biobanks: a key service for diagnosis and research on rare diseases

Population Biobanks’ Governance: A Case Study of Knowledge Commons

Queen Christina’s moral claim on the living: Justification of a tenacious moral intuition

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