Governance and measures for the ethical and social aspects of biobanks

Sosuke Iwae, Toru Masui

Research output: Contribution to journalArticle

Abstract

This paper provides an overview of measures regarding the ethical and social aspects of biobanks from the perspective of governance. A Biobanks is a system that manages samples taken from humans along with data of the sample donor (genetic information, information on medical records, information on lifestyle habits, etc.) in a centralized manner according to a set quality standard. In recent years, biobanks have become an essential research infrastructure, especially in the field of genome medical research and research concerning common diseases such as cancer and diabetes. Simultaneously, this indicates that biobanks are strongly linked to the realization of benefits that are highly public. For this reason, biobanks need to consider not only the promotion of medical research, but must also practice consideration for the ethical, social, and public aspects. In other words, biobanks need to be subject to governance. In this paper, three specific issues concerning the ethical and social aspects of biobank have been discussed: (i) issues regarding boroad or future consent, (ii) risks related to the handling of samples and data, and (iii) feedback on incidental findings. These are issues that accompany rapid advances in genome medicine and involve complex elements that cannot be completely resolved by the existing principles of life ethics and rules. For this reason, the parties managing biobanks are required to make an effort toward realizing an ethically and socially feasible operation of the biobank, with consideration paid not only to compliance but also to the reaction of research participants and society. Furthermore, there is an urgent need to establish a system of governance that enables organizational management with the wide perspective discussed here.

Original languageEnglish
Pages (from-to)493-497
Number of pages5
JournalJapanese Journal of Cancer and Chemotherapy
Volume39
Issue number4
Publication statusPublished - 2012 Apr
Externally publishedYes

Fingerprint

Ethics
Biomedical Research
Research
Genome
Incidental Findings
Compliance
Habits
Medical Records
Life Style
Medicine
Neoplasms

Keywords

  • Biobank
  • Ethical and social aspects
  • Governance
  • Publicness

ASJC Scopus subject areas

  • Cancer Research
  • Oncology

Cite this

Governance and measures for the ethical and social aspects of biobanks. / Iwae, Sosuke; Masui, Toru.

In: Japanese Journal of Cancer and Chemotherapy, Vol. 39, No. 4, 04.2012, p. 493-497.

Research output: Contribution to journalArticle

@article{d1843f04453f4af184f357a8011d329e,
title = "Governance and measures for the ethical and social aspects of biobanks",
abstract = "This paper provides an overview of measures regarding the ethical and social aspects of biobanks from the perspective of governance. A Biobanks is a system that manages samples taken from humans along with data of the sample donor (genetic information, information on medical records, information on lifestyle habits, etc.) in a centralized manner according to a set quality standard. In recent years, biobanks have become an essential research infrastructure, especially in the field of genome medical research and research concerning common diseases such as cancer and diabetes. Simultaneously, this indicates that biobanks are strongly linked to the realization of benefits that are highly public. For this reason, biobanks need to consider not only the promotion of medical research, but must also practice consideration for the ethical, social, and public aspects. In other words, biobanks need to be subject to governance. In this paper, three specific issues concerning the ethical and social aspects of biobank have been discussed: (i) issues regarding boroad or future consent, (ii) risks related to the handling of samples and data, and (iii) feedback on incidental findings. These are issues that accompany rapid advances in genome medicine and involve complex elements that cannot be completely resolved by the existing principles of life ethics and rules. For this reason, the parties managing biobanks are required to make an effort toward realizing an ethically and socially feasible operation of the biobank, with consideration paid not only to compliance but also to the reaction of research participants and society. Furthermore, there is an urgent need to establish a system of governance that enables organizational management with the wide perspective discussed here.",
keywords = "Biobank, Ethical and social aspects, Governance, Publicness",
author = "Sosuke Iwae and Toru Masui",
year = "2012",
month = "4",
language = "English",
volume = "39",
pages = "493--497",
journal = "Japanese Journal of Cancer and Chemotherapy",
issn = "0385-0684",
publisher = "Japanese Journal of Cancer and Chemotherapy Publishers Inc.",
number = "4",

}

TY - JOUR

T1 - Governance and measures for the ethical and social aspects of biobanks

AU - Iwae, Sosuke

AU - Masui, Toru

PY - 2012/4

Y1 - 2012/4

N2 - This paper provides an overview of measures regarding the ethical and social aspects of biobanks from the perspective of governance. A Biobanks is a system that manages samples taken from humans along with data of the sample donor (genetic information, information on medical records, information on lifestyle habits, etc.) in a centralized manner according to a set quality standard. In recent years, biobanks have become an essential research infrastructure, especially in the field of genome medical research and research concerning common diseases such as cancer and diabetes. Simultaneously, this indicates that biobanks are strongly linked to the realization of benefits that are highly public. For this reason, biobanks need to consider not only the promotion of medical research, but must also practice consideration for the ethical, social, and public aspects. In other words, biobanks need to be subject to governance. In this paper, three specific issues concerning the ethical and social aspects of biobank have been discussed: (i) issues regarding boroad or future consent, (ii) risks related to the handling of samples and data, and (iii) feedback on incidental findings. These are issues that accompany rapid advances in genome medicine and involve complex elements that cannot be completely resolved by the existing principles of life ethics and rules. For this reason, the parties managing biobanks are required to make an effort toward realizing an ethically and socially feasible operation of the biobank, with consideration paid not only to compliance but also to the reaction of research participants and society. Furthermore, there is an urgent need to establish a system of governance that enables organizational management with the wide perspective discussed here.

AB - This paper provides an overview of measures regarding the ethical and social aspects of biobanks from the perspective of governance. A Biobanks is a system that manages samples taken from humans along with data of the sample donor (genetic information, information on medical records, information on lifestyle habits, etc.) in a centralized manner according to a set quality standard. In recent years, biobanks have become an essential research infrastructure, especially in the field of genome medical research and research concerning common diseases such as cancer and diabetes. Simultaneously, this indicates that biobanks are strongly linked to the realization of benefits that are highly public. For this reason, biobanks need to consider not only the promotion of medical research, but must also practice consideration for the ethical, social, and public aspects. In other words, biobanks need to be subject to governance. In this paper, three specific issues concerning the ethical and social aspects of biobank have been discussed: (i) issues regarding boroad or future consent, (ii) risks related to the handling of samples and data, and (iii) feedback on incidental findings. These are issues that accompany rapid advances in genome medicine and involve complex elements that cannot be completely resolved by the existing principles of life ethics and rules. For this reason, the parties managing biobanks are required to make an effort toward realizing an ethically and socially feasible operation of the biobank, with consideration paid not only to compliance but also to the reaction of research participants and society. Furthermore, there is an urgent need to establish a system of governance that enables organizational management with the wide perspective discussed here.

KW - Biobank

KW - Ethical and social aspects

KW - Governance

KW - Publicness

UR - http://www.scopus.com/inward/record.url?scp=84862526996&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84862526996&partnerID=8YFLogxK

M3 - Article

C2 - 22504670

AN - SCOPUS:84862526996

VL - 39

SP - 493

EP - 497

JO - Japanese Journal of Cancer and Chemotherapy

JF - Japanese Journal of Cancer and Chemotherapy

SN - 0385-0684

IS - 4

ER -