Legal and Quasi-Legal Documents on Biobanks and Genetic Research
International-Regional-National Level
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Organization |
Organisation for Economic Co-operation and Development (OECD) |
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Title |
OECD Recommendation on Human Biobanks and Genetic Research Databases fre |
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Text adopted at (City, Date) |
Paris - France - 2009-10-22 |
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URL |
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Key Words |
Access Info/Material - Biobank - Commercialization - Community/Population - Confidentiality - Consent - Data - Databases - DNA - Donor - Ethical Review - Governance - Ownership - Population Genetics - Privacy - Research - Storage - Tissue |
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Organization |
Council for International Organization of Medical Sciences (CIOMS) |
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Title |
International Ethical Guidelines for Epidemiological Studies |
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Text adopted at (City, Date) |
Geneva - Switzerland - 2008-02-01 |
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URL |
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Key Words |
Assent/Dissent - Confidentiality - Consent - Consultation/Collaboration - Ethical Review - Governance - Minor/Child - Population Genetics - Recruitment - Research - Right of Withdrawal - Socio-Economic Aspects - Waiver of Consent - Woman/Maternity |
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Organization |
Organisation for Economic Co-operation and Development (OECD) |
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Title |
OECD Principles for Access to Research Data from Public Funding |
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Text adopted at (Country, Date) |
France - 2007-04-01 |
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URL |
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Key Words |
Access Info/Material - Benefit Sharing - Commercialization - Confidentiality - Databases - Intellectual Property - Open Source - Ownership - Privacy - Public Health - Research - Researcher - State |
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Organization |
Organisation for Economic Co-operation and Development (OECD) |
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Title |
Guidance for the Operation of Biological Resource Centres Part 4: Human-Derived Material |
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Text adopted at (City, Date) |
Paris - France - 2005-01-01 |
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Key Words |
Access Info/Material - Benefit Sharing - Biobank - Commercialization - Communication of Results - Competence - Confidentiality - Consent - Data - Databases - Dignity - DNA - Ethics Review Board - Intellectual Property - Ownership - Research - Respect for Human Life - Right not to Know - Storage |
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Organization |
International HapMap Project |
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Title |
Guidelines for Referring to the HapMap Populations in Publications and Presentations fre |
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Text adopted at (Country, Date) |
United States - 2004-07-30 |
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URL |
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Key Words |
Community/Population - Confidentiality - Data - Databases - Discrimination - DNA - Population Genetics - Privacy - Research |
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Organization |
ECOSOC - United Nations Economic and Social Council |
|
Title |
Resolution 2004/9: Genetic Privacy and Non-Discrimination fre spa |
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Text adopted at (City, Date) |
Geneva - United States - 2004-07-21 |
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URL |
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Key Words |
Community/Population - Confidentiality - Consent - Data - Databases - Developing Country - Discrimination - DNA - Educational Institution - Employer/Employment - Genetic Testing - Insurer/Insurance - Population Genetics - Privacy - Professional - Research - Researcher - State - Storage - Third Party |
|
Organization |
Organisation for Economic Co-operation and Development (OECD) |
|
Title |
Guidance for the Operation of Biological Research Centres Part 1: General Requirements for all BRCs |
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Text adopted at (City, Date) |
Paris - France - 2004-01-01 |
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URL |
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Key Words |
Biobank - Communication of Results - Confidentiality - Governance - Ownership - Researcher - State - Storage |
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Organization |
UNESCO - International Bioethics Committee (IBC) |
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Title |
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Text adopted at (City, Date) |
Paris - France - 2003-10-16 |
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URL |
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Key Words |
Access Info/Material - Assent/Dissent - Behavioral Genetics - Benefit Sharing - Biobank - Confidentiality - Consent - Counseling (general) - Data - Dignity - Discrimination - DNA - Ethical Review - Ethics Review Board - Family - Genetic Screening - Genetic Testing - Incompetent Adult - Minor/Child - Population Genetics - Privacy - Public Health - Research - Right not to Know - Storage - Waiver of Consent |
|
Organization |
UNESCO - International Bioethics Committee (IBC) |
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Title |
Report of the IBC on the Possibility of Elaborating a Universal Instrument on Bioethics fre |
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Text adopted at (City, Date) |
Paris - France - 2003-06-13 |
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URL |
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Key Words |
Behavioral Genetics - Community/Population - Confidentiality - Developing Country - Discrimination - DNA - Embryo - Gene Therapy - Genetic Engineering - Intellectual Property - Justice - Liability - Population Genetics - Stem Cell - Tissue |
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Organization |
World Health Organization (WHO) |
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Title |
Genetic Databases Assessing the Benefits and the Impact on Human and Patient Rights |
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Text adopted at (City, Date) |
Geneva - Switzerland - 2003-01-01 |
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URL |
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Key Words |
Benefit Sharing - Biobank - Commercialization - Communication of Results - Community/Population - Compensation for Participation - Confidentiality - Consent - Data - Databases - Discrimination - DNA - Duty to recontact - Ethical Review - Governance - Patient/Participant/Individual - Population Genetics - Public Health - Recruitment - Research - Right of Withdrawal - Storage - Tissue - Waiver of Consent |
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Organization |
Human Genome Organization (HUGO) |
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Title |
Statement on Human Genomic Databases |
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Text adopted at (City, Date) |
London - United Kingdom - 2002-12-01 |
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URL |
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Key Words |
Benefit Sharing - Confidentiality - Data - Databases - Discrimination - Socio-Economic Aspects |
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Organization |
Council for International Organization of Medical Sciences (CIOMS) |
|
Title |
International Ethical Guidelines for Biomedical Research Involving Human Subjects fre spa |
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Text adopted at (City, Date) |
Geneva - Switzerland - 2002-11-01 |
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URL |
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Key Words |
Access Info/Material - Adult - Assent/Dissent - Communication of Results - Confidentiality - Consent - Data - Disability - Discrimination - DNA - Ethical Review - Incompetent Adult - Minor/Child - Patient/Participant/Individual - Population Genetics - Recruitment - Research |
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Organization |
World Medical Association (WMA) |
|
Title |
Declaration on Ethical Considerations Regarding Health Databases fre spa |
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Text adopted at (City, Date) |
Washington - France - 2002-10-06 |
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URL |
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Key Words |
Access Info/Material - Biobank - Confidentiality - Consent - Data - Databases - Ethical Review - Governance - Recruitment - Right of Withdrawal - Storage |
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Organization |
World Alliance of Organizations for the Prevention of Birth Defects |
|
Title |
Cape Town Declaration |
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Text adopted at (City, Date) |
Cape Town - United States - 2002-08-01 |
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URL |
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Key Words |
Autonomy - Benefit Sharing - Community/Population - Consultation/Collaboration - Education - Equity - Genetic Testing - Liability - Population Genetics - Preconception - Prenatal - Professional - Respect for Human Life |
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Organization |
World Health Organization (WHO) |
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Title |
Genomics and World Health fre |
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Text adopted at (City, Date) |
Geneva - Switzerland - 2002-04-01 |
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URL |
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Key Words |
Benefit Sharing - Biobank - Commercialization - Community/Population - Competence - Confidentiality - Consent - Counseling (general) - Data - Databases - Developing Country - Discrimination - DNA - Education - Educational Institution - Equity - Genetic Services - Intellectual Property - Patents - Pharmacogenomics - Population Genetics - Public Health - Research - Researcher |
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Organization |
GlaxoSmithKline |
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Title |
The Science of Genetics and Modern Medicine |
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Text adopted at (City, Date) |
Brussels - United Kingdom - 2001-04-26 |
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URL |
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Key Words |
Confidentiality - Consent - Data - Databases - DNA - Genetic Testing - Pharmacogenomics - Population Genetics - Privacy - Research |
|
Organization |
Human Genome Organization (HUGO) |
|
Title |
Statement on Benefit-Sharing |
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Text adopted at (Country, Date) |
United Kingdom - 2000-04-09 |
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URL |
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Key Words |
Benefit Sharing - Biobank - Data - Databases - DNA - Population Genetics - Research |
|
Organization |
Human Genome Organization (HUGO) |
|
Title |
Statement on the Patenting of DNA Sequences - In Particular Response to the European Biotechnology Directive |
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Text adopted at (Country, Date) |
United Kingdom - 2000-04-01 |
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URL |
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Key Words |
Biobank - Cancer - Commercialization - Consent - DNA - Embryo - Germline Therapy - Patents - Professional - Research - Researcher - Therapeutic Cloning - Tissue |
|
Organization |
World Health Organization (WHO) |
|
Title |
Operational Guidelines for Ethics Committees that Review Biomedical Research |
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Text adopted at (City, Date) |
Geneva - Switzerland - 2000-02-21 |
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URL |
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Key Words |
Access Info/Material - Adult - Autonomy - Communication of Results - Community/Population - Confidentiality - Consent - Consultation/Collaboration - Education - Ethics Review Board - Population Genetics - Professional - Research - Respect for Human Life - Right of Withdrawal - Third Party |
|
Organization |
World Health Organization (WHO) |
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Title |
Guideline for Obtaining Informed Consent for the Procurement and Use of Human Tissues, Cells and Fluids in Research |
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Text adopted at (Country, Date) |
Switzerland - 2000-01-01 |
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URL |
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Key Words |
Assent/Dissent - Biobank - Consent - Deceased - Disability - DNA - Donor - Foetus - Incompetent Adult - Minor/Child - Newborn - Research - Storage - Tissue |
|
Organization |
World Alliance of Organizations for the Prevention of Birth Defects |
|
Title |
January 1999, The Hague, Netherlands |
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Text adopted at (City, Date) |
The Hague - United States - 1999-01-01 |
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Key Words |
Community/Population - Consultation/Collaboration - Counseling (general) - Developing Country - Genetic Testing - Liability - Population Genetics - Prenatal |
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Organization |
International Society for Pharmacoepidemiology (ISPE) |
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Title |
Data Privacy, Medical Record Confidentiality, and Research in the Interest of Public Health |
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Text adopted at (City, Date) |
Washington, DC - United States - 1998-08-19 |
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URL |
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Key Words |
Access Info/Material - Autonomy - Benefit Sharing - Biobank - Communication of Results - Community/Population - Confidentiality - Consent - Consultation/Collaboration - DNA - Ethics Review Board - Follow-up - Liability - Patient/Participant/Individual - Population Genetics - Privacy - Public Health - Researcher - Respect for Human Life - Storage - Third Party |
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Organization |
Human Genome Organization (HUGO) |
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Title |
Statement on DNA Sampling: Control and Access |
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Text adopted at (City, Date) |
London - United Kingdom - 1998-02-01 |
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URL |
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Key Words |
Access Info/Material - Biobank - Confidentiality - Consent - DNA - Family - Researcher - Right of Withdrawal - Storage - Third Party |
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Organization |
Indigenous Peoples Council on Biocolonialism (IPCB) |
|
Title |
A Resolution to Oppose the Human Genome Diversity Project and Condemning Unethical Genetic Research on Indigenous Peoples |
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Text adopted at (City, Date) |
Wadsworth - United States - 1998-01-15 |
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URL |
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Key Words |
Commercialization - Community/Population - Consent - Deceased - Genetic Testing - Patents - Population Genetics - Research |
|
Organization |
World Health Organization (WHO) |
|
Title |
Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services |
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Text adopted at (Country, Date) |
Switzerland - 1997-12-15 |
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URL |
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Key Words |
Access Info/Material - Adult - Autonomy - Biobank - Communication of Results - Community/Population - Competence - Confidentiality - Consent - Consultation/Collaboration - Counseling (general) - Discrimination - DNA - Duty to recontact - Duty to Warn - Education - Employer/Employment - Equity - Family - Follow-up - Genetic Screening - Genetic Testing - Insurer/Insurance - Minor/Child - Newborn - Patient/Participant/Individual - Population Genetics - Preconception - Prenatal - Professional - Recruitment - Research - Researcher - Respect for Human Life - Right not to Know - Right of Withdrawal - Socio-Economic Aspects - State - Storage - Third Party |
|
Organization |
Indigenous Peoples Council on Biocolonialism (IPCB) |
|
Title |
Ukupseni Declaration, Kuna Yala on the Human Genome Diversity Project (HGDP) |
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Text adopted at (City, Date) |
Panama - United States - 1997-11-13 |
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URL |
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Key Words |
Autonomy - Biobank - Commercialization - Community/Population - DNA - Intellectual Property - Patents - Population Genetics - Respect for Human Life |
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Organization |
UNESCO - International Bioethics Committee (IBC) |
|
Title |
Universal Declaration on the Human Genome and Human Rights fre spa |
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Text adopted at (City, Date) |
Paris - France - 1997-11-11 |
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URL |
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Key Words |
Access Info/Material - Assent/Dissent - Autonomy - Biobank - Commercialization - Community/Population - Compensation for Participation - Competence - Confidentiality - Consent - Disability - Discrimination - DNA - Education - Equity - Ethics Review Board - Germline Therapy - Incompetent Adult - Intellectual Property - Liability - Minor/Child - Professional - Public Health - Reproductive Cloning - Research - Researcher - Respect for Human Life - Socio-Economic Aspects - Somatic Therapy - Storage - Therapeutic Cloning |
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Organization |
Indigenous Peoples Council on Biocolonialism (IPCB) |
|
Title |
The "Heart of the Peoples" Declaration |
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|
Text adopted at (City, Date) |
Fort Belknap Reservation - United States - 1997-08-07 |
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URL |
||
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Key Words |
Autonomy - Biobank - Commercialization - Community/Population - Consent - DNA - Genetic Testing - Patents - Population Genetics - Research - Respect for Human Life |
|
Organization |
Human Genome Organization (HUGO) |
|
Title |
Statement on the Principled Conduct of Genetics Research |
|
Text adopted at (City, Date) |
London - United Kingdom - 1996-03-21 |
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URL |
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Key Words |
Access Info/Material - Benefit Sharing - Biobank - Communication of Results - Community/Population - Compensation for Participation - Competence - Confidentiality - Consent - Counseling (general) - DNA - Ethics Review Board - Family - Liability - Population Genetics - Recruitment - Researcher - Storage |
|
Organization |
Indigenous Peoples Council on Biocolonialism (IPCB) |
|
Title |
Declaration of Indigenous Peoples of the Western Hemisphere regarding the Human Genome Project |
|
Text adopted at (City, Date) |
N/A - United States - 1996-01-01 |
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URL |
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Key Words |
Autonomy - Benefit Sharing - Biobank - Commercialization - Community/Population - Consent - DNA - Equity - Intellectual Property - Liability - Patents - Population Genetics - Respect for Human Life - Right of Withdrawal - Socio-Economic Aspects |
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Organization |
World Health Organization (WHO) |
|
Title |
Control of Hereditary Diseases - Report of a WHO Scientific Group |
|
Text adopted at (City, Date) |
Geneva - Switzerland - 1996-01-01 |
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URL |
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Key Words |
Adult - Autonomy - Benefit Sharing - Biobank - Commercialization - Community/Population - Competence - Confidentiality - Consent - Counseling (general) - Criteria - Discrimination - DNA - Education - Equity - Genetic Screening - Genetic Testing - Liability - Minor/Child - Newborn - Patents - Preconception - Prenatal - Professional - Respect for Human Life - Somatic Therapy - Storage |
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Organization |
UNESCO - International Bioethics Committee (IBC) |
|
Title |
Bioethics and Human Population Genetics Research fre |
|
Text adopted at (City, Date) |
Ibaraki - France - 1995-11-15 |
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URL |
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Key Words |
Autonomy - Benefit Sharing - Biobank - Commercialization - Communication of Results - Community/Population - Confidentiality - Consent - Consultation/Collaboration - Discrimination - Diversity - DNA - Education - Ethics Review Board - Eugenics - Patents - Population Genetics - Privacy - Professional - Respect for Human Life - Socio-Economic Aspects - Storage |
|
Organization |
Council for International Organization of Medical Sciences (CIOMS) |
|
Title |
International Guidelines for Ethical Review of Epidemiological Studies |
|
Text adopted at (City, Date) |
Geneva - Switzerland - 1991-01-01 |
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URL |
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Key Words |
Access Info/Material - Adult - Autonomy - Biobank - Communication of Results - Community/Population - Competence - Confidentiality - Consent - Diversity - DNA - Equity - Ethics Review Board - Integrity - Liability - Patient/Participant/Individual - Population Genetics - Public Health - Research - Respect for Human Life - Right not to Know - Socio-Economic Aspects - Storage - Third Party |
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|
REGIONAL |
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Organization |
European Science Foundation (ESF) |
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Title |
Population Surveys and Biobanking |
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Text adopted at (City, Date) |
Strasbourg - France - 2008-05-26 |
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URL |
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Key Words |
Access Info/Material - Benefit Sharing - Biobank - Data - DNA - Patient/Participant/Individual - Population Genetics - Storage |
|
Organization |
European Society of Human Genetics (ESHG) |
|
Title |
Patenting and Licensing in Genetic Testing - Recommendations |
|
Text adopted at (City, Date) |
Vienna - Austria - 2008-04-01 |
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URL |
|
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Key Words |
Beneficence - Community/Population - Genetic Testing - Intellectual Property - Patents |
|
Organization |
Council of Europe |
|
Title |
Recommendation Rec(2006)4 of the Committee of Ministers to member states on research on biological materials of human origin fre |
|
Text adopted at (City, Date) |
Strasbourg - France - 2006-03-15 |
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URL |
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Key Words |
Access Info/Material - Biobank - Commercialization - Communication of Results - Consent - Data - Databases - Deceased - Dignity - Discrimination - DNA - Duty to recontact - Ethical Review - Family - Governance - Integrity - Patient/Participant/Individual - Population Genetics - Research - Right of Withdrawal - Tissue |
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Organization |
European Commission |
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Title |
Commission Directive 2006/17/EC of 8 February 2006 implementing Directive 2004/23/EC of the European Parliament and of the Council as regards certain technical requirements for the donation, procurement and testing of human tissues and cells |
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Text adopted at (Country, Date) |
Belgium - 2006-02-09 |
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URL |
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Key Words |
Consent - Data - Databases - Deceased - Donor - Man/Paternity - Research - Stem Cell - Tissue - Waiver of Consent - Woman/Maternity |
|
Organization |
European Commission - The Independent Expert Group |
|
Title |
Ethical, Legal and Social Aspects of Genetic Testing: Research, Development and Clinical Applications |
|
Text adopted at (City, Date) |
Brussels - Belgium - 2004-05-01 |
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URL |
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Key Words |
Biobank - Carrier Status - Communication of Results - Community/Population - Confidentiality - Conflict of Interest - Consent - Counseling (general) - Data - Databases - Deceased - DNA - Duty to Warn - Education - Employer/Employment - Ethics Review Board - Family - Foetus - Genetic Screening - Genetic Services - Genetic Testing - Insurer/Insurance - Minor/Child - Patient/Participant/Individual - Pharmacogenomics - Population Genetics - Prenatal - Privacy - Professional - Psychosocial Aspects - Public Health - Research - Right not to Know - Socio-Economic Aspects - State - Tissue |
|
Organization |
Council of the European UnionEuropean Parliament (EP) |
|
Title |
Directive 2004/23/EC of the European Parliament and of the Council of 31 March 2004 on Setting Standards of Quality and Safety for the Donation, Procurement, Testing, Processing, Preservation, Storage and Distribution of Human Tissues and Cells |
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Text adopted at (City, Date) |
Estrasburgo - Belgium - 2004-03-31 |
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URL |
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Key Words |
Biobank - Confidentiality - Consent - Data - Databases - Donor - Family - State - Stem Cell - Storage - Third Party - Tissue |
|
Organization |
European Commission - The Independent Expert Group |
|
Title |
The 25 Recommendations on the Ethical, Legal and Social Implications of Genetic Testing fre spa |
|
Text adopted at (City, Date) |
Brussels - Belgium - 2004-01-01 |
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URL |
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Key Words |
Assent/Dissent - Biobank - Communication of Results - Community/Population - Confidentiality - Counseling (general) - Data - Discrimination - DNA - Education - Employer/Employment - Ethics Review Board - Family - Genetic Screening - Genetic Services - Genetic Testing - Germline Therapy - Insurer/Insurance - Minor/Child - Newborn - Patient/Participant/Individual - Pharmacogenomics - Professional - Public Health - Research - Right not to Know - Socio-Economic Aspects - Somatic Therapy - Tissue |
|
Organization |
European Society of Human Genetics (ESHG) |
|
Title |
Data Storage and DNA Banking for Biomedical Research: Technical, Social and Ethical Issues |
|
Text adopted at (City, Date) |
Birmingham - United Kingdom - 2003-11-01 |
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URL |
|
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Key Words |
Biobank - Confidentiality - Consent - Data - DNA |
|
Organization |
European Parliament (EP) |
|
Title |
Decision No 1513/2002/EC of the European Parliament and of the Council of 27 June 2002 Concerning the Sixth Framework Programme of the European Community for Research, Technological Development and Demonstration Activities, Contributing to the Creation of the European Research Area and to Innovation (2002 to 2006) fre spa |
|
Text adopted at (Country, Date) |
France - 2002-06-27 |
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URL |
|
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Key Words |
Criteria - Ethical Review - Population Genetics - Research - Stem Cell |
|
Organization |
Eubios Ethics Institute |
|
Title |
Eubios Declaration for International Bioethics |
|
Text adopted at (City, Date) |
Tsukuba Science City - Japan - 2002-03-01 |
|
URL |
|
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Key Words |
Community/Population - Consent - Consultation/Collaboration - Education - Educational Institution - Ethical Review - Germline Therapy - Intellectual Property - Population Genetics - Reproductive Cloning - Respect for Human Life - Somatic Therapy - Therapeutic Cloning |
|
Organization |
The World Council of Churches, Pacific Desk, Samoa |
|
Title |
Statement of the Bio-Ethics Consultation about Genetic Research on the People of Tonga |
|
Text adopted at (City, Date) |
Suva - Fiji - 2001-03-14 |
|
URL |
|
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Key Words |
Adult - Autonomy - Benefit Sharing - Biobank - Commercialization - Community/Population - Consent - DNA - Education - Ethics Review Board - Genetic Engineering - Intellectual Property - Liability - Patents - Population Genetics - Professional - Research - Respect for Human Life - Socio-Economic Aspects |
|
Organization |
Council of the European Union |
|
Title |
|
|
Text adopted at (City, Date) |
Nice - France - 2000-12-07 |
|
URL |
|
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Key Words |
Adult - Autonomy - Biobank - Commercialization - Confidentiality - Consent - Disability - Discrimination - DNA - Eugenics - Intellectual Property - Reproductive Cloning - Research - Respect for Human Life |
|
Organization |
European Society of Human Genetics (ESHG) |
|
Title |
Population Genetic Screening Programmes - Technical, Social and Ethical Issues |
|
Text adopted at (City, Date) |
Birmingham - United Kingdom - 2000-07-21 |
|
URL |
|
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Key Words |
Adult - Benefit Sharing - Carrier Status - Commercialization - Communication of Results - Community/Population - Competence - Consent - Consultation/Collaboration - Counseling (general) - Criteria - Diversity - Education - Ethics Review Board - Follow-up - Genetic Screening - Genetic Testing - Minor/Child - Newborn - Patient/Participant/Individual - Population Genetics - Professional - Public Health - Research - Socio-Economic Aspects - State |
|
Organization |
European Group on Ethics in Science and New Technologies (European Commission) (EGE) |
|
Title |
Opinion No.11 on the Ethical Aspects of Human Tissue Banking fre |
|
Text adopted at (City, Date) |
Brussels - Belgium - 1998-07-21 |
|
URL |
|
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Key Words |
Access Info/Material - Autonomy - Biobank - Commercialization - Communication of Results - Community/Population - Competence - Confidentiality - Consent - Consultation/Collaboration - DNA - Education - Employer/Employment - Equity - Ethics Review Board - Follow-up - Genetic Testing - Insurer/Insurance - Intellectual Property - Liability - Professional - Respect for Human Life - Right of Withdrawal - Socio-Economic Aspects - Storage - Third Party |
|
Organization |
Council of Europe |
|
Title |
Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, ETS no. 164 fre spa |
|
Text adopted at (City, Date) |
Oviedo - France - 1997-04-04 |
|
URL |
|
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Key Words |
Access Info/Material - Assent/Dissent - Autonomy - Biobank - Communication of Results - Community/Population - Compensation for Participation - Competence - Confidentiality - Consent - Counseling (general) - Criteria - Discrimination - DNA - Education - Embryos (created for research) - Employer/Employment - Equity - Ethics Review Board - Eugenics - Genetic Testing - Incompetent Adult - Insurer/Insurance - Liability - Minor/Child - Patient/Participant/Individual - Privacy - Professional - Public Health - Reproductive Cloning - Research - Respect for Human Life - Right not to Know - Right of Withdrawal - Socio-Economic Aspects - Stem Cell - Surplus Embryos - Therapeutic Cloning - Third Party |
|
Organization |
University of Central Lancashire - Faculty of Health and Social Care |
|
Title |
Genetic Screening: Ethical and Philosophical Perspectives |
|
Text adopted at (City, Date) |
London - United Kingdom - 1997-02-27 |
|
Key Words |
Adult - Autonomy - Beneficence - Commercialization - Community/Population - Consent - Counseling (general) - Counseling (Pre-test) - Equity - Family - Genetic Screening - Genetic Testing - Minor/Child - Ownership - Population Genetics - Prenatal - Research - Researcher - Right not to Know - Woman/Maternity |
|
Organization |
Council of Europe |
|
Title |
Recommendation No R(97)5 of the Committee of Ministers to Member States on the Protection of Medical Data fre |
|
Text adopted at (City, Date) |
Brussels - Belgium - 1997-02-13 |
|
URL |
|
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Key Words |
Access Info/Material - Autonomy - Benefit Sharing - Biobank - Communication of Results - Competence - Confidentiality - Consent - DNA - Equity - Ethics Review Board - Family - Genetic Testing - Incompetent Adult - Liability - Minor/Child - Patient/Participant/Individual - Public Health - Research - Researcher - Respect for Human Life - Right of Withdrawal - State - Storage - Third Party |
|
Organization |
The Cancer Council Victoria |
|
Title |
Appendix 6: Proposed Guidelines on Ethical Aspects of Risk Assessment, Genetic Testing And Genetic Registers in Relation to Cancer |
|
Text adopted at (City, Date) |
Carlton South - Australia - 1996-11-01 |
|
URL |
|
|
Key Words |
Access Info/Material - Adult - Autonomy - Biobank - Cancer - Community/Population - Compensation for Participation - Competence - Confidentiality - Consent - Counseling (general) - Counseling (Pre-test) - Discrimination - DNA - Education - Family - Genetic Testing - Liability - Minor/Child - Patient/Participant/Individual - Population Genetics - Preconception - Prenatal - Privacy - Professional - Research - Researcher - Respect for Human Life - Storage - Tissue |
|
Organization |
European Parliament (EP) |
|
Title |
Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data fre |
|
Text adopted at (City, Date) |
Strasbourg - Switzerland - 1995-10-24 |
|
URL |
|
|
Key Words |
Access Info/Material - Autonomy - Confidentiality - Consent - Discrimination - Employer/Employment - Equity - Respect for Human Life - Socio-Economic Aspects - Third Party |
|
Organization |
Council of Europe |
|
Title |
Recommendation No R (94)1 of the Committee of Ministers to Member States on Human Tissue Banks fre |
|
Text adopted at (Country, Date) |
France - 1994-01-01 |
|
URL |
|
|
Key Words |
Access Info/Material - Autonomy - Biobank - Compensation for Participation - Confidentiality - DNA - Equity - Ethics Review Board - Privacy - Researcher - Respect for Human Life - Storage |
|
Organization |
World Council of Indigenous Peoples (WCIP) |
|
Title |
Resolution on the Human Genome Diversity Project |
|
Text adopted at (City, Date) |
San Jose - Costa Rica - 1993-12-10 |
|
URL |
|
|
Key Words |
Community/Population - Population Genetics |
|
Organization |
The Inuit Circumpolar Conference (ICC) |
|
Title |
Principles and Elements for a Comprehensive Arctic Policy: Principles and Elements on Northern Scientific Research |
|
Text adopted at (Country, Date) |
Canada - 1992-01-01 |
|
URL |
|
|
Key Words |
Access Info/Material - Autonomy - Biobank - Communication of Results - Community/Population - Competence - Confidentiality - Consent - Consultation/Collaboration - Discrimination - Equity - Ethics Review Board - Follow-up - Liability - Population Genetics - Researcher - Respect for Human Life |
|
Organization |
Council of Europe |
|
Title |
Recommendation No R(89)4 on Collection of Epidemiological Data on Primary Health Care fre |
|
Text adopted at (Country, Date) |
France - 1989-03-06 |
|
URL |
|
|
Key Words |
Access Info/Material - Biobank - Confidentiality - DNA - Ethics Review Board - Researcher - Socio-Economic Aspects |
|
|
NATIONAL |
|
Australia
|
Organization |
Australia/Government - National Health and Medical Research Council (NHMRC) |
|
Title |
National Statement on Ethical Conduct in Human Research |
|
Text adopted at (City, Date) |
Canberra - - 2007-01-01 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Adult - Incompetent Adult - Socio-Economic Aspects - Assent/Dissent - Autonomy - Databases - Beneficence - Biobank - Stem Cell - Researcher - Ethics Review Board - Community/Population - Communication of Results - Competence - Confidentiality - Conflict of Interest - Counseling (general) - Consent - Consultation/Collaboration - Genetic Screening - Duty to Warn - Dignity - Discrimination - Data - Donor - Right not to Know - Right of Withdrawal - Education - Embryo - Storage - Equity - State - Ethical Review - Family - Woman/Maternity - Foetus - Gamete - Population Genetics - Governance - Disability - Compensation for Participation - Integrity - Justice - Minor/Child - Benefit Sharing - Patient/Participant/Individual - Professional - Intellectual Property - Research - Recruitment - Respect for Human Life - Liability - Umbilical Cord Blood - Public Health - Genetic Services - Follow-up - Genetic Testing - Third Party - Tissue - Privacy |
|
Organization |
Australia/Government - Office of the Privacy Commissioner (OPC) |
|
Title |
Review of the National Statement on Ethical Conduct in Human Research |
|
Text adopted at (City, Date) |
Sydney - - 2006-03-01 |
|
URL |
|
|
Key Words |
DNA - Databases - Confidentiality - Consent - Data - Storage - Ethical Review - Research - Tissue - Privacy |
|
Organization |
Australia/Government - National Health and Medical Research Council (NHMRC) |
|
Title |
Values and Ethics: Guidelines for Ethical Matters in Aboriginal and Torres Strait Islander Health Research |
|
Text adopted at (Country, Date) |
Australia - 2003-06-05 |
|
URL |
|
|
Key Words |
Researcher - Ethics Review Board - Community/Population - Communication of Results - Confidentiality - Consent - Consultation/Collaboration - Dignity - Discrimination - Diversity - Data - Right of Withdrawal - Storage - Equity - Ethical Review - Population Genetics - Integrity - Benefit Sharing - Patient/Participant/Individual - Intellectual Property - Research - Privacy |
|
Organization |
Australia/ Gouvernemnt - Australian Law Reform Commission |
|
Title |
Essentially Yours: The Protection of Human Genetic Information in Australia |
|
Text adopted at (City, Date) |
Sydney - - 2003-05-29 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Insurer/Insurance - Databases - Community/Population - Communication of Results - Confidentiality - Counseling (general) - Consent - Deceased - Genetic Screening - Duty to Warn - Duty to recontact - Discrimination - Data - Right not to Know - Right of Withdrawal - Employer/Employment - Storage - Ethical Review - Family - Population Genetics - Minor/Child - Standard of Care - Newborn - Ownership - Research - Recruitment - Carrier Status - Follow-up - Genetic Testing - Tissue - Privacy |
|
Organization |
Australia/Government - National Health and Medical Research Council (NHMRC) |
|
Title |
Guidelines for Genetic Registers and Associated Genetic Material |
|
Text adopted at (Country, Date) |
Australia - 1999-11-08 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Insurer/Insurance - Databases - Biobank - Patents - Researcher - Commercialization - Communication of Results - Confidentiality - Consent - Right not to Know - Employer/Employment - Storage - State - Family - Patient/Participant/Individual - Intellectual Property - Third Party |
|
Organization |
Human Genetics Society of Australasia (HGSA) |
|
Title |
Policy Statement on the Retention, Storage and Use of Sample Cards from Newborn Screening Programs |
|
Text adopted at (Country, Date) |
Australia - 1999-03-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Adult - Socio-Economic Aspects - Databases - Biobank - Researcher - Ethics Review Board - Commercialization - Community/Population - Confidentiality - Consent - Criteria - Deceased - Genetic Screening - Diversity - Data - Education - Storage - Family - Minor/Child - Newborn - Patient/Participant/Individual - Professional - Ownership - Research - Public Health - Follow-up - Third Party - Tissue - Privacy |
|
Organization |
Human Genetics Society of Australasia (HGSA) |
|
Title |
Guidelines for Human DNA Banking |
|
Text adopted at (City, Date) |
Sydney - - 1990-07-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Biobank - Communication of Results - Confidentiality - Consent - Consultation/Collaboration - Storage - Family - Liability - Follow-up |
Canada
|
Organization |
Canadian Invitational Workshop |
|
Title |
Final Workshop Report on the Health Technology Assessment in Newborn and Prenatal Screening: Ethical, Legal, and Social Issues |
|
Text adopted at (City, Date) |
Ottawa - - 2008-02-01 |
|
URL |
|
|
Key Words |
Researcher - Genetic Screening - Population Genetics - Newborn - Prenatal - Research |
|
Organization |
Canadian College of Medical Geneticists (CCMG) |
|
Title |
CCMG's Guidelines for DNA Banking |
|
Text adopted at (City, Date) |
Ottawa - - 2008-01-23 |
|
URL |
|
|
Key Words |
DNA - Databases - Biobank - Confidentiality - Consent - Storage - Research - Genetic Services - Privacy |
|
Organization |
Canadian Institutes of Health Research (CIHR) |
|
Title |
CIHR Guidelines for Health Research Involving Aboriginal People fre |
|
Text adopted at (City, Date) |
Ottawa - - 2007-05-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Autonomy - Biobank - Commercialization - Community/Population - Communication of Results - Confidentiality - Consent - Consultation/Collaboration - Duty to recontact - Data - Right of Withdrawal - Education - Storage - Ethical Review - Population Genetics - Governance - Benefit Sharing - Ownership - Intellectual Property - Liability - Tissue |
|
Organization |
Canadian Biotechnology Advisory Committee (CBAC) |
|
Title |
A Report from the Canadian Biotechnology Advisory Committee on Biotechnology and Health Innovation: Opportunities, Challenges and Public Policy fre |
|
Text adopted at (City, Date) |
Ottawa - - 2004-12-01 |
|
URL |
|
|
Key Words |
Databases - Biobank - Ethics Review Board - Community/Population - Consultation/Collaboration - Intellectual Property - Research - Public Health |
|
Organization |
Canadian Biotechnology Advisory Committee (CBAC) |
|
Title |
Genetic Research and Privacy fre |
|
Text adopted at (Country, Date) |
Canada - 2004-02-27 |
|
URL |
|
|
Key Words |
DNA - Biobank - Commercialization - Confidentiality - Consent - Consultation/Collaboration - Discrimination - Data - Education - Population Genetics - Benefit Sharing - Research - Privacy |
|
Organization |
Association of Canadian Universities for Northern Studies (ACUNS) |
|
Title |
Ethical Principles for the Conduct of Research in the North |
|
Text adopted at (City, Date) |
Ottawa - - 2003-01-01 |
|
URL |
|
|
Key Words |
Researcher - Community/Population - Communication of Results - Confidentiality - Consent - Consultation/Collaboration - Dignity - Right of Withdrawal - Benefit Sharing - Patient/Participant/Individual - Research - Privacy |
|
Organization |
Tri-Council (CIHR, SSHRC and NSERC) |
|
Title |
Tri-Council Policy Statement — Ethical Conduct for Research Involving Humans, 1998 (with 2000, 2002, 2005 amendments) fre |
|
Text adopted at (City, Date) |
Ottawa - - 1998-08-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Adult - Incompetent Adult - Assent/Dissent - Autonomy - Databases - Biobank - Stem Cell - Researcher - Reproductive Cloning - Therapeutic Cloning - Ethics Review Board - Commercialization - Community/Population - Communication of Results - Competence - Confidentiality - Conflict of Interest - Counseling (general) - Consent - Consultation/Collaboration - Criteria - Duty to Warn - Discrimination - Right not to Know - Right of Withdrawal - Education - Embryos (created for research) - Surplus Embryos - Equity - Eugenics - Family - Foetus - Disability - Integrity - Minor/Child - Patient/Participant/Individual - Prenatal - Professional - Research - Recruitment - Respect for Human Life - Liability - Follow-up - Genetic Testing - Gene Therapy - Germline Therapy - Somatic Therapy - Third Party - Privacy |
|
Organization |
Royal Commission on Aboriginal Peoples |
|
Title |
Report of the Royal Commission on Aboriginal Peoples (Appendix E: Ethical Guidelines for Research) fre |
|
Text adopted at (City, Date) |
Ottawa - - 1996-10-01 |
|
URL |
|
|
Key Words |
Access Info/Material - Assent/Dissent - Researcher - Ethics Review Board - Community/Population - Confidentiality - Consent - Education - Population Genetics - Minor/Child - Professional - Recruitment - Liability - Genetic Testing |
|
Organization |
Canadian College of Medical Geneticists (CCMG) |
|
Title |
Policy Statement Concerning DNA Banking and Molecular Genetic Diagnosis |
|
Text adopted at (City, Date) |
Toronto - - 1991-01-01 |
|
Key Words |
Access Info/Material - DNA - Biobank - Researcher - Community/Population - Communication of Results - Competence - Confidentiality - Counseling (general) - Consent - Right not to Know - Storage - Population Genetics - Patient/Participant/Individual - Liability - Genetic Testing - Third Party |
Denmark
|
Organization |
The Danish Council of Ethics (Det Etiske Râd) |
|
Title |
The Danish Council of Ethics' 9th Annual Report 1996 |
|
Text adopted at (City, Date) |
Copenhagen - - 1997-01-01 |
|
URL |
|
|
Key Words |
DNA - Biobank - Ethics Review Board - Confidentiality |
|
Organization |
The Danish Council of Ethics (Det Etiske Râd) |
|
Title |
Health Science Information Banks - Biobanks |
|
Text adopted at (City, Date) |
Copenhagen - - 1996-01-01 |
|
Key Words |
Access Info/Material - DNA - Biobank - Researcher - Competence - Confidentiality - Consent - Data - Right of Withdrawal - Education - Storage - Ethical Review - Governance - Patient/Participant/Individual - Professional - Ownership - Research - Liability |
Estonia
|
Organization |
Estonian Genome Project Foundation |
|
Title |
Estonian Genome Project |
|
Text adopted at (City, Date) |
Tartu - - 2003-02-27 |
|
URL |
|
|
Key Words |
Databases - Ethics Review Board - Consent - Dignity - Discrimination - Data - Donor - Education - Storage - Population Genetics - Integrity - Research - Genetic Testing - Tissue - Privacy |
|
Organization |
Estonia/Government |
|
Title |
Personal Data Protection Act |
|
Text adopted at (Country, Date) |
Estonia - 2003-02-12 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Adult - Biobank - Confidentiality - Consent - Consultation/Collaboration - Data - Storage - Woman/Maternity - Population Genetics - Man/Paternity - Minor/Child - Newborn - Professional - Tissue - Privacy |
|
Organization |
Estonia/Government |
|
Title |
Human Genes Research Act |
|
Text adopted at (City, Date) |
Tallinn - - 2000-12-13 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Incompetent Adult - Databases - Biobank - Researcher - Ethics Review Board - Commercialization - Communication of Results - Confidentiality - Consent - Criteria - Duty to recontact - Discrimination - Data - Donor - Right not to Know - Right of Withdrawal - Storage - State - Ethical Review - Population Genetics - Governance - Compensation for Participation - Justice - Minor/Child - Patient/Participant/Individual - Ownership - Research - Recruitment - Public Health - Third Party - Tissue |
France
|
Organization |
National Consultative Ethics Committee for Health and Life Sciences (CCNE) |
|
Title |
Opinion (No.77) Ethical issues raised by collections of biological material and associated information fre |
|
Text adopted at (City, Date) |
Paris - - 2003-03-20 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Autonomy - Databases - Biobank - Researcher - Ethics Review Board - Commercialization - Communication of Results - Confidentiality - Consent - Consultation/Collaboration - Criteria - Duty to recontact - Data - Donor - Storage - Ethical Review - Family - Population Genetics - Governance - Justice - Benefit Sharing - Patient/Participant/Individual - Ownership - Intellectual Property - Research - Respect for Human Life - Liability - Follow-up - Third Party - Tissue - Privacy |
|
Organization |
National Consultative Ethics Committee for Health and Life Sciences (CCNE) |
|
Title |
Opinion (No. 74) Umbilical Cord Blood Banks for Autologous Use or for Research fre |
|
Text adopted at (City, Date) |
Paris - - 2002-12-12 |
|
URL |
|
|
Key Words |
Commercialization - Umbilical Cord Blood - Tissue |
|
Organization |
Association des Épidémiologistes de Langue Française (ADELF) |
|
Title |
Recommendations on Deontology and Good Practices in Epidemiology |
|
Text adopted at (City, Date) |
Geneva - - 1999-01-01 |
|
Key Words |
Access Info/Material - DNA - Adult - Incompetent Adult - Autonomy - Biobank - Community/Population - Confidentiality - Consent - Storage - Population Genetics - Integrity - Minor/Child - Research - Respect for Human Life - Third Party |
|
Organization |
National Consultative Ethics Committee for Health and Life Sciences (CCNE) |
|
Title |
Avis sur les problèmes posés par le diagnostic prénatal et périnatal (Avis No. 5 - 13 mai 1985) réédité en 1997 |
|
Text adopted at (Country, Date) |
France - 1997-01-01 |
|
URL |
|
|
Key Words |
Access Info/Material - Psychosocial Aspects - Insurer/Insurance - Ethics Review Board - Community/Population - Confidentiality - Counseling (general) - Employer/Employment - Storage - Eugenics - Family - Population Genetics - Minor/Child - Standard of Care - Patient/Participant/Individual - Prenatal - Professional - Public Health - Privacy |
|
Organization |
National Consultative Ethics Committee for Health and Life Sciences (CCNE) |
|
Title |
Opinion (No. 25) Regarding the Application of Genetic Testing to Individual Studies, Family Studies and Population Studies. (Problems Related to DNA "Banks", Cell "Banks" and Computerisation) fre |
|
Text adopted at (City, Date) |
Paris - - 1991-06-24 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Autonomy - Biobank - Ethics Review Board - Communication of Results - Confidentiality - Dignity - Discrimination - Family - Educational Institution - Integrity - Genetic Testing - Third Party |
Gambia
|
Organization |
MRC - Gambia |
|
Title |
Guidelines of the National DNA Bank, The Gambia |
|
Text adopted at (Country, Date) |
Gambia - 2001-09-19 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Biobank - Patents - Communication of Results - Confidentiality - Consent - Duty to recontact - Right not to Know - Storage - Ethical Review - Governance - Research |
Germany
|
Organization |
German National Ethics Council (Geschäftsselle des Nationalen Ethikrates) |
|
Title |
Biobanks for Research fre |
|
Text adopted at (City, Date) |
Berlin - - 2004-03-17 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - Biobank - Researcher - Commercialization - Community/Population - Confidentiality - Consent - Consultation/Collaboration - Discrimination - Data - Donor - Right not to Know - Right of Withdrawal - Storage - Ethical Review - Population Genetics - Benefit Sharing - Patient/Participant/Individual - Ownership - Research - Recruitment |
|
Organization |
German Research Foundation (Deutsche Forschungsgemeinschaft) |
|
Title |
Predictive Genetic Diagnosis - Scientific Background, Practical and Social Implementation |
|
Text adopted at (City, Date) |
Bonn - - 2003-03-27 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Adult - Incompetent Adult - Socio-Economic Aspects - Insurer/Insurance - Autonomy - Databases - Biobank - Researcher - Ethics Review Board - Community/Population - Communication of Results - Competence - Confidentiality - Counseling (general) - Consent - Consultation/Collaboration - Genetic Screening - Duty to Warn - Duty to recontact - Discrimination - Data - Donor - Right not to Know - Right of Withdrawal - Storage - Ethical Review - Population Genetics - Disability - Patient/Participant/Individual - Research - Recruitment - Genetic Services - Genetic Testing - Tissue - Privacy |
|
Organization |
Social Science Research Center Berlin (WZB) |
|
Title |
Access to Human Genetic Resources-Materials from a transnational Stakeholder Dialogue |
|
Text adopted at (City, Date) |
Berlin - - 2003-01-01 |
|
URL |
|
|
Key Words |
Databases - Patents - Researcher - Community/Population - Consent - State - Benefit Sharing - Professional - Intellectual Property - Third Party |
Greece
|
Organization |
Greece - National Bioethics Commission |
|
Title |
Recommendation on the Collection and Use of Genetic Data |
|
Text adopted at (City, Date) |
Athens - - 2002-09-02 |
|
URL |
|
|
Key Words |
Waiver of Consent - Insurer/Insurance - Commercialization - Confidentiality - Consent - Data - Right not to Know - Embryo - Employer/Employment - Storage - Population Genetics - Genetic Testing - Third Party |
Iceland
|
Organization |
Icelandic National Bioethics Committee |
|
Title |
Guidelines Concerning Informed Consent for Participation in Genetic Research Projects or other Projects Utilising Biological Samples |
|
Text adopted at (City, Date) |
Reykjavík - - 2005-04-15 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Biobank - Ethics Review Board - Confidentiality - Consent - Duty to recontact - Storage - Ethical Review - Patient/Participant/Individual |
|
Organization |
deCode Genetics |
|
Title |
Joint Statement of the Icelandic Medical Association and deCode Genetics on the Health Sector Database |
|
Text adopted at (City, Date) |
Reykjavik - - 2001-08-27 |
|
URL |
|
|
Key Words |
Databases - Data |
|
Organization |
Iceland/Government - Ministry of Health and Social Security |
|
Title |
Regulations on the Keeping and Utilisation of Biological Samples in Biobanks No 134/2001 |
|
Text adopted at (City, Date) |
Reykjavik - - 2001-02-06 |
|
URL |
|
|
Key Words |
DNA - Databases - Biobank - Confidentiality - Consent - Storage - Population Genetics - Research |
|
Organization |
Iceland/Government - Ministry of Health and Social Security |
|
Title |
Act on Biobanks |
|
Text adopted at (Country, Date) |
Iceland - 2000-05-13 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Biobank - Researcher - Ethics Review Board - Community/Population - Communication of Results - Confidentiality - Consent - Duty to recontact - Right not to Know - Right of Withdrawal - Storage - Ethical Review - Population Genetics - Governance - Compensation for Participation - Professional - Ownership - Recruitment - Follow-up - Third Party |
|
Organization |
Iceland/Government - Ministry of Health and Social Security |
|
Title |
Regulation on a Health Sector Database No. 32/2000 |
|
Text adopted at (City, Date) |
Reykjavik - - 2000-01-20 |
|
URL |
|
|
Key Words |
Access Info/Material - Databases - Researcher - Ethics Review Board - Confidentiality - Data - Right of Withdrawal - Employer/Employment - Ethical Review - Woman/Maternity - Population Genetics - Governance - Patient/Participant/Individual - Professional - Research - Follow-up - Privacy |
|
Organization |
deCode Genetics |
|
Title |
Code of Ethics |
|
Text adopted at (City, Date) |
Reykjavik - - 2000-01-01 |
|
Key Words |
DNA - Adult - Incompetent Adult - Autonomy - Biobank - Ethics Review Board - Community/Population - Confidentiality - Conflict of Interest - Counseling (general) - Consent - Education - Storage - Population Genetics - Benefit Sharing - Professional - Research - Respect for Human Life - Liability |
|
Organization |
Iceland/Government - Ministry of Health and Social Security |
|
Title |
Act on Protection of Individuals with regard to the Processing of Personal Data No. 77/2000 |
|
Text adopted at (Country, Date) |
Iceland - 2000-01-01 |
|
URL |
|
|
Key Words |
Access Info/Material - Confidentiality - Data - Research |
|
Organization |
Iceland/Government - Ministry of Health and Social Security |
|
Title |
Act on a Health Sector Database No 139/1998 |
|
Text adopted at (Country, Date) |
Iceland - 1998-01-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Socio-Economic Aspects - Biobank - Ethics Review Board - Commercialization - Confidentiality - Consent - Storage - State - Patient/Participant/Individual - Liability |
|
Organization |
Iceland/Government - Ministry of Health and Social Security |
|
Title |
Act on the Rights of Patients no. 74/1997 |
|
Text adopted at (City, Date) |
Bessastaðir - - 1997-05-28 |
|
URL |
|
|
Key Words |
Access Info/Material - Researcher - Ethics Review Board - Communication of Results - Confidentiality - Consent - Genetic Screening - Right not to Know - Right of Withdrawal - Minor/Child |
India
|
Organization |
Indian Council of Medical Research (ICMR) |
|
Title |
Ethical Guidelines for Biomedical Research on Human Subjects |
|
Text adopted at (City, Date) |
New Delhi - - 2006-01-01 |
|
URL |
|
|
Key Words |
DNA - Psychosocial Aspects - Socio-Economic Aspects - Insurer/Insurance - Biobank - Ethics Review Board - Commercialization - Community/Population - Confidentiality - Counseling (general) - Consent - Genetic Screening - Discrimination - Data - Employer/Employment - Eugenics - Family - Genetic Engineering - Minor/Child - Newborn - Patient/Participant/Individual - Pre-implantation - Prenatal - Professional - Public Health - Genetic Testing - Gene Therapy - Germline Therapy - Somatic Therapy - Privacy |
|
Organization |
India / Government - Ministry of Science and Technology, Department of Biotechnology |
|
Title |
Ethical Policies on the Human Genome, Genetic Research and Services |
|
Text adopted at (Country, Date) |
India - 2001-06-01 |
|
URL |
|
|
Key Words |
DNA - Autonomy - Beneficence - Biobank - Community/Population - Communication of Results - Confidentiality - Counseling (general) - Consent - Discrimination - Data - Equity - Justice - Benefit Sharing - Intellectual Property - Research - Genetic Testing - Gene Therapy - Privacy |
|
Organization |
India/Government |
|
Title |
Guidelines for Exchange of Human Biological Material for Biomedical Research Purposes |
|
Text adopted at (Country, Date) |
India - 1997-11-19 |
|
URL |
|
|
Key Words |
Databases - Biobank - Patents - Researcher - Ethics Review Board - Commercialization - Confidentiality - State - Ethical Review - Developing Country - Intellectual Property - Research - Tissue |
Ireland
|
Organization |
Irish Council for Bioethics (Comhairle Bitheitice na hÉireann) |
|
Title |
Human Biological Material: Recommendations for Collection, Use & Storage in Research 2005 |
|
Text adopted at (City, Date) |
Dublin - - 2005-06-29 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Adult - Incompetent Adult - Autonomy - Databases - Biobank - Patents - Researcher - Ethics Review Board - Commercialization - Community/Population - Communication of Results - Confidentiality - Consent - Criteria - Deceased - Duty to recontact - Dignity - Discrimination - Data - Donor - Right not to Know - Right of Withdrawal - Storage - Equity - Ethical Review - Family - Governance - Compensation for Participation - Minor/Child - Benefit Sharing - Patient/Participant/Individual - Ownership - Intellectual Property - Research - Respect for Human Life - Liability - Public Health - Third Party - Tissue - Privacy |
Israel
|
Organization |
Israel Academy of Sciences and Humanities, Bioethics Advisory Committee |
|
Title |
Population-Based Large-Scale Collections of DNA Samples and Databases of Genetic Information |
|
Text adopted at (City, Date) |
Jerusalem - - 2002-12-01 |
|
URL |
|
|
Key Words |
DNA - Databases - Biobank - Ethics Review Board - Commercialization - Community/Population - Confidentiality - Consent - Data - Population Genetics - Benefit Sharing - Patient/Participant/Individual - Ownership - Research - Public Health - Tissue - Privacy |
Italy
|
Organization |
Italian Society of Human Genetics (Societa à Italiana di Genetica Umana) |
|
Title |
Guidelines for Genetic Biobanks |
|
Text adopted at (City, Date) |
Verona - - 2003-08-01 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Incompetent Adult - Databases - Biobank - Researcher - Community/Population - Communication of Results - Confidentiality - Consent - Data - Donor - Right of Withdrawal - Storage - State - Ethical Review - Population Genetics - Governance - Minor/Child - Benefit Sharing - Patient/Participant/Individual - Ownership - Intellectual Property - Research - Recruitment - Tissue |
|
Organization |
Italy/Government - National Bioethics Committee |
|
Title |
Bioethical Guidelines for Genetic Testing |
|
Text adopted at (Country, Date) |
Italy - 1999-11-19 |
|
URL |
|
|
Key Words |
Access Info/Material - Adult - Incompetent Adult - Insurer/Insurance - Autonomy - Cancer - Communication of Results - Confidentiality - Conflict of Interest - Counseling (general) - Counseling (Pre-test) - Consent - Criteria - Genetic Screening - Discrimination - Right not to Know - Embryo - Family - Population Genetics - Minor/Child - Standard of Care - Newborn - Patient/Participant/Individual - Pre-implantation - Prenatal - Professional - Respect for Human Life - Follow-up - Genetic Testing - Third Party - Privacy |
Japan
|
Organization |
Japan/Government - Ministry of Economy, Trade and IndustryJapan/Government - Ministry of Education, Culture, Sports, Science and TechnologyJapan/Government - Ministry of Health, Labour and Welfare |
|
Title |
Ethical Guidelines for Analytical Research on the Human Genome/Genes |
|
Text adopted at (City, Date) |
Tokyo - - 2001-03-29 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Adult - Incompetent Adult - Autonomy - Biobank - Patents - Ethics Review Board - Commercialization - Community/Population - Communication of Results - Confidentiality - Counseling (general) - Consent - Duty to Warn - Right not to Know - Right of Withdrawal - Storage - Equity - Family - Population Genetics - Minor/Child - Intellectual Property - Research - Respect for Human Life - Liability - Genetic Testing - Third Party |
|
Organization |
Council for Science and Technology, Bioethics Committee |
|
Title |
Fundamental Principles of Research on the Human Genome |
|
Text adopted at (Country, Date) |
Japan - 2000-06-14 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Adult - Incompetent Adult - Autonomy - Biobank - Researcher - Ethics Review Board - Commercialization - Community/Population - Confidentiality - Counseling (general) - Consent - Consultation/Collaboration - Discrimination - Diversity - Right of Withdrawal - Storage - Family - Population Genetics - Minor/Child - Intellectual Property - Research - Respect for Human Life - Liability |
|
Organization |
Japan Society of Mass Screening |
|
Title |
Guidelines on Mass Screening |
|
Text adopted at (City, Date) |
Christchurch - - 1997-01-01 |
|
URL |
|
|
Key Words |
Waiver of Consent - Adult - Ethics Review Board - Communication of Results - Confidentiality - Consent - Genetic Screening - Storage - Ethical Review - Population Genetics - Minor/Child - Newborn - Research - Follow-up |
Latvia
|
Organization |
Latvia/Government |
|
Title |
Human Genome Research Law |
|
Text adopted at (Country, Date) |
Latvia - 2002-07-03 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Incompetent Adult - Databases - Biobank - Communication of Results - Confidentiality - Consent - Duty to recontact - Data - Right of Withdrawal - Storage - State - Governance - Compensation for Participation - Research - Recruitment - Genetic Testing - Tissue - Privacy |
Netherlands
|
Organization |
Dutch Federation of Medical Scientific Societies (FMWV) |
|
Title |
Code for Proper Secondary Use of Human Tissue in the Netherlands |
|
Text adopted at (Country, Date) |
Netherlands - 2003-01-01 |
|
URL |
|
|
Key Words |
Biobank - Researcher - Ethics Review Board - Confidentiality - Consent - Data - Donor - Embryo - Storage - Foetus - Minor/Child - Newborn - Research - Tissue - Privacy |
|
Organization |
Health Council of the Netherlands |
|
Title |
Heredity: Science and Society — On the Possibilities and Limits of Genetic Testing and Gene Therapy |
|
Text adopted at (City, Date) |
The Hague - - 1989-12-29 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Socio-Economic Aspects - Insurer/Insurance - Autonomy - Biobank - Researcher - Ethics Review Board - Confidentiality - Discrimination - Family - Compensation for Participation - Respect for Human Life - Genetic Testing - Third Party - Privacy |
Norway
|
Organization |
Norwegian University of Science and Technology (NTNU) |
|
Title |
Medical Technology: Health Surveys and Biobanking. A Foresight Analysis towards 2020. |
|
Text adopted at (Country, Date) |
Norway - 2004-07-05 |
|
URL |
|
|
Key Words |
Access Info/Material - Databases - Biobank - Researcher - Ethics Review Board - Commercialization - Community/Population - Consent - Consultation/Collaboration - Genetic Screening - Data - Donor - Right of Withdrawal - Storage - Ethical Review - Population Genetics - Minor/Child - Newborn - Benefit Sharing - Patient/Participant/Individual - Ownership - Intellectual Property - Research - Public Health |
|
Organization |
Norway/Government |
|
Title |
Act Relating to Biobanks |
|
Text adopted at (Country, Date) |
Norway - 2003-07-01 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Incompetent Adult - Databases - Biobank - Researcher - Ethics Review Board - Commercialization - Communication of Results - Confidentiality - Consent - Deceased - Data - Donor - Right not to Know - Right of Withdrawal - Storage - Ethical Review - Family - Population Genetics - Governance - Compensation for Participation - Minor/Child - Benefit Sharing - Patient/Participant/Individual - Research - Recruitment - Liability - Tissue - Privacy |
|
Organization |
Norway/Government |
|
Title |
Act of 18 May 2001 No. 24 on Personal Health Data Filing Systems and the Processing of Personal Health Data (Personal Health Data Filing System Act) |
|
Text adopted at (Country, Date) |
Norway - 2001-05-18 |
|
URL |
|
|
Key Words |
Access Info/Material - Databases - Communication of Results - Confidentiality - Consent - Duty to Warn - Data - Right not to Know - Storage - Compensation for Participation - Educational Institution - Integrity - Research - Public Health - Privacy |
Portugal
|
Organization |
Portugal/Government |
|
Title |
40/CNECV/01 - Report and Opinion on the Ethical implications of Genomics |
|
Text adopted at (Country, Date) |
Portugal - 2001-11-06 |
|
URL |
|
|
Key Words |
Socio-Economic Aspects - Autonomy - Commercialization - Community/Population - Confidentiality - Consent - Genetic Screening - Population Genetics - Compensation for Participation - Newborn - Patient/Participant/Individual - Respect for Human Life - Genetic Testing |
Singapore
|
Organization |
Singapore/Government - Bioethics Advisory Committee (BAC) |
|
Title |
Ethical, Legal and Social Issues in Genetic Testing and Genetics Research - A Consultation Paper |
|
Text adopted at (Country, Date) |
Singapore - 2005-04-05 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Adult - Incompetent Adult - Psychosocial Aspects - Insurer/Insurance - Databases - Beneficence - Cancer - Stem Cell - Researcher - Ethics Review Board - Commercialization - Community/Population - Communication of Results - Confidentiality - Counseling (general) - Counseling (Post-test) - Counseling (Pre-test) - Consent - Consultation/Collaboration - Criteria - Deceased - Genetic Screening - Dignity - Discrimination - Data - Donor - Right not to Know - Right of Withdrawal - Embryo - Embryos (created for research) - Employer/Employment - Storage - Equity - Eugenics - Ethical Review - Family - Woman/Maternity - Foetus - Population Genetics - Man/Paternity - Minor/Child - Newborn - Patient/Participant/Individual - Pharmacogenomics - Preconception - Pre-implantation - Prenatal - Professional - Research - Genetic Services - Follow-up - Genetic Testing - Gene Therapy - Germline Therapy - Third Party - Tissue |
|
Organization |
Singapore/Government - Bioethics Advisory Committee (BAC) |
|
Title |
Human Tissue Research: A Report by the Bioethics Advisory Committee Singapore |
|
Text adopted at (Country, Date) |
Singapore - 2002-11-12 |
|
URL |
|
|
Key Words |
Biobank - Confidentiality - Consent - Ethical Review - Compensation for Participation - Research - Tissue |
Sweden
|
Organization |
Sweden/Government |
|
Title |
Statute concerning the ethical vetting of research involving humans |
|
Text adopted at (City, Date) |
Stockholm - - 2004-01-01 |
|
URL |
|
|
Key Words |
DNA - Adult - Databases - Biobank - Researcher - Ethics Review Board - Consent - Data - Ethical Review - Woman/Maternity - Population Genetics - Man/Paternity - Minor/Child - Newborn - Tissue |
|
Organization |
Sweden/Government |
|
Title |
Biobanks in Medical Care Act (2002:297) |
|
Text adopted at (Country, Date) |
Sweden - 2003-01-01 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Incompetent Adult - Databases - Biobank - Researcher - Ethics Review Board - Confidentiality - Consent - Duty to recontact - Data - Donor - Right not to Know - Right of Withdrawal - Embryo - Storage - State - Ethical Review - Foetus - Population Genetics - Governance - Minor/Child - Newborn - Patient/Participant/Individual - Research - Recruitment - Third Party - Tissue - Privacy |
|
Organization |
Swedish Medical Research Council (MFR) |
|
Title |
Research Ethics Guidelines for Using Biobanks, Especially Projects Involving Genome Research |
|
Text adopted at (Country, Date) |
Sweden - 1999-06-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Biobank - Researcher - Ethics Review Board - Community/Population - Communication of Results - Confidentiality - Conflict of Interest - Consent - Consultation/Collaboration - Duty to Warn - Right of Withdrawal - Storage - Population Genetics - Benefit Sharing - Liability - Follow-up |
|
Organization |
Sweden/Government |
|
Title |
Personal Data Act (1998:204) |
|
Text adopted at (Country, Date) |
Sweden - 1998-04-29 |
|
URL |
|
|
Key Words |
Confidentiality - Data |
|
Organization |
Swedish Medical Research Council (MFR) |
|
Title |
Guidelines for Ethical Evaluation of Medical Research Involving Human Subjects |
|
Text adopted at (City, Date) |
Stockholm - - 1996-01-01 |
|
Key Words |
Access Info/Material - DNA - Adult - Incompetent Adult - Autonomy - Biobank - Ethics Review Board - Community/Population - Confidentiality - Conflict of Interest - Consent - Duty to Warn - Storage - Population Genetics - Minor/Child - Patient/Participant/Individual - Research - Recruitment - Respect for Human Life - Liability |
Switzerland
|
Organization |
Swiss Academy of Medical Sciences (SAMS) |
|
Title |
Biobanques: Prélèvements, conservation et utilisation de matériel biologique humain; Directives médico-éthiques et recommandations |
|
Text adopted at (City, Date) |
Bâle - - 2006-05-23 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Databases - Biobank - Researcher - Communication of Results - Confidentiality - Consent - Deceased - Data - Education - Storage - Ethical Review - Governance - Educational Institution - Professional - Tissue - Privacy |
United
Kingdom
|
Organization |
National Cancer Research Institute |
|
Title |
Samples and Data for Research: Template for Access Policy Development |
|
Text adopted at (City, Date) |
London - - 2009-06-19 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Databases - Biobank - Cancer - Ethics Review Board - Communication of Results - Confidentiality - Consent - Data - Right of Withdrawal - Ethical Review - Governance - Research - Tissue |
|
Organization |
The UK Biobank |
|
Title |
Public Attitudes to Third Party Access and Benefit Sharing: Their Application to UK Biobank |
|
Text adopted at (City, Date) |
Manchester - - 2008-06-30 |
|
URL |
|
|
Key Words |
Access Info/Material - Biobank - Patents - Commercialization - Confidentiality - Consent - Duty to recontact - Benefit Sharing - Intellectual Property |
|
Organization |
UK Newborn Screening Programme Centre |
|
Title |
Guidelines for Newborn Blood Spot Sampling |
|
Text adopted at (City, Date) |
London - - 2008-01-01 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Communication of Results - Consent - Genetic Screening - Data - Storage - Woman/Maternity - Man/Paternity - Newborn - Research |
|
Organization |
The Wellcome Trust |
|
Title |
Wellcome Trust Policy on Data Management and Sharing |
|
Text adopted at (City, Date) |
London - - 2007-01-01 |
|
URL |
|
|
Key Words |
Access Info/Material - Databases - Researcher - Communication of Results - Data - Storage - Ethical Review - Governance - Benefit Sharing - Professional - Research - Liability |
|
Organization |
Nuffield Council on Bioethics |
|
Title |
Genetic Screening - A Supplement to the 1993 Report by the Nuffield Council on Bioethics |
|
Text adopted at (City, Date) |
London - - 2006-07-01 |
|
URL |
|
|
Key Words |
Socio-Economic Aspects - Insurer/Insurance - Biobank - Researcher - Community/Population - Communication of Results - Confidentiality - Counseling (general) - Consent - Consultation/Collaboration - Genetic Screening - Education - Employer/Employment - Family - Population Genetics - Patient/Participant/Individual - Pharmacogenomics - Professional - Genetic Services - Carrier Status - Genetic Testing - Predictive Testing |
|
Organization |
Medical Research Council (MRC)The Wellcome Trust |
|
Title |
Access to Collections of Data and Materials for Health Research |
|
Text adopted at (City, Date) |
London - - 2006-03-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Databases - Biobank - Commercialization - Confidentiality - Consent - Data - Storage - Ethical Review - Population Genetics - Governance - Ownership - Intellectual Property - Research - Tissue |
|
Organization |
UK Academy of Medical Sciences |
|
Title |
Personal data for public good: using health information in medical research |
|
Text adopted at (City, Date) |
London - - 2006-01-01 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - Autonomy - Databases - Biobank - Researcher - Ethics Review Board - Confidentiality - Consent - Data - Ethical Review - Governance - Patient/Participant/Individual - Research |
|
Organization |
British Medical Association (BMA) |
|
Title |
Population Screening and Genetic Testing: A Briefing on Current Programmes and Technologies |
|
Text adopted at (City, Date) |
London - - 2005-08-01 |
|
Key Words |
Psychosocial Aspects - Insurer/Insurance - Community/Population - Consent - Genetic Screening - Discrimination - Education - Surplus Embryos - Population Genetics - Patient/Participant/Individual - Pharmacogenomics - Pre-implantation - Professional - Genetic Testing |
|
Organization |
Medical Research Council (MRC) |
|
Title |
Medical Research Council Position Statement on Research Regulation and Ethics |
|
Text adopted at (City, Date) |
London - - 2005-05-01 |
|
URL |
|
|
Key Words |
Access Info/Material - Adult - Incompetent Adult - Psychosocial Aspects - Beneficence - Biobank - Stem Cell - Researcher - Ethics Review Board - Community/Population - Confidentiality - Consent - Criteria - Data - Embryo - Employer/Employment - Ethical Review - Population Genetics - Minor/Child - Patient/Participant/Individual - Research - Liability - Genetic Testing |
|
Organization |
Medical Research Council (MRC) |
|
Title |
MRC Operational and Ethical Guidelines: Human Tissue and Biological Samples for use in Research Clarification following passage of the Human Tissue Act 2004 |
|
Text adopted at (City, Date) |
London - - 2005-04-01 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Biobank - Ethics Review Board - Confidentiality - Consent - Storage - Patient/Participant/Individual - Research - Tissue |
|
Organization |
United Kingdom / Government |
|
Title |
Human Tissue Act 2004 |
|
Text adopted at (City, Date) |
London - - 2004-11-15 |
|
URL |
|
|
Key Words |
Waiver of Consent - DNA - Adult - Incompetent Adult - Assent/Dissent - Databases - Biobank - Ethics Review Board - Consent - Deceased - Duty to recontact - Donor - Storage - State - Ethical Review - Minor/Child - Research - Tissue |
|
Organization |
Medical Research Council (MRC)The Wellcome TrustUnited Kingdom/Department of Health |
|
Title |
UK Biobank Ethics and Governance Framework - Background Document |
|
Text adopted at (City, Date) |
London - - 2003-10-10 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Databases - Biobank - Ethics Review Board - Community/Population - Communication of Results - Confidentiality - Consent - Criteria - Deceased - Duty to recontact - Data - Right of Withdrawal - Storage - Population Genetics - Governance - Compensation for Participation - Benefit Sharing - Patient/Participant/Individual - Ownership - Intellectual Property - Research - Recruitment |
|
Organization |
Generation Scotland |
|
Title |
Generation Scotland - Legal and Ethical Aspects |
|
Text adopted at (City, Date) |
Dundee - - 2003-09-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Biobank - Confidentiality - Consent - Discrimination - Data - Right of Withdrawal - Ethical Review - Population Genetics - Governance - Benefit Sharing - Patient/Participant/Individual - Ownership - Intellectual Property - Public Health - Third Party - Privacy |
|
Organization |
Medical Research Council (MRC) |
|
Title |
Code of Practice for the UK Stem Cell Bank |
|
Text adopted at (City, Date) |
London - - 2003-08-01 |
|
URL |
|
|
Key Words |
Biobank - Stem Cell |
|
Organization |
The Wellcome Trust |
|
Title |
Sharing Data from Large-scale Biological research projects: A system of tripartite Responsibility (Fort Lauderdale Rules) |
|
Text adopted at (City, Date) |
London - - 2003-01-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Databases - Data - Research |
|
Organization |
The Nuffield Trust |
|
Title |
Learning from Experience: Privacy and the Secondary Use of Data in Health Research |
|
Text adopted at (Country, Date) |
United Kingdom - 2002-11-28 |
|
URL |
|
|
Key Words |
Databases - Biobank - Confidentiality - Storage - Research |
|
Organization |
Human Genetics Commission (HGC) |
|
Title |
Inside Information - Balancing Interests in the Use of Personal Genetic Data |
|
Text adopted at (City, Date) |
London - - 2002-05-01 |
|
URL |
|
|
Key Words |
Insurer/Insurance - Databases - Confidentiality - Consent - Employer/Employment - Carrier Status - Genetic Testing |
|
Organization |
Human Genetics Commission (HGC) |
|
Title |
Comments to Inform the Government response to the House of Lords report on Genetic Databases |
|
Text adopted at (Country, Date) |
United Kingdom - 2001-06-13 |
|
Key Words |
DNA - Databases - Ethics Review Board - Consent - Data - Right of Withdrawal - Research |
|
Organization |
Medical Research Council (MRC) |
|
Title |
Human Tissue and Biological Samples for Use in Research- Operational and Ethical Guidelines |
|
Text adopted at (City, Date) |
London - - 2001-04-01 |
|
URL |
|
|
Key Words |
Access Info/Material - Biobank - Commercialization - Confidentiality - Consent - Storage - Research - Tissue |
|
Organization |
United Kingdom / Government |
|
Title |
Fourth Report - Human Genetic Databases: Challenges and Opportunities |
|
Text adopted at (City, Date) |
London - - 2001-03-20 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Databases - Biobank - Ethics Review Board - Commercialization - Communication of Results - Confidentiality - Consent - Consultation/Collaboration - Discrimination - Data - Right not to Know - Right of Withdrawal - Storage - Ethical Review - Population Genetics - Governance - Benefit Sharing - Ownership - Research - Recruitment - Follow-up |
|
Organization |
Foresight Healthcare Panel |
|
Title |
Health Care 2020 |
|
Text adopted at (City, Date) |
London - - 2000-12-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Insurer/Insurance - Biobank - Patents - Stem Cell - Ethics Review Board - Commercialization - Community/Population - Communication of Results - Competence - Confidentiality - Consent - Consultation/Collaboration - Genetic Screening - Right not to Know - Education - Storage - Population Genetics - Benefit Sharing - Patient/Participant/Individual - Professional - Intellectual Property - Liability - Genetic Testing - Third Party |
|
Organization |
United Kingdom / Government |
|
Title |
Data Protection Act 1998 |
|
Text adopted at (Country, Date) |
United Kingdom - 1998-07-16 |
|
URL |
|
|
Key Words |
Confidentiality - Data |
|
Organization |
Nuffield Council on Bioethics |
|
Title |
Human Tissue: Ethical and Legal Issues |
|
Text adopted at (City, Date) |
London - - 1995-04-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Socio-Economic Aspects - Biobank - Patents - Researcher - Ethics Review Board - Commercialization - Confidentiality - Consent - Storage - Compensation for Participation - Ownership - Intellectual Property - Third Party |
United
States
|
Organization |
United States/Government |
|
Title |
Newborn Screening Saves Lives Act of 2007, Pub. L. No. 110-204, 122 Stat. 705 |
|
Text adopted at (City, Date) |
Washington - - 2008-04-24 |
|
URL |
|
|
Key Words |
Counseling (general) - Genetic Screening - Education - Family - Woman/Maternity - Man/Paternity - Minor/Child - Newborn - Patient/Participant/Individual - Professional - Public Health - Carrier Status - Follow-up |
|
Organization |
International Society for Biological and Environmental Repositories (ISBER) |
|
Title |
2008 Best Practices for Repositories: Collection, Storage, Retrieval and Distribution of Biological Materials for Research |
|
Text adopted at (City, Date) |
Bethesda - - 2008-03-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Biobank - Communication of Results - Confidentiality - Data - Storage - Tissue |
|
Organization |
American College of Medical Genetics (ACMG) |
|
Title |
Technical Standards and Guidelines for Reproductive Screening in the Ashkenazi Jewish Population |
|
Text adopted at (City, Date) |
Bethesda - - 2008-01-01 |
|
URL |
|
|
Key Words |
Access Info/Material - Counseling (general) - Consent - Genetic Screening - Education - Family - Preconception - Prenatal - Professional - Liability - Carrier Status - Genetic Testing |
|
Organization |
American College of Medical Genetics (ACMG) |
|
Title |
Carrier Screening in Individuals of Ashkenazi Jewish Descent |
|
Text adopted at (City, Date) |
Bethesda - - 2008-01-01 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - Adult - Psychosocial Aspects - Community/Population - Counseling (general) - Counseling (Post-test) - Counseling (Pre-test) - Consent - Genetic Screening - Education - Family - Preconception - Prenatal - Professional - Carrier Status - Genetic Testing |
|
Organization |
National Institutes of Health (NIH) |
|
Title |
Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies (GWAS) |
|
Text adopted at (City, Date) |
Bethesda - - 2007-08-22 |
|
URL |
|
|
Key Words |
Access Info/Material - Researcher - Communication of Results - Confidentiality - Population Genetics - Benefit Sharing - Patient/Participant/Individual - Ownership - Intellectual Property - Public Health - Privacy |
|
Organization |
National Cancer Institute (NCI)National Institutes of Health (NIH)United States - Department of Health and Human Services (DHHS) |
|
Title |
National Cancer Institute Best Practices for Biospecimens Resources |
|
Text adopted at (City, Date) |
Bethesda - - 2007-06-01 |
|
URL |
|
|
Key Words |
Waiver of Consent - DNA - Databases - Biobank - Commercialization - Confidentiality - Consent - Data - Education - Storage - Ethical Review - Governance - Intellectual Property - Research - Liability - Tissue - Privacy |
|
Organization |
Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS) |
|
Title |
Policy Issues Associated with Undertaking a New Large U.S. Population Cohort Study of Genes, Environment, and Disease |
|
Text adopted at (City, Date) |
Bethesda - - 2007-03-01 |
|
URL |
|
|
Key Words |
Ethics Review Board - Community/Population - Consultation/Collaboration - Data - Education - Population Genetics - Intellectual Property - Research - Privacy |
|
Organization |
United States - Department of Health and Human Services (DHHS) - Food and Drug Administration (FDA) |
|
Title |
Guidance on Informed Consent for In Vitro Diagnostic Device Studies Using Leftover Human Specimens that are not Individually Identifiable |
|
Text adopted at (City, Date) |
Rockville - - 2006-04-25 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - Biobank - Ethics Review Board - Conflict of Interest - Consent - Patient/Participant/Individual - Research - Tissue |
|
Organization |
National Academy of Science - Institute of Medicine (IOM) |
|
Title |
Cord Blood: Establishing a National Hematopoietic Stem Cell Bank Program |
|
Text adopted at (City, Date) |
Washington - - 2005-04-14 |
|
URL |
|
|
Key Words |
Access Info/Material - Biobank - Stem Cell - Confidentiality - Consent - Donor - Storage - Woman/Maternity - Man/Paternity - Minor/Child - Newborn - Research |
|
Organization |
International Society for Biological and Environmental Repositories (ISBER) |
|
Title |
Best Practices for Repositories I: Collection, Storage, and Retrieval of Human Biological Materials for Research |
|
Text adopted at (City, Date) |
Bethesda - - 2005-03-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Biobank - Researcher - Confidentiality - Consent - Storage - Governance - Professional - Tissue |
|
Organization |
National Coalition for Health Professionals Education in Genetics (NCHPEG) |
|
Title |
Core Competencies in Genetics Essential for All Health-Care Professionals (2005) |
|
Text adopted at (City, Date) |
Lutherville - - 2005-01-01 |
|
URL |
|
|
Key Words |
Adult - Autonomy - Community/Population - Communication of Results - Competence - Confidentiality - Counseling (general) - Consent - Consultation/Collaboration - Discrimination - Diversity - Education - Eugenics - Population Genetics - Professional - Respect for Human Life - Liability - Follow-up - Genetic Testing - Privacy |
|
Organization |
Coriell Institute for Medical Research |
|
Title |
Secondary Distribution and Shared Use of Cell Cultures and DNA Samples |
|
Text adopted at (City, Date) |
Camden - - 2004-08-26 |
|
URL |
|
|
Key Words |
DNA - Researcher - Consent - Ethical Review - Research |
|
Organization |
Coriell Institute for Medical Research |
|
Title |
Policy for the Responsible Collection, Storage, and Research Use of Samples from Named Populations for the NIGMS Human Genetic Cell Repository |
|
Text adopted at (Country, Date) |
United States - 2004-08-25 |
|
URL |
|
|
Key Words |
Databases - Biobank - Community/Population - Confidentiality - Consent - Data - Storage - Population Genetics - Patient/Participant/Individual - Research - Follow-up |
|
Organization |
American Academy of Pediatrics (AAP) |
|
Title |
Ethical Considerations in Research With Socially Identifiable Populations |
|
Text adopted at (Country, Date) |
United States - 2004-01-02 |
|
URL |
|
|
Key Words |
Community/Population - Consultation/Collaboration - Discrimination - Population Genetics - Patient/Participant/Individual - Research |
|
Organization |
National Cancer Institute (NCI)National Dialogue on Cancer (NDC) |
|
Title |
National Biospecimen Network Blueprint |
|
Text adopted at (City, Date) |
Washington - - 2003-09-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Databases - Biobank - Cancer - Ethics Review Board - Community/Population - Communication of Results - Confidentiality - Conflict of Interest - Consent - Consultation/Collaboration - Data - Donor - Storage - Governance - Patient/Participant/Individual - Intellectual Property - Public Health - Genetic Testing - Tissue - Privacy |
|
Organization |
National Institutes of Health (NIH) |
|
Title |
Final NIH Statement on Sharing Research Data |
|
Text adopted at (City, Date) |
Washington - - 2003-02-26 |
|
URL |
|
|
Key Words |
Communication of Results - Data - Research |
|
Organization |
Association of State and Territorial Health Officers (The) (ASTHO) |
|
Title |
Public Health Genetics Policy Statement |
|
Text adopted at (City, Date) |
Washington - - 2002-09-11 |
|
URL |
|
|
Key Words |
Insurer/Insurance - Community/Population - Competence - Confidentiality - Genetic Screening - Discrimination - Employer/Employment - Eugenics - Research - Public Health - Genetic Testing - Privacy |
|
Organization |
American Medical Association (AMA) |
|
Title |
E-2.079 Safeguards in the Use of DNA Databanks in Genomic Research |
|
Text adopted at (City, Date) |
Chicago - - 2002-06-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Databases - Biobank - Researcher - Commercialization - Community/Population - Confidentiality - Conflict of Interest - Consent - Consultation/Collaboration - Duty to recontact - Discrimination - Data - Right of Withdrawal - Education - Population Genetics - Benefit Sharing - Patient/Participant/Individual - Professional - Research - Follow-up - Tissue - Privacy |
|
Organization |
Consortium on Pharmacogenetics |
|
Title |
Ethical and Regulatory Issues in Research and Clinical Practice |
|
Text adopted at (Country, Date) |
United States - 2002-04-01 |
|
Key Words |
Databases - Biobank - Communication of Results - Confidentiality - Consent - Discrimination - Data - Storage - Standard of Care - Patient/Participant/Individual - Pharmacogenomics - Research - Carrier Status - Genetic Testing - Privacy |
|
Organization |
National Institutes of Health (NIH) |
|
Title |
NIH Guidelines for Research Involving Recombinant DNA Molecules |
|
Text adopted at (City, Date) |
Washington - - 2002-04-01 |
|
URL |
|
|
Key Words |
DNA - Biobank - Confidentiality - Consent - Criteria - Ethical Review - Prenatal - Research - Follow-up - Germline Therapy - Somatic Therapy |
|
Organization |
National Institutes of Health (NIH) |
|
Title |
Points to Consider when Planning a Genetic Study that Involves Members of Named Populations |
|
Text adopted at (Country, Date) |
United States - 2002-01-04 |
|
URL |
|
|
Key Words |
Ethics Review Board - Community/Population - Consultation/Collaboration - Data - Population Genetics - Patient/Participant/Individual - Research |
|
Organization |
National Bioethics Advisory Commission (NBAC) |
|
Title |
Ethical and Policy Issues In Research Involving Human Participants |
|
Text adopted at (City, Date) |
Rockville - - 2001-05-18 |
|
URL |
|
|
Key Words |
Adult - Assent/Dissent - Autonomy - Databases - Ethics Review Board - Community/Population - Competence - Confidentiality - Conflict of Interest - Consent - Diversity - Education - Equity - Population Genetics - Professional - Research - Respect for Human Life - Liability - Privacy |
|
Organization |
National Institutes of Health (NIH) |
|
Title |
Report of the First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research |
|
Text adopted at (City, Date) |
Bethesda - - 2001-01-03 |
|
URL |
|
|
Key Words |
DNA - Beneficence - Biobank - Researcher - Ethics Review Board - Community/Population - Communication of Results - Competence - Consent - Consultation/Collaboration - Discrimination - Data - Education - Storage - Ethical Review - Population Genetics - Behavioral Genetics - Benefit Sharing - Patient/Participant/Individual - Professional - Ownership - Research - Follow-up - Tissue |
|
Organization |
American College of Epidemiology (ACE) |
|
Title |
American College of Epidemiology Ethics Guidelines |
|
Text adopted at (City, Date) |
Raleigh - - 2000-01-24 |
|
URL |
|
|
Key Words |
DNA - Adult - Socio-Economic Aspects - Autonomy - Ethics Review Board - Community/Population - Communication of Results - Competence - Confidentiality - Consent - Diversity - Right not to Know - Right of Withdrawal - Education - Equity - Population Genetics - Benefit Sharing - Professional - Research - Respect for Human Life - Liability - Privacy |
|
Organization |
American Academy of Pediatrics (AAP) |
|
Title |
Serving the Family From Birth to the Medical Home. Newborn Screening: A Blueprint for the Future - A Call for a National Agenda on State Newborn Screening Programs |
|
Text adopted at (City, Date) |
Elk Grove Village - - 2000-01-01 |
|
URL |
|
|
Key Words |
Access Info/Material - Socio-Economic Aspects - Insurer/Insurance - Databases - Biobank - Community/Population - Communication of Results - Confidentiality - Counseling (general) - Counseling (Post-test) - Counseling (Pre-test) - Consent - Consultation/Collaboration - Genetic Screening - Discrimination - Education - Storage - Equity - State - Family - Woman/Maternity - Population Genetics - Minor/Child - Newborn - Prenatal - Professional - Research - Public Health - Genetic Services - Carrier Status - Follow-up - Genetic Testing - Third Party - Tissue - Privacy |
|
Organization |
National Society of Genetic Counselors (NSGC) |
|
Title |
Cystic Fibrosis Screening |
|
Text adopted at (Country, Date) |
United States - 1999-12-01 |
|
URL |
|
|
Key Words |
Counseling (general) - Family - Population Genetics - Preconception - Prenatal - Genetic Testing |
|
Organization |
National Bioethics Advisory Commission (NBAC) |
|
Title |
Research Involving Human Biological Materials: Ethical Issues and Policy Guidance |
|
Text adopted at (City, Date) |
Maryland - - 1999-09-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Socio-Economic Aspects - Autonomy - Databases - Biobank - Researcher - Ethics Review Board - Community/Population - Communication of Results - Competence - Confidentiality - Conflict of Interest - Consent - Consultation/Collaboration - Discrimination - Data - Right not to Know - Education - Population Genetics - Patient/Participant/Individual - Professional - Research - Respect for Human Life - Liability - Public Health - Follow-up - Third Party - Tissue |
|
Organization |
Office for Protection from Research Risk, (OPRR) |
|
Title |
Issues to Consider in the Research Use of Stored Data or Tissues |
|
Text adopted at (City, Date) |
Rockville - - 1997-11-07 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Databases - Biobank - Ethics Review Board - Confidentiality - Consent - Data - Storage - Ethical Review - Patient/Participant/Individual - Research - Tissue - Privacy |
|
Organization |
Office for Protection from Research Risk, (OPRR) |
|
Title |
Guidance on Protections for Human Subjects in the National Institute of General Medical Sciences: Human Genetic Mutant Cell Repository |
|
Text adopted at (City, Date) |
Rockville - - 1997-05-21 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Databases - Biobank - Ethics Review Board - Confidentiality - Consent - Data - Donor - Storage - Ethical Review - Patient/Participant/Individual - Research - Tissue - Privacy |
|
Organization |
National Research Council (The) - Division on Earth and Life Studies (DELS) |
|
Title |
Evaluating Human Genetic Diversity |
|
Text adopted at (City, Date) |
Washington, DC - - 1997-01-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Socio-Economic Aspects - Autonomy - Biobank - Researcher - Ethics Review Board - Commercialization - Community/Population - Communication of Results - Confidentiality - Consent - Consultation/Collaboration - Discrimination - Right of Withdrawal - Population Genetics - Compensation for Participation - Patient/Participant/Individual - Respect for Human Life - Liability - Follow-up - Third Party |
|
Organization |
American Society of Human Genetics (ASHG) |
|
Title |
Statement on Informed Consent for Genetic Research |
|
Text adopted at (City, Date) |
Bethesda - - 1996-01-01 |
|
URL |
|
|
Key Words |
Waiver of Consent - Access Info/Material - DNA - Adult - Insurer/Insurance - Autonomy - Biobank - Researcher - Ethics Review Board - Communication of Results - Confidentiality - Counseling (general) - Consent - Consultation/Collaboration - Discrimination - Right not to Know - Employer/Employment - Storage - Family - Research - Respect for Human Life - Liability - Follow-up - Genetic Testing - Third Party - Privacy |
|
Organization |
Council of Regional Networks for Genetic Services (CORN) |
|
Title |
Guidelines for the Retention, Storage, and Use of Residual Dried Blood Spot |
|
Text adopted at (City, Date) |
Atlanta - - 1995-04-02 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Researcher - Ethics Review Board - Confidentiality - Consent - Deceased - Genetic Screening - Discrimination - Storage - State - Family - Population Genetics - Minor/Child - Newborn - Professional - Ownership - Research - Genetic Testing - Privacy |
|
Organization |
United States/Government - Department of Energy (DOE)- Office of Science |
|
Title |
The Genetic Privacy Act and Commentary |
|
Text adopted at (City, Date) |
Boston - - 1995-02-28 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Biobank - Researcher - Ethics Review Board - Confidentiality - Conflict of Interest - Consent - Storage - State - Family - Minor/Child - Patient/Participant/Individual - Liability - Genetic Testing - Third Party |
|
Organization |
American College of Medical Genetics (ACMG) |
|
Title |
Statement on Storage and Use of Genetic Materials |
|
Text adopted at (Country, Date) |
United States - 1995-01-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Biobank - Researcher - Communication of Results - Confidentiality - Counseling (general) - Consent - Duty to recontact - Right of Withdrawal - Storage - Family - Compensation for Participation - Benefit Sharing - Research - Genetic Testing |
|
Organization |
National Society of Genetic Counselors (NSGC) |
|
Title |
Genetic screening |
|
Text adopted at (City, Date) |
Wallingford - - 1994-10-01 |
|
URL |
|
|
Key Words |
Counseling (general) - Genetic Screening - Family - Population Genetics - Preconception - Prenatal |
|
Organization |
American Society of Human Genetics (ASHG) |
|
Title |
DNA Banking and DNA Analysis: Points to Consider |
|
Text adopted at (City, Date) |
Bethesda - - 1988-01-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Biobank - Researcher - Ethics Review Board - Communication of Results - Competence - Confidentiality - Consent - Right not to Know - Storage - Family - Liability - Third Party |
|
|
PROVINCIAL (CANADA) |
|
|
Organization |
Quebec/ Government- Science and Technology Ethics Commission (CEST) |
|
Title |
The Ethical Issues of Genetic Databases: Towards Democratic and Responsible Regulation |
|
Text adopted at (City, Date) |
Sainte-Foy - Canada - 2003-02-13 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Insurer/Insurance - Databases - Biobank - Patents - Ethics Review Board - Commercialization - Confidentiality - Consent - Consultation/Collaboration - Education - Employer/Employment - Benefit Sharing - Patient/Participant/Individual - Professional - Intellectual Property - Research - Genetic Testing |
|
Organization |
Network of Applied Genetic Medicine |
|
Title |
Statement of Principles on the Ethical Conduct of Human Genetic Research Involving Populations fre |
|
Text adopted at (City, Date) |
Montreal - Canada - 2003-01-01 |
|
Key Words |
Waiver of Consent - DNA - Autonomy - Biobank - Ethics Review Board - Commercialization - Community/Population - Communication of Results - Confidentiality - Consent - Consultation/Collaboration - Duty to recontact - Discrimination - Data - Right not to Know - Right of Withdrawal - Storage - Equity - Ethical Review - Population Genetics - Governance - Compensation for Participation - Justice - Benefit Sharing - Ownership - Intellectual Property - Research - Recruitment |
|
Organization |
Québec/Assemblée nationale et gouvernement |
|
Title |
An Act respecting medical laboratories, organ, tissue, gamete and embryo conservation, and the disposal of human bodies |
|
Text adopted at (City, Date) |
Québec - Canada - 2001-12-19 |
|
URL |
|
|
Key Words |
Biobank - Storage - Tissue |
|
Organization |
Conseil de la santé et du bien-être (CSBE) |
|
Title |
Health and Welfare in the Age of Genetic Information: Managing the Individual and Social Issues at Stake fre |
|
Text adopted at (City, Date) |
Quebec - Canada - 2001-04-01 |
|
URL |
|
|
Key Words |
Insurer/Insurance - Databases - Ethics Review Board - Community/Population - Confidentiality - Consent - Data - Employer/Employment - Ethical Review - Population Genetics - Professional - Research - Genetic Testing - Privacy |
|
Organization |
Network of Applied Genetic Medicine |
|
Title |
Statement of principles: Human Genomic Research fre |
|
Text adopted at (City, Date) |
Montreal - Canada - 2000-04-01 |
|
URL |
|
|
Key Words |
Access Info/Material - DNA - Adult - Incompetent Adult - Socio-Economic Aspects - Insurer/Insurance - Autonomy - Biobank - Researcher - Ethics Review Board - Commercialization - Community/Population - Communication of Results - Competence - Confidentiality - Conflict of Interest - Counseling (general) - Consent - Consultation/Collaboration - Duty to Warn - Discrimination - Right not to Know - Right of Withdrawal - Education - Employer/Employment - Storage - Equity - State - Governance - Compensation for Participation - Minor/Child - Benefit Sharing - Professional - Intellectual Property - Research - Recruitment - Respect for Human Life - Liability - Follow-up - Third Party |