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Researcher Name: Nadja Kanellopoulou Project Start Date: 01.03.2005 Project End Date: 12.12.2007 Contact Details: Nadja Kanellopoulou - since left the Genomics Forum Please contact: forum@genomicsnetwork.ac.uk Funder: Background: Advances in genomic and genetic sciences have increased pressures to expand research in research biobanks as medically and scientifically promising areas, but such research depends upon collecting large amounts of genetic and biological material. With gene and tissue banks emerging across the developed world - in Britain, UK Biobank and Generation Scotland are two notable examples of these trends - social researchers, legal analysts and policy-makers have begun to examine more closely the social, legal and ethical implications of these banks. The Forum has brought together a wide number of experts, practitioners and policy-makers over several events to critically examine this key area. This work helped exploit synergies within the EGN and make connections to key academic, policy, public and research audiences in order to advance discussion about the place of gene and tissue banks. The programme pursued activities with visiting research fellows (VRFs) in order to connect EGN work with projects studying comparative aspects of biobank governance strategies, including issues of public trust and commercialisation, funding, intellectual property and access strategies for biobanks in UK and abroad. Aims and Objectives: Research Methods: Intellectual Property, Public Trust and Gene Banking seminar (31 May 2006): VRF Dr Dianne Nicol led a seminar on intellectual property, public trust and gene banking and discussed comparative issues in benefit sharing and the ethical, legal and social implications of gene banking. This seminar was interest to a number of EGN and other UK colleagues who currently collaborate in medical sociology research on issues of public engagement, recruitment strategies and benefit sharing models linked with Generation Scotland but also UK Biobank and comparative research on the social, ethical, economic and legal implications of other international projects. Governing Stem Cell Research in California and the USA (13 July 2006): VRF Prof David Winickoff led a seminar on US government's restrictive human embryonic stem cell (hESC) policies and explored three ethical and political problem areas emerging out of the California program, to set the trajectory of hESC research in the US and an institutional approach to address current concerns, by proposing a network of public stem cell banks in US for transparent and shared governance. He also compared whether the UK Stem Cell Bank can serve as a useful model for California and US. Gene Banks and Commerce workshop (18 August 2006): An expert workshop was organised by the Forum to debate questions on the management, funding and commercialisation of gene banks for research including issues of agency, representation and public trust. This event helped colleagues to compare expertise on how policy makers approach public engagement in biobanks and commercialisation, what kinds of knowledge they seek from scientists pursuing biomedical research, social scientists researching public trust in scientific research, lawyers and ethicists seeking to identify norms and values represented in these processes. The event was organised in association with the visit of VRF Prof David Winickoff and was well-attended by science managers, commercialisation managers, top scientists, lawyers and policy representatives (Generation Scotland and Scottish Executive Advisory Board for Generation Scotland, UK Biobank Ethics and Governance Council and Secretariat) involved in biobank projects. IP workshop (sessions) Issues on gene banks management, commercialisation and public trust were included in the sessions of the two expert workshops organised under the Forum’s Genomics and Intellectual Property programme. At IP Workshop I, colleagues discussed equitable models in managing expectations in the commercialisation of genomics and benefit sharing proposals that build on collaborative research supported by EGN/ESRC and AHRC work. Colleagues discussed the meaning and concept of ‘benefits’, as these emerge in current debates about participation in genomics research. The Human Genome Organisation Ethics Committee provides a definition in their 2000 statement on benefit sharing: …‘a benefit is a good that contributes to the well being of an individual and/or a given community (e.g. by region, tribe, disease-group…); benefits transcend avoidance of harm (non-maleficence) in so far as they promote the welfare of an individual and/or a community... thus, a benefit is not identical with profit in the monetary or economic sense…; determining a benefit depends on needs, values, priorities and cultural expectations…’. Are health and wealth benefits mutually exclusive? To what extent are these concepts linked with how people view their contribution or participation to genomic-related research? How do people perceive benefits in relation to commercial profit, especially within different cultural settings, contexts and readings of new technologies? The discussion focussed on how the potential for commercialisation shapes governance on human research participation. Comparative examples were drawn from international discussions on benefit sharing in human genetics, the implications for consent, intellectual property management and sharing of benefits in research biobanks. A proposal for tackling community concerns and benefit sharing was presented, building on collaborative research supported by EGN/ESRC and AHRC. During IP Workshop II colleagues debated the increasing importance of analysing social, ethical and cultural values in IP governance as they affect the management of human tissue samples and data collections. The last session of the workshop in particular, on 'Human Tissue Research Commercialisation: Publics, Ethics and Policy in UK', offered a good opportunity to discuss recent findinds on public attitudes about commercialisation of genomics research. Colleagues discussed the significance of transparent governance in this area and the role of social scientists in informing policy. Main issues discussed were: a) socio-ethical aspects of regulating commercial research in genomics and b) policy assessment of public awareness of research commercialisation in UK For further details on the programme and key issues discussed during these two events, please visit the Genomics and Intellectual Property workstream webpage, or contact Nadja Kanellopoulou, at nadja.kanellopoulou@ed.ac.uk Key Findings: Wider implications for policy: Project Update: Publications: External Links: Further information:
Nadja Kanellopoulou - since left the Genomics Forum
Please contact: forum@genomicsnetwork.ac.uk
Advances in genomic and genetic sciences have increased pressures to expand research in research biobanks as medically and scientifically promising areas, but such research depends upon collecting large amounts of genetic and biological material. With gene and tissue banks emerging across the developed world - in Britain, UK Biobank and Generation Scotland are two notable examples of these trends - social researchers, legal analysts and policy-makers have begun to examine more closely the social, legal and ethical implications of these banks.
The Forum has brought together a wide number of experts, practitioners and policy-makers over several events to critically examine this key area. This work helped exploit synergies within the EGN and make connections to key academic, policy, public and research audiences in order to advance discussion about the place of gene and tissue banks. The programme pursued activities with visiting research fellows (VRFs) in order to connect EGN work with projects studying comparative aspects of biobank governance strategies, including issues of public trust and commercialisation, funding, intellectual property and access strategies for biobanks in UK and abroad.
Intellectual Property, Public Trust and Gene Banking seminar (31 May 2006): VRF Dr Dianne Nicol led a seminar on intellectual property, public trust and gene banking and discussed comparative issues in benefit sharing and the ethical, legal and social implications of gene banking. This seminar was interest to a number of EGN and other UK colleagues who currently collaborate in medical sociology research on issues of public engagement, recruitment strategies and benefit sharing models linked with Generation Scotland but also UK Biobank and comparative research on the social, ethical, economic and legal implications of other international projects.
Governing Stem Cell Research in California and the USA (13 July 2006): VRF Prof David Winickoff led a seminar on US government's restrictive human embryonic stem cell (hESC) policies and explored three ethical and political problem areas emerging out of the California program, to set the trajectory of hESC research in the US and an institutional approach to address current concerns, by proposing a network of public stem cell banks in US for transparent and shared governance. He also compared whether the UK Stem Cell Bank can serve as a useful model for California and US.
Gene Banks and Commerce workshop (18 August 2006): An expert workshop was organised by the Forum to debate questions on the management, funding and commercialisation of gene banks for research including issues of agency, representation and public trust. This event helped colleagues to compare expertise on how policy makers approach public engagement in biobanks and commercialisation, what kinds of knowledge they seek from scientists pursuing biomedical research, social scientists researching public trust in scientific research, lawyers and ethicists seeking to identify norms and values represented in these processes. The event was organised in association with the visit of VRF Prof David Winickoff and was well-attended by science managers, commercialisation managers, top scientists, lawyers and policy representatives (Generation Scotland and Scottish Executive Advisory Board for Generation Scotland, UK Biobank Ethics and Governance Council and Secretariat) involved in biobank projects.
Issues on gene banks management, commercialisation and public trust were included in the sessions of the two expert workshops organised under the Forum’s Genomics and Intellectual Property programme. At IP Workshop I, colleagues discussed equitable models in managing expectations in the commercialisation of genomics and benefit sharing proposals that build on collaborative research supported by EGN/ESRC and AHRC work. Colleagues discussed the meaning and concept of ‘benefits’, as these emerge in current debates about participation in genomics research.
The Human Genome Organisation Ethics Committee provides a definition in their 2000 statement on benefit sharing: …‘a benefit is a good that contributes to the well being of an individual and/or a given community (e.g. by region, tribe, disease-group…); benefits transcend avoidance of harm (non-maleficence) in so far as they promote the welfare of an individual and/or a community... thus, a benefit is not identical with profit in the monetary or economic sense…; determining a benefit depends on needs, values, priorities and cultural expectations…’. Are health and wealth benefits mutually exclusive? To what extent are these concepts linked with how people view their contribution or participation to genomic-related research? How do people perceive benefits in relation to commercial profit, especially within different cultural settings, contexts and readings of new technologies? The discussion focussed on how the potential for commercialisation shapes governance on human research participation. Comparative examples were drawn from international discussions on benefit sharing in human genetics, the implications for consent, intellectual property management and sharing of benefits in research biobanks. A proposal for tackling community concerns and benefit sharing was presented, building on collaborative research supported by EGN/ESRC and AHRC.
During IP Workshop II colleagues debated the increasing importance of analysing social, ethical and cultural values in IP governance as they affect the management of human tissue samples and data collections. The last session of the workshop in particular, on 'Human Tissue Research Commercialisation: Publics, Ethics and Policy in UK', offered a good opportunity to discuss recent findinds on public attitudes about commercialisation of genomics research. Colleagues discussed the significance of transparent governance in this area and the role of social scientists in informing policy. Main issues discussed were:
a) socio-ethical aspects of regulating commercial research in genomics and
b) policy assessment of public awareness of research commercialisation in UK
For further details on the programme and key issues discussed during these two events, please visit the Genomics and Intellectual Property workstream webpage, or contact Nadja Kanellopoulou, at nadja.kanellopoulou@ed.ac.uk
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