Gillian M Martin | University of Malta (original) (raw)
Papers by Gillian M Martin
This paper explores the level of awareness of the Maltese general public in relation to the exist... more This paper explores the level of awareness of the Maltese general public in relation to the existence and use of biobanks as resources for biomedical and genomic research. Using a quantitative research design, a four question survey was administered face-toface to a random stratified quota sample (n = 387) of the Maltese population. The survey assessed whether the general public understands what a biobank is, and what the people believe/ think a biobank might be. Results show that the overwhelming majority of the public is not aware of the term 'biobank', and when asked to think about what a biobank could be, the majority of these failed to give an accurate answer, with a financial institution being the most frequent suggestion. This said, 26.5% of those who initially claimed that they did not know what a biobank is (or claimed they were not sure) went on to give a legitimate response when asked to speculate about what a biobank could be. Most of these respondents mentioned biobanks which store gametes and/or embryos and biobanks which store blood and organs for the purpose of donation. Whilst gender does not seem to be a significant factor in the outcome as an independant variable, educational achievement did have an influence on the accuracy of the responses. The key finding is that only 2.3% of the Maltese population promptly associated the term 'biobank' with a facility for storing tissue for the purpose of biomedical research, while the vast majority believed it referred to a financial institution.
Sociology of health & illness, 2015
Childhood obesity is a major public health concern in contemporary Malta. This article applies a ... more Childhood obesity is a major public health concern in contemporary Malta. This article applies a critical realist approach to exploring body shape in young children, recognising fatness and obesity to be both a biologically and a socially constructed phenomenon. The agentic status of the child is central to the research design aimed at exploring understandings of body shape and how they impact on relational dynamics in the lived experiences of young children in Malta. Ethnographic methods were used in a school setting, working with children (n = 134) in two age groups: 5 and 10-year olds. The findings show a marked difference in the two groups. The obese 5-year-olds, buffered by robust protective strategies in their primary group, seem to be unaware of any difference in body shape. This situation changes in the older group where the fat body is stigmatised and obese children develop private coping strategies to deal with the physical disadvantages, taunting and exclusion by their pe...
Humanities and Social Sciences Communications, 2020
With the advance of genomics, specific individual conditions have received increased attention in... more With the advance of genomics, specific individual conditions have received increased attention in the generation of scientific knowledge. This spans the extremes of the aim of curing genetic diseases and identifying the biological basis of social behaviour. In this development, the ways knowledge is produced have gained significant relevance, as the data-intensive search for biology/sociality associations has repercussions on doing social research and on theory. This article argues that an in-depth discussion and critical reflection on the social configurations that are inscribed in, and reproduced by genomic data-intensive research is urgently needed. This is illustrated by debating a recent case: a large-scale genome-wide association study (GWAS) on sexual orientation that suggested partial genetic basis for same-sex sexual behaviour (Ganna et al. 2019b). This case is analysed from three angles: (1) the demonstration of how, in the process of genomics research, societal relations,...
The efficacy of any public health campaign is impacted in important ways by the level of public u... more The efficacy of any public health campaign is impacted in important ways by the level of public understanding and cooperation. The measures put in place to limit the spread of SARS-CoV-2 virus in Malta have had important influence on societal relations, with the use of face coverings arguably having the most impact. The aim of our study was to empirically explore the lived experience of wearing a mask the perceptions, beliefs and attitudes related to the use of facecoverings during the COVID-19 pandemic in the Maltese Islands. A mixed methods research design was used to collect data via an online survey with a convenience, non-probability sample made up of 990 respondents. Quantitative data were collected via closed ended questions supplemented by qualitative data in open text boxes. Our data, collected before the wearing of face coverings was mandatory in all public places, showed how the vast majority of participants chose to wear them, with the predominant choice being facemasks....
European Journal of Human Genetics
European Journal of Human Genetics
Dynamic consent aims to empower research partners and facilitate active participation in the rese... more Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna-a web portal for 'dynamic consent' that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners' consent in a blockchain to create an immutable audit trail of research partners' consent changes. Dwarna's structure also presents a solution to the European Union's General Data Protection Regulation's right to erasure-a right that is seemingly incompatible with the blockchain model. Dwarna's transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.
International Journal of Qualitative Methods
Qualitative research with children as participants is challenging on many levels-ethical, methodo... more Qualitative research with children as participants is challenging on many levels-ethical, methodological, and relational. When researching the experience of children with particular bodily vulnerabilities, these issues are further amplified. This article describes a data generating tool designed to address these challenges. It was used within the context of an ethnographic study exploring relational societal processes associated with childhood obesity in Malta. This creative child-centric method uses "me" drawings as elicitation foci during informal conversations in the field where the agentic status of the child was prioritized and their role as active collaborators emphasized. Optimizing ethical symmetry was a key concern, as was emphasis on relational ethics and assent. Using the "Draw(Me) and Tell" activity positioned the child in a realistic position of power by giving them control over the data generation process, and helped address ethical issues related to agency, privacy, and sensitivity. It allowed ethical generation of qualitative data based on the children's reflexive commentary on their own body shapes, with the aim of exploring their embodied habitus, identity, and selfhood.
Biopreservation and biobanking, Jan 23, 2018
The known challenge of underutilization of data and biological material from biorepositories as p... more The known challenge of underutilization of data and biological material from biorepositories as potential resources for medical research has been the focus of discussion for over a decade. Recently developed guidelines for improved data availability and reusability-entitled FAIR Principles (Findability, Accessibility, Interoperability, and Reusability)-are likely to address only parts of the problem. In this article, we argue that biological material and data should be viewed as a unified resource. This approach would facilitate access to complete provenance information, which is a prerequisite for reproducibility and meaningful integration of the data. A unified view also allows for optimization of long-term storage strategies, as demonstrated in the case of biobanks. We propose an extension of the FAIR Principles to include the following additional components: (1) quality aspects related to research reproducibility and meaningful reuse of the data, (2) incentives to stimulate effe...
Sociology of Health & Illness
health care and research. The jeopardy of this darkside lies precisely in the scale of such resea... more health care and research. The jeopardy of this darkside lies precisely in the scale of such research clusters, which can translate into potentially ineffective communication and barriers to collaboration. This is a comprehensive book on the ever-popular field of collaboration in health care and research, and would appeal to researchers in health and social sciences, juniors and seniors alike. We cannot be quite sure, however, whether the contributors of the book had a similar conception of collaboration in mind while developing the chapters, nor whether they used it consistently throughout. What the authors do extremely well, though, is disclosing what lies behind contexts and practices of cooperative alliances to make us look beyond the here-and-nowness of research life. Articulating collective interests, talents, resources, and techniques over time, and beyond spatial proximity and disciplinary norms, could enhance our research and working practices.
Postcolonial Directions in Education, Apr 5, 2013
European Journal of Human Genetics
Dynamic consent aims to empower research partners and facilitate active participation in the rese... more Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna-a web portal for 'dynamic consent' that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners' consent in a blockchain to create an immutable audit trail of research partners' consent changes. Dwarna's structure also presents a solution to the European Union's General Data Protection Regulation's right to erasure-a right that is seemingly incompatible with the blockchain model. Dwarna's transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.
Xjenza Online , 2020
The efficacy of any public health campaign is impacted in important ways by the level of public u... more The efficacy of any public health campaign is impacted in important ways by the level of public understanding and cooperation. The measures put in place to limit the spread of SARS-CoV-2 virus in Malta have had important influence on societal relations, with the use of face coverings arguably having the most impact. The aim of our study was to empirically explore the lived experience of wearing a mask-the perceptions, beliefs and attitudes related to the use of face-coverings during the COVID-19 pandemic in the Maltese Islands. A mixed methods research design was used to collect data via an online survey with a convenience, non-probability sample made up of 990 respondents. Quantitative data were collected via closed ended questions supplemented by qualitative data in open text boxes. Our data, collected before the wearing of face coverings was mandatory in all public places, showed how the vast majority of participants chose to wear them, with the predominant choice being facemasks. The vast majority of respondents claimed that the wearing of face masks while interacting in public spaces (both indoor and outdoor) leads to a sense of security, with increased sense of confidence in public safety measures. Data on beliefs and knowledge are significantly associated with level of education and include the mistaken belief that a visor offers as much protection as a facemask, and that wearing a facemask reduces the amount of oxygen available to breathe. Qualitative data highlighted challenges linked to communication, heat, discomfort, anxiety about lack of oxygen, and finding it harder to breathe, besides issues related to condensation on spectacles. The negative impact at work was also flagged, with increased level of irritability, reduced levels of concentration and reduced quality of service described in the data. Though compliance to public health directives was clearly dominant within our sample, the particular challenges highlighted within the study identify areas of potential breakdown of safe practices where focused science communication on a national level would be beneficial.
Humanities and Social Sciences Communications , 2020
With the advance of genomics, specific individual conditions have received increased attention in... more With the advance of genomics, specific individual conditions have received increased attention in the generation of scientific knowledge. This spans the extremes of the aim of curing genetic diseases and identifying the biological basis of social behaviour. In this development, the ways knowledge is produced have gained significant relevance, as the data-intensive search for biology/sociality associations has repercussions on doing social research and on theory. This article argues that an in-depth discussion and critical reflection on the social configurations that are inscribed in, and reproduced by genomic data-intensive research is urgently needed. This is illustrated by debating a recent case: a large-scale genome-wide association study (GWAS) on sexual orientation that suggested partial genetic basis for same-sex sexual behaviour (Ganna et al. 2019b). This case is analysed from three angles: (1) the demonstration of how, in the process of genomics research, societal relations, understandings and categorizations are used and inscribed into social phenomena and outcomes ; (2) the exploration of the ways that the (big) data-driven research is constituted by increasingly moving away from theory and methodological generation of theoretical concepts that foster the understanding of societal contexts and relations (Kitchin 2014a). Big Data Soc and (3) the demonstration of how the assumption of 'free from theory' in this case does not mean free of choices made, which are themselves restricted by data that are available. In questioning how key sociological categories are incorporated in a wider scientific debate on genetic conditions and knowledge production, the article shows how underlying classification and categorizations, which are inherently social in their production, can have wide ranging implications. The conclusion cautions against the marginalization of social science in the wake of developments in data-driven research that neglect social theory, established methodology and the contextual relevance of the social environment.
Biobanks have evolved, and their governance procedures have undergone important transformations. ... more Biobanks have evolved, and their governance procedures have undergone important transformations. Our paper examines this issue by focusing on the perspective of the professionals working in management or scientific roles in research-based biobanks, who have an important impact on shaping these transformations. In particular, it highlights that recent advances in molecular medicine and genomic research have raised a range of ethical, legal and societal implications (ELSI) related to biobank-based research, impacting directly on regulations and local practices of informed consent (IC), private-public partnerships (PPPs), and engagement of participants. In our study, we investigate the ways that these concerns influence biobanking practices and assess the level of satisfaction of the cross-national biobanking research communities with the ELSI related procedures that are currently in place. We conducted an online survey among biobankers and researchers to investigate secondary use of data, informing and/or re-contacting participants, sharing of data with third parties from industry, participant engagement, and collaboration with industrial partners. Findings highlight the need for a more inclusive and transparent biobanking practice where biobanks are seen in a more active role in providing information and communicating with participants; the need to improve the current IC procedures and the role of biobanks in sharing of samples and data with industry partners and different countries, and the need for practical, tangible and hands-on ethical and legal guidance.
Xjenza Online, 2018
This paper explores the level of awareness of the Maltese general public in relation to the exist... more This paper explores the level of awareness of the Maltese general public in relation to the existence and use of biobanks as resources for biomedical and genomic research. Using a quantitative research design, a four question survey was administered face-to-face to a random stratified quota sample (n = 387) of the Maltese population. The survey assessed whether the general public understands what a biobank is, and what the people believe/ think a biobank might be. Results show that the overwhelming majority of the public is not aware of the term 'biobank', and when asked to think about what a biobank could be, the majority of these failed to give an accurate answer, with a financial institution being the most frequent suggestion. This said, 26.5% of those who initially claimed that they did not know what a biobank is (or claimed they were not sure) went on to give a legitimate response when asked to speculate about what a biobank could be. Most of these respondents mentioned biobanks which store gam-etes and/or embryos and biobanks which store blood and organs for the purpose of donation. Whilst gender does not seem to be a significant factor in the outcome as an independant variable, educational achievement did have an influence on the accuracy of the responses. The key finding is that only 2.3% of the Maltese population promptly associated the term 'biobank' with a facility for storing tissue for the purpose of biomedical research, while the vast majority believed it referred to a financial institution.
This paper explores the level of awareness of the Maltese general public in relation to the exist... more This paper explores the level of awareness of the Maltese general public in relation to the existence and use of biobanks as resources for biomedical and genomic research. Using a quantitative research design, a four question survey was administered face-toface to a random stratified quota sample (n = 387) of the Maltese population. The survey assessed whether the general public understands what a biobank is, and what the people believe/ think a biobank might be. Results show that the overwhelming majority of the public is not aware of the term 'biobank', and when asked to think about what a biobank could be, the majority of these failed to give an accurate answer, with a financial institution being the most frequent suggestion. This said, 26.5% of those who initially claimed that they did not know what a biobank is (or claimed they were not sure) went on to give a legitimate response when asked to speculate about what a biobank could be. Most of these respondents mentioned biobanks which store gametes and/or embryos and biobanks which store blood and organs for the purpose of donation. Whilst gender does not seem to be a significant factor in the outcome as an independant variable, educational achievement did have an influence on the accuracy of the responses. The key finding is that only 2.3% of the Maltese population promptly associated the term 'biobank' with a facility for storing tissue for the purpose of biomedical research, while the vast majority believed it referred to a financial institution.
Sociology of health & illness, 2015
Childhood obesity is a major public health concern in contemporary Malta. This article applies a ... more Childhood obesity is a major public health concern in contemporary Malta. This article applies a critical realist approach to exploring body shape in young children, recognising fatness and obesity to be both a biologically and a socially constructed phenomenon. The agentic status of the child is central to the research design aimed at exploring understandings of body shape and how they impact on relational dynamics in the lived experiences of young children in Malta. Ethnographic methods were used in a school setting, working with children (n = 134) in two age groups: 5 and 10-year olds. The findings show a marked difference in the two groups. The obese 5-year-olds, buffered by robust protective strategies in their primary group, seem to be unaware of any difference in body shape. This situation changes in the older group where the fat body is stigmatised and obese children develop private coping strategies to deal with the physical disadvantages, taunting and exclusion by their pe...
Humanities and Social Sciences Communications, 2020
With the advance of genomics, specific individual conditions have received increased attention in... more With the advance of genomics, specific individual conditions have received increased attention in the generation of scientific knowledge. This spans the extremes of the aim of curing genetic diseases and identifying the biological basis of social behaviour. In this development, the ways knowledge is produced have gained significant relevance, as the data-intensive search for biology/sociality associations has repercussions on doing social research and on theory. This article argues that an in-depth discussion and critical reflection on the social configurations that are inscribed in, and reproduced by genomic data-intensive research is urgently needed. This is illustrated by debating a recent case: a large-scale genome-wide association study (GWAS) on sexual orientation that suggested partial genetic basis for same-sex sexual behaviour (Ganna et al. 2019b). This case is analysed from three angles: (1) the demonstration of how, in the process of genomics research, societal relations,...
The efficacy of any public health campaign is impacted in important ways by the level of public u... more The efficacy of any public health campaign is impacted in important ways by the level of public understanding and cooperation. The measures put in place to limit the spread of SARS-CoV-2 virus in Malta have had important influence on societal relations, with the use of face coverings arguably having the most impact. The aim of our study was to empirically explore the lived experience of wearing a mask the perceptions, beliefs and attitudes related to the use of facecoverings during the COVID-19 pandemic in the Maltese Islands. A mixed methods research design was used to collect data via an online survey with a convenience, non-probability sample made up of 990 respondents. Quantitative data were collected via closed ended questions supplemented by qualitative data in open text boxes. Our data, collected before the wearing of face coverings was mandatory in all public places, showed how the vast majority of participants chose to wear them, with the predominant choice being facemasks....
European Journal of Human Genetics
European Journal of Human Genetics
Dynamic consent aims to empower research partners and facilitate active participation in the rese... more Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna-a web portal for 'dynamic consent' that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners' consent in a blockchain to create an immutable audit trail of research partners' consent changes. Dwarna's structure also presents a solution to the European Union's General Data Protection Regulation's right to erasure-a right that is seemingly incompatible with the blockchain model. Dwarna's transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.
International Journal of Qualitative Methods
Qualitative research with children as participants is challenging on many levels-ethical, methodo... more Qualitative research with children as participants is challenging on many levels-ethical, methodological, and relational. When researching the experience of children with particular bodily vulnerabilities, these issues are further amplified. This article describes a data generating tool designed to address these challenges. It was used within the context of an ethnographic study exploring relational societal processes associated with childhood obesity in Malta. This creative child-centric method uses "me" drawings as elicitation foci during informal conversations in the field where the agentic status of the child was prioritized and their role as active collaborators emphasized. Optimizing ethical symmetry was a key concern, as was emphasis on relational ethics and assent. Using the "Draw(Me) and Tell" activity positioned the child in a realistic position of power by giving them control over the data generation process, and helped address ethical issues related to agency, privacy, and sensitivity. It allowed ethical generation of qualitative data based on the children's reflexive commentary on their own body shapes, with the aim of exploring their embodied habitus, identity, and selfhood.
Biopreservation and biobanking, Jan 23, 2018
The known challenge of underutilization of data and biological material from biorepositories as p... more The known challenge of underutilization of data and biological material from biorepositories as potential resources for medical research has been the focus of discussion for over a decade. Recently developed guidelines for improved data availability and reusability-entitled FAIR Principles (Findability, Accessibility, Interoperability, and Reusability)-are likely to address only parts of the problem. In this article, we argue that biological material and data should be viewed as a unified resource. This approach would facilitate access to complete provenance information, which is a prerequisite for reproducibility and meaningful integration of the data. A unified view also allows for optimization of long-term storage strategies, as demonstrated in the case of biobanks. We propose an extension of the FAIR Principles to include the following additional components: (1) quality aspects related to research reproducibility and meaningful reuse of the data, (2) incentives to stimulate effe...
Sociology of Health & Illness
health care and research. The jeopardy of this darkside lies precisely in the scale of such resea... more health care and research. The jeopardy of this darkside lies precisely in the scale of such research clusters, which can translate into potentially ineffective communication and barriers to collaboration. This is a comprehensive book on the ever-popular field of collaboration in health care and research, and would appeal to researchers in health and social sciences, juniors and seniors alike. We cannot be quite sure, however, whether the contributors of the book had a similar conception of collaboration in mind while developing the chapters, nor whether they used it consistently throughout. What the authors do extremely well, though, is disclosing what lies behind contexts and practices of cooperative alliances to make us look beyond the here-and-nowness of research life. Articulating collective interests, talents, resources, and techniques over time, and beyond spatial proximity and disciplinary norms, could enhance our research and working practices.
Postcolonial Directions in Education, Apr 5, 2013
European Journal of Human Genetics
Dynamic consent aims to empower research partners and facilitate active participation in the rese... more Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna-a web portal for 'dynamic consent' that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners' consent in a blockchain to create an immutable audit trail of research partners' consent changes. Dwarna's structure also presents a solution to the European Union's General Data Protection Regulation's right to erasure-a right that is seemingly incompatible with the blockchain model. Dwarna's transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.
Xjenza Online , 2020
The efficacy of any public health campaign is impacted in important ways by the level of public u... more The efficacy of any public health campaign is impacted in important ways by the level of public understanding and cooperation. The measures put in place to limit the spread of SARS-CoV-2 virus in Malta have had important influence on societal relations, with the use of face coverings arguably having the most impact. The aim of our study was to empirically explore the lived experience of wearing a mask-the perceptions, beliefs and attitudes related to the use of face-coverings during the COVID-19 pandemic in the Maltese Islands. A mixed methods research design was used to collect data via an online survey with a convenience, non-probability sample made up of 990 respondents. Quantitative data were collected via closed ended questions supplemented by qualitative data in open text boxes. Our data, collected before the wearing of face coverings was mandatory in all public places, showed how the vast majority of participants chose to wear them, with the predominant choice being facemasks. The vast majority of respondents claimed that the wearing of face masks while interacting in public spaces (both indoor and outdoor) leads to a sense of security, with increased sense of confidence in public safety measures. Data on beliefs and knowledge are significantly associated with level of education and include the mistaken belief that a visor offers as much protection as a facemask, and that wearing a facemask reduces the amount of oxygen available to breathe. Qualitative data highlighted challenges linked to communication, heat, discomfort, anxiety about lack of oxygen, and finding it harder to breathe, besides issues related to condensation on spectacles. The negative impact at work was also flagged, with increased level of irritability, reduced levels of concentration and reduced quality of service described in the data. Though compliance to public health directives was clearly dominant within our sample, the particular challenges highlighted within the study identify areas of potential breakdown of safe practices where focused science communication on a national level would be beneficial.
Humanities and Social Sciences Communications , 2020
With the advance of genomics, specific individual conditions have received increased attention in... more With the advance of genomics, specific individual conditions have received increased attention in the generation of scientific knowledge. This spans the extremes of the aim of curing genetic diseases and identifying the biological basis of social behaviour. In this development, the ways knowledge is produced have gained significant relevance, as the data-intensive search for biology/sociality associations has repercussions on doing social research and on theory. This article argues that an in-depth discussion and critical reflection on the social configurations that are inscribed in, and reproduced by genomic data-intensive research is urgently needed. This is illustrated by debating a recent case: a large-scale genome-wide association study (GWAS) on sexual orientation that suggested partial genetic basis for same-sex sexual behaviour (Ganna et al. 2019b). This case is analysed from three angles: (1) the demonstration of how, in the process of genomics research, societal relations, understandings and categorizations are used and inscribed into social phenomena and outcomes ; (2) the exploration of the ways that the (big) data-driven research is constituted by increasingly moving away from theory and methodological generation of theoretical concepts that foster the understanding of societal contexts and relations (Kitchin 2014a). Big Data Soc and (3) the demonstration of how the assumption of 'free from theory' in this case does not mean free of choices made, which are themselves restricted by data that are available. In questioning how key sociological categories are incorporated in a wider scientific debate on genetic conditions and knowledge production, the article shows how underlying classification and categorizations, which are inherently social in their production, can have wide ranging implications. The conclusion cautions against the marginalization of social science in the wake of developments in data-driven research that neglect social theory, established methodology and the contextual relevance of the social environment.
Biobanks have evolved, and their governance procedures have undergone important transformations. ... more Biobanks have evolved, and their governance procedures have undergone important transformations. Our paper examines this issue by focusing on the perspective of the professionals working in management or scientific roles in research-based biobanks, who have an important impact on shaping these transformations. In particular, it highlights that recent advances in molecular medicine and genomic research have raised a range of ethical, legal and societal implications (ELSI) related to biobank-based research, impacting directly on regulations and local practices of informed consent (IC), private-public partnerships (PPPs), and engagement of participants. In our study, we investigate the ways that these concerns influence biobanking practices and assess the level of satisfaction of the cross-national biobanking research communities with the ELSI related procedures that are currently in place. We conducted an online survey among biobankers and researchers to investigate secondary use of data, informing and/or re-contacting participants, sharing of data with third parties from industry, participant engagement, and collaboration with industrial partners. Findings highlight the need for a more inclusive and transparent biobanking practice where biobanks are seen in a more active role in providing information and communicating with participants; the need to improve the current IC procedures and the role of biobanks in sharing of samples and data with industry partners and different countries, and the need for practical, tangible and hands-on ethical and legal guidance.
Xjenza Online, 2018
This paper explores the level of awareness of the Maltese general public in relation to the exist... more This paper explores the level of awareness of the Maltese general public in relation to the existence and use of biobanks as resources for biomedical and genomic research. Using a quantitative research design, a four question survey was administered face-to-face to a random stratified quota sample (n = 387) of the Maltese population. The survey assessed whether the general public understands what a biobank is, and what the people believe/ think a biobank might be. Results show that the overwhelming majority of the public is not aware of the term 'biobank', and when asked to think about what a biobank could be, the majority of these failed to give an accurate answer, with a financial institution being the most frequent suggestion. This said, 26.5% of those who initially claimed that they did not know what a biobank is (or claimed they were not sure) went on to give a legitimate response when asked to speculate about what a biobank could be. Most of these respondents mentioned biobanks which store gam-etes and/or embryos and biobanks which store blood and organs for the purpose of donation. Whilst gender does not seem to be a significant factor in the outcome as an independant variable, educational achievement did have an influence on the accuracy of the responses. The key finding is that only 2.3% of the Maltese population promptly associated the term 'biobank' with a facility for storing tissue for the purpose of biomedical research, while the vast majority believed it referred to a financial institution.
University of Malta , 2014
Having an innovative idea or using an already existing business concept to gain competitive advan... more Having an innovative idea or using an already existing business concept to gain competitive advantage over other businesses, together with the right amount of entrepreneurial motivation, is the spark needed to ignite the fire of a new enterprise. But is this enough? Once a business venture is set up, the entrepreneur needs to sustain the company’s profitability while allowing for it to flourish further. This study precisely aims to investigate the ways through which one’s social and cultural context impacts the entrepreneurial process. It is focused around two key aspects of the entrepreneurial journey; (a.) the fostering of entrepreneurial motivation and (b.) initiating and ultimately running a profit-making business enterprise. The effects of one’s social situation on the entrepreneurial journey are examined qualitatively through face to face interviews with seven Maltese entrepreneurs. The qualitative nature of this research generates in-depth, valid data highlighting the relational dynamics at the core of the entrepreneurial process. The impact of the social context on the lived experience of the entrepreneur is explored through investigating a number of social factors which emerge from the literature as being key issues of influence, namely: gender, family background, social capital, education and societal resistance or support. The principal conclusion of this research study is that despite the significance of personal character and competence with regards to developing entrepreneurial motivation and succeeding within the business sector, all participants seem to have been significantly affected by their social situation, even though they were generally unaware of the impact of their social environment.