Privacy Protection and Genetic Research: Where Does the Public Interest Lie?

Ogbogu, Ubaka; Burningham, Sarah

doi:10.29173/alr46

Cited by 5 publications

(3 citation statements)

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“…This approach is necessarily case-specific, and should be implemented by a body or institution that is familiar with, or structured to obtain and incorporate into its deliberative and decision-making process, multiple perspectives on the research context, associated privacy challenges, participant preferences, and the risks and benefits of proposed exceptions. While it remains an open question whether or not RECs can fulfill these roles within the scope of their present mandates [ 65 ], an emerging alternative is the establishment of data access committees that are charged with the responsibility of overseeing requests or applications for research use and disclosure of personal health data, and with monitoring and responding to privacy challenges resulting from innovations in health research [ 26 , 65 ].…”

Section: Discussionmentioning

confidence: 99%

“…The role of RECs in privacy governance in the context of cell-based research should be clarified. At the moment, some hurdles may stand in the way of effective oversight, including the fact that RECs may lack experience in privacy matters or may exchange rigorous ethics review for bureaucratic box checking [ 65 , 81 , 82 ]. Accordingly, legislation and relevant policies should set out dedicated governance frameworks to monitor and respond to privacy challenges in the context of cell-based research.…”

Section: Discussionmentioning

confidence: 99%

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Policy recommendations for addressing privacy challenges associated with cell-based research and interventions

et al. 2014

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BackgroundThe increased use of human biological material for cell-based research and clinical interventions poses risks to the privacy of patients and donors, including the possibility of re-identification of individuals from anonymized cell lines and associated genetic data. These risks will increase as technologies and databases used for re-identification become affordable and more sophisticated. Policies that require ongoing linkage of cell lines to donors’ clinical information for research and regulatory purposes, and existing practices that limit research participants’ ability to control what is done with their genetic data, amplify the privacy concerns.DiscussionTo date, the privacy issues associated with cell-based research and interventions have not received much attention in the academic and policymaking contexts. This paper, arising out of a multi-disciplinary workshop, aims to rectify this by outlining the issues, proposing novel governance strategies and policy recommendations, and identifying areas where further evidence is required to make sound policy decisions. The authors of this paper take the position that existing rules and norms can be reasonably extended to address privacy risks in this context without compromising emerging developments in the research environment, and that exceptions from such rules should be justified using a case-by-case approach. In developing new policies, the broader framework of regulations governing cell-based research and related areas must be taken into account, as well as the views of impacted groups, including scientists, research participants and the general public.SummaryThis paper outlines deliberations at a policy development workshop focusing on privacy challenges associated with cell-based research and interventions. The paper provides an overview of these challenges, followed by a discussion of key themes and recommendations that emerged from discussions at the workshop. The paper concludes that privacy risks associated with cell-based research and interventions should be addressed through evidence-based policy reforms that account for both well-established legal and ethical norms and current knowledge about actual or anticipated harms. The authors also call for research studies that identify and address gaps in understanding of privacy risks.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Policy recommendations for addressing privacy challenges associated with cell-based research and interventions

et al. 2014

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“…Academic literature and public opinion polls indicate that concerns about privacy may be more or less acute, depending on whether research is privately or publicly funded. 80 These concerns are particularly relevant, given the increased pressure on university researchers over the last decade to commercialize their work. 81 Public support of and public trust in researchers and research institutions tend to be diminished as research is commercialized or private interests become involved in setting the research agenda.…”

Section: Privacy and Commercializationmentioning

confidence: 99%

Cell therapy research and innovation

Burningham

2012

Medical Law International

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This paper discusses the privacy challenges associated with cell therapy research and related innovations. A review of privacy issues identified in the academic literature reveals both theoretical and practical challenges. The author considers the governance of privacy issues in this context by Canadian legislative, jurisprudential and ethical privacy frameworks, paying particular attention to the application of data protection legislation to tissue research. The author briefly examines relevant international instruments and the approaches by the United Kingdom and the United States. The current Canadian regulatory framework, as applied to cell therapy research, fails to provide robust, comprehensive privacy protection.

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Commercialisation of Human Genetic Research

Toews

2015

Encyclopedia of Life Sciences

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Over the past few decades, scientific researchers have come under increasing pressure to commercialise their findings. This pressure and an increase in academic–industry connections have raised a number of concerns, including a potential loss of funding for basic science, the increased likelihood of researchers and universities finding themselves in (real or perceived) conflicts of interest and a potential loss of public support for research. In the human genetic research context, additional concerns have been raised including the legality of gene patents and their effect on innovation, the potentially premature marketing of genetic technologies and the readiness of health‐care systems, physicians and society for the increasing number and range of genetic testing options. While some of these concerns have proven less worrisome than others, the full extent of the impact of commercialisation of human genetic research is not yet known and there is much room for further research in this area. Key Concepts Commercialisation of scientific research can essentially be understood as the conversion of research findings into a commercial product or service (Downie and Herder, 2007) and can involve industry–university partnerships, patenting of research findings or spin‐off companies created as a result of research. Commercialisation of scientific research has grown significantly in recent years and is increasingly being prioritised by public funding bodies. As a result, the scientific community is under pressure to demonstrate the commercial value of their work. This is often referred to as ‘commercialisation pressure’. In the genetic research context, gene patenting has raised a lot of controversy in terms of its moral, ethical and legal validity. The legality of these patents has been debated around the world, and different jurisdictions appear to be coming to different conclusions on this issue. One concern that is frequently raised regarding gene patenting is its potential to negatively impact innovation by creating an ‘anticommons’ (Heller and Eisenberg, 1998). The ‘anticommons’ concern is essentially the idea that the growth of intellectual property protection will hinder researchers from accessing necessary research inputs, thereby slowing scientific progress and innovation. This concern has received a great deal of attention; however, recent research raises questions about the extent to which this concern has actually manifested. There has also been a lot of ‘hype’ surrounding genetic research, which has frequently been portrayed to the public in an overly optimistic manner in terms of its potential benefits and timelines in which these benefits are likely to materialise. This phenomenon is not necessarily the result of any intention to mislead the public but rather the product of many different pressures and incentive structures that scientists, research institutions and the media are operating under. Direct‐to‐consumer genetic testing has also raised concerns in terms of the marketing strategies employed by companies offering these tests and their ability to actually deliver useful health information to consumers. As a result, some regulatory bodies are taking a firm stand against companies marketing these tests, while others appear to be taking a more permissive stance.

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Privacy Protection and Genetic Research: Where Does the Public Interest Lie?

Cited by 5 publications

References 1 publication

Policy recommendations for addressing privacy challenges associated with cell-based research and interventions

Policy recommendations for addressing privacy challenges associated with cell-based research and interventions

Cell therapy research and innovation

Commercialisation of Human Genetic Research

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