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.
researchers are likely to continue into the foreseeable future.This article provides a brief overview of issues associated with commercialization and stem cell research. We highlight some commercialization policies in this fi eld and discuss concerns and issues that may arise in research environments facing signifi cant commercialization pressure. Commercialization is likely to be a valuable and essential tool in translating biomedical research, and stem cell research in particular, into viable clinical therapies. The benefi ts of commercialization strategies include more rapid translation of research into clinical products and greater overall investment in stem cell research [4,12]. Indeed, for many stem cell innovations, links with industry are essential for the translation and dissemination process. However, as we discuss below, there are researchers and] industry and efforts to turn university -based research into marketable products and services " [6,11].The fi eld of stem cell research in particular has been subject to signifi cant commercialization pressure. Scientists face pressure from funding agencies and the public to develop stem cell therapies that will reach the clinic within a short period [12,13,102,103]. A recent survey of stem cell researchers found that 88 % of respondents felt " moderate " or " intense " pressure to create clinical applications from their work [14]. To date, there has been only limited success in translating stem cell research into clinical therapies, but this has not dampened expectations in, or enthusiasm for, the fi eld, as the phenomenon of " stem cell tourism " attests [12,13]. The commercialization pressures facing stem cell ABSTRACT Stem cell researchers face pressure to develop therapies that will reach the clinic within a short period of time. Yet, this pressure may be unrealistic, as bringing stem cell innovations to the clinic will likely require signifi cant time and fi nancial investment. In a variety of biomedical fi elds, some evidence suggests that commercialization pressures and strategies may negatively impact research. These negative impacts may also be felt in the fi eld of stem cell research, unless the challenges and issues are addressed in the design and implementation of commercialization policies. Further inquiry into the impact of commercialization on the fi eld of stem cell research is required.
Background. Biobanks are an important research resource that provides researchers with biological samples, tools and data, but have also been associated with a range of ethical, legal and policy issues and concerns. Although there have been studies examining the views of different stakeholders, such as donors, researchers and the general public, the media portrayal of biobanks has been absent from this body of research. This study therefore examines how biobanking has been represented in major print newspapers from Australia, Canada, the United Kingdom and the United States to identify the issues and concerns surrounding biobanks that have featured most prominently in the print media discourse.Methods. Using Factiva, articles published in major broadsheet newspapers in Canada, the US, the UK, and Australia were identified using specified search terms. The final sample size consisted of 163 articles.Results. Majority of articles mentioned or discussed the benefits of biobanking, with medical research being the most prevalent benefit mentioned. Fewer articles discussed risks associated with biobanking. Researchers were the group of people most quoted in the articles, followed by biobank employees. Biobanking was portrayed as mostly neutral or positive, with few articles portraying biobanking in a negative manner.Conclusion. Reporting on biobanks in the print media heavily favours discussions of related benefits over risks. Members of the scientific research community appear to be a primary source of this positive tone. Under-reporting of risks and a downtrend in reporting on legal and regulatory issues suggests that the print media views such matters as less newsworthy than perceived benefits of biobanking.
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