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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.

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.

There is significant public interest in the outcomes of genetic research. However, there is also a great deal of concern that genetic research and associated realms will foster the use and disclosure of personal health and genetic information in ways that undermine protected privacy interests. This article proposes that a balance must be struck between legitimate public interests implicated in the collection, use, and disclosure of genetic information for research purposes. The article also explores the tension between the public interest in genetic research and the protection of individual privacy in relation to different policy regimes and reviews existing statutory rules, case law, and administrative decisions on the public interest exception in Canadian privacy law.L'intérêt public pour les résultats de la recherche génétique est considérable. Cependant, on s'inquiète également fortement du fait que la recherche génétique et les domaines connexes amènent l'utilisation et la divulgation d'information personnelle sur le plan génétique et de la santé de manière à ébranler la protection de la vie privée. Le présent article propose qu'un équilibre soit atteint entre les intérêts légitimes du public impliqué dans la collecte et l'utilisation et la divulgation d'information génétique à des fins de recherche. L'article explore également la tension qui existe entre l'intérêt du public pour la recherche génétique et la protection de la vie privée des individus en ce qui concerne les divers régimes de politiques. L'article examine les règles en vertu de lois existantes, la jurisprudence et les décisions administratives quant aux exceptions d'intérêt public contenues dans le droit canadien relatif au respect de la vie privée.

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