Ubaka Ogbogu

Science communication reconsidered

As new media proliferate and the publics trust and engagement in science are influenced by industry involvement in academic research, an interdisciplinary workshop provides some recommendations to enhance science communication.

iPS Cells: Mapping the Policy Issues

Given the explosion of research on induced pluripotent stem (iPS) cells, it is timely to consider the various ethical, legal, and social issues engaged by this fast-moving field. Here, we review issues associated with the procurement, basic research, and clinical translation of iPS cells.

A review of the key issues associated with the commercialization of biobanks

A review of the key issues associated with the commercialization of biobanks Timothy Caulfield∗, Sarah Burningham, Yann Joly, ZubinMaster, Mahsa Shabani, Pascal Borry, Allan Becker, Michael Burgess, Kathryn Calder, Christine Critchley, Kelly Edwards, Stephanie M. Fullerton, Herbert Gottweis, Robyn Hyde-Lay, Judy Illes, Rosario Isasi, Kazuto Kato, Jane Kaye, Bartha Knoppers, John Lynch, AmyMcGuire, Eric Meslin, Dianne Nicol, Kieran O’Doherty, Ubaka Ogbogu, Margaret Otlowski, Daryl Pullman, Nola Ries, Chris Scott, Malcolm Sears, HelenWallace andMa’n H. Zawati†

The Stem Cell Research Environment: A Patchwork of Patchworks

Few areas of recent research have received as much focus or generated as much excitement and debate as stem cell research. Hope for the therapeutic promise of this field has been matched by social concern associated largely with the sources of stem cells and their uses. This interplay between promise and controversy has contributed to the enormous variation that exists among the environments in which stem cell research is conducted throughout the world. This variation is layered upon intra-jurisdictional policies that are also often complex and in flux, resulting in what we term a ‘patchwork of patchworks’. This patchwork of patchworks and its implications will become increasingly important as we enter this new era of stem cell research. The current progression towards translational and clinical research among international collaborators serves as a catalyst for identifying potential policy conflict and makes it imperative to address jurisdictional variability in stem cell research environments. The existing patchworks seen in contemporary stem cell research environments provide a valuable opportunity to consider how variations in regulations and policies across and within jurisdictions influence research efficiencies and directions. In one sense, the stem cell research context can be viewed as a living experiment occurring across the globe. The lessons to be gleaned from examining this field have great potential for broad-ranging general science policy application.

Informed consent in embryonic stem cell research: Are we following basic principles?

The question of whether stem cell research involving human embryos is morally acceptable has dominated much of the national and international dialogue, including parliamentary debates in Canada.[1][1],[2][2] Many of the policies surrounding the ethics of stem cell research were developed in this

Professional Regulation: A Potentially Valuable Tool in Responding to “Stem Cell Tourism”

The growing international market for unproven stem cell-based interventions advertised on a direct-to-consumer basis over the internet (“stem cell tourism”) is a source of concern because of the risks it presents to patients as well as their supporters, domestic health care systems, and the stem cell research field. Emerging responses such as public and health provider-focused education and national regulatory efforts are encouraging, but the market continues to grow. Physicians play a number of roles in the stem cell tourism market and, in many jurisdictions, are members of a regulated profession. In this article, we consider the use of professional regulation to address physician involvement in stem cell tourism. Although it is not without its limitations, professional regulation is a potentially valuable tool that can be employed in response to problematic types of physician involvement in the stem cell tourism market.

Patents, commercialization and the Canadian stem cell research community

AIMS There has been a great deal of discussion in relevant literature on the adverse impact of commercialization agendas and the patenting regime on research in emerging fields. We sought to assess the perceived impact of these factors on the stem cell research community in Canada. MATERIALS & METHODS We surveyed 283 researchers from Canadas Stem Cell Network using a survey instrument informed by relevant literature and systematic consultations with Canadian and international regulators, stem cell researchers and research ethics experts designed to identify pressing ethical, legal and social issues relevant to stem cell research. A total of 108 researchers responded to the survey. RESULTS & CONCLUSIONS Results indicate that although many researchers believe that patents may have adverse effects on research, very few have encountered any such effects in practice. The researchers admitted to withholding data to protect patenting opportunities, while also maintaining that patents did not contribute to publication delays. The pressure to commercialize their research was largely held to be reasonable by researchers.

Stem Cell Research Ethics: Consensus Statement on Emerging Issues

This article is a consensus statement by an international interdisciplinary group of academic experts and Canadian policy-makers on emerging ethical, legal and social issues in human embryonic stem cells (hESC) research in Canada. The process of researching consensus included consultations with key stakeholders in hESC research (regulations, stem cell researchers, and research ethics experts), preparation and distribution of background papers, and an international workshop held in Montreal in February 2007 to discuss the papers and debate recommendations. The recommendations provided in the consensus statement focus on issues of immediate relevance to Canadian policy-makers, including informed consent to hESC research, the use of fresh embryos in research, management of conflicts of interest, and the relevance of public opinion research to policy-making.

Research ethics and stem cells Is it time to re-think current approaches to oversight?

Few areas of scientific inquiry have received the amount of attention from politicians, the media and the ethics community that research involving human stem cells has received. A large part of this attention, particularly in the early days of the field, was focused as much on the controversial nature of the research as on its scientific promise. The primary cause of controversy remains the use and destruction of human embryos to derive stem cells or create human embryonic stem cell (hESC) lines, which is considered by some constituencies to be morally problematic. A common policy response to these issues has been to subject stem cell research to heightened or additional ethics reviews and oversights. Internationally, many jurisdictions have established specific legislation, ethical guidelines and oversight bodies to govern stem cell and related embryo research (Box 1). ### Box 1: Some jurisdictions with heightened ethics review process for stem cell research CANADA UNITED STATES

Chinese newspaper coverage of (unproven) stem cell therapies and their providers.

China is a primary destination for stem cell tourism, the phenomenon whereby patients travel abroad to receive unproven stem cell-based treatments that have not been approved in their home countries. Yet, much remains unknown about the state of the stem cell treatment industry in China and about how the Chinese view treatments and providers. Given the media’s crucial role in science/health communication and in framing public dialogue, this study sought to examine Chinese newspaper portrayal and perceptions of stem cell treatments and their providers. Based on a content analysis of over 300 newspaper articles, the study revealed that while Chinese newspaper reporting is generally neutral in tone, it is also inaccurate, overly positive, heavily influenced by “interested” treatment providers and focused on the therapeutic uses of stem cells to address the health needs of the local population. The study findings suggest a need to counterbalance providers’ influence on media reporting through strategies that encourage media uptake of accurate information about stem cell research and treatments.