Christen Rachul

Stem cell clinics in the news

1243 respect, diagnostics are unusual compared with other domains where patent exclusivity has a role. We agree the evidence of harms from exclusive licensing is not systematic, but the evidence of benefit from patents in genetic diagnostics historically is even weaker. Finally, we appreciate there are indeed limits to BIO’s actions when questions of antitrust would arise in enforcing the existing norms on patenting and licensing genomic inventions. The licensing norms developed by the Organization for Economic Cooperation and Development2 (Paris), the US National Institutes of Health3 and the ‘Nine Points’ document on university technology licensing4 are all pro-competitive however, not anti-competitive. If a company is deviating from those norms, therefore, antitrust concerns would not arise; quite the reverse. We don’t suggest BIO act when antitrust would loom as an issue, but commenting on policies—such as enforcing patents when no test is available to patients— would rarely confront antitrust policy. The main underlying point is that problems with patents and exclusive licensing distinctive to diagnostics can be identified and dealt with, but only if the problems are acknowledged and acted upon. If BIO is turning its attention to these issues, then we will all benefit.

Biobanking, Consent, and Control: A Survey of Albertans on Key Research Ethics Issues

While the development of large scale biobanks continues, ethics and policy challenges persist. Debate surrounds key issues such as giving and withdrawing consent, incidental findings and return of results, and ownership and control of tissue samples. Studies of public perception have demonstrated a lack of consensus on these issues, particularly in different jurisdictions. We conducted a telephone survey of members of the public in Alberta, Canada. The survey addressed the aforementioned issues, but also explored public trust in the individuals and institutions involved in biobanking research. Results show that the Alberta public is fairly consistent in their responses and that those who preferred a broad consent model were also less likely to desire continuing control and a right to withdraw samples. The study raises questions about the role of public perceptions and opinions, particularly in the absence of consensus.

Cancer patient perceptions on the ethical and legal issues related to biobanking

BackgroundUnderstanding the perception of patients on research ethics issues related to biobanking is important to enrich ethical discourse and help inform policy.MethodsWe examined the views of leukemia patients undergoing treatment in clinics located in the Princess Margaret Hospital in Toronto, Ontario, Canada. An initial written survey was provided to 100 patients (64.1% response rate) followed by a follow-up survey (62.5% response rate) covering the topics of informed consent, withdrawal, anonymity, incidental findings and the return of results, ownership, and trust.ResultsThe majority (59.6%) preferred one-time consent, 30.3% desired a tiered consent approach that provides multiple options, and 10.1% preferred re-consent for future research. When asked different questions on re-consent, most (58%) reported that re-consent was a waste of time and money, but 51.7% indicated they would feel respected and involved if asked to re-consent. The majority of patients (62.2%) stated they had a right to withdraw their consent, but many changed their mind in the follow-up survey explaining that they should not have the right to withdraw consent. Nearly all of the patients (98%) desired being informed of incidental health findings and explained that the information was useful. Of these, 67.3% of patients preferred that researchers inform them and their doctors of the results. The majority of patients (62.2%) stated that the research institution owns the samples whereas 19.4% stated that the participants owned their samples. Patients had a great deal of trust in doctors, hospitals and government-funded university researchers, moderate levels of trust for provincial governments and industry-funded university researchers, and low levels of trust towards industry and insurance companies.ConclusionsMany cancer patients surveyed preferred a one-time consent although others desired some form of control. The majority of participants wanted a continuing right to withdraw consent and nearly all wanted to be informed of incidental findings related to their health. Patients had a great deal of trust in their medical professionals and publically-funded researchers as opposed to profit-based industries and insurance companies.

Stem Cell Tourism and Public Education: The Missing Elements

Stem cell tourism describes the Internet-based industry where in patients receive unproven stem cell interventions. To better inform the public, several organizations provide educational material on stem cell therapies and tourism; however, an assessment of the currently available resources reveals a lack of comprehensive information, suggesting that further efforts are needed.

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.

Newspaper reporting on legislative and policy interventions to address obesity: United States, Canada, and the United Kingdom

This article analyzes the content of articles in major newspapers in the United States, Canada, and the United Kingdom that discuss legislative and policy measures to control obesity. The aim was to identify and compare measures that attract media attention in the three jurisdictions: the tone of print media coverage, the characterization of obesity, and attitudes toward government interventions to address obesity. We collected 360 articles published between January 1989 and April 2009 in 12 major newspapers: 83 were published in the United States, 85 in Canada, and 192 in the United Kingdom. Articles in the three jurisdictions discussed the nature and causes of obesity in similar terms, but revealed differences in attitudes toward obesity and toward legal and policy interventions to control rising obesity rates. Obesity is reported principally as a lifestyle problem, but articles state (in varying proportions) that individuals, governments, and industry all share a role in addressing modern environments to promote healthier choices.

The Evolution of Policy Issues in Stem Cell Research: An International Survey

Stem cell research remains a tremendously promising yet controversial field of study. It continues to attract considerable public interest and generate discussion and debate. However, while the high profile of this field has endured, the tone and nature of the discourse that drives this profile appears to be changing. In order to get a better sense of how these potential shifts are perceived by individuals directly embedded in the field, we conducted an international internet survey of members of the stem cell research community. Our participants included individuals publishing on both scientific and ethical, legal and social issues topics. We explored the degree to which participants perceived that key policy issues were becoming more or less contentious over time. We queried views regarding the effect of regulatory frameworks on emerging stem cell research technologies and the extent to which participants experience pressure related to clinical translation. We also explored participants’ relationships with industry, experience with patents and perceptions regarding the emphasis placed on the potential economic benefits of stem cell research. Our results suggest that while traditional debates such as those surrounding the moral status of the embryo remain, other issues more closely associated with clinical translation and commercialization are perceived as becoming increasingly contentious. This survey provides useful insight into the perspectives of a sample of active researchers working in countries around the world as well as an opportunity to reflect on the likely direction of future stem cell policy debates.

What's Missing? Discussing Stem Cell Translational Research in Educational Information on Stem Cell “Tourism”

Stem cell tourism is a growing industry in which patients pursue unproven stem cell therapies for a wide variety of illnesses and conditions. It is a challenging market to regulate due to a number of factors including its international, online, direct-to-consumer approach. Calls to provide education and information to patients, their families, physicians, and the general public about the risks associated with stem cell tourism are mounting. Initial studies examining the perceptions of patients who have pursued stem cell tourism indicate many are highly critical of the research and regulatory systems in their home countries and believe them to be stagnant and unresponsive to patient needs. We suggest that educational material should include an explanation of the translational research process, in addition to other aspects of stem cell tourism, as one means to help promote greater understanding and, ideally, curb patient demand for unproven stem cell interventions. The material provided must stress that strong scientific research is required in order for therapies to be safe and have a greater chance at being effective. Through an analysis of educational material on stem cell tourism and translational stem cell research from patient groups and scientific societies, we describe essential elements that should be conveyed in educational material provided to patients. Although we support the broad dissemination of educational material on stem cell translational research, we also acknowledge that education may simply not be enough to engender patient and public trust in domestic research and regulatory systems. However, promoting patient autonomy by providing good quality information to patients so they can make better informed decisions is valuable in itself, irrespective of whether it serves as an effective deterrent of stem cell tourism.

Chinese newspaper coverage of genetically modified organisms

BackgroundDebates persist around the world over the development and use of genetically modified organisms (GMO). News media has been shown to both reflect and influence public perceptions of health and science related debates, as well as policy development. To better understand the news coverage of GMOs in China, we analyzed the content of articles in two Chinese newspapers that relate to the development and promotion of genetically modified technologies and GMOs.MethodsSearching in the Chinese National Knowledge Infrastructure Core Newspaper Database (CNKI-CND), we collected 77 articles, including news reports, comments and notes, published between January 2002 and August 2011 in two of the major Chinese newspapers: People’s Daily and Guangming Daily. We examined articles for perspectives that were discussed and/or mentioned regarding GMOs, the risks and benefits of GMOs, and the tone of news articles.ResultsThe newspaper articles reported on 29 different kinds of GMOs. Compared with the possible risks, the benefits of GMOs were much more frequently discussed in the articles. 48.1% of articles were largely supportive of the GM technology research and development programs and the adoption of GM cottons, while 51.9% of articles were neutral on the subject of GMOs. Risks associated with GMOs were mentioned in the newspaper articles, but none of the articles expressed negative tones in regards to GMOs.ConclusionThis study demonstrates that the Chinese print media is largely supportive of GMOs. It also indicates that the print media describes the Chinese government as actively pursuing national GMO research and development programs and the promotion of GM cotton usage. So far, discussion of the risks associated with GMOs is minimal in the news reports. The media, scientists, and the government should work together to ensure that science communication is accurate and balanced.

Representations of the health value of vitamin D supplementation in newspapers: media content analysis

Objective To examine the nature of media coverage of vitamin D in relation to its role in health and the need for supplements. Design Media content analysis. Setting Print articles from elite newspapers in the UK, the USA and Canada. Participants 294 print newspaper articles appearing over 5 years (2009–2014). Results Newspaper coverage of vitamin D generally supported supplementation. The most common framing of vitamin D in print articles was “adequate vitamin D is necessary for good health.” Articles also framed vitamin D as difficult to obtain from food supply and framed vitamin D deficiency as a widespread concern. In discussions of supplementation, 80% articles suggested supplementation is or may be necessary for the general population, yet almost none of the articles discussed the potential harms of vitamin D supplementation in any detail. Print articles named 40 different health conditions in relationship to vitamin D. The most commonly cited conditions included bone health, cancer and cardiovascular health. Although print articles referred to a wide range of scholarly research on vitamin D with varying degrees of endorsement for supplementation, a general tone of support for vitamin D supplementation in media coverage persisted. Conclusions Newspaper articles conveyed overall support for vitamin D supplementation. News articles linked vitamin D to a wide range of health conditions for which there is no conclusive scientific evidence. Media coverage downplayed the limitations of existing science and overlooked any potential risks associated with supplementation.