Edna Einsiedel

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.

Consensus Conferences as Deliberative Democracy A Communications Perspective

Consensus conferences involve a small group of citizens who go through a learning process on a given technological issue, engage experts, and develop an assessment of the key issues they identify as critical. These models of technology assessment, intended to make the process more democratic, have increasingly been used in Europe. This study examines the first application in Canada on the issue of food biotechnology. It examines the consensus conference as a model of public deliberation with specific attention to communication processes.

Evaluating Online Direct-to-Consumer Marketing of Genetic Tests: Informed Choices or Buyers Beware?

Commercialization of genetic technologies is expanding the horizons for the marketing and sales of genetic tests direct-to-consumers (DTCs). This study assesses the information provision and access requirements that are in place for genetic tests that are being advertised DTC over the Internet. Sets of key words specific to DTC genetic testing were entered into popular Internet search engines to generate a list of 24 companies engaging in DTC advertising. Company requirements for physician mediation, genetic counseling arrangements, and information provision were coded to develop categories for quantitative analysis within each variable. Results showed that companies offering risk assessment and diagnostic testing were most likely to require that testing be mediated by a clinician, and to recommend physician-arranged counseling. Companies offering enhancement testing were less likely to require physician mediation of services and more likely to provide long-distance genetic counseling. DTC advertisements often provided information on disease etiology; this was most common in the case of multifactorial diseases. The majority of companies cited outside sources to support the validity of claims about clinical utility of the tests being advertised; companies offering risk assessment tests most frequently cited all information sources. DTC advertising for genetic tests that lack independent professional oversight raises troubling questions about appropriate use and interpretation of these tests by consumers and carries implications for the standards of patient care. These implications are discussed in the context of a public healthcare system.

Dwarfing the Social? Nanotechnology Lessons from the Biotechnology Front.

Biotechnology and nanotechnology are both strategic technologies, and the former provides several lessons that could contribute to more successful embedding and integration processes for the latter. This article identifies some of the key questions emerging from the biotechnology experience and summarizes several lessons learned in the context of constructive technology assessment. This approach broadens the range of social considerations relevant to the sustainable development of nanotechnology and emphasizes the need for developing social tools for nanotechnology innovation while the technology is in its early stages of design.

Cloning and its discontents—a Canadian perspective

Public attitudes to Dolly the sheep may mirror the perception of biotechnology as a whole.

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.

STEM CELL TOURISM AND FUTURE STEM CELL TOURISTS: POLICY AND ETHICAL IMPLICATIONS

Stem cell tourism is a small but growing part of the thriving global medical tourism marketplace. Much stem cell research remains at the experimental stage, with clinical trials still uncommon. However, there are over 700 clinics estimated to be operating in mostly developing countries--from Costa Rica and Argentina to China, India and Russia--that have lured many patients, mostly from industrialized countries, driven by desperation and hope, which in turn continue to fuel the growth of such tourism. While much research has focused on such dimensions as the promotions that allow such businesses to make their services known, media coverage, some patient research, and regulatory conditions for developing country clinics, little attention has been paid to the non-affected members of the general population, the future potential users of such services. This empirical study based on five focus group discussions with a diverse group of healthy adults in a Canadian city, explored participant views of patients who use stem cell tourism services, the likelihood they would avail themselves of such services if they were to suffer similar illnesses, and the conditions under which they might do so, and the impact that admonitions and advice from international expert bodies might have on their decisions. Our findings suggest that these healthy adults are sympathetic to the drivers of hope and desperation, and, despite cautions about research limitations, may seek such treatments themselves under similar conditions. These findings are discussed in the context of the policy and ethical issues raised by this form of medical tourism.

Diversity in public views toward stem cell sources and policies.

Studies of public views on stem cell research have traditionally focused on human embryonic stem cells. With more recent scientific research on developing other stem cell sources, a series of focus group studies was undertaken with Canadian adults to examine their views on different stem cell sources (adult, umbilical cord blood, human embryonic stem cells, somatic cell nuclear transfer or SCNT, and interspecies nuclear transfer, or iSCNT). Views on three different policy models—a permissive, middle-of-the-road and restrictive policy approach—were also explored. Participants were recruited from several different social groups including patients, young adults, seniors, members of two ethnic communities, and a mixed group of adults. Participants were generally supportive of the use of adult stem cell sources. While there was also majority support for the use of hESC and SCNT, this was conditional on strict regulatory oversight. There was also majority support for a permissive policy which allows research on hESC and SCNT. General themes that cut across different groups included the potential cost of new technologies to the health care system, issues around who would gain access to these technologies, and trust in the scientific establishment and regulatory systems. A diversity of viewpoints was found as participants justified their positions on stem cell sources and policy approaches, showing more complexity and nuance than has been generally portrayed.

Framing genetic risk: trust and credibility markers in online direct-to-consumer advertising for genetic testing

This study looks at Internet direct-to-consumer advertising (DTCA) for genetic testing to assess the way in which genetic risk information is framed to consumers, and strategies to establish trust and credibility in this context. Keywords specific to genetic test DTC advertising were entered into popular Internet search engines, arriving at 22 companies. Representations of benefits and risks on company websites were coded and themes were developed pertaining to promotional information of genetic tests for a variety of health conditions. Two strategies were most frequently used by companies to frame risk: underlining the basis of the condition, often with genetic determinist and essentialist undertones, and stressing the commonality of the conditions. Major credibility and trust markers employed were indications of organizational professional accreditation/recognition and credentials of company executives and staff. The DTC ads examined provided limited, vague or inaccurate information about disease etiology and promoted tests for use in broader at-risk populations than is normally indicated in clinical practice. Implications of these trends for Canadian consumers and clinicians are discussed.

Synthetic biology confronts publics and policy makers: challenges for communication, regulation and commercialization

The novelty of synthetic biology lies in the use of synthesized parts that can be arranged to make useful products. Such advanced, high-throughput genetic engineering projects redesign and fabricate existing biological systems as well as new biological parts, devices and systems that do not occur in nature. This Opinion discusses challenges raised by synthetic biology for public acceptance, regulation, commercialization and the emerging global issue of access to genetic resources and information. As with all new fields of research, maintaining the trust of the public and policy regulators is paramount. Hype and exaggerated claims are counterproductive to developing adaptive and ethically sound regulatory models responsive to stakeholder concerns.