Professional Ethics Report: Volume XXIV, Number 4, Fall 2011

 Professional Ethics Report: Volume XXIV, Number 4, Fall 2011

Professional Ethics Report (PER), which has been in publication since 1988, reports on news and events, programs and activities, and resources related to professional ethics issues, with a particular focus on those professions whose members are engaged in scientific research and its applications.

Each quarterly issue is comprised of a cover story addressing one particular issue or event, sometimes written by an expert outside the AAAS; a series of timely, in the news stories; brief updates from the societies; and useful resources and announcements.

PER was first published on the web in the Spring of 1995. Archives of Professional Ethics Report are available here.


Volume XXIV, Number 4, Fall 2011

[Download the PDF]

Cover Story

In the News

Resources

Announcements


Contributing Staff:

  • Mark S. Frankel, Editor
  • Nicole Carlozo, Co-Deputy Editor and contributing author
  • Rebecca Carlson, Co-Deputy Editor and contributing author
  • Emil Kiner, Contributing author
  • Lindsay Pascal, Contributing author

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This newsletter may be reproduced without permission as long as proper acknowledgement is given. ISSN: 1045-8808


Cover Story

Public and Media Engagement with Regenerative Medicine

Richard Elliott

Richard Elliott recently completed his doctoral thesis on the public perception and cultural framing of regenerative medicine at the University of Nottingham, UK. He holds a BSc in molecular biology, a Master’s degree in science communication, and currently works in research communication for Diabetes UK. He was an intern with the AAAS Scientific Freedom, Responsibility and Law Program in 2005

Regenerative medicine is an emerging field of medical biotechnology that aims to regenerate tissues and restore biological function lost through disease, trauma, aging or congenital abnormalities. It is of particular interest to scientists, policy makers and the public because it touches not only on innovations in molecular and cellular biology, but also on a range of ethically controversial issues related to the origins of stem cells and the translation of scientific research from ‘bench to bedside’. One objective of this field is the production of cell-based patient-matched therapies, with much being made of their potential to treat the degenerative diseases associated with aging Western populations. The cell therapy industry is beginning to enjoy commercial success, with sales in excess of $1 billion a year [1], and clinical trials of adult, fetal and human embryonic stem cell treatments are now underway in the US and the UK. However, the therapeutic promise of stem cell research has yet to translate into the wide range of novel treatments often predicted, and a number of health risks [2] and practical barriers to the clinical uptake of such products are still to be addressed [3]. Consequently, the political and commercial legitimacy of regenerative medicine continues to rely on the speculative value of stem cells, and the hopeful anticipation that surrounds practices such as egg donation and umbilical cord blood banking [4, 5].

Public attitudes and expectations

As the relevance of scientific and medical knowledge for everyday social life has increased, traditional boundaries between specialist expertise and the knowledge of non-expert publics have begun to blur. The erosion of public trust in experts in the wake of scientific controversies suggests that public perceptions of science, in relation to wider political, economic and regulatory concerns, are becoming increasingly sophisticated [6]. Similarly, ‘expert patient’ and ‘health consumer’ initiatives have attempted to improve treatment outcomes and reduce costs by encouraging chronically ill patients and the general public to seek out medical information, engage in cooperative partnerships with medical professionals, and self-manage their own care [7, 8]. Some have argued that the quality and depth of non-expert understandings have been overstated, and that they do not equip people with the insights necessary to make informed diagnostic or treatment decisions, evaluate new technologies, or validate the decisions of scientists and doctors [9, 10]. Others contend that an understanding of public perceptions and cultural attitudes can help experts to engage with the public and respond more effectively to their concerns and anxieties [11, 12].

The expectations that surround new areas of science and technology emerge from unstable fields of language and practice in which different groups of stakeholders vie to secure competing visions of the future [13]. When expressed in public, such expectations are often ‘performative’ rather than merely predictive because they help to enroll support, mobilize resources, legitimate actions, and guide interactions in the present [14]. Expectations can also inscribe social meanings and narrative ‘scripts’ for future technological development in relevant artifacts, such as stem cells or the human genome, so they provide a focal point for actions and ideas and come to embody one vision of the future but exclude others [15, 16]. Expectations can therefore help expert stakeholders to maintain their own authority by offering publics and policy makers a strategy for the management of uncertainty [17]. Growing competition for funding and social and political legitimacy also encourages scientists to contribute to over-optimistic expectations by downplaying the risks and exaggerating the short-term benefits of their own particular field [18, 19]. Although ‘hype’ of this sort can be helpful in securing initial funding and recognition, it might ultimately harm future research by contributing to an atmosphere of disillusionment, blame and mistrust that undermines public support [20].

Public attitudes and expectations and their framing in the mass media have proven to be an important factor in the legitimization, social acceptance and implementation of a wide range of biomedical technologies, and the same is likely to hold true for regenerative medicine. The political lobbying of health advocacy and religious groups has already helped shape legislation on stem cell research. Now the continued investment of businesspeople, regulators, research subjects and patients is required to maintain existing trajectories of research and clinical translation [14, 18, 21].

Regenerative medicine in the media

In recent years, media coverage of regenerative medicine has been dominated by hyperbolic expectations that highlight the extraordinary medical ‘potential’ of stem cells and the ‘revolutionary’ nature of projected therapeutic products. Perhaps in an effort to respond to moral doubts and ethical challenges, scientists and journalists have encouraged the aggressive pursuit of novel therapies by amplifying excitement and ignoring or actively erasing continuities with existing technologies and with setbacks, such as the Hwang cloning fraud [19]. Furthermore, close similarities between news stories and scientific press releases and the frequent repetition of direct quotes from a limited pool of scientists and clinicians suggest that journalists often simply regurgitate the subjective views of particular experts with minimal contextualization or critique, effectively allowing them to set news agendas. Such views frequently provide a misleading portrayal of scientific research (as a linear series of ‘breakthroughs’ ) and fail to articulate the uncertainty, caution, ambivalence and sensitivity toward patient autonomy that many stem cell scientists express elsewhere [22].

In conjunction with expert views, the dramatic narratives of patients invest media stories on regenerative therapies with emotive weight, but risk further exaggerating their power, simplicity and immediate availability, just as media stories on the Human Genome Project have exaggerated the impact of genomics [23]. The medical progress of patients involved in trials of regenerative medicine products are already the subject of intense media coverage and, despite Geron’s recent termination of the first ever human trial of an embryonic stem cell t