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6 Public Engagement and Animal Research Regulations Animal research regulations, laws, and policies undergo continual re- view and revision as new technologies, tools, and techniques alter the way in which animals are used in biomedical research. The process of updat- ing regulations most recently occurred with the revision of the European Union (EU) directive. As this process demonstrated, the development and implementation of new or modified regulations are also directly impacted by changes in public opinion. Given this, any discussion of the reasons for the establishment of animal research regulations, their impact on research, and opportunities for harmonization includes an examination of how the use and regulation of animals in neuroscience research is communicated with the public. As MacArthur Clark noted, public opinion is an important component of a balanced regulatory system that takes into account public confidence, scientific quality, and assurances of animal welfare. With this in mind, the session, which included panelists from academia, patient advocacy, and the media, discussed engagement of the public, politi- cians, and the media on animal research issues, and opportunities to com- municate with non-researchers on the regulation of the use of animals in neuroscience research. (Key points are summarized at the end of the chapter in Box 6-1.) REACHING OUT FROM ACADEMIA Randall Nelson, professor and associate vice chancellor for research at the University of Tennessee Health Science Center, shared his perspec- tive as a mid-level administrator. He described what is a bit of reluctance 55

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56 INTERNATIONAL ANIMAL RESEARCH REGULATIONS on the part of investigators to engage the public and the press about both animal use in research and the regulations that govern the use. Some fear that discussing their research will make them targets and they perceive the potential for harm as very real, noted Nelson. In addition, the benefits of engaging the public in these issues may not always be immediately tangible to scientists. Nelson informally surveyed his colleagues and found that many perceive the scientific press to be understanding, rational, accurate, and unbiased. Others suggested that the general press, however, was nega- tively perceived by some, aligned with specific interests, and interested in the story, but not necessarily in accuracy. Scientists are required to under- stand the regulations and policies governing animals in research. Many of the scientists who spoke with Nelson believe the press does not fully understand these regulations, but that they have a responsibility to “get it right” when reporting to the public. The question then, Nelson asked, what is “right”? Scientific progress depends on public perception and acceptance, Nelson said, and he offered several observations and suggestions regarding methods to increase opportunities for success in engaging the public: Public confidence may increase with public dialogue. Information • fosters understanding, and understanding fosters appreciation. The cycle of mistrust must be interrupted for progress to be made, and who better to do that than those directly involved in the science, Nelson asked. Increasing opportunities for interfacing with the public. Frank dis- • cussions with the public about animal research regulations and the use of animals in science may dispel the notion of “ivory towers and dark secrets which reside within research laboratories.” Train scientists to communicate clearly about animal research. • Having someone else communicate for the scientific community dilutes the message, Nelson noted. Connecting a scientist’s name and face with a news item could help foster a relationship and build trust. In speaking about their research, Nelson suggested that scientists should Give general examples rather than elaborating on specifics. o Consider the audience’s previous knowledge when delivering o information. Describe efforts by scientists, regulators, and government agen- o cies to minimize animal numbers and pain and distress. Help people understand the process of cost-benefit analyses o when using animals in research. Ensure accurate representation of the science. Public confidence o may increase if the public has access to accurate information.

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57 PUBLIC ENGAGEMENT AND ANIMAL RESEARCH REGULATIONS Explain why an animal model was chosen, and the drawbacks o of other approaches. While scientists often discuss why a par- ticular model was chosen, they rarely talk about why other possibilities were rejected. Engage patients and patient advocacy groups. People living with • disease hold particular interest in learning about new research. Promote appropriateness of use of animal models within the scientific • community. Regulations require justification of the use of animals. However, scientists assume a moral and ethical responsibility when agreeing to do animal research, Nelson said, and should understand that the use of animals in research is a privilege, not a right. MEDIA COVERAGE OF ANIMAL RESEARCH Mark Henderson, science editor for The Times in London, described how the media discourse on animal experimentation has changed in the United Kingdom. Ten to 15 years ago, there was a significant amount of opposition to the use of animals in research, he said, and few scientists who engaged in animal experimentation were willing to publicly discuss their research. This meant journalists had few sources for a scientific viewpoint on studies involving animals. Henderson noted that media coverage at the time tended to report negative representations of animal research more often. These included the use of graphic images of animals during experimentation. Henderson noted that many of the pictures published were taken quite a long time ago and from sources outside the United Kingdom. Some of the media, he noted, has always tried to portray animal re- search accurately, but this has proven difficult as again, there were few scientists willing to discuss the use of animals. It was also difficult to obtain up-to-date images of the work that was actually done in labs. As a result, the political climate toward animal experimentation in the United Kingdom was lukewarm, Henderson noted. Around 2002 to 2003, a number of things came together that changed the conversation about animal research in the United Kingdom. The Sci- ence Media Center was formed to support scientists working in engaging the public.1 From a “safety in numbers” perspective, a single voice be- came the immediate magnet for the protests, but hundreds of researchers talking about animal research made it much harder to single individuals out, Henderson observed. Nelson mentioned that individuals living with disease are knowledge- able about the use of animals in research and can also take part in public 1 See http://www.sciencemediacentre.org/pages/.

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58 INTERNATIONAL ANIMAL RESEARCH REGULATIONS engagement efforts. Henderson cited the contribution of the late Laura Cowell, a cystic fibrosis patient who as a teenager in 2002 began speaking about her support for animal research because it was essentially keeping her alive. Cowell’s efforts had a strong effect because it personalized the issue, making the animal research story one that was about actually helping people. A significant secondary effect, Henderson noted, was that it also emboldened scientists. A new trend to discuss the use of animals in research, both with the media and directly with politicians, started to develop among scientists. Around 2005, Henderson said he began to receive invitations to visit labo- ratories conducting research with animals, so he could see firsthand what was involved. One recent development as a result of the increased dialogue between scientists and the media is that the use of animals in research is now described incidentally in the high-end British media (e.g., The Times, The Guardian, and the BBC), Henderson noted. For example, recent cov- erage in The Guardian of a study published in Nature on stem cells and cardiac repair, casually mentions in the article subtitle the fact that mice were involved in the research. There is no controversy; it is just presented as a fact of the study. Henderson noted that more could be done to increase dialogue concern- ing the use of animals in science. For scientists who do research involving animals, including information about the role of the animals when they talk to the media could be one method. Do this, he stressed, in an incidental, normative fashion. The more that researchers discuss animals and animal regulations as an integral part of medical research, the more people will actually become aware. Engagement works, Henderson said. Public opinion over the 10 years in which the scientists have made a real effort to engage has increased steadily. He went on to say that unconditional support of the statement “research on animals is acceptable” has doubled in 10 years, from 32 percent in 1999 to 60 percent in 2009, and conditional acceptance hovers around 85 to 90 percent in the United Kingdom. The relationship between science and the media is not symmetrical, Henderson observed. Scientists have a responsibility, particularly if they are publicly or charitably funded, to talk publicly about their research. Jour- nalists do not have a responsibility or duty to be accurate (although many strive to be). Journalists want to tell stories and biomedical research has an excellent story to tell. Henderson suggested that scientists talk about animal research accessibly and often, without exaggerating the benefits. THE ROLE OF PATIENTS AND PATIENT GROUPS Timothy Coetzee, chief research officer of the National Multiple Sclerosis (MS) Society, discussed animal research regulations from the patient advocate

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59 PUBLIC ENGAGEMENT AND ANIMAL RESEARCH REGULATIONS perspective. The National MS Society invests about $40 million in research, funding about 325 projects worldwide, at least a third of which have an animal approval associated with them. Animal models will continue to be necessary in MS research for the foreseeable future, Coetzee noted. Due to the nature of the disease, alter- natives to some of the models for drug discovery and development are not currently possible. Coetzee described some of the animal models used in MS Society–funded research. The experimental allergic encephalomyelitis (EAE) model in a non-human primate is as close as science has come thus far to an animal model for MS. Few labs use it because of its difficulty and Institutional Animal Care and Use Committee (IACUC) concerns about the model’s profoundly debilitating effects. There are viral demyelinating models (Theiler’s virus, mouse hepatitis virus), that mimic progressive forms of the disease. The problem, particularly with the Theiler’s model, is that few pharmaceutical companies want to work with a viral demyelinating model; it is not clean and no one wants to introduce viruses into their ani- mal colony. Other researchers have used chemically induced demyelination (e.g., cuprizone, lysolecithin, ethidium bromide). This is not a model of MS, as there is no autoimmune inflammation, only demyelination. Regardless, these models are powerful tools for understanding how to rebuild myelin in the nervous system. Coetzee noted that the MS patient community sup- ports the society’s investment in animal research because they believe that without it, current therapies would not be available. The National MS Society’s policies on animal research are relatively straightforward, Coetzee explained. Applicants for funding are required to provide the Society with an IACUC approval (or the equivalent outside the United States) before any funds are released. The Society also conducts annual monitoring. Overall, the National MS Society’s philosophy is that animal research is essential for progress in MS research. The society encourages the devel- opment of alternative models. The society also publicly states its support for animal research, but is careful not to draw attention to animal research unless needed. Session chair Frankie Trull opined that defending and supporting ani - mal research is not necessarily the same as promoting the best outcomes for human health, and suggested that scientific scrutiny of animal experi- ments could be a role for patient advocacy groups. Coetzee responded that the National MS Society does consider whether an animal model is appropriate when granting funds and agreed that this is an element of oversight that patient advocacy groups can apply. Patient advocate organizations, as well as commercial organizations, government, and all funders, bear a responsibility to ask what the costs of these cures and treatments developed.

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60 INTERNATIONAL ANIMAL RESEARCH REGULATIONS As patient advocates, Coetzee said, patient groups have to discuss animal research. As an organization that funds research, the National MS Society has a responsibility for effectively communicating this research to the community. The public can appreciate the nuances of animal research, he said, but communication is most effective when it is very brief and very focused. Coetzee suggested that scientists think in terms of headlines when preparing to discuss research. It is also important to pay attention to shift- ing approaches in media, especially social media. BOX 6-1 Summary of Session Points Scientists and Institutions • nvestigators may be reluctant to engage the public and the media. Many I investigators: o ear that discussing their work involving animals will make them targets; f o o not see the benefit of engaging the public; and/or d o ee the general press as biased. s • nstitutions could invest in training and equipping scientists to speak to the I media and the public. The Media • uilding individual relationships with journalists and media might increase B communication between the groups. • ducation is not necessarily a responsibility of mainstream media. E • ome media outlets seek to attract customers by earning a reputation for being S trustworthy and accurate. • ore could be done to increase dialogue about the use of animals in science. M Patient Groups • eople living with disease can be the best advocates for disease prevention P and cure. • atient advocacy groups could serve an oversight role in scrutinizing the sci- P entific value of projects using animals before choosing to fund them. Engaging the Public • ublic engagement and education can increase support for use of animals in P research. • ommunication may be most effective when it is brief and focused, with the C role of animals mentioned incidentally. SOURCE: Individual panelists and participants.