Democratizing Science: Processes for the involvement of the public in scientific. issues and their success

Transcription

1 Courtesy of. Used with permission. Democratizing Science: Processes for the involvement of the public in scientific issues and their success Globalization, and thus the interconnectedness and interdependence of the people of the world that has developed, has opened the door for the free movement and trade of people, products and knowledge. It has also opened the door for the free movement and trade of disasters and diseases. Changes to the environment or the formation of new diseases no longer stay in the community in which they were caused they travel around the world, having both expected and also unexpected consequences. It is because of the possibility of such widespread repercussions of the advancement of science that it has become necessary for there to be the ability to know, understand and regulate scientific pursuits in a body that will look out for the best interest of the people of the world, the people themselves. In some scientific pursuits, such as xenotransplantation, genetic engineering or nuclear power, the collective risk assumed by the public is clear. Although in other scientific pursuits the collective risk may not be as clear or as large, I argue that it still exists, and for this reason, science must become more democratic. Another reason for the democratization of science is to take advantage of the strengths of the public s knowledge that differs from experts and policy makers. There is a general feeling among experts and policy makers that the general public is not informed enough or does not have the reasoning ability necessary to make a significant contribution to any discussion on science policy. The differences in the ways that experts and the public make risk valuations, is not, however, the liability it is presumed to be. 1/9

2 Instead, having risk assessed in both ways adds to the knowledge that can be used to make decisions. Aside from their qualitative risk assessment methods, the public, specifically patients who have the disease or are directly affected by the technology being developed, has a specialized knowledge that experts do not but that may prove extremely useful. In Acting Up: AIDS cures and lay expertise, 1 Collins and Pinch show how involving HIV positive individuals in designing clinical trials greatly improved the clinical trial process. In Uncertainty in xenotransplantation: Individual benefit versus collective risk, Bach, et. all argue that where the risks are collective, the public must not only be educated about the risk but must also be involved in decision making. 2 Xenotransplantation offers an example of a case where the collective risk of the public is clear. The authors propose a three-tier approach to policy development and decisionmaking to address the need for a public voice. Their proposal will be outlined and reviewed, used as an example to discuss the benefits public education and discourse in making science policy. The concerns that are raised in the public s ability to calculate risk will be discussed. Additionally, the expertise held by the public, and the benefits that can be derived from accessing that expertise will be illustrated through the involvement of the public in clinical trials for AIDS treatments. These examples will show that what is needed for the effective 1 Trevor Pinch and Harry Collins (1998), "ACTing Up: AIDS Cures and Lay Expertise." In Trevor Pinch and Harry Collins, The Golem at Large: What You Should Know About Technology (Cambridge University Press), pp Bach, Fishman, Daniels, Proimos, Anderson, Carpenter, Forrow, Robson & Fineberg; Uncertainty in xenotransplantation: Individual benefit versus collective risk; Nature Medicine, Volume 4, Number 2, Feb 1998, pg 142 2/9

3 democratization of science is an affirmation of the public s ability to effectively comprehend and evaluate science and the development of a mechanism to both educate the public and gather a representative opinion. Xenotransplantation and a Three-Tiered Approach Xenotransplantation is the transplantation of non-human cells, tissues or organs to humans. Although this presents benefits to humans, most specifically creating an endless supply of organ donors, it also creates the possibility of a new disease entering the human population. Use before complete evaluation The dilemma that exists in many aspects of science but is clearly illustrated in this case is between a potential benefit to an individual and the addition of a potential risk to the entire population specifically the attempt to balance uncertain societal risks against the palpable risks to individuals dying of organ failure. 3 The authors acknowledge the difficulty of resisting pressures to implement possibly life-saving techniques before properly addressing possible risks, nothing that the history of medical innovation has shown us unwilling to resist tangible individual benefit even in the face of unknown 3 Bach, Fishman, Daniels, Proimos, Anderson, Carpenter, Forrow, Robson & Fineberg; Uncertainty in xenotransplantation: Individual benefit versus collective risk; Nature Medicine, Volume 4, Number 2, Feb 1998, pg143 3/9

4 risk. 4 It is precisely this history that argues for the need to include the public in discussions before proceeding with the implementation of such novel procedures. Requiring the public to be involved in series of discussions on the topic ensures that the proper background research and evidence of success is evident before a process proceeds to a stage in which there is a significant amount of risk. This also reduces the ability of a single player, a powerful company or institution, to push a technology forward without taking the proper precautions. Bach, et all propose a three-tiered approach to regulate xenotransplantation with the first level of decision-making occurring at the level of social policy, the second at the institutions performing the xenografts and the third at the level of individual patients and physicians. The first level, that of social policy making, is the one with which we are most concerned. The use of xenotransplantation in a human would affect others in several ways. Not only is the general population at risk if a new disease or infection is created, but there is also an infringement on those who may interact with xenograft recipients. In order to ensure that no negative effects result from the transplant, recipients, and possibly sexual partners, will have to be monitored and kept under close surveillance for many years or even life. Patients exhibiting signs of a possible xenosis would have to be quarantined. The lack of precedent in dealing with any situation of this nature leaves many questions unanswered in deciding how to deal with monitoring, surveillance and other aspects. Bach et all propose that social deliberations be used to develop processes and make decisions as to how xenotransplantation should proceed, establishing a series of 4 Ibid, pg144 4/9

5 experiments proceeding only to the point where risk reaches a pre-established level, at which results are reviewed and the program is re-evaluated. In order for these discussions to be appropriate, the authors describe three aspects of the process which should be made clear. First, the life-saving potential and impact on medicine success would allow. Second, any possible risk with possibilities of controlling it and finally the process by which future decisions would be made. 5 Alternative forms of Risk Assessment This risk calculation the public would be called to make poses another interesting situation. Due to the lack of experience with xenosis, the degree of risk and capacity of to deal with such risks are as of yet largely unknown. This makes a risk calculation in this situation extremely dependent of perceptions, more so than in most discussions. Risk calculations made by lay people tend to be very different in nature than those made by experts. While experts rely on the degree of likelihood that mortality may result from the practice the public s view of risk is increased if the risk is mysterious as opposed to familiar, uncontrollable, evokes feelings of dread or suggests a potential for catastrophe. While experts and policy makers tend to see this difference in calculation criteria as a problem with allowing the public decision-making authority, others, such as Perrow, argue that they are simply taking into consideration aspects of life, culture and values that 5 Bach, Fishman, Daniels, Proimos, Anderson, Carpenter, Forrow, Robson & Fineberg; Uncertainty in xenotransplantation: Individual benefit versus collective risk; Nature Medicine, Volume 4, Number 2, Feb 1998, pg 143 5/9

6 cannot be quantified and accounted for in the mathematical models and calculations done by risk assessment firms. One of the most prominent factors that is not projected by traditional risk assessment models is the social class distribution of risk. 6 Traditional risk assessment methods can still be employed and used to educate the public. Requiring a public discourse, then, is a way to complement traditional risk assessments with a risk assessment method that can compensate for intangible and unquantifiable aspects. Clinical Trials and Public Influence The experience scientists working on a cure for AIDS in the mid 80 s is an example of how the proper involvement of the public can serve to the benefit of all involved and the kind of expertise lay people can bring to traditional experts. Non-compliance has always been a concern of medical professionals administering clinical trials. It is an even more salient issue when the drugs being tested are for a life-threatening disease, and placebo trials require that no other treatments can be used. Patient groups and community doctors, in response to the delays and compliance issues which faced official trials, designed and implemented their own community-based trials without placebos or bureaucratic delays and with high levels of compliance. In 1989, the FDA approved the use of a drug, aerosolized pentamide, based solely on data from community-based research. 6 Charles Perrow, Normal Accidents: Living with High-Risk Technologies (Princeton University Press, 1999), 6/9

7 however, a disastrous view. Although the public risk of most scientific endeavors may not be as dramatic or likely as those that exist from xenotransplantation, they nonetheless exist, and if the public is going to have to bear that risk, it deserves a place at the decision-making table. The first-hand knowledge base of the public and their ability to assess risk in less quantifiable and more qualifiable ways has proven to be an important factor in setting science policy in increasing efficiency and reliability of results, as with clinical trials, and adding human and values based factors into risk calculations. Involving the pubic, and thus democratizing science policy, has proven itself to be beneficial when it has been implemented. It is both the responsibility and to the benefit of those who may be asking the public to assume a risk to include the public in discourse. Undoubtedly, there are many additional benefits to the democratization of science. Involving the public can ensure that issues that may be important to the public at large but largely ignored by the scientific community, due to lack of funding or discrimination against the population which it traditionally affects. Conversely, it can ensure that the merits of issues that may require a large expenditure of public funds but only affect a small community are properly discussed. Altogether, these examples of successful democratization of science show that all that is needed are two things an effective mechanism to properly inform the public and an effective mechanism to collect their decisions. If the public is believed to be capable of having a significant contribution to the discourse on scientific issues, and their views are accepted as knowledgeable and valuable, the benefits of public participation in science can be begun to be reaped immediately. 7/9

8 however, a disastrous view. Although the public risk of most scientific endeavors may not be as dramatic or likely as those that exist from xenotransplantation, they nonetheless exist, and if the public is going to have to bear that risk, it deserves a place at the decision-making table. The first-hand knowledge base of the public and their ability to assess risk in less quantifiable and more qualifiable ways has proven to be an important factor in setting science policy in increasing efficiency and reliability of results, as with clinical trials, and adding human and values based factors into risk calculations. Involving the pubic, and thus democratizing science policy, has proven itself to be beneficial when it has been implemented. It is both the responsibility and to the benefit of those who may be asking the public to assume a risk to include the public in discourse. Undoubtedly, there are many additional benefits to the democratization of science. Involving the public can ensure that issues that may be important to the public at large but largely ignored by the scientific community, due to lack of funding or discrimination against the population which it traditionally affects. Conversely, it can ensure that the merits of issues that may require a large expenditure of public funds but only affect a small community are properly discussed. Altogether, these examples of successful democratization of science show that all that is needed are two things an effective mechanism to properly inform the public and an effective mechanism to collect their decisions. If the public is believed to be capable of having a significant contribution to the discourse on scientific issues, and their views are accepted as knowledgeable and valuable, the benefits of public participation in science can be begun to be reaped immediately. 8/9

9 Bibliography 1. Bach, Fishman, Daniels, Proimos, Anderson, Carpenter, Forrow, Robson & Fineberg; Uncertainty in xenotransplantation: Individual benefit versus collective risk; Nature Medicine, Volume 4, Number 2, Feb Trevor Pinch and Harry Collins (1998), "ACTing Up: AIDS Cures and Lay Expertise." In Trevor Pinch and Harry Collins, The Golem at Large: What You Should Know About Technology (Cambridge University Press) 3. Charles Perrow, Normal Accidents: Living with High-Risk Technologies (Princeton University Press, 1999) 9/9