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• W2121315512 abstract "The studies by Scott and coworkers1 and Rice and coworkers,2 included in this issue of TRANSFUSION, are part of a growing body of research that broaches the question of—and, to some extent, implicitly advocates for—the use of stored blood bank blood for medical research projects not directly related to blood safety. As noted below, this interest in piggybacking research studies on existing methods of biospecimen collection and storage is not specific to blood banks. It is, rather, part of a much more general attempt to locate and capitalize on what are increasingly understood as biospecimen “resources.” However, precisely because blood banking both depends on and helps to create a community-oriented ethic of donation, blood banks are different from many of the other institutions to which researchers are turning in their search for biospecimens. On the one hand, blood bank administrators interested in making their stored blood samples available for research uses beyond that of blood safety cannot necessarily apply the ethical considerations developed for other kinds of institutions in the health care and health research landscape. On the other hand, the unique role played by blood banks means that they may be especially well positioned to play a central role to formulate a new social contract that explicitly links the ethic of donation with the goal of medical research. Although medical research has long relied on human biospecimens, the completion of the Human Genome Project (HGP) in 2003 has encouraged a widespread consensus among health care professionals, medical researchers, and policy makers that we are at the cusp of a revolution in medicine, a sea change in the relationship between medical research and medical care that is often captured in phrases such as “personalized medicine” and “reclassification of diseases.” These various groups are also generally in agreement that fulfilling these promises of the genetics and genomics revolutions (as well as the other -omic revolutions) will require that medical researchers gain access to large collections of human tissues or fluids and associated clinical—and, if possible, lifestyle and environmental—data.3-8 While much smaller and more specific collections of biospecimens were adequate for research on Mendelian diseases, these earlier collections are generally deemed insufficient for research that seeks to establish correlations among genotypes, environmental exposures, and risks for a variety of medical conditions. There is less agreement on precisely how large such biospecimen collections must be in order to be useful, and determinations of size depend to some extent on particular research goals. In general, commentators are agreed that the bigger such collections, or “biobanks,” can be, the better. Francis Collins (the current director of NIH), for example, has been particularly vocal about the need for a national collection that draws samples and data from at least half a million people, and others have echoed his call for collections that draw biospecimens from hundreds of thousands of subjects.9,10 It is by no means clear how, precisely, such biospecimens and associated data can or ought to be collected, especially in the United States. In European countries such as Iceland, Austria, Denmark, and Sweden, national health care systems have allowed medical researchers access to large volumes of biospecimens and data that have been collected and stored in a relatively uniform manner.11-13 Although only a small number of European countries have directly drawn on their national health care systems in this way, projects such as the UK Biobank are able to draw upon the generally perceived legitimacy of the state-citizen relation by encouraging research subjects to think of their participation in a national biobank as an act of civic virtue.14 US researchers are neither able to draw on a national collection nor can they rely on an ethic of nationally oriented blood or tissue donation. Thus, although tens of millions of biospecimens are collected by different US groups every year,15 it is not clear whether this decentralized process of biospecimen collection can result in accessible large-scale collections. This discrepancy between the large volume of biospecimens collected yearly in the United States and the very small number of samples to which any particular researcher has access has produced something like a “prospector mentality” among medical researchers, encouraging a sometimes fevered search for ways of gaining access to a resource that seems to remain tantalizingly just out of reach. At least three different strategies have been developed to gain access to biospecimen resources. Some researchers have advocated the creation of de novo/biobanks, arguing that a viable biospecimen resource can be established only if it is planned as such from the start (e.g., Collins's proposal for 500,000-person collection). Large-scale de novo collections are, however, quite expensive, and currently there seems to be little Congressional support for this kind of proposal. Others have advocated networking together existing smaller tissue and blood sample collections to create a large-scale collection. Although an attractive idea, it is not yet clear whether differences in sample collection and data annotation protocols employed by individual biospecimen collections can indeed be overcome by a network. The fact that the high hopes of the National Cancer Institute for a National Biospecimen Network16 have been replaced by the much more modest goal of encouraging biospecimen “best practices” among researchers should give advocates of the networking strategy pause.17 A third strategy, repurposing, involves creating biobanks from “waste” tissues or fluids collected for other—usually clinical—purposes. Vanderbilt Medical Center's BioVU DNA Databank, for example, stores “waste” blood drawn in the context of regular clinical visits to create a research-oriented DNA registry, while in Europe, the million-plus biospecimens included in Genome Austria Tissue Bank were drawn from pathology samples deemed to be no longer necessary for clinical use.11 The strategy of repurposing has arguably been more successful than either the de novo or the networking strategy in actually making large numbers of biospecimen resources available for research. However, it is also a strategy that raises a number of difficult ethical issues. Since by definition repurposing depends on employing for research biospecimens that were originally collected for another purpose (e.g., clinical care), this strategy can make it difficult to determine whether informed consent for research has been freely given. If individuals are asked to consent to clinical care on the same form as that on which they are asked to consent to the use of waste blood or tissues for research, for example, will these patient-subjects truly understand that they are free to reject the research use of the biospecimens without endangering the clinical care they receive?18,19 From this perspective, the studies by Scott and coworkers and Rice and coworkers are especially useful, for they bring to the fore many of the issues at stake in repurposing biospecimens collected by blood banks. As Rice and coworkers note, “[b]lood banks may be uniquely positioned to conduct large genetic epidemiologic studies,” and both studies suggest that a large percentage of current blood donors may be willing to allow blood that is “waste” from the point of view of the purpose for which the donor visited the center—namely, blood donation for transfusion support of patients—to be used for research unrelated to blood safety. This approach is already employed by some blood collection centers (e.g., Blood Systems), and others have proposed employing existing biospecimens originally collected for blood safety research, such as the National Heart, Lung, and Blood Institute Biologic Specimen Repository, for research focused on non–blood safety questions.20 However, the studies by Scott and coworkers and Rice and coworkers also bring up a more general question—namely, is the repurposing of blood bank stored blood an expansion, or a fundamental transformation, of the mission of blood banking? The answer to this difficult question depends in part on how one defines the community that is to be helped by a blood bank. Insofar as blood banks are understood as means for providing help for an existing community—a community that exists in the present and of which the donor is a member—then repurposing stored blood bank blood for non–blood bank research does represent a change in mission. Medical researchers, more or less of necessity, generally anticipate that the benefits of their research will occur in the relatively distant future. Researchers understand—and, one hopes, research subjects do as well—that the specific individuals who contribute to a medical research study in the present are unlikely to benefit from the fruits of that research. The practical results of such research, if they come at all, will accrue to future generations and, in many cases, are understood as requiring the help of businesses to commercialize diagnostics and therapies.21 (This timeline is true even of “translational medicine,” which still measures success in terms of years and thus still depends on that sense of a deferral of benefits upon which more traditional understandings of research are grounded.) Blood donation, by contrast, is intended to create a resource that can be used by an existing community in the present—thus, the sense of urgency that often attends calls for donations, which is cast in terms of days of supply remaining—and it is understood as a nonprofit endeavor. From this perspective, using some of the blood that is given for the health of the present community to conduct research that can only, at best, assist future generations would represent a change in the specific communities that blood banks understand themselves as serving. Whether or not donors would perceive this change to make a difference is, of course, an open question. It is not impossible that donors might become more hesitant about donating blood if they were explicitly aware of the difference between these two communities for which their blood would now be intended: on the one hand, the community of which they are a member, and on the other, a community located in the distant future, of which they are likely not a member. This possibility suggests the need for further studies like those of Scott and coworkers and Rice and coworkers. These further studies might emphasize to donors the difference between these two communities and focus more specifically on the question of whether or not donors see significant differences between donations that can be used by the present community and those that can only be exploited, if at all, by future generations. The studies of Scott and coworkers and Rice and coworkers represent first steps in this direction, but neither study poses this question directly. It may turn out, and is perhaps even likely, that the spirit of volunteerism that motivates blood bank donors will indeed be capacious enough to cover both present and future communities. If so, then the repurposing of stored specimens for non–blood bank research could in principle represent an expansion of the existing mission of blood banks, rather than a case of mission drift. If such were the case, blood banks might be, ethically, one of the best sites for the repurposing of biospecimens, for they are able to avoid the problems that arise when biospecimens collected in clinical contexts are repurposed for research. No matter what sort of informed consent procedures one puts into place, asking a sick individual who has come to a clinic as a patient to consent to accept the additional role of a research subject is to call into question the nature of the “consent” obtained in this way. However, precisely because a blood bank is not a clinic, such confusion between clinical care and research is unlikely to occur in this setting: individuals allowed to donate to a blood bank are by definition not sick, and they are presumably at the clinic because they actively desire to donate. Thus, although blood donation involves medical procedures,22 and although the results of tests on donated blood can be returned to donors in ways that have clinical value,2 unless donors begin to donate blood primarily for the sake of clinical results—that is, unless they cease to be donors and instead become patients, there is still a key difference between blood banks and clinics. What blood banks offer, in other words, is a chance to reformulate, explicitly and in the open, the social contract that links the ethic of donation with the use of human tissues. As Richard Titmuss made clear in his classic study, The Gift Relationship, blood donation is as much about establishing particular kinds of social bonds with one's fellow citizens, both present and future, as it is about health in a narrow sense.23 To make donated blood available for nonrelated research is to reformulate these bonds. This reformulation can occur either as the consequence of public dialogue or behind closed doors. A large national biospecimen resource, of the type advocated by Francis Collins, would require an explicit reformulation, for such a project would depend on an unprecedented willingness on the part of the US citizens to volunteer for such a national endeavor. Given the current lack of support for such a national project, it seems more likely that relationships between the public and their biospecimens will continue to be altered largely through various forms of “silent” repurposing, as is currently occurring in university-based health care clinics. This silent repurposing runs the very real danger that donors will become outraged if they feel that the terms of the social contract have been shifted without their knowledge, as administrators of the long-running Framingham Heart Study discovered when they attempted to link genetic donations to a for-profit company.24 Blood banks are in a unique position to contribute to public dialogue about the repurposing of biospecimens. The studies by Scott and coworkers and Rice and coworkers suggest that the blood donor population, already explicitly committed to the virtues of donation and altruism, may indeed be willing to contribute biospecimens for long-range health care research. The fact that blood banks are volunteer-based also means that the stakes of alienating the donating public are much greater than in the case of clinical populations: people will continue to come into clinics so long as they continue to get sick, but blood banks do not have this kind of built-in demand. Yet these high stakes are tied to equally expansive opportunities, for if blood bank scientists and administrators can work together and make their case to the public, blood banks can emerge as the new Framingham Heart Study of the 21st century, merging both their traditional, community-oriented form of altruism with an altruism oriented toward a much more long-range future. None." @default.
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• W2121315512 date "2010-09-01" @default.
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• W2121315512 title "Blood banks, biobanks, and the ethics of donation" @default.
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