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Collectivizing Rescue Obligations in Bioethics a

Jeremy R. Garrett a

Children's Mercy Bioethics Center and University of Missouri–Kansas City Published online: 12 Feb 2015.

Click for updates To cite this article: Jeremy R. Garrett (2015) Collectivizing Rescue Obligations in Bioethics, The American Journal of Bioethics, 15:2, 3-11, DOI: 10.1080/15265161.2014.990163 To link to this article: http://dx.doi.org/10.1080/15265161.2014.990163

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Target Article

Collectivizing Rescue Obligations in Bioethics

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Jeremy R. Garrett, Children’s Mercy Bioethics Center and University of Missouri–Kansas City Bioethicists invoke a duty to rescue in a wide range of cases. Indeed, arguably, there exists an entire medical paradigm whereby vast numbers of medical encounters are treated as rescue cases. The intuitive power of the rescue paradigm is considerable, but much of this power stems from the problematic way that rescue cases are conceptualized—namely, as random, unanticipated, unavoidable, interpersonal events for which context is irrelevant and beneficence is the paramount value. In this article, I critique the basic assumptions of the rescue paradigm, reframe the ethical landscape in which rescue obligations are understood, and defend the necessity and value of a wider social and institutional view. Along the way, I move back and forth between ethical theory and a concrete case where the duty to rescue has been problematically applied: the purported duty to regularly return incidental findings and individual research results in genomic and genetic research. Keywords: genetic research, moral theory, research ethics

Few situations capture attention and compel action, in medicine and elsewhere, like opportunities to rescue people in dire predicaments. The impulse to rescue is powerful, immediate, and frequently gives rise to an unquestioned (and unquestionable) duty to intervene. Indeed, this impulse powers what Nancy Jecker (2013) has called “rescue medicine”—an entire medical paradigm whereby vast numbers of medical encounters are treated as rescue cases. However, there is more to consider with rescue than meets the eye. Think of the old joke where a priest tells one man that “smoking while praying” is utterly disrespectful to religion but assures another man that “praying while smoking” is perfectly fine since you can always pray whenever you want—a lot depends on how things are framed. Much of the intuitive power of the rescue paradigm, I suggest, lies in the way that it conceptualizes rescue cases—namely, as unanticipated, unavoidable, random events for which context is irrelevant. In this view, rescue is fundamentally an interpersonal interaction involving only a small number of people and fully understandable by reference to individual beneficence. In what follows, I critique the basic assumptions of the rescue paradigm by reframing the context, reimagining the ethical landscape in which rescue obligations are understood, and thus rethinking the conclusions that we ought to draw about the duty to rescue. To be clear up front, my aim is less to interrogate the duty to rescue itself, but more to call into question the rescue paradigm’s

typical hasty application of this duty to a wide variety of cases. Most importantly, I argue that this approach to rescue often obscures and distorts important ethical considerations that need to be clearly uncovered and carefully explored. My specific strategy for leveraging this critique is as follows. I begin by outlining and critiquing the rescue paradigm’s framing of cases. I then defend the necessity and value of a wider social and institutional view of rescue duties. Finally, I explore the implications that this reframing has for our ethical discourse. Along the way, I move back and forth between ethical theory and a concrete case where the duty to rescue has been problematically applied: the purported duty to regularly return incidental findings and individual research results in genomic and genetic research. I use this case to illustrate both the notable limitations and deficiencies of the short-term individualized perspective pervading rescue medicine, as well as the notable strengths and advantages of a wider social and institutional perspective.

THE WEAKNESSES AND LIMITATIONS OF THE RESCUE PARADIGM I begin with a broad critique of the key assumption embedded within the rescue paradigm—namely, that rescue obligations can properly be understood and appreciated without reference to social context or background conditions. Indeed, for many proponents of the rescue

Address correspondence to Jeremy R. Garrett, PhD, Children’s Mercy Hospital, Children’s Mercy Bioethics Center, 2401 Gillham Street, Kansas City, MO 64108, USA. E-mail: [email protected]

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paradigm, just three necessary and jointly sufficient conditions establish a duty to rescue in a given case1 1. High probability of significant harm-avoiding benefit for the endangered. 2. The rescuer is suitably positioned and capable of providing that benefit. 3. Low burden on the rescuer. In other words, operating within the rescue paradigm, one need not consider:

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 Whether there are or will be others in need of rescue

whom one also could benefit (or, for that matter, whether there have been plenty of people whom one has already rescued).  Whether choices could have been made ahead of time that would have prevented the case from arising or put others (perhaps better prepared and equipped) in a position to rescue.  Whether there might be burdens that extend beyond the rescue event and/or to others besides the rescuer. Instead, the rescue paradigm assumes there are simply the endangered and the rescuer placed together under the stated conditions and disconnected from all else. History and context become almost irrelevant, larger patterns are ignored, and questions about what led to the need for rescue—“predicate acts” (Koch 2012, 99)—and whether it could have been avoided too often go unasked. Unsurprisingly, the ethical “solutions” that get proposed for these cases tend to be temporary fixes, beholden to a single overriding value, that do nothing to address the root causes of the problem. Consider, as a first example, the staple thought experiment from introductory philosophy classes of the drowning child whom we stumble upon while walking to work (Singer 1972). The case traditionally turns on a few critical details: (1) lifting the child from the water has a high probability of significant harm-avoiding benefit, (2) we are (by 1. Some accounts of rescue obligations propose that more or fewer conditions establish a duty to rescue. For example, Beauchamp and Childress propose five conditions that are necessary and jointly sufficient to establish a beneficence-based obligation to rescue (Beauchamp and Childress 2009, 202). On the other hand, Scanlon’s trimmer Rescue Principle holds only that “if you are presented with a situation in which you can prevent something very bad from happening, or alleviate someone’s dire plight, by making only a slight (or even moderate) sacrifice, then it would be wrong not to do so” (Scanlon 1998, 224). The three conditions I propose include each of those proposed by Beauchamp and Childress (as well as Scanlon), but reformulate them for the sake of economy and ease of analysis. Regardless of whether one prefers a longer or shorter list, though, the important point about Beauchamp and Childress’s list of five conditions and Scanlon’s Rescue Principle is that they both assume that rescue obligations properly can be understood and appreciated without reference to social context or background conditions.

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stipulation) the only ones around capable of wading in and fetching the child, and (3) we will incur only trivial costs in saving the child, possibly ruining our shoes or ending up a bit behind schedule or late to work. Absent additional contextual information or possible alternatives, it is difficult not to concede the intuitive power of our duty to rescue the child in this case. Extrapolating from this concession, however, many proponents of the rescue paradigm have defended a more general positive duty to rescue in all cases where the three morally relevant conditions are present. Unfortunately, this narrow tripartite framing of what is and is not morally relevant to our assessment of the case obscures a host of important questions that lie outside the stipulated details offered.  How did the child end up in this predicament in the first

place?

 Is this an isolated incident or is there a persistent pattern

of drowning accidents?

 If there is a larger pattern, would fences or lifeguards

make more sense than relying on random untrained pedestrians?  What are we headed to do when we are delayed by the drowning child?  Would our obligations be different if our being diverted by the rescue threatened other people’s lives?  What if we routinely encountered drowning children (such that the cumulative effects of many rescues became significantly onerous)? These and many other related, yet unexplored (indeed, unnoticed), questions could potentially change our evaluations of rescue obligations were they not excluded by the traditional framing of ethical duties within the rescue paradigm.

THE RESCUE PARADIGM IN GENOMIC RESEARCH Now consider an issue in contemporary bioethics where the duty to rescue has been claimed to apply. Though it may not be the most obvious example on its face, many have argued that genomic researchers are obligated to “rescue” some research participants by disclosing significant findings about their health profile that are (or perhaps could be) discovered in the course of research (Bredenoord et al. 2011; Meyer 2008; Ulrich 2013). Indeed, in a recent unpublished study looking at the views of more than 700 institutional review board (IRB) members regarding the ethical basis for a duty to return individual research findings, the duty to rescue was the most widely cited ethical rationale for disclosing results, with 84% of IRB members claiming that it provided a strong moral basis (Berkman et al. 2013). Working within the rescue paradigm, then, the duty to rescue arises whenever a piece of genomic information has a high probability of providing significant harm-avoiding benefit to a research participant via its

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disclosure and the researcher is capable of providing this benefit at a sufficiently low burden. Akin to the case of the drowning child, this conclusion seems intuitively credible when viewed as a random isolated incident that involves just two individuals, the rescuer and the endangered. However, when viewed from a social or institutional perspective as a long-term policy adopted on a mass scale, disclosure as rescue raises a number of important questions regarding the ethical duties of researchers and research institutions:  Do researchers’ rescue obligations extend to future

patients in addition to current research participants?

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 If so, are these obligations compromised by the signifi-

cant costs in terms of infrastructure and personnel required to responsibly disclose individual findings?  Assuming that discovering and disclosing individual findings is a valuable social practice,2 is it just and socially beneficial to distribute all the burdens and costs of this practice to researchers and research institutions, especially as research budgets continue to shrink?  Are researchers even capable of adequately performing the often complicated and time-consuming task of disclosing individual findings?  If genomic screening for some condition is thought ready for the proverbial “prime time,” shouldn’t it be transitioned to a population-wide context rather than be kept within a research context where it will benefit only a relative few? These questions urge caution and further reflection before imposing an ethical duty on researchers to disclose individual findings even if they are uniquely positioned to rescue certain research participants and even if, in any particular case, the standard conditions of high (harm-avoiding) benefit, adequate rescue capacity, and low burden are satisfied. THE NEED FOR A LONG-TERM, COLLECTIVIZED PERSPECTIVE OF RESCUE DUTIES These weaknesses and limitations of the rescue paradigm suggest that in order adequately to understand the nature and scope of our rescue duties, we need to begin with a wider social and institutional view. We need to consider these obligations not only in relation to the simple and sparsely detailed paradigm cases exemplified by the 2. For one thing, the value of disclosing individual research findings is essentially zero unless people act on that information or respond to it in a way that has value, which we know is not always the case (cf. Clayton 2012). Additionally, there are legitimate worries that disclosing incidental findings and individual research results has the potential for creating both harms (e.g., confusion, anxiety, and unnecessary tests and procedures) and trade-offs (e.g., diverting scarce social resources from other socially beneficial ends), which diminish the overall net value of the practice (cf. Bredenoord et al. 2011; Wolf et al. 2012).

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drowning child, but also in relation to complex and institutionalized social practices with benefits and burdens that extend across society and across multiple generations. Such a shift in how we frame and conceptualize rescue duties has several notable implications, which can be seen by comparing and contrasting a number of prototypical features of the two models (see Table 1). First, consider how each approach views the nature of rescue cases. Under the rescue paradigm, such cases are random and unpredictable. Potential rescuers simply happen upon them, so to speak. Viewed as such, there often will be little context to consider and the impulse to rescue becomes the immediate and overriding factor. By contrast, a social/institutional view understands that patterns can be discerned and cases foreseen when taking a wider view of the rescue landscape in moments of relative calm. For example, concerns about potential drowning children give us reason to look for patterns of accidental drowning (and near drowning) and to consider the primary factors that lead to such tragedies. There will always be some cases that don’t fit discerned patterns, but that does not negate the potential value of identifying those we can. This leads to a second significant difference between the two approaches: their prototypical mode of engagement with rescue cases. Under the rescue paradigm, since cases are random and unpredictable, rescuers generally are just reacting to circumstances as they find them (and as if circumstances could not have been otherwise). As a result, they may or may not be well trained and well prepared to perform given rescues. And there may be considerable inconsistency and inefficiency across cases. By contrast, a social/institutional view engages proactively with the rescue landscape. This view recognizes that many rescue cases arise artificially rather than naturally, the predictable product of past choices or omissions on the part of individuals and societies, as opposed to unforeseeable, unavoidable accidents of nature. (Consider, for example, the repeated and predictable cases of diabetics needing to be “rescued” in the emergency room “with amputations and expensive dialysis” because we “refuse to pay the much lower cost of routine monitoring and medication” in advance [Jecker 2013, 64].) In particular, the social/institutional view emphasizes that the type and frequency of rescue needs and opportunities will be profoundly determined by what we as individuals and societies do ahead of time in terms of our social institutional infrastructure. By analyzing patterns among the many rescue cases confronting society, this view enables more consistent, coordinated, and efficient deployment of finite resources in ways that promote important moral values. Moreover, it may even reveal strategies that prevent rescue cases from arising in the first place or that minimize their potential negative outcomes in advance. Returning to the example of drowning children again, we might implement laws and codes that require fences around swimming pools, water recreation areas, and natural bodies of water in high-traffic areas, expand and incentivize opportunities

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Table 1. Prototypical features of the two models

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Nature of cases Mode of engagement Level of focus Dominant value(s)

Rescue paradigm

Social/institutional view

Random and unpredictable Reactive Individual/interpersonal Individual beneficence

Patterned and foreseeable Proactive Collective/social Justice and social utility

for children to learn to swim, employ more lifeguards, and so on. A third difference between the approaches concerns the level at which each focuses its attention. Under the rescue paradigm, everything is happening at the individual/ interpersonal level. Opportunities and burdens, and hence obligations, to rescue are divvied out randomly by chance to those individuals happening upon them. (Indeed, the distributive slogan of the rescue paradigm could be, to paraphrase the old Marxist line, “from each as he stumbles upon, to each as he is stumbled upon.”) And cases are seen as involving a limited number of people whose obligations can be adequately understood without reference to anyone else. As a result, the rescue paradigm unduly restricts the range of potential stakeholders, duty bearers, and dutiful actions. By contrast, the social/institutional view casts its focus much more widely on the larger social dimensions of rescue practices and seeks to identify opportunities to fulfill rescue obligations collectively where warranted. It recognizes that as general positive duties, any valid rescue obligations would hold for all moral agents under stated conditions. It also appreciates that such duties might be more effectively or fairly discharged through collective action and institutional creation. As Rulli and Millum have noted, “By spreading the demands of rescue among individuals, institutions can better coordinate rescues and collectively shoulder its burdens” (2014, 3). Feinberg emphasizes this same point, elaborating further: Positive duties to rescue are every bit as serious and weighty as negative duties not to harm. Unlike the latter, however, they must be divided into parts, allocated in shares, and (often) executed by appropriate specialists. That way their full crushing weight does not fall equally on all shoulders in all cases, but is more efficiently and equitably borne by the community as a whole. (1994, 196)

In this way, the social/institutional view fundamentally transforms, expands, and enriches our picture of potential stakeholders, duty bearers, and dutiful actions relevant to rescue obligations. Here we can see a parallel with the institutional development of highly trained and specialized rescue teams—“first responders”—from fire and police departments, paramedics and ambulance services, staffed and ready emergency rooms and intensive care units, all underwritten by a societal investment to fulfill rescue obligations when preventive efforts are

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insufficient. This model rests on the assumption that all adults have a rescue-based obligation to prevent and report emergencies, as well as to contribute to and support rescue institutions through collective schemes of taxation, but that the obligation to actually conduct rescues rests typically and primarily with the trained professionals best equipped to effectively and safely execute that task. The level of focus, then, has direct ramifications for a fourth difference between the approaches: the dominant value(s) at work in each approach. Under the rescue paradigm, decisions begin and end with individual beneficence. Since its analysis is limited to a small set of individuals at a given moment, there is no need to consider wider patterns over time or resource allocation issues. Instead, one only needs to consider beneficence-relevant factors, such as the quantity and probability of benefit over burden. Moreover, given its strict individual-level focus, the rescue paradigm only considers token benefits and token costs—that is, the benefits or costs “of a particular rescue”—and not type benefits and type costs—that is, the benefits or costs of “undertaking a kind of rescue whenever the occasion comes up in the course of our lives” (Schmidtz 2000, 691). By contrast, the social/institutional view recognizes that “beneficent acts,” including rescues, “are not always morally responsible or praiseworthy” (Jecker 2013, 74), especially in cases where scarce social resources are inequitably or inefficiently placed in their service. The dominant values animating this view are, instead, justice and social utility. Justice, of course, concerns the fair and equitable distribution of scarce resources, while social utility considers the overall good that these resources can produce in a given distributive arrangement. Importantly, though, both values direct our attention to considering the situation of people other than just those in the case at hand. This includes not only other people living now, but also those in the future (at least to some degree). The two values also force us to weigh the opportunity costs of rescue in this case versus others, as well as to consider “how to prioritize rescue versus other types of healthcare investments” (Jecker 2013, 74).3 And it quite

3. Thus, the kinds of questions that are obscured when beneficence dominates, such as those questions I mentioned earlier, are immediately brought to the fore when focusing on values like justice and social utility.

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naturally gets us to acknowledge and weigh type-benefits and type-costs, rather than just the benefits or costs in a particular case. So, for example, with respect to our concerns to minimize the occurrence of children drowning or needing other types of rescue, the social utility of first responder systems and their fiscal support must be weighed against other goods and services in each community and must be considered as an ongoing social practice and resource (with ongoing costs and benefits).

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A LONG-TERM, COLLECTIVIZED APPROACH TO RESCUE DUTIES IN GENOMIC RESEARCH With this analysis in hand, let’s return briefly to the example of disclosing individual findings in genomic and genetic research. Again, the differences between evaluating isolated cases from the perspective of one-to-one interactions and evaluating long-term practices from the perspective of social and institutional policy are brought into stark relief. The social/institutional view pushes us to identify and foresee larger patterns in genomic research, perhaps relating to the frequency, quantity, and significance of individual findings produced by various types of research. While not precisely predictable in advance of any given individual case, the kinds of individual findings that might lead to “rescue” can be expected to occur with greater or lesser probability in research projects depending on their scale, nature, purpose, and participant population. To treat genomic researchers as if their predictable encounters with such findings in the course of their research over time were morally analogous to that of someone stumbling wholly unexpectedly upon a drowning child on his way to work (an infinitesimally rare occurrence overall within the context of the average pedestrian’s walk to work) is disingenuous. Furthermore, the social/institutional view urges us to take proactive steps to limit the need for rescue via disclosure within the research context. In some cases, this may be done by designing research projects so that problematic types of findings are not discovered at all and resources are deployed squarely in the service of generalizable knowledge. In other cases, it might be by pushing for “rescues” to take place at the level of clinical medicine and population-wide public screening programs, so that individual findings are more effectively and equitably disclosed in these better suited contexts instead of the research context. The range of options for proactively addressing these issues undermines the claim that researchers who uncover “actionable” individual findings are somehow uniquely positioned to rescue participants. When analyzing an ongoing social practice such as disclosing individual genomic findings, we must acknowledge that things could be handled differently in advance either by society as a whole or by a different set of actors than individual researchers and research institutions. To deny

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that possibility is to fundamentally distort our ethical analysis and shortchange our ethical problem solving. Next, the social/institutional view directs our focus to the level of the larger social context and institutional framework in which individual interpersonal decisions and actions take place. In particular, it calls attention to the social value of having a robust division of labor among our major social institutions. Research has a unique and compelling mission that distinguishes it from other social institutions—that is, to produce generalizable knowledge that is socially beneficial. Inevitably, this core mission will be compromised whenever research is tasked with additional obligations, even laudable ones. (Beauchamp and Childress have made a similar point about beneficent obligations more broadly, noting that the “more widely we generalize obligations of beneficence, the less likely we will be to meet our primary responsibilities” [2009, 200].) Indeed, the very identity of research as an institution arguably can become transformed at a certain point of “mission creep.” (Schmidtz raises this same issue of fundamental identity transformation in the context of individual duties to rescue, where he emphasizes the important moral difference between addressing emergencies and addressing chronic problems. He states, “When we assume a burden of longterm care, we give up the life we had. When we help out in a one-shot emergency, we are inconvenienced, maybe even at risk, but we are not abandoning” the life, identity, and status we had prior to helping [2000, 700–1].) Moreover, the view highlights how the unique purpose and capabilities of research as an institution must inform the ethical duties of researchers. These duties cannot be determined in isolation but instead must be fixed in reference to and within a larger transgenerational social context (including the obligations assigned to other major social institutions). Finally, and perhaps most importantly, the social/ institutional view transforms our picture of the dominant values that should guide our approach to and our moral discourse about rescue. It shifts our focus away from the simplistic and individualistic application of the principle of beneficence and toward two important values relating to the distributional and aggregate implications of disclosure as rescue: justice and social utility.4 To routinely return individual results in a meaningful, responsible, and equitable way will inevitably have significant and wideranging costs for the research community. Among other things, those returning results must develop appropriate procedures and policies, special governance and oversight structures, significant informatics capacity, access to a Clinical Laboratory Improvement Amendements (CLIA)certified lab, and appropriate staffing, consultants, and

4. Two additional “social” values that might be invoked in this context are collective responsibility and solidarity (though it is not entirely clear how much of what these values emphasize would go uncaptured by a suitably rich theory of justice and social utility); cf. Forsberg, Hansson, and Eriksson (2009).

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facilities to perform all of the functions involved. There would be large up-front costs and likely significant ongoing costs as well. Researchers must weigh competing duties to distribute scarce resources to competing stakeholders—the positive ethical duty to rescue some research participants in the present versus their ethical duties to currently living nonresearch participants and to future people who could potentially benefit from more timely production of generalizable knowledge. The social/institutional view seeks to justly and effectively distribute the benefits promoted, as well as the burdens imposed, by these positive duties, rather than viewing the benefits as the good fortune of a select few current research participants and the burdens as a regrettable, but ultimately unavoidable, problem for researchers and research institutions to bear on their own.5

RESCUE OBLIGATIONS UNDER IDEAL AND NONIDEAL CONDITIONS My argument thus far might be understood primarily as an exercise in “ideal theory”—that is, an attempt to identify and describe the ideal structure of a just and wellordered society under conditions of “strict compliance” and “favorable circumstances” (Rawls 1971, 245). However, one might well wonder what the obligations of individuals are under nonideal conditions, such as those in our actual world, where circumstances (both material and political) are not always favorable and/or institutions and agents do not always comply with the demands of ideal theory. Do researchers and other individuals have a moral obligation to rescue the endangered even when the rescue situation only obtains because of an institutional failure to discharge an ideal moral obligation? And do researchers and research institutions have ethical duties to promote and facilitate transition steps toward the kind of social structure outlined in ideal theory? Before addressing these queries, I first want to openly acknowledge that, following my critique of the rescue paradigm, my primary constructive purpose in this article has indeed been one of ideal theorizing. Specifically, my goal has been to identify, as Rawls puts it, an ideal that can offer 5. It is worth adding to these four primary considerations a further difference that separates “rescue” in the genomic research context from the paradigm cases of easy rescue: namely, that rescue might not always be desired (or desirable) in genomic research the way it is in cases like the drowning child. Consider, for example, a list guiding the return of individual research findings such as the one proposed by the American College of Medical Genetics (which recommends that clinical sequencing laboratories should, in addition to investigating the regions of the genome relevant to the clinical indication, routinely test and report pathogenic mutations in 57 additional genes). Many people undoubtedly would prefer to receive this information, but a substantial number would not. This would seem to be importantly disanalagous to a paradigm case like the drowning child, where we can safely presume that not many drowning children would prefer to go unrescued.

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“an objective, an aim, by reference to which [the queries of nonideal theory] can be answered” (1999, 90). Since critics of ideal theory will no doubt question the need for or legitimacy of that pursuit, it is worth offering a brief defense of the activity. Here I would follow Rawls in emphasizing that ideal theory supplies “the only basis for the systematic grasp of these more pressing problems” (1971, 8). It provides this basis in two fundamental ways. The first is in its “target role”—ideal theory “identifies the objective at which nonideal theory ought to aim and thereby gives nonideal theory its ultimate target” (Stemplowska and Swift 2012, 376). The second is in its “urgency role”—ideal theory “helps us assess the urgency of injustice we face in the real, nonideal world” (Stemplowska and Swift 2012, 376). In both roles, then, ideal theory clarifies the “longterm goal” that should guide decisions made under less than ideal circumstances. This is an important contribution because “without knowing our long-term goal, a course of action that might appear to advance justice, and might indeed constitute a short-term improvement with respect to justice, might nonetheless make less likely, or perhaps even impossible, achievement of the long-term goal” (Stemplowska and Swift 2012, 379). This abstract point is usefully illustrated with the following concrete example:

In mountaineering, the climber who myopically takes immediate gains in height whenever she can is less likely to reach the summit than the one who plans her route carefully. The immediate gains do indeed take her higher—with respect to altitude she is closer to the top—but they may also be taking her away from her goal. The same is true of normative ideals. To eliminate an injustice in the world is surely to make the world more just, but it could also be to take us further away from, not closer toward, the achievement of a just society. (Stemplowska and Swift 2012, 379)

As this example illustrates, ideal theory is valuable because it identifies the end destination at which we’re trying to arrive and can help us avoid taking steps that might appear good in their own right, but that can make our arrival at the ultimate destination more cumbersome or improbable. This example can inform the discussion of rescue obligations and highlight the value of ideal theory there as well. As with individual moves in mountaineering taking a climber higher in altitude but further away from the summit, certain individual rescues actually might make the world better than it would otherwise have been in the short term, while, at the same time, making it less likely that a more ideal distribution of rescue obligations will be realized in the long term. If our long-term goal is to work toward such an ideal distribution, as I would argue that it should be, then we simply cannot dispense with attempts to identify and understand that ideal. Moreover, we must be willing to acknowledge that working toward that goal will almost certainly entail forgoing some potential rescues in the present in order to more efficiently and effectively move closer to the ideal in the future.

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At the level of ideal theory, the values/principles of justice and social utility would recommend the collectivization of rescue duties wherever and whenever doing so would more effectively utilize scarce rescue resources and/or more fairly distribute the benefits and burdens of undertaking rescues. Whatever types of rescue are not collectivized in this way would then be individualized and distributed “randomly” to those agents in the best position to undertake them in a given situation. In this way, an individual agent would never be “morally obligated” to complete a rescue unless two conditions obtained: (1) Collectivization of that type of rescue would result in less justice or utility than individualization, and (2) the agent was indeed in the best position to undertake the rescue at a reasonably low burden to himself or herself. By distributing the burdens of a valuable social practice (that all people may need or benefit from at some point) more equitably and the benefits more fairly and effectively for all, no individual would have reasonable grounds to reject this arrangement of rescue obligations up front. The question at hand, then, is how this idealization of rescue obligations can inform the ethical duties of potential rescuers (including researchers with potential access to individual health-related findings) living under nonideal conditions in the present. According to Rawls, nonideal theory holds that obligatory “policies and courses of action” must be “morally permissible,” “politically possible,” and “likely to be effective” in transitioning toward the ideal (1999, 89). Simmons has added to these three Rawlsian requirements a fourth: “namely, that relatively more ‘grievous’ injustices are to be dealt with before less severe ones” (2010, 19). Thus, we might begin our nonideal theory of rescue obligations with these four conditions in mind. However, as Simmons notes, “Since the four requirements of nonideal theory (may) all admit of degrees of satisfaction, the conclusions of ideal theory, applied to particular injustices in particular societies, are likely to be somewhat speculative (and certainly nothing like simple deductions from those requirements conjoined with societal data)” (2010, 19). Thus, we should expect that whatever guidelines we arrive at will be rough and open to reasonable disagreement. All of that noted, I want to outline a few guiding norms that can inform the decisions of moral agents living under nonideal conditions. First, there is a general obligation to publicize and critique the inadequacies and inefficiencies of existing arrangements, including the current distribution of rescue obligations. Similarly to how many health care workers have raised public awareness about the use of U.S. emergency room facilities for primary care medicine by the uninsured and underinsured and made this into an issue that has begun to change national and state health policy (or at least the conversations about it), so too must conversations be started when things fall short of what ideal rescue theory would recommend. In order to move toward a more just and socially useful arrangement, policymakers and the public must first understand where the current arrangement is inequitable, ineffective, or

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inefficient in its delivery of rescue services and obligations; that can only happen if there is an ideal alternative in mind and if those with knowledge of departures from that ideal publicize them and make others aware. Second, there is an obligation to discuss, develop, and support solutions that are proactive and collectivized where possible. As a general rule, the earlier that rescue needs are realized and confronted and the greater the pool of individual contributors (in terms of skills and resources), the more likely it is that we can prevent the need for rescue altogether and effectively and efficiently respond to those rescue opportunities that cannot be prevented. In the research context specifically, projects and larger agendas should be designed so that they produce the most (or most needed) generalizable knowledge for the investment. That is what the institution of research is uniquely designed to do within our social division of institutional labor. Honoring that unique and valuable charge would likely involve designing research protocols so that the possibility of incidental or individual findings is minimized or eliminated, the disclosure of which falls outside its central mission. To the degree that such information has considerable utility and can be discovered using reliable tests and techniques, then there is a general obligation to publicize these and promote them being made available to all in a public screening context (and not just to the lucky few who have contributed to research). Additionally, there may be ways to incrementally move closer to an overall just distribution of rescue obligations by internal reform of smaller scale institutions that one has more power to affect. As long as this kind of reform does not make larger scale transformation less likely—and knowing that it would indeed have such an effect seems quite a stretch—then one has an obligation to promote it (at least to the degree that one has such power and to the degree that doing so would facilitate transition to a more just arrangement). Finally, and perhaps most pertinently to the specific queries introduced at the beginning of this section, researchers and other individuals do sometimes have a moral obligation to rescue the endangered under nonideal conditions. Most obviously, where rescue opportunities are in all morally relevant ways identical to those in paradigm cases of isolated easy rescue, then a rescue attempt should be viewed as obligatory. Indeed, since even in ideal theory there will be some types of rescue that will be individualized, and since these types of rescue likely will be random one-off cases that do not fit a clear and frequently encountered pattern, it follows that one has a very strong obligation to undertake these kinds of rescue when one is in a good position to do so. That noted, however, as one diverges from these paradigm cases of easy one-off rescue, either because of the frequency of encountered rescue opportunities or because the standard conditions of high benefit to the rescued and low burden to the rescuer do not obtain, then the obligation to rescue weakens considerably and may even dissolve entirely. Since ethically responsible disclosure of individual research results is usually not easy, and since encounters with such results

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are rarely one-time occurrences for an ongoing research project or institution of any real scale, it would seem that rescue via disclosure is unlikely to be obligatory in most cases under nonideal conditions.

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CONCLUDING REMARKS In conclusion, I have argued for two major theses in this article. The first thesis is that rescue obligations cannot be properly conceptualized and evaluated exclusively within the short-term individualized perspective that dominates rescue medicine (and analytic philosophical ethics, more generally). Such a perspective unduly restricts the range of potential stakeholders, duty bearers, and dutiful actions and thereby offers an impoverished set of conceptual tools for framing, understanding, and ultimately addressing the relevant issues. Instead, we must begin with a wider social and institutional view of these duties, especially when they relate to long-term social practices with benefits and burdens that extend across society and across multiple generations. The second thesis is that this conceptual reframing has at least four major implications, including how we understand (1) the nature of rescue cases (often patterned and foreseeable rather than random and unpredictable), (2) the appropriate mode of engagement with such cases (proactive rather than reactive whenever possible), (3) the level of focus (collective and social rather than individual and interpersonal), and (4) the values that should occupy a central place in our ethical discourse regarding rescue obligations (with social values like justice and social utility becoming magnified and individual values like beneficence becoming less significant). My point, then, has not been to deny that there may be, at the end of the day, some individual-level duties to rescue the endangered, especially in “cases of sudden and unanticipated peril to others that require immediate attention, and are such that a bystander can either make an ‘easy rescue’ himself or else sound the alarm to notify those whose job it is to make difficult rescues” (Feinberg 1994, 196). In particular, we should, barring exceptional mitigating factors, rescue drowning children when we happen upon them (though we should also consider proactive solutions for preventing and better addressing such tragedies collectively where possible). Rather, my main point is that falling immediately into the rescue paradigm, especially in situations that only superficially map onto paradigm cases of easy rescue, distorts our view of rescue obligations and limits us from even recognizing, let alone seriously considering, a number of thorny but very important questions. It also obscures the fact that both the nature and scope of any individual rescue obligations will be shaped substantially by whatever collective decisions are made regarding social rescue obligations—the nature because individuals will have more or less

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demanding duties (e.g., a duty to actually perform a rescue by oneself versus a duty simply to “initiate the social mechanisms which are set up to prevent the harm”6) depending on the nature of the collective obligations, and the scope because individuals will have a wider or narrower set of duties depending on the scope of the collective obligations that society takes on versus those left to individual actors. Ultimately, the two approaches I’ve been contrasting are not mutually incompatible; there will be some meshing of collective and individual duties. I’m arguing that we need to change the terms of rescue debates and start from a wider social perspective, one that allows us to see more ideal background conditions against which our individual rescue duties can be adequately understood. &

FUNDING Research on this article was supported by funding from the National Human Genome Research Institute (R21HG006613). The content is solely the responsibility of the author and does not necessarily represent the official views of the National Human Genome Research Institute or the National Institutes of Health. I am grateful to Kyle Brothers, Brian Carter, Moti Gorin, John Lantos, and Leslie Ann McNolty for helpful feedback on earlier versions of this article. REFERENCES Beauchamp, T. L., and J. F. Childress. 2009. Principles of biomedical ethics, 6th ed. New York, NY: Oxford University Press. Berkman, B. E., S. C. Hull, C. Gliwa, et al. 2013. A quantitative study of perspectives on genetic incidental findings. Presented at the 15th Annual Meeting of the American Society for Bioethics and Humanities, October 24–27, 2013, Atlanta, GA. Bredenoord, A. L., H. Y. Kroes, E. Cuppen, et al. 2011. Disclosure of individual genetic data to research participants: The debate reconsidered. Trends in Genetics 27(2): 41–47. Available at: http:// dx.doi.org/10.1016/j.tig.2010.11.004 Clayton, E. W. 2012. Sharing individual research results with biospecimen contributors: Counterpoint. Cancer, Epidemiology, Biomarkers & Prevention 21(2): 260–261. Available at: http://dx.doi. org/10.1158/1055-9965.EPI-11-0860 Feinberg, J. 1994. Freedom and fulfillment: Philosophical essays. Princeton, NJ: Princeton University Press. Forsberg, J. S., M. G. Hansson, and S. Eriksson. 2009. Changing perspectives in biobank research: From individual rights to concerns about public health regarding the return of results. European Journal of Human Genetics 17: 1544–1549. Available at: http://dx. doi.org/10.1038/ejhg.2009.87 6. See Smith (1990, 25). Smith emphasizes that because modern societies “have socialized the burden of aiding victims” to such a great extent, it follows that “the duty to aid very often amounts to no more than a duty to initiate [these] social mechanisms.”

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Jecker, N. S. 2013. The problem with rescue medicine. Journal of Medicine and Philosophy 38: 64–81. Available at: http://dx.doi.org/ 10.1093/jmp/jhs056 Koch, T. 2012. Thieves of virtue: When bioethics stole medicine. Cambridge, MA: MIT Press.

Simmons, A. J. 2010. Ideal and nonideal theory. Philosophy and Public Affairs 38(1): 5–36. Available at: http://dx.doi.org/10.1111/ j.1088-4963.2009.01172.x

Meyer, M. N. 2008. The kindness of strangers: The donative contract between subjects and researchers and the non-obligation to return individual results of genetic research. American Journal of Bioethics 8(11): 44–46. Available at: http://dx.doi.org/10.1080/ 15265160802485045

Singer, P. 1972. Famine, affluence and morality, Philosophy and Public Affairs 1: 229–243.

Rawls, J. 1971. A theory of justice. Cambridge, MA: Harvard University Press.

Stemplowska, Z., and A. Swift. 2012. Ideal and nonideal theory. In The Oxford handbook of political philosophy, ed. D. Estlund. New York, NY: Oxford University Press.

Rawls, J. 1999. The law of peoples. Cambridge, MA: Harvard University Press.

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Schmidtz, D. 2000. Islands in a sea of obligation: Limits on the duty to rescue. Law and Philosophy 19: 683–705.

Rulli, T., and J. Millum. 2014. Rescuing the duty to rescue. Journal of Medical Ethics 1–5. Available at: http://dx.doi.org/10.1136/ medethics-2013-101643. Scanlon, T. M. 1998. What we owe to each other. Cambridge, MA: The Belknap Press of Harvard University Press.

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Smith, P. 1990. The duty to rescue and the slippery slope problem. Social Theory and Practice 16: 19–41. Available at: http://dx.doi. org/10.5840/soctheorpract19901612

Ulrich, M. 2013. The duty to rescue in genomic research. American Journal of Bioethics 13(2): 50–51. Available at: http://dx.doi.org/ 10.1080/15265161.2012.754067 Wolf, S. M., B. N. Crock, B. Van Ness, et al. 2012. Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genetics in Medicine 14(4): 361– 384. Available at: http://dx.doi.org/10.1038/gim.2012.23

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Collectivizing rescue obligations in bioethics.

Bioethicists invoke a duty to rescue in a wide range of cases. Indeed, arguably, there exists an entire medical paradigm whereby vast numbers of medic...
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