What is Temporal art? A Persistent Question Revisited

Philosophy

This article examines the fourteen conditions constituting Levinson and Alpersonâs taxonomy of conditions for temporal arts.  It claims that some of the conditions and several of the lists of arts exemplifying them need revision.  It recommends adding a new condition concerned with the effects of the passage of time on gardens, environmental sculpture, and outdoor installations.  The article concludes that gardens may be a model for understanding and appreciating other arts sharing the same bi-(multi-) modality.

About CA Journal Contact CA Links Submissions Search'Journal Enter search terms ' Search Editorial Board Permission to Reprint Privacy Site Map Publisher Webmaster What is Temporal Art? A Persistent Question Revisited John Powell' Abstract This article examines the fourteen conditions constituting Levinson and Alperson's taxonomy of conditions for temporal arts. It claims that some of the conditions and several of the lists of arts exemplifying them need revision. It recommends adding a new condition concerned with the effects of the passage of time on gardens, environmental sculpture, and outdoor installations. The article concludes that gardens may be a model for understanding and appreciating other arts sharing the same bi-(multi-) modality. Key Words gardens, temporal art, time 1. Introduction In "What Is a Temporal Art?," Jerrold Levinson and Philip Alperson answer the title's question by proposing a list of conditions, one or more of which is sufficient to classify an art work as temporal.[1] They situate their argument in the context of well-known claims by Gotthold Lessing, Victor Zukerkandl, and others that some arts, such as music, are temporal and others, such as painting, are not, and they aim "to cover all that might conceivably be meant in predicating temporality of an art form."[2] Their article has four sections. Section one is a short introduction. Section two is a descriptive list of thirteen conditions qualifying an art work as temporal. Section three assembles those conditions into object-, experience-, and content-focused groups and, acknowledging the groups' interconnectedness, proposes a fourteenth condition that encompasses the other thirteen. Section four addresses the question of whether one art is the most temporal of all. In this paper, I first offer a general critique of the intent of Levinson and Alperson's article and the assumptions it involves. Second, I examine critically the fourteen conditions for temporal art to assess the validity and relevance of those individual conditions and the implications for membership, or non-membership, of the category that each condition brings. After a brief consideration of the questions Levinson and Alperson raise regarding the aesthetic values of different manifestations of time and temporality I suggest, finally, that an understanding of how gardens function may lead to a better understanding and richer experience of works in some other art genres. 2. General critique I will now clarify what I mean by the word 'time' because my use of that word has a bearing on my analysis of Levinson and Alperson's paper. I adopt the meaning of time from Thomas Clifton in Music as Heard[3] as interpreted by Jonathan Kramer. This meaning is concise, uses straightforward language, and emphasizes the evental, processual, and temporal aspects of the art experience with which Levinson and Alperson are concerned. According to Kramer, "[t]ime is a relationship between people and the events they perceive."[4] Time, therefore, is not a thing that exists independently. It exists only by way of our personal or communal experiencing of objects and events. Nor can time flow. It is, instead, our experiences of objects and events that flow, and in this way an apparent time appears to flow. Understanding time in this way means that what is commonly thought of as chronological time is "little more than a social convention [for ordering the relationship between people and the events they perceive] agreed to for practical reasons."[5] Chronological time tells us nothing about the process of the relationship between people and events; it merely allows us to agree when and for how long the process occurred. The relational process of time encompasses what we perceive and experience happening to, in, and between objects and events before they begin, as they persist, and after they have ceased. In art works that unfold temporally, the process of this relationship is a complex, continuous process of framing, reframing, remembering, and anticipating features of the work that are organized at different hierarchical levels. In music, for example, we pay attention to pitches, rhythms, dynamics, meters, and formal elements organized into phrases, melodies, sections, movements, and entire works. That chronological time is meanwhile passing is irrelevant (although not by all accounts) to the evolving musical piece except as an aid to, say, coordinating our watches to agree about the length of the process, synching tracks in a recording studio, or identifying a historical period when the work was composed or performed in the past. [6] The authors use 'time,' 'temporal,' and 'temporality' in ways that require the words to stand for different concepts in different sections in their article. I refer to this in more detail below. Briefly, in conditions 1, 2, and 6, 'time' refers to something commonly thought of as chronological time. In condition 7 'time' and 'timelessness' refer to something like experiential time; and in condition 9 'time' refers to "a kind of time that is peculiar to the [work]" and is presumably neither chronological nor experiential, in the commonly understood senses of those terms. I believe it is a shortcoming of their article that the authors do not venture any definition of what they mean when they use the terms 'time,' 'temporal,' and 'temporality.' This is perhaps understandable given that the point of the article is to define by way of conditions what everyone means when they use these terms. I hope to show, however, that their unstated biases regarding the meaning of these terms lead to unsatisfactory inclusions and omissions from the lists of art works and genres exemplifying each condition, as well as to other problems. I believe (a) that the authors' use of 'time,' 'temporal,' and 'temporality' to refer to different, unspecified concepts within their article is confusing and (b) that these same terms have meanings other than those implied, meanings that, were they to be recognized and included, would affect some of the conclusions the authors draw. Levinson and Alperson present a taxonomy of thirteen conditions, plus one additional overarching condition, having a bearing on an art work's temporality. Their conditions are presented as sufficient, but it can be argued that some of them, including conditions 1, 2, and 3, are indeed necessary for an art work to be temporal. The taxonomy is presented as a straightforward classificatory tool. The authors say they aim "...to make sense of familiar intuitions about the arts...," and it is therefore reasonable to assume that by using such a taxonomy, we can work out what artists, performers, the public, and even philosophers mean when they use the terms 'time' and 'temporal' in relation to the arts.[7] Because it is a classificatory taxonomy, the authors generally avoid normative terminology, although 'proper,' 'properly,' and 'centrally' make occasional appearances. They do, however, refer to normative claims made by others, including Susanne Langer, Susan Sontag, Gerald Mast, Victor Zukerkandl, and Gotthold Lessing. The authors claim to be interested in the possession and expression of time and temporality by standard or paradigm works in the genres of an art form. And they add further, "... that avant-garde or self-consciously experimental instances of the art might not meet the condition would not count against its adequacy as a characterization of the art form's temporal status."[8] I believe their exclusion of the avant-garde and experimental is problematic for three reasons. First, few philosophers (including, I imagine, the authors) would consider devising a set of conditions to define art on the grounds that the avant-garde need not be included. For example, Levinson's intentional-historical definition, "... an artwork is a thing that has been seriously intended for regard in any way pre-existing or prior artworks are or were correctly regarded" seems generous in relation to avant-garde genres and objects.[9] Second, the avant-garde often becomes conventional in time. What was cutting edge when Levinson and Alperson published their paper is by now old hat and even, in some cases, established. In recent times this has been especially true of progress and possibilities in the fields of computer and video arts, the scale and rate of which developments the authors, to be fair, could not reasonably have foreseen. Third, their exclusion of the avant-garde and experimental is problematic because some of the most important artistic manifestations of time and temporality are to be found in progressive and avant-garde art. For example, Stravinsky's Rite of Spring (1913), Beckett's Waiting for Godot (1953), Dali's Persistence of Memory (1931), and Joyce's Ulysses (c. 1920) are all works that have progressed from being avantgarde to being classic in the last century. These works were avant-garde because of their temporality, among other elements, and it seems unreasonable to assume that temporality will not continue to be an important, even constitutive element of some avant-garde art. So while I recognize the authors' qualification about avantgarde and experimental art, I will refer to such works in this paper because not to do so means that important areas of temporal art will remain unaccounted for. 3. The taxonomy In this section I quote Levinson and Alperson's fourteen conditions in turn and consider each of them in the paragraph(s) following its quotation. (i) Objects of the art form require time for their proper aesthetic appreciation or comprehension. I agree with the authors that this condition is so widely inclusive that it is not useful for their project. I agree with them that all art objects and events, and our experiences of them, have a durational aspect and that "[t]his temporal aspect is ... not likely to be what anyone has in mind in thinking of the temporal arts as a special group."[10] Unlike the authors, however, I believe that this condition usefully describes three nontrivially temporal aspects of what could be considered a "proper aesthetic appreciation or comprehension" of works of art. First, as already noted, it is generally accepted that activities such as looking at a painting or sculpture are durational activities even though painting and sculpture are not commonly thought of as temporal art forms. Some claim, however, that our experience of all works of art is nontrivially temporal because it inevitably involves our own past and our past experiences of art, including previous experiences of a given work.[11] This particular temporal aspect of our experience enables us to assess, compare, and, potentially, understand better and experience more deeply a given work of art. Moreover, because our experiences of art are to a degree communal, they are in this way open to being constituted not only by our personal past but also by our shared communal past experiences of art and the culture from which it arises. Second, T. S. Eliot described how, when composing a new work, the creative artist responds to and is correctly influenced by an awareness of the implications of the unique temporal location of the new work within its own creative tradition and chronology.[12] And similarly, Eliot argued, an "accurate" experience of a given work requires attention not only to any temporal relationships within that work but also to the temporal relationships between that work and its precursors and successors in the genre. There is a third way of conceptualizing our experience of all art as nontrivially temporal. According to a view promoted by Hans-Georg Gadamer, all art works, whether commonly regarded as temporal or not, have their own unique "time."[13] Gadamer compared that time to the temporal features and qualities of recurring feasts and festivals. He argued that an ideal encounter with a work of art involves tarrying with the work in its own time world and that, in this way, all (ideal) artistic experience is unavoidably temporal. None of these three interpretations of Condition 1 is referred to in Levinson and Alperson's article, and I believe the paper is therefore an incomplete survey of what constitutes a temporal art. That said, the introduction and application of three additional interpretations would have increased the length of the study to something far greater than could be presented in one article. Perhaps their overarching Condition 14, Objects of the art form are such that their proper appreciation centrally involves understanding of temporal relations within them, deliberately and retrospectively limits the scope they had envisaged for their article. (ii) Objects of the art form require a significant interval of time for the mere perception or apprehension of their full extent. I accept this condition to describe a work as temporal. The authors, however, omit two arts from their list of qualifying art forms. One omission is minor, and I deal with it first. Painters sometimes create horizontally or vertically extensive works, or exhibit groups of paintings that are to be "read" as one composite work. In such cases a "significant interval of time" is required merely to absorb them. An example of a composite work is Sidney Nolan's Ned Kelly series, and an example of a horizontally extensive painting is Colin McCahon's Walk, measuring over twelve meters in overall length. (The latter work's title refers punningly to its content and, possibly, to a desirable way of appreciating it.) Second, contemporary philosophers have claimed that some gardens can qualify as works of art and that gardens as diverse as André Le Nôtre's for the palace at Versailles and Martha Schwartz's suburban Bagel Garden are paradigms of such gardens.[14] Although Levinson and Alperson don't mention gardens here, or indeed anywhere, in their article, I claim that some gardens are candidates for being the most extensive art works and therefore they make the highest durational demands for the "mere perception or apprehension of their full extent." Several large gardens exceed in this regard the demands of, say, the cathedrals of Chartres and Notre Dame, which are noted elsewhere in the article for their "extraordinary size and scale."[15] (iii) Objects of the art form require time in presentation, i.e., they require performance or exposition of some sort over an interval of time; the parts of the artwork are not all available at any one moment, but only consecutively. I accept this condition to describe a work as temporal. Once again, however, gardens constitute an important omission from their list of conforming arts.[16] I claim that gardens have a greater potential than any other art form to exhibit noticeable nonaleatory changes while still retaining their ontological identity.[17] But unlike the other arts the authors refer to, gardens are not performances, as the condition deems alternately necessary, because they do not have performers. [18] Gardens' most important constituents are living plants, and plants are not performers; sweet peas do not perform, they simply do what sweet peas do. But the ways in which a garden designer arranges the garden elements result in certain temporal (and visual) events being exposed, juxtaposed, and counterpointed, and in this way the garden can be seen as an exposition, as alternately required by this condition. Finally, a garden is never the same; it is always perceivably changing. So, in this additional sense, the time of the "presentation" of the garden is limited only by the garden's initial installation and final destruction. Similar claims can be made for installations such as Damien Hurst's Thousand Years (1990) or his Let's Eat Outdoors Today (1990-91), which feature living and decomposing elements, such as items of food, maggots, flies, blood, and a cow's head. Such works require time for their presentation, and not all aspects and stages of the component elements are available for viewing at any one time. (iv) Objects of the art form consist of elements or parts arranged in a linear order, with definite direction, from first to last. I accept this condition to describe a work as temporal and generally agree with the authors' list of conforming arts. Although it's not made clear in this condition, I assume that the authors mean to imply that the elements within the work are arranged by its creator in an immutable sequence. If this is the case then, with a small extension to the implied meaning, the condition can also accommodate some established contemporary works with a linear order that start and finish but do not have an invariable sequence of parts or sections within their overarching structure. If the condition's implied meaning is expanded so that the arrangement of elements can be done by the creator, the performer, the recipient, or some combination of these agents, then a number of previously excluded works can be included. One such work is Julio Cortazar's Hopscotch.[19] It is an early example of a literary work in which the reader is free to order the sections as he sees fit or as his fancy takes him. In such works the reader organizes the structure of the narrative for himself. [20] This is different from, say, skipping ahead to read the ending of a novel before it appears sequentially according to the author's ordering. In the former case, the ordering of sections constitutes part of the work's aesthetic interest. In the latter case the reordering of sections results merely from the reader's impatience or indifference. (v) Objects of the art form are properly experienced in the order in which their elements are determinately arranged, and at a rate defined by, or inherent in, the artwork itself or its prescribed mode of presentation or performance. I accept this condition to describe a work as temporal and generally agree with the authors' list of conforming arts. I have, however, two comments to make. First, the authors ignore the fact that poetry is, first and foremost a performance art. Spoken poetry certainly conforms with this condition, but poetry is listed, along with the novel, as an art that is not accommodated by the condition. The authors do, however, admit that the way the poem is written may influence the rate at which a silent reading of it proceeds. Somewhat surprisingly, given their earlier comments regarding experimental art, they support this latter claim by referring to the work of the (then) experimental Québéçoise poet Nicole Broissard. Second, just as in the case of Condition 4, a small alteration of intent in the text of the condition allows the accommodation of established contemporary works. The authors' qualification "determinately arranged" means, I assume, "arranged by the creator of the work."[21] If the intent can be broadened to mean "arranged by the creator or performer of the work," then a significant group of other works can be included. An example of such a work is Karlheinz Stockhausen's 1956 "Piano Piece XI," in which the ordering and the manner of performance of the composed sound segments are at the same time free in their sequencing and highly determined in their articulation. The performer is free to choose the sequence of sound segments, each of which finishes with a meticulously specified set of written instructions about how to play the next segment, which will be the segment, in the extra-large musical score, on which the pianist's eyes next light.[22] This work is one example of aleatory and quasi-aleatory music that appeared during the third quarter of the twentieth century. While much of it proved ephemeral in its appeal, some, like the Stockhausen piece, have endured and are now considered classics. (vi) Objects of the art form are such that nontemporally extended parts of the object do not count as aesthetically significant units of it. That is to say, such parts are not isolatable for study in a way that contributes significantly to the full experience of the object. I do not consider this condition useful in achieving what I take to be the authors' aim of distinguishing between two different genres of temporal art. They compare music and films and decide that music is temporal in a way that film is not, explaining that music is not divisible into small units "isolatable for study in a way that contributes significantly to the full experience of the object," whereas film is. [23] The authors' comparison of "freeze-framing" a film or video and "pausing" a music CD is unhelpful. Their claim that you get a complete but brief sense unit when you freeze a film and nothing when you pause a CD is, of course, true. But while the claim does tell us how the two arts and their modes of reproduction are differently constructed, it tells us nothing about how the arts (a) can be similarly experienced and (b) have similar content with respect to this condition. Both film and music require the perceiver to combine and organize discrete sensory inputs into larger sense units. In the former case, because its technology limits it to a fast-moving succession of mechanically presented, discrete images, a film can be dissected to expose one or more of the constituent discrete sensory inputs. In the latter case, music, as perceived when it is performed or heard live, is not experientially separable into a series of discrete, minute, isolated phenomena in the way that, analogously, film is when it is projected.[24] But this does not mean that a temporal slice of music is either inaudible or not "isolatable for study."[25] A single chord, for example, can certainly be an "aesthetically significant unit" of a musical composition.[26] The first 136 bars of the prelude to Wagner's Das Rheingold are built on a single chord (harmony) introduced gradually at the start, and that chord's varied appearances in, for example, bars 1, 5, and 11 could well serve as aesthetically significant units isolatable for study. And further, to reintroduce the avant-garde, Stockhausen's "Piano Piece IX" begins with 184 repetitions of a single chord. Individual chords taken appropriately from these two examples surely constitute aesthetically significant units. Likewise, in poetry a single monosyllabic word, or in dance a frozen movement or gesture, or in a garden a "frozen" view may all be aesthetically significant units. That "sound bites" of music, poetry, dance, and gardens are not, like film, convenient segments, mechanically extractable at the rate of twenty-four divisions per second seems irrelevant. Furthermore, a sound bite taken from an instance of these arts may also reasonably be any (shortish) length, it need not necessarily equate to the length of a single frame of film. It would be difficult to argue that such extracts "are not isolatable for study in a way that contributes significantly to the full experience of the object." (vii) Objects of the art form are about time, or our experience thereof, in some significant way. I accept this condition to describe a work as temporal, but I claim that music, some minor exceptions notwithstanding, should not, for the reason I now introduce, feature on the authors' list of conforming genres. If the preposition about in the condition is taken to mean something like "having as its subject" or "concerning," then the paintings and film they cite are nicely accommodated by the condition. Although they do not cite a novel, Proust's In Search of Lost Time or Joyce's Ulysses would be appropriate examples. These works are all representational. We know they are dealing with time because the words or images they contain make this clear. Thus they are about time or our experience of it. But the same cannot be said of music, which is not representational in this way. Although I claim that music cannot be about these things, an ideal experience of listening to music may entail a particular temporal encounter that is triggered by the music, or by the title of a piece. For example, "Regard du Temps," from Messiaen's Vingt Regards sur l'enfant Jésus, may suggest that that piece has a temporal content. I return to this claim under Condition 9 below. It is possible that the preposition about in the condition references Arthur Danto's notion of "aboutness"that is, the quality of an object or event that distinguishes it as an art work from other things. If this is the case, then music, and theoretically any other art, potentially conforms to Condition 7. (viii) Objects of the art form use time as a material, or as an important structural feature. It is hard to know what the authors intend with the wording of this condition. I agree with them that, in a weaker sense, all art making, performing, and reception are unavoidably temporal, but, that said, it is not clear why this condition, even in its stronger sense, needs to exist at all. It overlaps with Conditions 2, 3, 4, 5, and 7, and I'm not convinced that it accommodates or excludes any genres or combinations of genres that the other conditions don't accommodate or exclude. Another problem is that the authors here link novels with four performance arts to make up the primary list of arts conforming with this condition while, at the same time, they fail to acknowledge that a novel's approach to temporality differs fundamentally from that of the performance arts. In whatever way they conceptualize "time," its presence in a novel is quite different from its presence in a performance art. If the condition is to be retained, then I think its stronger claim can be better served by rewriting it as follows: "Objects of the art form use change, including rate(s) of change, which we necessarily perceive and attend to, in temporal successions, as a material or as an important structural feature." This new formulation sidesteps the problem caused by the authors' not defining "time" and by that concept's notorious slipperiness. Finally, the authors name architecture as a genre that may fit this condition on the basis of what they claim to be the durational and sequential aspects of our experience of large buildings such as, in their examples, Notre Dame and Chartres cathedrals. Their claim is only partially true because our temporal experience of such architecture is structured and formed by us primarily and by the building only secondarily. (ix) Objects of the art form generate a kind of time that is peculiar to them, that exists for a perceiver only in and through experience of the work. I am interested that this condition appears in the taxonomy because it seems to be in conflict with Alperson's earlier position. In his excellent paper of 1980, "'Musical Time' and Music as an 'Art of Time,'" he concludes "...that the use of the phrase 'musical time' to delineate a special kind of time created by music is a mistake."[27] By itself, this earlier comment does not mean that the particular condition should not be included in the taxonomy. It is simply evidence that there can be confusion about these matters and that working definitions of time and temporality might have been included in the paper and been useful in explaining the apparent volte-face. While Condition 9 may be taken to apply to a range of temporal arts, I would now like to pursue it further simply in relation to music and Alperson's quoted comment. I claimed earlier that "[t]ime is the relationship between people and the events they perceive."[28] If this is the case, then music cannot on its own be said to generate time, and the condition should be modified to reflect this. We could choose to say instead that music offers sonic events tailor-made for our relating to it and that in this way music generates opportunities for temporal experiences. Now, if this is the case, then it may be reasonable to claim that certain compositions present sonic structures, events, and patterns in ways that manipulate our reactions and relationships to them. And in this particular limited but important sense, we might say that something akin to musical time does exist. (x) Objects of the art form represent a series of events in time distinct from the series of events constituting the art object. I accept this condition to describe a work as temporal, and I agree that film, novels, and theater are strong examples of genres conforming with it. Still it is unclear, however, why the authors have omitted poetry from their list, given that it shares with the listed arts the same characteristics in relation to this condition. The authors have here chosen to restrict the meaning of 'represent' (and, later in the text, 'representation') to a version of what might be called manipulated mimesis. According to this view, a sequence of, say, a car chase can (a) be more or less realistically represented in text or on film and (b) proceed differently from the sequence of, and take more or less time than, the time the actual or imagined car chase takes. The authors fairly claim that such temporal dislocation and "distemporization" is a hallmark of the novel and film in particular. If they were to broaden the range of meaning of 'representation ' then one further art would appear to become exemplary of the condition. They quote Susanne Langer in support of their Condition 9, and, if they are to take her and others espousing similar positions, such as Leonard Meyer, at their word, then music might be said to "represent a series of events in time distinct from the series of events constituting the art object."[29] According to this view, a suitably qualified listener reacts to music's elements in a way that involves reenacting emotional, psychical events from her "real" life. Music, therefore, might be said to represent psychical events in a sequence and time distinct from the way those events occurred in real life and without reference to the agents and events that triggered the psychical events. This would be in accord with Langer's view that music represents or implies dynamic inner states in our "real" lives and that we are able to re-experience the emotions of those events without experiencing the events themselves. Thus music, too, might be exemplary of Condition 10. Plausible as this notion of representation may seem, however, I claim that it is in fact not representation but re-stimulation or re-presentation of emotion that is involved in the case of music. A listener is not aware of any process or representation occurring. Instead, emotions are stimulated in the absence of any representation of or reference to the generating events because music cannot represent or refer in these ways. So, tempting as it might be to think of Langer's view of music as in some way involving representation, this is not the case; and therefore the view of music's potential that I rejected in connection with Condition 7, that is, that music can be said to be about something or to have something as its subject, is confirmed. (xi) Objects of the art form are created in the act of presentation, so that the time of creation, time of presentation and (usually) time of reception all coincide. I accept this condition to describe a work as temporal and agree that improvisatory works are exemplary of it. At the same time, I suggest that re-creation be offered as an alternative to creation in the condition in order to (a) give greater weight to the role of the interpretive performer of nonimprovisational works and (b) allow for certain musical activities, including continuo realizing and cadenza playing, in which spontaneous or rehearsed improvisation is part of an otherwise notated work. (xii) Objects of the art form require presentation in a time lived through and by the presenters. I accept this condition to describe a work as temporal and agree that live performances and improvisations are exemplary of it. (xiii) Objects of the art form lack relatively fixed identities over time, but are rather mutable and shifting. I accept this condition to describe a work as temporal and agree that some folk arts with only oral traditions of transmission are exemplary of it. The authors offer a final, fourteenth condition that, they claim, straddles the previous conditions and the implications of their grouping of them into the three sub-groups referred to earlier. It reads: (xiv) Objects of the art form are such that their proper appreciation centrally involves understanding of temporal relations within them. I agree with the authors that "... when an art form is described as "temporal," without any further specification of what is meant, then [Condition 14] ... provides the best overall default construal."[30] In the condition, however, the word 'centrally' creates a problem. Does it equate to 'significantly,' or 'principally,' or 'is required to?' The problem is seen most clearly in the case of arts that have temporal aspects that constitute their aesthetic appeal and value, aspects that are not the only or the strongest or necessarily the most obvious claimants to that role in the work. Gardens and environmental sculptures provide good examples of arts in which aesthetic appeal and value derive from both temporal and pictorial (spatial) features of the works. I do not mean to suggest, however, that we can consider or quantify the visual and temporal aspects of such arts as if they are discrete, independent aspects of a work. They are complexly interwoven, and I believe the condition would be improved were this complexity to be acknowledged. 4. A new condition There exists one inescapably important temporal feature that is not considered anywhere in the taxonomy. This feature affects some architecture and installations, all gardens, and some environmental sculpture, and might be reflected in a new condition reading as follows: (xv) Objects of the art form are aesthetically dependent to varying degrees on the transitions, movements, actions, and patterns of biological, diurnal, seasonal, climatic, and sometimes geological changes, most of which occur in temporally experienced sequences. I claim that this proposed condition is of fundamental importance to the art of gardens. The proposed "condition xv," and the content of Section 5 that follows, owe a significant debt to the important pioneering work in the philosophy of art gardens carried out by Mara Miller and Stephanie Ross, and by later writers who have developed similar or related accounts of gardens.[31] 5. Four-dimensional works of art In their conclusion, Levinson and Aplerson suggest that their work could be extended by responding to two questions: First, which art is the "most" temporal, and on what basis might that be determined? And, second, do some of their conditions for temporality carry with them more aesthetic significance than others? I agree with the authors that an Oscars-style response, where the winner is the one with the most votes, would be an unenlightening response to the first question, unless some agreed value was attributed to each aspect of temporality making up their taxonomy. I further agree with them that to be minimally useful any such ascription of value would need to be couched in the context of a single, higher-level conception of art. I believe their second question is a much more apt one. But, as I suggest in relation to Condition 14, ensuring that the weighing process produces useful results is not as straightforward as Levinson and Alperson seem to believe. There are two reasons why the weighing process is more complex than the authors acknowledge. First, some art genres, such as gardens, environmental sculpture, and some installations and architecture, are at the same time significantly temporal and significantly pictorial. They therefore pose the problem of how their temporality is to be weighed. Is it to be weighed as a discrete quality or is it to be weighed as some sort of composite quality? And then, is it a temporalpictorial quality or is it a pictorial-temporal quality? Or is it something else again? And, second, even if and when the weighing parameters are clarified, there remains a bigger question to address: Is it possible to make useful and insightful claims about the aesthetic weight of manifestations of temporality in art works in general without regard to the weight or significance of temporality in a specific genre and even in a specific work? My answer to this question is a qualified yes, and, in particular, I propose that the way temporality is manifested in gardens may have interesting implications for the way we understand the temporal nature of some other arts. To this end I will now restate claims I have made earlier, here and elsewhere, about the complex nature of gardens, and I will do so using as a framework Levinson and Alperson's tripartite distinction of object-, experience-, and content-based conditions.[32] As objects, gardens typically display both pictorial (spatial) and temporal qualities and features. They can be conceptualized as two-dimensional pictures, as three-dimensional sculptures, and as four-dimensional environments. Gardens are also richly endowed with opportunities for olfactory, kinesthetic, and tactile experiences.[33] Because of this complexity I claim that gardens are, pace Kant, more than "a kind of painting" with nature's "products," and an adequate understanding of them ought to acknowledge their modal complexity.[34] As vehicles for experiences based on a viewer's awareness of formal qualities and features, gardens offer aesthetic encounters commonly associated with the visual arts as well as with the temporal art of music.[35] Any adequate account of gardens ought to acknowledge their capacity for providing these two different but interconnected types of experience(s). As conveyors of content, gardens can be about visual qualities such as beauty and grace, they can represent mimetically, they can in other ways represent concepts such as attitudes to nature or power and dominion, and they can both be about and instantiate time and its passage. [36] In summary, gardens resist neat categorization as a pictorial or temporal art. Gardens are both, separately, but they function as more, or something different again, when considered as simultaneously pictorial and temporal. Perhaps this feature of (art) gardens can provide a key to understanding the complex interplay of temporal and other aesthetic modes in different art genres where the interplay is significantly present. A study that builds on Levinson and Alperson's, while addressing the issues raised above, could investigate more complex problems and provide more revealing solutions than the original paper managed to do.[37] John Powell firstname.lastname@example.com John Powell is a Ph.D. candidate at the University of Adelaide, South Australia. His thesis focuses on developing an art-formspecific account of the garden's ontology, materials, and experiential modes. Published September 8, 2015. Endnotes [1] Jerrold Levinson and Philip Alperson, "What Is a Temporal Art?," Midwest Studies in Philosophy, 16 (1991), 439-50. [2] Levinson and Alperson, p. 447. [3] Jonathan D. Kramer, The Time of Music: New Meanings, New Temporalities, New Listening Strategies (London, New York: Schirmer Books, 1988). [4] Kramer, p. 5. [5] Kramer. [6] Jeff Pressing, "Relations between Musical and Scientific Properties of Time," Contemporary Music Review 7, no. 2 (1993). [7] Levinson and Alperson, p. 441. [8] Levinson and Alperson, p. 440. [9] Levinson's definition is quoted in Thomas Adajian, "The Definition of Art," in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta (Winter 2012). [10] Levinson and Alperson p. 441. [11] Gregory Currie, An Ontology of Art (New York: St Martin's Press, 1989). [12] T. S. Eliot, "Tradition and the Individual Talent (1919)," in Selected Prose of T. S. Eliot, ed. Frank Kermode (London: Faber and Faber, 1975). [13] See Hans-Georg Gadamer, The Relevance of the Beautiful and Other Essays, trans. Nicholas Walker (Cambridge, New York, Melbourne: University of Cambridge Press, 1986). [14] The concept of garden qua art is explored extensively in Mara Miller, The Garden as an Art (Albany: SUNY Press, 1993); and Stephanie Ross, What Gardens Mean (Chicago: University of Chicago Press, 1998). [15] Levinson and Alperson p. 444. [16] For expositions of temporality in gardens, see Ismay Barwell and John Powell, "Gardens, Music, and Time," in Gardening-Philsophy for EveryoneCultivating Wisdom, ed. Dan O'Brien (Oxford: Wiley-Blackwell, 2010); and Mara Miller, "Time and Temporality in the Garden," in the same volume. [17] They also involve significant aleatory changes, but this is not of interest here. [18] For a thought-provoking presentation of an opposing view, see Mateusz Salwa, "The Garden as a Performance," Proceedings of the European Society for Aesthetics 5 (2013). [19] Julio Cortazar, Hopscotch, trans. Gregory Rabassa (New York: Pantheon, 1966). [20] This structural device is also commonplace in videoand computer gameart genres. [21] Levinson and Alperson p. 442. [22] The freedom that "Piano Piece XI" exemplifies is different from the total absence of restraint found in the work of John Cage and others. Cage's work is aleatory, whereas Stockhausen's is aleatory and "determinately arranged." [23] Levinson and Alperson p. 443. [24] For some possibly unintended support of my claim, see Jerrold Levinson, Music in the Moment (Ithaca, London: Cornell University Press, 1997). [25] Levinson and Alperson p. 443. [26] Levinson and Alperson. [27] Philip Alperson, "'Musical Time' and Music as an 'Art of Time,'" Journal of Aesthetics & Art Criticism, 38, 4 (1980), 407. [28] Kramer, p. 5. [29] Levinson and Alperson, p. 444. See also, Leonard B Meyer, Emotion and Meaning in Music (Chicago: University of Chicago Press, 1956). [30] Levinson and Alperson, p. 447. [31] See Jan Kenneth Birksted, "Landscape History and Theory: From Subject Matter to Analytic Tool," Landscape Review, 8, 2 (2003); Miller, The Garden as an Art; Ross, What Gardens Mean; and Salwa, "The Garden as a Performance." [32] Levinson and Alperson, p. 446. [33] For accounts of gardens' olfactory dimension, see Miller, The Garden as an Art, p. 32; and Marta Tafalla, "Smell and Anosmia in the Appreciation of Gardens," Contemporary Aesthetics, 12 (2014). [34] Immanuel Kant, Critique of Judgement, trans. J. C. Meredith (New York: Oxford University Press, 2007), §51. [35] For example, see Barwell and Powell, "Gardens, Music, and Time." [36] For examples of mimesis, see Ross, What Gardens Mean, chapters 4-5. For "nonmimetic" representation, see, for example Ann Kuttner, "Delight and Danger in the Roman Water Garden: Sperlonga and Tivoli," in Landscape Design and the Experience of Motion, ed. M. Conan (Washington, D.C.: Dumbarton Oaks Research Library and Collection, 2003). [37] I am indebted to an anonymous reviewer at Contemporary Aesthetics and reviewers at another publication for their helpful comments.


Precision Medicine and Big Data: The Application of an Ethics Framework for Big Data in Health and Research

Philosophy

ORIG INAL PAPER Precision Medicine and Big Data The Application of an Ethics Framework for Big Data in Health and Research G. Owen Schaefer1 & E Shyong Tai2,3 & Shirley Sun4 Received: 29 July 2019 /Revised: 27 August 2019 /Accepted: 28 August 2019 / Published online: 30 September 2019 # The Author(s) 2019 Abstract As opposed to a 'one size fits all' approach, precision medicine uses relevant biological (including genetic), medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone's disease risk andmore effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in the Ethical Framework for Big Data in Health and Research (Xafis et al. 2019) to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. Keywords Precisionmedicine . Big data . Bioethics . Genomics . Genetic discrimination Asian Bioethics Review (2019) 11:275–288 https://doi.org/10.1007/s41649-019-00094-2 * G. Owen Schaefer email@example.com 1 Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore 2 Saw Swee Hock School of Public Health, National University of Singapore, Singapore 3 Division of Endocrinology, National University Hospital, Singapore 4 Sociology, School of Social Sciences and Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore Background Precision medicine is, in its broad contours, not a new approach. Clinicians have generally sought to deliver therapies and preventative care that will best suit the particular patient in front of them, taking into account all relevant contextual factors. However, big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. This new information can, in turn, guide the development of treatments or treatment strategies truly individualized to the person receiving them. Relevant information includes genetic data that could, for example, be used to develop new medications, predict the risk of a side effect of a drug or to establish the diagnosis of a rare disease (see Box 1). Box 1: Big data applications in precision medicine Basic research Clinical research Clinical practice -Facilitating the discovery of molecular targets for new therapies -Facilitating the discovery of biomarkers that can be used to identify people who are likely to respond to targeted interventions or experience adverse events -Facilitating the clinical testing of targeted therapies, novel diagnostic techniques or predictive tests -Helping to diagnose people and target therapies at their particular molecular/behavioural profile -Establishing more effective preventative care through more accurate prediction of likely disease onset Behavioural and lifestyle factors (such as diet, daily activities, even social media use) interact with genetic factors to cause disease; this means that data that relates to lifestyle also contains information about key determinants of risk for many of the common chronic diseases that afflict modern societies. These behavioural factors can also interact with biological factors to cause disease. Access to data related to these behavioural factors not only allows a better understanding of the biological effects but also allows us to identify behavioural changes that may mitigate the effects of biological variants on disease susceptibility. The use of genomic data is also changing the face of drug and other therapeutic development. In the past, drugs have been developed based on knowledge of biological pathways involved in disease, often derived from experiments performed in cells or animals. Very often, these experiments fail to replicate in humans. Furthermore, drug development is limited to those biological processes that we know (or believe we know) about. The ability to survey the entire genome enables scientists to identify novel pathways involved in the disease and develop therapies that are more likely to be relevant to humans. But because these variants are often rare, or have small effect sizes, large datasets are required to make valid inferences about the role of these variants in disease. As such, it is critical to pool large datasets. Precision medicine's reliance on big data therefore greatly expands the scope of biomedical research, potentially to the societal level. This means engagement will similarly be required at the societal level. Attention to ethical issues by stakeholders such as researchers, data custodians, hospitals, research institutions, regulators and governance bodies, then, is not only intrinsically important (for prevention of harms, injustice and disrespect), but pragmatically essential if precision medicine is to receive 276 Asian Bioethics Review (2019) 11:275–288 the social support it needs to be successful. This is necessary at the initial point at which data is generated or accessed for precision medicine purposes, as well as over time as standing databases are maintained and unforeseen uses of genetic and other personal information takes on unexpected uses. Here, we survey several (non-exhaustive) key topics worth consideration in the precision medicine context and the values related to them. Key Issues Balancing of Interests/Sharing of Benefits Like any novel therapeutic approach, precision medicine should only enjoy wide uptake if it can be shown to have benefits that sufficiently outweigh the costs to develop and deploy it, as well as the risks involved. Some of this involves costbenefit analyses that are outside the scope of this framework. But it also means that there must be careful attention given to who benefits, realistic expectations of the magnitude of benefits (avoiding hype) and how the burdens of its use will be shared and distributed. Big data, by its nature, cuts across large sections of society. There are still crucial demographic gaps in current health and genomic datasets, though, and failure to fill those gaps is doubly problematic: First, excluded groups might be less able to take advantage of the fruits of precision medicine (as there will be less of a robust evidence base to suitably tailor treatment to them), though they will bear other indirect costs such as via taxes to develop the field. Second, included groups will have to bear some of the costs of the relatively ineffective traditional treatment approaches that excluded groups will continue to receive via public healthcare systems. So there is a need to ensure that all groups are included in the big data being used to develop precision medicine. However, even if the precision medicine initiatives could develop cost-effective treatments with fair access across populations, a counterfactual must be considered: what research or other social priority is being de-funded to make room for precision medicine? (Bayer and Galea 2015). In other words, what are the opportunity costs? It may be that shifting resources to precision medicine displaces funding that is of more importance to neglected groups. This reflects a broader international issue of the muchdiscussed '10/90 gap': how (at least in the 1990s) less than 10% of international research funding was in areas that account for 90% of the global disease burden (Ramsay 2001). It is impossible to assess such priority-setting dilemmas in the abstract, but one mitigation strategy would involve promoting inclusion (as described in the preceding paragraph) while ensuring that the health priorities of all populations are being met by the precision medicine initiatives that rely on their data. There is also a need to ensure broad access to the fruits of precision medicine. Due to the variable prevalence of rare but impactful genetic variants across different populations, progress in precision medicine requires linking together databases from geographically diverse populations. But even if there are findings derived from big data relevant to a particular subgroup, it may be that the costs or infrastructure required to deploy precision medicine interventions are prohibitive Asian Bioethics Review (2019) 11:275–288 277 for them. Already, some are raising concerns about the high costs of targeted therapies (Ciardiello et al. 2014; Goddard et al. 2012; Ferkol and Quinton 2015); even if interventions come out favourably on a cost-benefit calculation, the high absolute costs of intervention may still exclude many, especially in countries that lack universal healthcare or have tight healthcare budgets (Rehman et al. 2016). Ensuring adequate sharing of the benefits of precision medicine itself will be costly, however, and a push for generic or biosimilar therapeutics may be seen as overly aggressive if it disincentivizes high-income countries from investing in precision medicine. Therefore, careful deliberation and robust justification for reasonable and appropriate distribution of precision medicine's benefits will be needed among researchers, institutions, government officials and the public at large (see Box 2). Box 2: Example-PCSK9 inhibitors In 2006, two genetic variants in a gene known as PCSK9 were identified in individuals with low levels of low density lipoprotein cholesterol (LDL-C), a key risk factor for coronary heart disease. These were low frequency variants which were specific to certain ethnicities. In this study, a variant present in 2.6% of black subjects was associated with 28% lower LDL-C and 88% lower risk of heart disease. Another variant was present in 3.2% of Caucasian subjects and was associated with 15% lower LDL-C and 47% lower risk of heart disease. Importantly, the carriers of these variants were healthy in other aspects of their lives (Cohen et al. 2006). This was taken as a priori evidence that a drug that inhibits PCSK9 would lower LDL-C and reduce heart disease in a manner that was safe over a long term. Today, PCSK9 inhibitors have proven to be effective at reducing cardiovascular disease in certain patients, particularly those who are unresponsive or intolerant to statin therapy (Chaudhary et al. 2017). Uptake of PCKS9 inhibitors, however, has been marred by its high cost-currently between USD 5000 and USD 14,000 per year of treatment, which may last for the rest of the patient's life. This has been shown to be not cost-effective (Korman et al. 2018), and many insurers decline to cover it (Hess et al. 2017). Access, then, will depend in large part on the ability of patients to afford the high out-of-pocket costs of the treatment. This raises questions concerning the fair allocation of benefits and burdens for high-cost, beneficial targeted interventions like PCSK9. A large number of individuals contributed to PCSK9 inhibitors' development, via use of their genetic and clinical data. This involved some risk exposure. New data is generated, and existing data is linked together and shared in the context of a big data ecosystem; while that facilitates important research, it also increases the possibility of a data breach by leading to more data in the hands of more institutions and individuals. Moreover, public willingness to contribute such data is contingent on the expectation of general social benefit. Yet in this case, the benefits only accrued to a much smaller subset who are able to afford the therapy or have access to insurance that happens to cover it (Reddy 2017). Anonymization The implications of the difficulty of anonymization in the big data era are discussed in more detail in Xafis et al. (2019). Here, we will just note that anonymization is especially difficult to guarantee in precision medicine when genomic analysis is conducted. Not only is each genome is unique to any individual but also a recent study has shown that it is possible to re-identify most European-Americans from a de-identified genomic profile by linking it up with publicly available genetic ancestry databases (Erlich et al. 2018). Going forward, precision medicine will have to adapt to a context where anonymity of genetic data and tissue cannot be guaranteed. 278 Asian Bioethics Review (2019) 11:275–288 Familial/Group Implications While it is not possible to cleanly map concepts of race and ethnicity onto genetic or biological reality, there are also clearly loose correlations among race, ethnicity and genetics (Mersha and Abebe 2015). This raises the possibility that big data analytics may generate findings of statistical significance which, when reported publicly, become exaggerated or misinterpreted and reinforce certain racial or ethnic stereotypes (insofar as some early precision medicine insights will be implemented at the group, rather than individual, level). Such challenges may only emerge years or even decades after data is initially gathered, as databases are mined by more and more researchers with more and more diverse and variable questions they seek to address. One strategy for addressing these potential group harms is for data users to engage with communities (via community leaders or organizations) to ensure that use of data and dissemination of resultant information is done in a respectful manner that minimizes risks to the community and pursue co-governance in the formation of oversight mechanisms. However, this approach must be taken with caution, as it is not always clear who does or should speak for a 'community' (see Xafis et al. 2019 for further discussion of group harms and co-governance). Commercial companies may also have incentives to use big data evidence in order to market pharmaceutical products along racial or ethnic group lines. Largescale datasets on diverse population groups can be strategically appropriated by interested parties to the detriment of the health care of individuals designated as members of said groups. For example, Kahn argues that 'the primary forces driving the re-invention of BiDil [a drug for treating heart failure] as an ethnic drug...were legal and commercial, rather than biomedical' (Kahn 2004, 4). Indeed, rather than receiving more affordable treatments, the targeted population found that costs increased (Sankar and Kahn 2005). To begin with, it is not necessarily in the interests of pharmaceutical companies to develop drugs that are only effective for patients with specific biomarkers, particularly when these markers may be only present in a small subset of the whole patient population. However, pharmaceutical companies may turn to racial or ethnic targeting (and, therefore, to produce racialized medicine) in the aftermath of poor or irregular drug performance in the general population large-scale clinical trials (Sun 2017). Even in the 'new' biomarker-based drug development paradigm, it remains true that pharmaceutical companies have to channel their research and development efforts to areas where positive outcomes are likely. Moreover, one of the ways in which companies try to predict success is to rely on data that reveals the frequency of a particular mutation 'enriched' in certain racial and ethnic populations. The decision to use such data to commercialize along racial or ethnic lines is not ethically neutral. The impact of the reification of categories via such racialization on already marginalized groups, beyond the narrow confines of medical treatment, must be considered. When a mechanism (whether genetic, environmental or otherwise) is known, relying directly on the mechanism rather than a crude proxy of race or ethnicity (which are social constructs that relate to many features that have nothing to do with the disease or the treatment) could be more defensible. Asian Bioethics Review (2019) 11:275–288 279 Genetic Discrimination The medical relevance of big data in precision medicine, including genomics, is a double-edged sword. On the one hand, the goal of precision medicine is to harness that data to benefit patients by better tailoring treatments and preventative care to the particular patient's characteristics. On the other hand, predictive genetic information may be used by third parties such as insurance companies in setting premiums, or employers in making hiring decisions. If big data analytics shows that certain genetic markers increase predisposition to a disease that is costly to treat, insurers (including for health, life or disability) may seek to charge higher premiums for patients with those markers or even deny coverage altogether (Tiller et al. 2019). Charging some patients more than others based on risk of developing disease is, of course, already prevalent in the insurance market. It is standard, for instance, to adjust premiums based on age, smoking habits and family history; such strategies are actuarially just (or, at least, there is no reason why they cannot be). It may be argued that using genetic information in premium setting is no different, as a method of tailoring policyholders' premiums to their greater or lesser risk of disease or death. And individuals using their knowledge of their genetic risk of disease to purchase more or less comprehensive insurance without disclosing that risk to insurers may in the long run force insurers to increase premiums across the board (to offset higher payouts from high-risk individuals and lower pay-ins from low-risk individuals), unless they are able to stratify premiums based on those risks (Taylor et al. 2010). However, a number of countries such as the USA, Canada and the UK have enacted measures to limit or prevent differential treatment in insurance or employment based on genetic profiles (Krajewska 2017). In addition to the normative rationale for such protections related to justice and public benefit (see below), anti-discrimination frameworks may be defended on pragmatic grounds as well. Worries about genetic discrimination are a great source of public concern over potential harms that may arise from the use of such data and may foster reluctance to support or participate in precision medicine initiatives (Kaufman et al. 2009; Green et al. 2015; Blasimme et al. 2019). By prohibiting or mitigating such differential treatment, countries may be able to not only prevent those harms but also assuage public anxieties and help ensure that there is adequate public support for gathering and using big data in precision medicine. Other mechanisms to be considered relate to data sharing restrictions, already present in many jurisdictions, designed to prevent third parties like insurers from gaining access without consent to the raw data that could be used as a basis for differential treatment. Key Values Here, we highlight six values of particular relevance to precision medicine and big data. These values are derived from the longer list found in Xafis et al. (2019). They are not meant to be exhaustive of all relevant values in this space, but are particularly relevant and useful in addressing the issues discussed above. 280 Asian Bioethics Review (2019) 11:275–288 Substantive Harm Minimization Potential harms from precision medicine initiatives include genetic discrimination and group reputational effects-though we should also consider that prohibiting discrimination could harm other groups by causing an increase in their insurance premiums. Harm minimization efforts may be statutory, such as with genetic anti-discrimination legislation, or structural, as with data access limitations and encryption systems. Justice A wide array of individuals have contributed to the development of precision medicine, either through their data being used or their taxes being used to fund it. Contributors' lack of access to precision medicine innovations due to high cost or other factors, as well as lack of inclusion and inequitable prioritization, are potential injustices. The potential harms of discrimination and group stigmatization could also be considered injustices, insofar as they exacerbate existing social and power disparities. Public Benefit Precision medicine has the potential to substantially improve patient care by generating targeted therapies, preventative screening tools and more individually tailored pharmaceutical prescriptions to avoid adverse reactions. Big data can facilitate these benefits by accelerating the ability of researchers to draw the necessary insights, but that must be balanced against competing values discussed here. Procedural Transparency Absolute anonymity cannot be guaranteed with precision medicine, and therefore trust must be based on alternative systems of governance and protection. But that trust can only be earned if systems are sufficiently transparent, in terms of how they operate, manage and distribute individuals' data. Engagement Both ethically and pragmatically, engagement with the public is essential for precision medicine initiatives. Ethically, it provides legitimacy to the endeavour by helping ensure other procedural values like trustworthiness (which crucially relates to public attitudes and perceptions) are met and potential pitfalls are identified. Pragmatically, it can help further support for the responsible development of precision medicine by providing a guide for what uses would be socially acceptable. Reflexivity As an innovative and potentially disruptive approach to healthcare, precision medicine initiatives must be cognizant not only of their ethical implications but also that those implications can and will shift over time. A reflexive approach to precision medicine recognizes that the actual ethical issues faced will shift depending on the context and situation on the ground. This means avoiding one-off approaches to precision medicine ethical concerns and instead consistently revisiting decisions to adapt to an ever-changing landscape. Asian Bioethics Review (2019) 11:275–288 281 Case Study: Issues in Secondary Research Use of Routine Genomic Testing Data To illustrate how some of those values can inform deliberation over ethical issues in precision medicine and big data, let us consider a case of genomic data sharing. This is a fictional case that, while at present not a reality in any major healthcare systems, is a very real possibility in the near future. NHS England, in particular, has been rapidly expanding routine genomic testing; it has already committed to offering whole genome sequencing to all children with cancer and continues the expansion of routine sequencing in other areas (O'Regan 2019). The case is as follows: A large hospital is considering the deployment of routine whole genome sequencing in its clinics as part of continued service improvement. The primary purpose is to implement precision medicine innovations such as pharmacogenetics, targeted therapies and targeted preventativemedicine into the hospital's standard clinical care.Whole genomic sequencing is being conducted to facilitate additional discoveries and also allow for future insights to be implemented for these patients without the need for re-testing. The aim is both to reduce costs and to improve quality of care, which the hospital administration believes is a win-win for providers and patients. Given that precision medicine is still in its early stages, the hospital would also like sequenced data to be collated into a database that can be used for secondary data research, particularly by collaborators at other institutions, in other countries around the world. This would raise the hospital's reputation as a cutting-edge centre of research, as well as support the development of innovations that the hospital itself relies upon. Before proceeding, the administration wishes to consider the ethical ramifications of making genomic data available for secondary research use and what reasonable steps may be taken to mitigate any potential pitfalls. Here, we will work through the balancing approach presented in Xafis et al. (2019) to better understand these issues and actions that may be taken. Stating the Problems and Issues While the wisdom and practicality of routine whole genome sequencing in the clinic may be debated, such clinical management issues are somewhat outside the scope of this big data framework. We will instead focus on the further question of making the clinical data available to the big data ecosystem where rich data is shared, linked and analysed by many disparate researchers. A wide range of ethical issues arise in this context, but we will further focus on some special concerns related to the use of genomic data. For discussion of broader implications of depositing biomedical data in repositories, see the case study at the end of Xafis and Labude (2019); for discussion of issues in sharing real-world data with for-profit entities, see the case studies at the end of Lipworth (2019) and (Ballantyne and Stewart 2019). Any sharing of genomic data involves risks to the individuals concerned (in this case, hospital patients) from a data breach. Breaches not only could be caused by malicious actors but also as a result of inadvertent disclosure on the part of holders of genetic information. For example, DNA testing service Vitagene was recently found to have inadvertently disclosed thousands of records publicly online, including genetic test results (Grant 2019). This risk may increase as data is shared with more researchers, 282 Asian Bioethics Review (2019) 11:275–288 as there are more potential sources for a breach to occur. Genomic data breaches would be concerning, in particular, because of the risk of resultant genetic discrimination if the data were to be made widely available; given whole genome data is involved, reidentification may be possible, as discussed in the 'Anonymization' subsection above. Multigenerational genomic datasets could even reveal cases of misattributed paternity, leading to substantial disruption and psychosocial harm to families. There may also be broader social risks, depending on the type of research being conducted. As previously noted, attempts to use genetic markers for racialized therapeutic marketing approaches could contribute to the problematic reification of race. In addition, published research results could be stigmatizing to certain groups if they feed into existing ethnic or racial stereotypes. This happened most famously in the case of the Havasupai Tribe, where DNA gathered originally to study diabetes was used for other purposes, including delicate issues of mental health and migration, without properly attending to the values and sensitivities of members of the Tribe (de Vries et al. 2012). Identifying Relevant Values and Conflicts Among Them Public Benefit, Harm Minimization and Justice Since the proposal is to share genomic data with researchers outside the hospital, the potential public benefits are wide in scope. Analysis of the hospital's genomic data (either on its own or in conjunction with other data sources) may be used to draw insights of relevance to much wider populations. While the aggregate benefit of such studies could be quite large, it is not clear whether the benefits to individual hospital patients who contributed data are substantial enough to outweigh the risks involved. There may be a trade-off, then, between preventing harm to hospital patients, and maximizing the public benefit generated from the use of their data. Some of these harms may be characterized as injustices, as explicated above, which may give rise to special reason to reduce or prevent them. Engagement Achieving a balance between those two values of harm minimization and promotion of public benefit would be one of the central concerns of a data sharing project like this. However, that balance crucially relies on an estimation of the interests of a diverse group of stakeholders. Hospital administrators may have some idea of what those interests are, but direct engagement with stakeholders would be valuable in clarifying their content and the relative weight individuals place on them. Engagement strategies of the sort described in Xafis et al. (2019) could be used here. Transparency While in this setting transparency about the data sharing plans might be achieved by obtaining prospective consent from hospital patients, this would be limited in nature. Since particular aims of future researchers are not identifiable at the point of clinical care, consent would have to be broad-discussing the general conditions of sharing, scope of potential research and what level of oversight and governance would be used. Asian Bioethics Review (2019) 11:275–288 283 While such consent may have some moral force in authorizing the use of the data (Sheehan 2011), its limitations concerning the specificity of how patients' data emphasize the need for the hospital to carefully adjudicate the risks and benefits of allowing the data to be shared (Hofmann 2009). Transparency can also be achieved in other ways. Insofar as the interests of a variety of stakeholders are at stake, the hospital could explain how it came to a decision in this matter (for example, as an online resource). Ongoing uses of the data-with whom the hospital is partnering, for what research purposes, etc.-could be disclosed on the same platform, particularly so patients are made aware of the extent to which data about them is being shared and used. Reflexivity Solutions to these challengeswould have to be reflexive, taking into account the impact of its decisions and seriously evaluating whether the data's distribution actually end up generating the anticipated benefits. In the context of this case, reflexivity will be particularly relevant as the legal, social and cultural context around genomics changes. The risk of genetic discrimination, for instance, will be contingent on local laws and regulations that limit the use of the information in insurance and employment, while the risk of stigmatization may shift along with attitudes towards subgroups. At the same time, any purported benefits of research should not be taken for granted; reflexively would also involve evaluating the progress of research and adjusting sharing approaches as needed. Identifying Actions That Could Be Taken, Then Weighing Up the Relative Ethical Merit of the Options Declining To Share Any Genomic Data with Researchers The most straightforward option is for the hospital to enact a policy where no genomic data will be made available for secondary data research. The fewer people and institutions that have access to the data, the lower the risk of a breach. This option prioritizes a certain sort of harmminimization over public benefit: the hospital would refrain from exacerbating the risk of a data breach, and shut off the possibility of insensitive research. It also has the ancillary benefit of beingmore economical for the hospital, insofar as therewould be no need to spend resources establishing rigorous mechanisms to ensure data is shared responsibly. But if we view harmminimizationmore broadly, this policy could be seen as problematic: the hospital is forgoing the opportunity to prevent harm to society more broadly, by making valuable genomic data available for analysis that could contribute to the development of beneficial treatment regimes. Sharing Data with Certain Researchers A policy of making the genomic data available for researchers would instead prioritize the potential public benefits of the genomic data. This is incredibly rich information that is going to be gathered anyway. This option is much more complex than the preceding, though, as it would require setting up a robust system to determine what would be shared (raw whole genome? Smaller chunks? Linked to clinical outcomes?), in what form (identifiable, 284 Asian Bioethics Review (2019) 11:275–288 anonymous, pseudonymous?), who would receive the data (specified local researchers? International data repositories?), what criteria would be put on use (only certain kinds of research? Only not-for-profit? Must have a collaboration with the hospital?) and what protections are in place (what data security protocols? What infrastructure to prevent reidentification? What level of ethics committee approval is needed?). Addressing each of these would be necessary to ensure that harms are adequately minimized and public benefits maximized. Select the Option with the Most Ethical Weight and Communicate It to Stakeholders For illustrative purposes, let us examine what an argument for the second option- sharing the data-could look like: Sharing of clinical genomic data with researchers has an incredibly favourable riskbenefit ratio. There are risks of a breach, and anonymity of genomic data cannot be guaranteed, but these are manageable with appropriate security protocols and firm institutional rules against re-identification. Even if a breach occurred, it is unlikely individuals would face substantial genetic discrimination, as it is likely only experts in genetics would be in a position to interpret and draw meaningful conclusions from the breached data. And the cases of genetic discrimination that have been described to date originated from patients disclosing the information, not insurers or others learning about the information from a breach. And further risks of group harm can at least be mitigated by not sharing racial or ethnic details of patients. The benefits of sharing are admittedly somewhat nebulous-we should be wary of overhyping the promise of precision medicine. Nevertheless, genomic data does have real potential to improve certain areas of treatment and care, and even modest potential benefits can justify the relatively minimal risks of sharing. This argument is not decisive on its own. It requires further empirical investigation, particularly surrounding the claim that risks of sharing are indeed minimal. It could be, on the contrary, that genomic data breaches can cause substantial harm as analytics of genomic data becomes more straightforward. And even if the risk-benefit ratio is favourable now, that could change over time-and so reflexivity demands that, if the hospital embarks on a policy of sharing, this policy be periodically revisited. A decision against sharing data would still need to meet the standard of transparency. In light of the potential public benefit, the hospital should be open in its deliberation process and also be clear to researchers who query them as to their reasons. This could help prevent accusations that the hospital was acting primarily in self-interest, to keep potential innovations to themselves, when in fact a reasonable case can be made against sharing data based on the interests of patients themselves. This option would also require further consideration of the numerous questions relating to governance and management just discussed. For example, one strategy to minimize the risk of re-identification would be for the hospital could host and provide data access in a secure environment (i.e. people cannot download the data and link it to external data sources unless they hack the system and download it). Such a system would be expensive, however, and so there would be a trade-off between cost containment and risk management. Full exploration of these further issues are beyond the scope of this paper, but we hope the framework presented in Xafis et al. (2019) and applied in this article would be of use in those deliberations. Asian Bioethics Review (2019) 11:275–288 285 Conclusion The realization of the promise of precision medicine requires the collation and analysis of substantial amounts of big data. Part of that process should involve critical reflection not just on what innovations can be generated but also how the benefits will be distributed fairly among the population. The same applies to the potential harms from the data use; anonymization is becoming more limited as a tool for mitigation, and in any case, there are potential ramifications for groups if results are poorly framed and reinforce objectionable stereotypes. The large role of genetics in precision medicine is also relevant, as data may reveal information about family members who are not technically part of a given dataset, and the spectre of genetic discrimination looms- especially in jurisdictions that currently lack, or have incomplete, anti-discrimination frameworks. Attending to shared values of the sort highlighted here can help stakeholders grapple with these issues and contribute towards earning public trust in the enterprise of precision medicine. Funding The development of the Framework and its application to the six Domain papers was funded and supported by the Singapore National Medical Research Council Research, Innovation and Enterprise 2020 Grant. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. References Ballantyne, Angela, and Cameron Stewart. 2019. Big Data and Public-Private Partnerships in Healthcare and Research: The Application of an Ethics Framework for Big Data in Health and Research. Asian Bioethics Review 11 (3). https://doi.org/10.1007/s41649-019-00100-7. Bayer, Ronald, and Sandro Galea. 2015. Public health in the precision-medicine era. 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