Fluent Essays

This discussion board forum will focus on Chapter 7 of the textbook, Vulnerability and Marginalized Populations, Jennifer Doudnas TED talk, How CRISPR Lets us Edit our DNA, Lujun Wangs TED talk, How to Create a World Where No One Dies Waiting on a Transplant, and the Believed podcast, The Parents. Please see attached instructions and text pages if you wish to write on that.  Jennifer Doudna: How CRISPR lets us edit our DNA | TED Talk   Luhan Yang: How to create a world where no one dies waiting for a transplant | TED Talk   The Parents Who Were, Unwillingly And Unknowingly, Witnesses To Their Childrens : Believed : NPR 203© The Author(s) 2016 D.H. Barrett et al. (eds.), Public Health Ethics: Cases Spanning the Globe, Public Health Ethics Analysis 3, DOI 10.1007/978-3-319-23847-0_7 Chapter 7 Vulnerability and Marginalized Populations Anthony Wrigley and Angus Dawson 7.1 Introduction Public health practitioners attempt to identify and then remove, or at least reduce, threats of harm. However, harm does not affect everyone in the same way. Some people and communities are resilient, whereas others are more susceptible to poten- tial harm. Much public health work is carried out by, or on behalf of, government s. Where people or communities are at great risk of harm, government has a clear and fi rm responsibility to protect its citizens. One way of describing a potential source of such a risk of harm is to focus on the idea of vulnerability . This introduction explores the concept of ‘vulnerability’ and the role that it may play in public health. Vulnerability is a concept often used in public health ethics and more broadly in bioethics —but its exact meaning is unclear. Roughly, it indicates that an individual or group is thought to have a particular status that may adversely impact upon their well-being, and that this implies an ethical duty to safeguard that well-being because the person or group is unable to do so adequately themselves. This concept, although important, consistently eludes precise defi nition. The diffi culty in defi ning the con- cept arises from disagreement as to how to characterize the idea of “special status” and to whom it applies. As a result, more and more categories of individuals and groups are being classifi ed as vulnerable in an ever-increasing range of situations. This raises the concern that almost everyone can be classifi ed as vulnerable in some The opinions , fi ndings , and conclusions of the authors do not necessarily refl ect the offi cial posi- tion , views , or policies of the editors , the editors ’ host institutions , or the authors ’ host institutions . A. Wrigley , PhD Centre for Professional Ethics , Keele University , Staffordshire , UK A. Dawson , PhD (*) Center for Values, Ethics and the Law in Medicine, Sydney School of Public Health , The University of Sydney , Sydney , Australia e-mail: [email protected] mailto:[email protected] 204 way and, in turn, that almost every activity now requires this additional attention. If true, then the concept of ‘vulnerability’ ceases to be useful because if everyone is vulnerable, then no one is. There is currently no clear, single, defi nitive account of this concept that is univer- sally accepted, although numerous different approaches have been adopted by, for example, various international bodies in their guideline s. In this chapter, we shall critically examine some leading defi nitions of vulnerability and attempt to explain and classify them to make clear the differences in approach. Then we will offer an account of vulnerability that seeks to provide a universal basis for the everyday use of the concept while avoiding the pitfalls associated with the other defi nitions. Our approach aims to reduce the concept to a simple role, not as a basic moral concept in its own right, but as a marker, or signal, to public health practitioners that something in the situation before them requires ethical attention. The real ethical work is to be done by the practitioner, not by vague appeal to the idea of vulnerability, but via the application of other concepts and ethical concerns that are already familiar in public health and bioethics . We shall use case studies to illustrate how this approach works. 7.2 Different Approaches to the Concept of Vulnerability Before looking at the approaches taken to defi ne vulnerability, a worthwhile starting point is to examine the concept that can be derived from the term’s everyday use. Vulnerability, in line with the etymological root of the word meaning “to wound,” is widely interpreted as ( V1 ) Open to harm or under threat of harm. This basic defi nition is perfectly adequate, for a range of uses, with context deter- mining the nature and kind of harm at stake. However, such a defi nition only captures a broad background use as to how the concept should be employed. Though this defi - nition will be suffi cient for most purposes, further clarity and greater specifi city of the concept is needed here. In attempting to refi ne this basic defi nition, several challenges arise. First, how we formulate any defi nition will change whether or not we see some- one as vulnerable. Therefore, in providing a more substantial defi nition, one has to avoid the problem of inadvertently excluding those who should be considered genu- inely vulnerable or including those who are not vulnerable. Second, if we want the concept of vulnerability to function as something that generates a duty or responsibil- ity to prevent harms from befalling people, then we must move beyond a basic, factual description and include some normative ethical element, something along the lines of what Goodin c haracterizes as “the principle of protecting the vulnerable” ( 1985 , 110). Providing a sound defi nition of v ulnerability that satisfi es these elements is more diffi cult than might be expected. Hurst ( 2008 ) captured this diffi culty well by liken- ing it to the attempts of six blind men trying to describe an elephant. As each blind man touches a different part of the elephant—the trunk, ear, tusk, tail, etc.—they cannot agree on how to describe the animal. This analogy maps directly to the chal- lenge of defi ning vulnerability. Because different perspectives abound on what con- A. Wrigley and A. Dawson 205 stitutes the grounds of vulnerability, consensus on the defi nition is diffi cult to reach (Schroeder and Gefenas 2009 ). Much of the focus on vulnerability in the bioethics literature has been in research ethics, where many international guidelines recommend or impose some duty to provide extra protection for those considered vulnerable. However, these guideline s generally fail to defi ne the concept (although the Council for International Organizations of Medical Sciences [CIOMS] ( 2002 ) does provide a defi nition) and, instead, list groups commonly considered vulnerable (U.S. Department of Health, Education, and Welfare 1979 ; World Medical Association 2013 ; CIOMS 1993 ). Although this practice is slowly changing, strategies for analyzing and defi ning the concept are usually limited to simply adding or subtracting from a list of properties, conditions, or categories that typify what it is to be considered vulnerable. The approaches taken to defi ne vulnerability beyond everyday use ( V1 ) can be categorized broadly into three basic types: ( V2 ) Vulnerability is a universal condition that humanity has in virtue of our physi- cal or social nature (Fineman 2008 ; Hoffmaster 2006 ; Turner 2006 ; Rogers et al. 2012 ; MacIntyre 1999 ; International Bioethics Committee of UNESCO [IBC] 2013 ; and to s ome extent Hart 1961 ). or ( V3 ) Vulnerability involves one or more specifi c attributes, contexts, or group types (Rendtorff 2002 ; and this is perhaps also the approach taken by the International Bioethics Committee of UNESCO when it considers what it calls special vulner- abilities, 2013 , 5–6). or ( V4 ) Vulnerability involves one (or more) familiar but overarching ethical conc ept(s) (Goodin 1985 ; Wrigley 2010 ). Before we critically examine each approach, it is worth noting that all defi nitions are perfectly adequate depending on what we want the concept to do or what role we want it to play. One possible explanation for the failure to produce a single, uni- versally agreed-upon defi nition of this concept is that, put simply, those who use the term have different aims and roles in mind. 7.3 Concerns Surrounding Approach (V2): Universal Condition Approaches to the concept along the lines of ( V2 ) use vulnerability to mark every human as somehow open to harm—including physical injury, dependency on oth- ers, loss of power, and so forth—just by virtue of being human (Fineman 2008 ). Hence, by that logic, everyone is vulnerable because we all have bodies that can be injured, disabled, and fail through illness and old age. On this view, we are also 7 Vulnerability and Marginalized Populations 206 vulnerable because whilst we live in social units that require interdependence , high quality interaction does not always exist. ( V2 ) is a very particular way of thinking about the concept of vulnerability inas- much as it motivates and drives discussion of the human condition in general. However, the major problem with such accounts is that the general truth that we, as humans, are open to harms of various kinds or that we live in social groups, fails to pick out a spe- cial category because it applies to absolutely everyone. It becomes diffi cult to talk of ‘ degrees ’ or ‘ types ’ of vulnerability on such accounts. This, in turn, has led to the criti- cism that such an approach results in the “naturalizing” of the concept, whereby it is held to be normal or natural to be vulnerable in one way or another (Luna 2009 ). Of course, if the idea behind using the term ‘ vulnerable ’ is ( a ) to articulate a fundamental aspect of the human condition, ( b ), to say something substantive about the interdepen- dence of humans, and, perhaps, ( c ) to thereby affi rm a natural commitment to human solidarity , then much substantive (and controversial) content is built into the concept, and our discussion moves far from the everyday meaning of vulnerability. If we are all vulnerable, then appealing to this concept as a means to avoid a harm or seek special protection becomes problematic, as it is hard to see how particular priorities can be set. This approach makes vulnerability far too broad to serve as anything other than an underlying presumption about all human beings, and so it is unable to generate ethical duties beyond what we owe to every human by virtue of being human. As a result, this approach does not provide an account of vulnerability that can identify cases where people or groups are potentially open to harm in any special way. 7.4 Concerns Surrounding Approach (V3): Specifi c Attributes, Contexts, or Groups In direct contrast to the approach taken in ( V2 ), ( V3 ) characterizes vulnerability by identifying it with some specifi c attribute, context, or group membership. This approach focuses on vulnerability in terms of something , such as physical vulnera- bility, social vulnerability, vulnerability in terms of lacking capacity, vulnerability in terms of belonging to a certain identifi able group, or vulnerability because of belonging to a marginalized population, etc. This approach to defi ning the concept is an excellent way of illustrating the sorts of conditions that we might want to pick out as requiring special consideration in terms of susceptibility to harm. As such, ( V3 ) serves as a useful heuristic device because it gives examples of the sorts of things that are often considered vulnerabili- ties. However, this check-list approach is to borrow David Lewis’s ( 1986 ) phrase, an attempt at explanation by “way of example,” whereby we provide some key para- digmatic examples or illustrations of what constitutes vulnerability and state that vulnerabilities are “these sorts of things.” This approach does a poor job of defi ning vulnerability. Listing everything that falls under a concept, even if it were possible, does not give us a good defi nition of that concept. ( V3 ) neither tells us whether the examples listed are appropriate nor guides our decision making on controversial cases where identifying someone as A. Wrigley and A. Dawson 207 vulnerable is unclear. Further, by using the ( V3 ) approach, attention is directed away from the underlying question of what vulnerability is ; and instead, the focus is on whether or not to add a particular group to a continually expanding unstruc- tured list of examples (Rogers et al. 2012 ). Of course, any such list might prove useful as an aide memoir during, for example, an emergency event. Such a prag- matic role may be useful, but it should not be mistaken for an ontological category or conceptual boundary. The ( V3 ) approach has therefore met with the criticism that it is both too broad and too narrow to satisfactorily defi ne vulnerability (Levine et al. 2004 ; Schroeder and Gefenas 2009 ; Luna 2009 ). Concerns about being too broad stem from the list of vulnerabilities becoming infl ated to the point where “virtually all potential human subjects are included” (Levine et al. 2004 ). As such, the same concern for ( V2 ) applies to ( V3 ), since both approaches fail to specify in suffi cient detail those who need additional or special protection from harms . ( V3 ) is also, potentially, too narrow because it focuses all attention onto specifi c or group characteristics and therefore fails to address concerns outside the particular designated categories (Rogers et al. 2012 ). It will, therefore, potentially miscatego- rize certain individuals or groups as not being vulnerable if, for example, they are a group that has not been encountered previously or if some trait has not made it onto the list of specifi ed characteristics. Moreover, by focusing on specifi c or group char- acteristics, ( V3 ) can stereotype individuals who fall under category headings (Scully 2013 ). If, for example, we assign names to different categories of vulnerability (e.g., ‘the elderly’, ‘the disabled,’ or ‘women,’ or ‘the poor’ as categories of vulnerabil- ity), then many people could be classifi ed as vulnerable without them necessarily being at any greater risk of harm. 7.5 Concerns Surrounding Approach (V4): Overarching Concepts The ( V4 ) approach explains vulnerability in terms of one or more overarching but more familiar ethical concept(s). Perhaps the best example of this kind is Goodin ’s ( 1985 ) account of vulnerability, which builds on the everyday use of the term ( V1 )— open to or under threat of harm— but goes a step further by exploring what the relevant harms might be. This leads Goodin to interpret “harm” in terms of a person’s “welfare” or “interests” so giving us an initial defi nition of being vulnera- ble in terms of ‘ being susceptible to harms to one ’ s interests ’( 1985 , 110–114). However, as the concepts of ‘welfare’ and ‘interests’ can in turn be open to a great deal of interpretation, including the possibility of focusing on subjective expli- cations involving the satisfaction of preferences or desires, further clarifi cation is needed. To this end, Goodin suggests that a particular sub-group of interests, that is—people’s “vital interests” or “needs”—are the universally important welfare considerations that we need to be concerned about. On this view, one is vulnerable if one’s needs are threatened. And one is most vulnerable if one’s most vital needs are threatened. 7 Vulnerability and Marginalized Populations 208 Goodin also adds an explicit normative role to the concept of vulnerability by imposing an ethical duty to safeguard the potentially vulnerable from harm. This role is imperative if the concept of vulnerability is to be anything more than a factual description of an individual’s or a group’s characteristics. Goodin does this by link- ing his account of vulnerability to the “principle of protecting the vulnerable,” which is, essentially, an obligation to protect the vital interests of others. Hence there is a direct link between the classifi cation of someone as being vulnerable, with a requirement on the part of others to protect them from any potential harms. Despite being a highly infl uential account of vulnerability, this approach has been criticized. One concern is that it potentially promotes widespread paternalism in an attempt to meet others’ needs (Rogers et al. 2012 ), thereby characterizing all vulnerable people as, in some way, being helpless. This criticism misses the mark, though, because being vulnerable by Goodin’s account does not mean one is power- less. More telling, however, are the concerns that this account does nothing more than reduce the concept of vulnerability to the well-recognized concept of needs, together with a moral theory that demands we aid those in need. In essence, this implies that the concept of vulnerability is redundant and could be replaced with the concept of being in (serious) need. 7.6 Simplifying the Concept of Vulnerability (V5): The Moral-Marker Approach Rather than continuing this attempt to defi ne vulnerability along the lines of the approaches already mentioned ( V2 , V3 , and V4 ), an account of vulnerability can be offered in much simpler terms. Instead of seeking a substantive defi nition that tries to establish conditions for vulnerability, another option is to interpret the word “vul- nerability” as nothing more than an empty marker or signal for potential moral concern. This approach can be seen in Hurst’ s view of vulnerability as a sign of “increased likelihood of incurring additional or greater wrong” ( 2008 ). However, this view can be taken further. A formal moral-marker approach simplifi es the account of vulnerability by avoiding any reliance on moral theory or preconceived wrongs as part of the defi nition. On this account, vulnerability will simply be ( V5 ) A marker that additional consideration needs to be given to whatever existing ethical issues there may be. It can be seen that what is then in dispute between the different accounts presented is what sorts of considerations are the relevant ones. However, if we stop at the point where “vulnerability” is recognized as just a warning marker, we don’t need to engage with the substantial task of trying to provide a catch-all defi nition that some- how incorporates all physical, mental, or emotional, etc. cases that might constitute vulnerability. Instead, we can focus on substantive ethical concepts such as harm, consent, exploitation, etc. and explore how each applies to the particular case before us. On the basis of this approach, “vulnerability” says nothing at all about what gen- erates the need for any special scrutiny because the substantive ethical weight of the A. Wrigley and A. Dawson 209 concern (and how to address it) requires us to engage with these substantive moral concepts. So, for example, it says little to talk about marginalized populations as being vulnerable, but if we recognize the ‘moral marker’ of vulnerability here, we might then explore how exploitation, inequity , and harm are relevant when deliberating about a particular case. One of the priorities for educating public health profession als about ethical issues is to seek to increase their sensitivity to the relevant features of each situation, rather than teach them the formulaic application of rules or vague concepts such as that of “vulnerability” (Coughlin et al. 2012 ). The ( V5 ) approach offers other advantages as well. For example, it avoids stereo- typing based merely on belonging to a specifi ed category; it avoids exclusion on the grounds of not already being on the list of vulnerable groups; and it avoids the vacu- ity of identifying “all” as vulnerable, while maintaining the crucial aspect that the concept marks out the need for special ethical scrutiny. Trying to provide more substantial components to the defi nition of vulnerability diverts scrutiny and energy from where it matters most—sensitive, rational thought about specifi c problems— and instead, promotes a formulaic approach to ethical safeguarding. Although other writers on vulnerability, such as Levine et al. ( 2004 ) and Luna ( 2009 ), criticize this approach claiming generic guidance about paying “special atten- tion” or giving “special consideration” to something is not useful, the same criticism could also apply to an account that identifi es specifi c categories or relies on some over- riding concept. For example, if we try the specifi c category or context route ( V3 ) so that, say, we hold “the elderly” vulnerable, how would that guide our actions without reference to established concerns about, for example, physical harms or exploitation? The same holds true of ( V4 ) accounts such as Goodin ’s focus on vulnerability as being open to harms to one’s interests, which then requires further analysis of “vital” needs. The best that can be said for such accounts is that each provides something of a heuris- tic, teaching anyone who wants to learn ways in which harms or wrongs might arise. The importance and implications of these issues become apparent as we consider the various cases in the rest of this chapter. The implications of ( V2 ), the approach focused on vulnerability as arising from the human condition, is that all are vulnerable, includ- ing the police and immigration offi cials in Blight’s and McDougall’s cases, the public health offi cials with responsibility for launching national programs to reduce Sudden Infant Death Syndrome (SIDS) in the Jonas and Haretuku case, and the prison governor in Christopher et al.’s case. This outcome demonstrates the key problem with this view. The very concept of vulnerability ceases to have much meaning, although presumably there might be a retreat to the thought that some individuals and populations are ‘more’ vulnerable than others, although it is unclear how this is to be specifi ed. Many of the cases could more obviously be used to endorse ( V3 ), the approach focused on specifi c groups, contexts, or categories. Many of these cases focus on marginalized groups within society, such as prison inmates (Christopher et al.), immigrants, asylum seekers , refugees (McDougall; Blight), substance abusers (Christopher et al.), minority communities of various kinds (Bernard et al.; Blight; Jonas and Haretuku), and the poor (Vergès et al.). This is a traditional, infl uential, and powerful way of thinking about vulnerability. However, as stated previously, this approach has its problems. Does it necessarily follow that if you belong to one of these groups that you are vulnerable? You may well be at increased risk of harm 7 Vulnerability and Marginalized Populations 210 of various kinds if you belong to such groups. However, you might also be at increased risk of harm as a recreational drug user, skydiver, or American football player, although individuals belonging to such groups are not likely to be seen, intuitively, as being necessarily vulnerable. The more specifi c focus on providing a normative explanation for vulnerability pre- sented in the work of writers such as Goodin ( V4 ), is more useful, in that we can begin to clearly identify subgroups that are at risk of harm to their vital interests (the girl fed through a tube and unable to feel pain involved in a forced deportation case: Blight), rather than just being routinely disadvantaged (the surrogate encouraged to take on that role because of poverty: Vergès et al.) or at increased risk of harm due to the cultural traditions or choices of their parent s (Jonas and Haretuku). How should we think about risk factors and vulnerability? Some will think of smoking around children (increasing the risk of SIDS) as being an individual’s choice. Others will argue that it is unfair to assume that it is always individuals that are responsible for such choices and the resultant outcomes, as people may be addicted to nicotine or they may have become smokers through the infl uence of norms within their social environment. The advantage of the ‘moral-marker’ approach ( V5 ) is that it allows us to dive beneath the surface offered by the label of ‘vulnerability’ and offer more sophisticated explanations for the situations described in the cases, as well as providing the oppor- tunity to develop strong normative reasons to respond. For example, all of these cases are about various kinds of injustice, disadvantage, and inequities in society, and their impact on individual and community health . They are appropriate issues for those working in public health to be concerned about precisely because they provide refer- ence to the identifi cation of various harms at the population-level, and many of the solutions to these issues will have to come through collective and public action. As the discussion of the different approaches to defi ning vulnerability consid- ered above illustrate, most of the approaches to vulnerability do little more than encourage us to engage in additional ethical scrutiny using already well recognized and well understood moral concepts. The fi nal ‘moral-marker’ approach ( V5 ) sug- gests that this is exactly what the concept should be used for, and nothing more. References Coughlin, S.S., A. Barker, and A. Dawson. 2012. Ethics and scientifi c integrity in public health, epidemiological and clinical research. Public Health Reviews 34(1): 71–83. http://www.publi- chealthreviews.eu/upload/pdf_fi les/11/00_Coughlin.pdf . Accessed 20 June 2015. 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Vulnerability in research and health care, describing the elephant in the room? Bioethics 22(4): 191–202. International Bioethics Committee (IBC) of UNESCO. 2013. The principle of respect for human vulnerability and personal integrity . http://unesdoc.unesco.org/images/0021/002194/219494e. pdf . Accessed 20 June 2105. Levine, C., R. Faden, C. Grady, et al. 2004. The limitations of “vulnerability” as a protection for human research participants. American Journal of Bioethics 4(3): 44–49. Lewis, D. 1986. On the plurality of worlds . Oxford: Blackwell. Luna, F. 2009. Elucidating the concept of vulnerability: Layers not labels. International Journal of Feminist Approaches to Bioethics 2(1): 121–139. MacIntyre, A. 1999. Dependent rational animals: Why human beings need the virtues . Chicago: Open Court. Rendtorff, J.D. 2002. Basic ethical principles in European bioethics and biolaw: Autonomy, dig- nity, integrity and vulnerability—Towards a foundation of bioethics and biolaw. Medicine, Health Care, and Philosophy 5(3): 235–244. Rogers, W., C. MacKenzie, and S. Dodds. 2012. Why bioethics needs a concept of vulnerability. International Journal of Feminist Approaches to Bioethics 5(2): 11–38. Schroeder, D., and E. Gefenas. 2009. Vulnerability: Too vague and too broad? Cambridge Quarterly of Healthcare Ethics 18(2): 113–121. Scully, J.L. 2013. Disability and vulnerability: On bodies, dependence, and power. In Vulnerability: New essays in ethics and feminist philosophy , ed. C. Mackenzie, W. Rogers, and S. Dodds. New York: Oxford University Press. Turner, B. 2006. Vulnerability and human rights . University Park: Pennsylvania State University Press. U.S. Department of Health, Education, and Welfare. 1979. The Belmont report: Ethical principles and guidelines for the protection of human subjects of research , vol. Publication No. (OS) 78-0012. Washington, DC: U.S. Government Printing Offi ce. Wrigley, A. 2010. Vulnerable and non-competent subjects. In European textbook on ethics in research , ed. J. Hughes, 49–74. Luxembourg: Publications Offi ce of the European Union. World Medical Association. 2013. Declaration of Helsinki—Ethical … All posts should be written in your own words and be referenced and cited with at least one scholarly peer-reviewed journal article to support your position. That means even if you are replying to another person’s posts, your post still needs to be original, and referenced, and cited with a scholarly peer-reviewed journal article. The reason that PRJA citations and references are a requirement is that it elevates the discussion. The citation also allows readers to understand exactly what portion of the post is paraphrased from the reference. No direct quotes are allowed - paraphrasing is expected. The source in which you are required to reference and cite in your discussion posts needs to come from a peer-reviewed journal article. A book (textbook or otherwise) is not appropriate. 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