View source for Paper Ideas: Qualitative Research and ELSI

===Ideas/Thoughts===
#Public Opinion Polling and Normative Claims
#*The problem of democracy, the tyranny of the majority
#This is clearly an instance of is not leading to ought.
#*But my larger concern is not that is cannot lead necessarily to ought, but rather than when "is" is intended to inform the "ought", we need a framework for understanding how that translation should be made
#The growth of social scientific methods and virtue ethics both seemed to have grown out of the same discontent with principlist ethics.
#*Compare some of the critiques waged by both against that approach
#Virtue ethics provides a way to understand how empirical data lead to practice.
#The messages that go along with patient preferences research are consequentialist, and based on threats that objections to research approaches could lead to setbacks in research. The solution is engagement for the sake of transparency, which framed as "respectful engagement", and with the understanding that approaches not found to be acceptable to public audiences will not be pursued, which is framed as preventing consequences.
#Qualitative research can be used to get at underlying beliefs, and there are a number of ways to do that. It is possible (references?) that people do not volunteer or are even aware of the beliefs that underlie their preferences. It is also possible that people respond differently to questions when they perceive that their responses are going to drive policy, and when that happens they are likely going to err on the side of control.
#Community engagement is a self-fulfilling value - We ask people whether they want power in decisions, which we assume they do because we are asking.
#Aristotelian approach to ethics: Specific circumstances are too numerous to apply principles without knowledge of what the particulars. Empirical research, from the perspective of deduction or quantitative research, cannot tell us about particulars, but rather can give us a hint about what varieties of particulars are out there. This can open imaginative possibilities so that we can explore ways in which our practical moral reasoning may work in situations or in response to particulars that we didn't really anticipate. Still, inductive empirical research, such as qualitative research, can serve as a source of thick description. Thick description starts to look more like internal knowledge about particulars, and this can '''really''' get us moving toward thinking about practical moral reasoning.
#Although admittedly some accounts of empirical research get represented as finding what is "really there", much of the literature in the social sciences stresses the interpretive element of empirical research - we make observations, and then through an interpretive process that is subject to our reflexivity and, frequently, the critical eye of others, we develop theory. In developing our theory we seek to faithfully represent what is there, but due to the interpretive element in this process, we accept that this account is influenced by our interpretive action. Theory is therefore not what "is", but what appears to be when viewed through a particular lens. This has to implications for bioethics. First, empirical research should not be equated with "descriptive ethics" - this term implies that we are going out into the world and discovering what is there. We are not describing, but rather engaging. There can be little question, I think, that engaging is an unqualified good for applied ethics. Unless, of course, unless we mistakenly think we are describing when we are actually engaging. Second, the question is not about moving from an "is" to an "ought." Rather, moving from theory to moral analysis is itself a second interpretive act - a move in which we apply a particular type of analytic insight onto our informed theories about the world around us. This interpretative step is just as important as the first interpretative step from observation to theory. In the same way, though, this step is subject to both reflexivity about the interpretive moves we are making, including the limitations in those moves, and also critique from others. In order to enable our own reflexivity, and to admit out work to critique, we need to "show our work". One way to do this is by addressing the validity and reliability of our analysis with respect to our theory - where does our theory about the social world inform our moral analysis? In what ways? To what degree does our moral analysis hinge on the reliability and validity of our theory with respect to our observations? In other words, what is the relationship between our observations, theories, and moral analysis on the one hand, and our need for rhetorical support from empirical methods on the other?
===Outline===
====Introduction====
#Although bioethics has long claimed a multidisciplinary identity, there has been significant debate since at least the 1980s on the role empirical research should play in this traditionally normative-focused field.
#At first that debate focused on the inclusion of empirical methods into bioethics proper, with commentary often delivering serious critique of practical ethics approaches and arguing that empirical approaches could help address those limitations.
#As the role of empirical research in bioethics become more prominent, the debate turned from inclusion to integration: Should normative analysis and empirical research exist as parallel yet incommensurable approaches within a hybrid field, or are their ways to integrate the two into a single coherent discourse?
#This tension has been given a new form, however, in the area of so-called ELSI research, where ethical and legal implications, with their traditional focus on normative analysis, have been placed alongside social implications, which have had a traditional focus on empirical research. Now, the field of ELSI research arguably extends beyond bioethics proper into a range of policy and practice questions. Just as medical sociologists in the past have argued for an identity independent of bioethics, ELSI researchers have gathered from a number of fields to address issues that continue to arise in the wake of the Human Genome Project. The tension between empirical and normative approaches, therefore, now extends across and between disciplines as these disciplines address a related set of questions, although perhaps with different understandings of those questions.
#This time, the shoe is on the other foot. No longer are those interested in empirical methods struggling for position within a field dominated by normative approaches, but rather a new field has been built around funding mechanisms, and those funding mechanisms, including both the Wellcome Trust and the NIH, have clearly placed empirical methods in the fore.
#Given this renewed tension within this intensely active field, and especially given the prominent position empirical methods have come to play in this still-forming field, it seems appropriate to re-address the issue of how normative analysis and empirical research can and should co-exist.
#With this realignment of priority, the question is no longer whether empirical research has something to contribute to answering ethical questions, but rather how should we understand empirical evidence when deliberating on normative questions about clinical and research practices and policies, questions in which normativity may not be framed in explicitly ethical terms. What resources does have moral philosophy hold for addressing how empirical research can be translated to real-world practices?
#In this paper, I will argue that misguided attention has been attributed to empirical data on the basis of both epistemological misunderstandings, and rhetorical misrepresentations. While we have achieved some degree of integration between empirical and normative methods, these misunderstandings and misrepresentations of empirical data have precluded a substantive discourse, both inside bioethics and across the disciplines engaged in ELSI research, on how these two methods can be unified under a common epistemological framework. I will propose a framework for unifying qualitative research and the virtue approach to normative analysis. By providing this understanding, I hope to create opportunities for coherent and meaningful use of empirical data in dealing with policy and practice questions within the discourse on ELSI issues.

====Epistemology Commitments in Qualitative Research Methods====
#Although the variety of methods collected under the umbrella of qualitative research do share a number of elements, they are perhaps more commonly defined in contradistinction from quantitative methods. In fact, qualitative inquiry emerged, by some accounts, as a reformist movement in opposition to the positivism and foundationalist epistemology of the strand of social science heavily inspired by the quantitative approach of the natural sciences (Schwandt).
#But because both qualitative and quantitative social science methods focus on developing knowledge of the empirical world, they can be understood to attain this knowledge through similar processes. These similar processes include the production of an initial product, observations, which can take a wide variety of forms. These observations are the data that are then subjected to a process of analysis and interpretation. Through this interpretative process, a second product is produced. This is usually understood as a theory. The setting of sociology, the theory is likely to be about the dynamics of social interaction, while in psychology the produced theory is likely to refer to psychological processes.
#While this general framework applies to both qualitative and quantitative approaches to empirical inquiry, they demonstrate stark differences with respect to the details, and these differences are attributable to the underlying differences in epistemological understandings.
#It is obvious, for example, that the observations recorded through quantitative approaches, survey results example, are quite different from the types of observations that might be gathered during qualitative work, including fieldnotes, interview transcripts, etc. Underlying this difference is certainly a difference in attention to context: qualitative methods focus on the contexts within which social phenomena occur. Methods such as participant observation and semi-structured interviews allow for those contextual factors to be explored, while quantitative methods downplay the role of context by accentuating those factors are amenable to generalization across contexts. But at a more fundamental level, these differences grow out of differing epistemological assumptions.
#For quantitative methods, observations are facts. These facts, such as the response provided on a survey or factors recorded in sociological databases, represent the world "as it really is." Measurement effects, such as the order of questions on a survey, are recognized to impede the accurate representation of the world "as it really is," but this effect can be minimized through rigorous data collection methods and statistical adjustments.
#Qualitative inquiry, on the other hand, acknowledges the contexts within which observed events occur, but also the contextual factors that influence the way events are observed and recorded. The participant observer, for example, is a part of the context within which observed events occur, and therefore influences the observed events. Going further, in certain cases the qualitative research may be interested in gathering information that cannot be obtained through observation alone; he or she must interact directly with others in order to elicit the desired information. Through this interaction, including the relationship between the observer and the observed, as well as the words and 
#Recall that a second ago I said that the observer introduces words and ideas when eliciting information. These words and ideas are not neutral, or spontaneous, but are rather the product of certain types of explicit and implicit theories about the way things work. The explicit theories might be those that are being studied; for example, in ELSI, the theory I might be studying is about the respect for persons that is expressed in policies to return results...
#Similarly, the types of theories generated are usually quite different. Quantitative methods lends themselves to quantitative generalizations. For example, a survey may conclude that The distinction between qualitative and quantitative empirical research can be framed as a disagreement about how each of these steps should be understood from an epistemological perspective.
#From the epistemological stance of quantitative inquiry, observation is perhaps not completely unproblematic. However, most quantitative social research at least accepts that there is a social reality that is potentially knowable through observation. On the other hand, the qualitative investigators tend to...

====Practical Moral Reasoning and Encountering Experience====
#The social science critique of principlism mirrors the virtue critique of principlism.
#Principlism is a form of deontological ethics, in which moral problems are framed as issues with identifying the moral value of different choices. Deontological ethics has tended to frame this issue in terms of rules. From a practical perspective, moral rules are difficult to apply in concrete situations because of their structure as rules. In complex moral situations it becomes difficult to identify which rules apply. It is also often the case that moral rules seem to conflict, and when this occurs it becomes difficult to perceive which options are least problematic, since all workable responses may require the breaking of one or more moral rules.
#At a more fundamental level, though, deontological approaches suffer from epistemological challenges. It is one thing to balance rules in concrete moral situations when everyone agrees on the moral rules. However, in a pluralist society there is necessarily disagreement, often intense disagreement, surrounding which moral rules should be followed. There is no single moral authority that can resolve epistemological disagreements about which rules constitute our moral duty.
#The principlist innovation is to frame these rules instead as principles. Principles benefit from a good deal more flexibility, since they claim to represent more general guidelines about morality. Even though moral actors may be unable to attain agreement about moral rules, they may be able to agree that certain general principles apply.  When such agreement can be attained, the principles can be weighed against one another to explore the moral value of different courses of action.
#Perhaps the most persistent problem with this approach is that general agreement about principles simply fails to create an adequate common ground for moral agents to engage substantively about options. People can agree about the principles but disagree irreconcilably about their pertinence and authority in specific situations.
#Many consider this problem to provide adequate motivation to discard the principlist approach. But it is worth noting that principlism fails not only on practical grounds, but also on epistemological grounds. Advocates of the principlist approach argue that there is significant agreement on the four principles throughout the history of human morality. This is clearly not the case, as the devastating critique of autonomy has shown. Any attempt to name the principles that should be accounted for in moral situations must face the challenge that there is no epistemological tool that can lead to consistent agreement on either the choices or the definitions of such principles.
#

====Beyond Theory to Policy and Practice====
#Policy and practice ideas are developed from theories about social or psychological dynamics. But they are also the product of implicit or explicit theories about the ways sociological or psychological dynamics can and should influence policy and practice.

====Implications for Normative Gene-Ethics====
#Imaginative understanding
#Something about practical reasoning

====Implications for Empirical ELSI Research====
#Need to challenge and interact with informant, to get at underlying assumptions, to correct misunderstandings, and to elicit values rather than opinions.
#Public opinion polls
#*Surveys: introduces words and ideas. Statistical correction or adjustment or survey design.
#*But surveys are subject to the same limitations as qualitative research: in eliciting certain types of information, including preferences, we are not only introducing the types of preferences, and therefore forcing the respondent to fit his or her preferences into our categories, but we are also introducing theories about those preferences. For example, when asking a respondent whether they think they should have access to individual results, we are implicitly communicating that there is a reason they might want those results, and that access is contested. The response is therefore influenced by the respondent's agreement with those theories: having no information about whether the results are meaningful, the respondent is likely to assume so.  But the respondent does have a theory about access, and that is that access to personal information should not be restricted.