Paper Ideas: Qualitative Research and ELSI

From BrothersBrothers


  1. Public Opinion Polling and Normative Claims
    • The problem of democracy, the tyranny of the majority
  2. 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
  3. 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
  4. Virtue ethics provides a way to understand how empirical data lead to practice.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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?



  1. Debate about the role empirical research in bioethics for a while now
  2. At first that debate was about inclusion of empirical methods into bioethics proper, with attention to the limitations of practical ethics.
  3. 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?
  4. 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.
  5. 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.
  6. 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.
  7. 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

  1. 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 variety of social science that was inspired by the quantitative approach of the natural sciences (Schwandt).

Beyond Theory to Policy and Practice

Practical Moral Reasoning and Encountering Experience

Implications for Normative Gene-Ethics

Implications for Empirical ELSI Research