Talking about Disability in Prenatal Genetic Counseling: A Report of Two Interactive Workshops

Women are commonly offered testing in pregnancy to determine the health of their baby. An important component of informed decision-making about prenatal testing is provision of relevant, accurate, meaningful information concerning the conditions that are being tested for—many of which, such as Down syndrome, are associated with a varying degree of physical and intellectual disability. A range of health professionals, including genetic counselors, may provide information and support throughout the testing process, but available data suggest that discussion of disability is frequently absent or limited. To investigate genetic counselors’ perceptions of this situation and identify potential barriers to discussion we facilitated interactive workshops at the 2007 National Society of Genetic Counselors Annual Education Conference (NSGC) and the 2008 European Meeting on Psychosocial Aspects of Genetics (EMPAG). Working groups identified relevant psychosocial issues and impediments to discussion (NSGC) or used a two-part scenario to promote discussion (EMPAG) and reported findings in notes and a closing plenary discussion. Inductive content analysis revealed that participants considered informed decision making to be a major reason for presenting information about disabilities in prenatal genetic counseling and endorsed the value of including information about daily life with Down syndrome and other disabilities. However, they identified three broad types of impediments to such discussion: counseling issues concerning the most appropriate manner to discuss disability under the complex circumstances of prenatal genetic counseling, less than optimal training and experience in addressing these issues, and perceived limitations in the participants’ knowledge and understanding of life with disability. Our analysis of the responses from the workshop participants and additional thoughts on these issues have led us to develop recommendations for further research, training and clinical practice.     

If Reason is ‘in the World’, Where Exactly is it Located?

In his recent book James Kreines argues that for Hegel reason is “in the world”, but how we are to understand the idea of reason's being so located? One answer, suggested by more traditional theocentric readings of Hegel, would be to appeal to the idea of a divine thought, coursing through the world. Another answer, more congenial to modern sensibilities, might locate reason within the rational activities of inter‐subjectively connected human beings, as suggested by Terry Pinkard's idea of the “sociality of reason”. Kreines seems to want to avoid suggestions of the former, but in distancing himself from approaches like the latter, he also seems to refuse the more metaphysically modest alternative. In retracing the contours of Kreines's nuanced attempt to reinflate Hegel's metaphysics as a “metaphysics of reason”, I pose the question as to whether he can avoid reintroducing a more extravagantly metaphysical Hegel than he wishes.     

Poem as Proposition in the Analects: A Whiteheadian reading of a Confucian sensibility[1]

I suggest that ubiquitous references made by Confucius to poetic songs in the Analects reveal an important aspect of his philosophy. This aspect involves the assumption that things in the world “resonate” with one another. Using elements of Alfred North Whitehead's thought, as well as metaphysical insights from the Han Dynasty text, Huainanzi, I first present an aesthetic theory along with a supporting cosmological vision that enhances our appreciation of this trait in the Confucian world. With these preliminaries in mind, I approach the Analects itself. I will isolate the term xing, or “stimulation “, and demonstrate how this term allows us to understand the function of poetry for the early Confucians. I conclude that poetry was thought to behave much like what Whitehead called “propositions”, and that this function assumes a world with certain basic tendencies normally associated with Daoist cosmology.     

A dimensional approach to analyzing lone offender terrorism

The challenge of “lone offender” terrorism is a serious one for law enforcement and security services around the world. Though the tactic has been used for hundreds of years, the rising number—in some countries—and diversity of “lone” attacks are increasingly troublesome. Attempts to clearly define the phenomenon, however, have been rather elusive. In this review, we suggest that viewing the dimensions of lone offender terrorism along a continuum, rather than forcing categorical distinctions, may provide a useful approach for classifying or analyzing lone offender attacks. We introduce three dimensions as a starting point for discussion—Loneness, Direction, and Motivation—and attempt to illustrate how these dimensions are linked to key investigative questions as a potential attacker proceeds on a pathway from idea to action.     

Commentary: How Individual and Profession-level Factors Influence Discussion of Disability in Prenatal Genetic Counseling

Hodgson and Weil (Journal of Genetic Counseling, 2011) reports on two interactive workshops in which genetic counselors identified a broad set of counseling issues that may be impediments to promoting an adequate discussion of disability in prenatal genetic counseling. The present commentary discusses two factors that we infer underlie these counseling issues. First, countertransference concerning disability, which is normal and expected, may influence genetic counselors’ decisions about raising and exploring the complex topic of disability in prenatal genetic counseling. Second, the limited involvement of the profession of genetic counseling in the complex social and ethical issues of disability provide little guidance to the individual genetic counselor with respect to discussing disability in prenatal diagnosis counseling. We suggest both factors must be acknowledged and addressed in order to adequately implement the recommendations presented in Hodgson and Weil (Journal of Genetic Counseling, 2011) as well as other efforts to increase discussion of disability in prenatal diagnosis counseling in the service of informed decision making.     

HUMAN UNIQUENESS FROM A BIOLOGICAL POINT OF VIEW

This article seeks to provide some genetic perspectives on the question “Just How Special Are Humans—Really?” It begins with an introduction to how genetic variation can provide information about the past. It continues by discussing two ways in which genetic analyses has, on multiple occasions, shown that humans are less unique than we thought we are. We have a cognitive bias to toward thinking we are special. Our species has colonized an ecological niche not exploited by any other species on our earth, but how much of our adaptation to that niche is cultural rather than genetic?     

Can You Keep a (Genetic) Secret? The Genetic Privacy Movement

This paper reviews the literature on genetic privacy, especially since 1995 and the first proposal for national genetic privacy legislation. Since that time, a majority of states have passed some form of genetic privacy legislation, and efforts to pass federal legislation are ongoing. Such new laws, however, remain untested in the courts and their effects are unclear. If they fail to provide additional protections against discrimination for most people, their most significant impact may be in their ability to either diminish or enhance the power of genetic information and to influence the way individuals view themselves and others. How does “genetic exceptionalism”—the idea that genetic information is different from other types of medical information—relate to “genetic essentialism”—the idea that we are to a large extent shaped by our genes? Anthropological views on genetics and personhood bring a new perspective to this ongoing debate. Implications for counseling practices are also explored.     

High-Risk Palliative Care Patients’ Knowledge and Attitudes about Hereditary Cancer Testing and DNA Banking

Even at the end of life, testing cancer patients for inherited susceptibility may provide life-saving information to their relatives. Prior research suggests palliative care inpatients have suboptimal understanding of genetic importance, and testing may be underutilized in this clinical setting. These conclusions are based on limited research. This study aimed to estimate genetic testing prevalence among high-risk palliative care patients in a National Cancer Institute-designated comprehensive cancer center. We also aimed to understand these patients’ understanding of, and attitudes toward, hereditary cancer testing and DNA banking. Palliative care in-patients with cancer completed structured interviews, and their medical records were reviewed. Among patients at high risk for hereditary cancer, we assessed history of genetic testing/DNA banking; and related knowledge and attitudes. Among 24 high-risk patients, 14 (58.3%) said they/their relatives had genetic testing or they had been referred for a genetics consultation. Of the remaining 10 patients, seven (70%) said they would “probably” or “definitely” get tested. Patients who had not had testing were least concerned about the impact of future testing on their family relationships; two (20%) said they were “extremely concerned” about privacy related to genetic testing. Of patients without prior testing, five (50%) said they had heard or read “a fair amount” about genetic testing. No high-risk patients had banked DNA. Overall, 23 (95.8%) said they had heard or read “almost nothing” or “relatively little” about DNA banking. Written materials and clinician discussion were most preferred ways to learn about genetic testing and DNA banking. Overall, this study demonstrates underutilization of genetics services at the end of life continues to be problematic, despite high patient interest.     

The Utilization and Choices of Aneuploidy Screening in a Midwestern Population

The types, interpretation, and use of first- and second-trimester aneuploidy screening are often unclear for many women. This impairs appropriate decision making and understanding of the implications of prenatal genetic testing options. The purpose of this study was to examine the utilization of Stepwise Sequential screening in our Midwestern population, demographic factors associated with choice of screening and method of risk reporting and it’s potential impact on women’s choices. First trimester screening was performed for 2,634 women during the study period. Results were not reported or “framed” as “positive” or “negative”. Rather, the specific age-risk and screen-risk for T21 were relayed, along with options for follow-up Stepwise Sequential screening and invasive testing. Nearly 80 % of women declined Stepwise Sequential screening. Minorities and women of lower education were least likely to pursue further screening. Less than 4 % of the study population elected invasive testing. First trimester screening was associated with a 53 % reduction in amniocenteses and 20 % fewer CVS’s compared to pre-first trimester screening availability. Reporting age-and screen-risks for T21, rather than classifying results as “positive” or “negative” based on a pre-determined threshold, was associated with a low uptake of further testing.     

What Are the “True” Statistics of the Environment?

A widespread assumption in the contemporary discussion of probabilistic models of cognition, often attributed to the Bayesian program, is that inference is optimal when the observer's priors match the true priors in the world—the actual “statistics of the environment.” But in fact the idea of a “true” prior plays no role in traditional Bayesian philosophy, which regards probability as a quantification of belief, not an objective characteristic of the world. In this paper I discuss the significance of the traditional Bayesian epistemic view of probability and its mismatch with the more objectivist assumptions about probability that are widely held in contemporary cognitive science. I then introduce a novel mathematical framework, the observer lattice, that aims to clarify this issue while avoiding philosophically tendentious assumptions. The mathematical argument shows that even if we assume that “ground truth” probabilities actually do exist, there is no objective way to tell what they are. Different observers, conditioning on different information, will inevitably have different probability estimates, and there is no general procedure to determine which one is right. The argument sheds light on the use of probabilistic models in cognitive science, and in particular on what exactly it means for the mind to be “tuned” to its environment.     

“Testing Times,Challenging Choices”: An Australian Study of Prenatal Genetic Counseling

In many countries pregnant women deemed to be at increased risk for fetal anomaly following a screening test may attend a genetic counseling session to receive information and support in decision-making about subsequent diagnostic testing. This paper presents findings from an Australian study that explored 21 prenatal genetic counseling sessions conducted by five different genetic counselors. All were attended by pregnant women who had received an increased risk result from a maternal serum screening (MSS) test and who were offered a diagnostic test. Qualitative methods were used to analyze the content and structure of sessions and explore the counseling interactions. Findings from this cohort demonstrate that, within these prenatal genetic counseling sessions, counselor dialogue predominated. Overall the sessions were characterized by: a) an emphasis on information-giving b) a lack of dialogue about relevant sensitive topics such as disability and abortion. Arguably, this resulted in missed opportunities for client deliberation and informed decision-making. These findings have implications for the training and practice of genetic counselors and all healthcare professionals who communicate with women about prenatal testing.     

Emotions beyond brain and body

The emerging consensus in the philosophy of cognition is that cognition is situated, i.e., dependent upon or co-constituted by the body, the environment, and/or the embodied interaction with it. But what about emotions? If the brain alone cannot do much thinking, can the brain alone do some emoting? If not, what else is needed? Do (some) emotions (sometimes) cross an individual's boundary? If so, what kinds of supra-individual systems can be bearers of affective states, and why? And does that make emotions “embedded” or “extended” in the sense cognition is said to be embedded and extended? Section 2 shows why it is important to understand in which sense body, environment, and our embodied interaction with the world contribute to our affective life. Section 3 introduces some key concepts of the debate about situated cognition. Section 4 draws attention to an important disanalogy between cognition and emotion with regard to the role of the body. Section 5 shows under which conditions a contribution by the environment results in non-trivial cases of “embedded” emotions. Section 6 is concerned with affective phenomena that seem to cross the organismic boundaries of an individual, in particular with the idea that emotions are “extended” or “distributed.”     

The Paradox of Beginning: Hegel,Kierkegaard and Philosophical Inquiry

This paper reconsiders certain of Kierkegaard's criticisms of Hegel's theoretical philosophy in the light of recent interpretations of the latter. The paper seeks to show how these criticisms, far from being merely parochial or rhetorical, turn on central issues concerning the nature of thought and what it is to think. I begin by introducing Hegel's conception of “pure thought” as this is distinguished by his commitment to certain general requirements on a properly philosophical form of inquiry. I then outline Hegel's strategy for resolving a crucial problem he takes himself to face. For his account of the nature of thought depends upon the idea of a form of inquiry in which nothing whatsoever is presupposed; but this idea appears basically paradoxical inasmuch as the mere act of beginning to inquire in a certain way embodies an assumption about how it is appropriate to begin. Turning to Kierkegaard, I consider a key objection to the effect that Hegel's strategy for resolving this paradox depends on the incoherent idea of a purely reflexive act of thinking. Finally, I draw out some central features of the alternative account of “situated” thought and inquiry which Kierkegaard presents as distinctively Socratic.     

How Can We Love Our Enemies When We Kill Our Friends? Shifting the Theological Debate Over Violence

Violence is often thought of in terms of intentional, discrete actions, and in the debate between so-called “neo-Anabaptists” and “neo-Augustinians” this has often been the focus, especially around actions like policing and war. However, this idea of violence is insufficient and, intentionally or not, obfuscates forms of violence like the “slow violence” of destructive economic arrangements that harm not only enemies but friends as well. Through an investigation of the apparel industry this article addresses the too-narrow understandings of violence that implicate theologians themselves in the “systemic” and “slow” violence inflicted through exploitative economic arrangements and systematic environmental degradation. The violence of the contemporary political economy compounds exponentially when one considers not only the human costs of global industry but also the toll it takes on the planet, which in turn affects the world’s poorest people no matter their geographic location or type of work. How might various sides of the more traditional argument find common ground for doing justice around these forms of violence in which they already daily participate, rather than giving the majority of attention to actions taking place periodically (or speculating about violence that may not even happen)? In short, violence is not just the realm of militaries, it is the reality of our global political economy, and this must be addressed by theologians of all types and traditions.     

Psychoanalysis: The Sacred and the Profane

Colleagues from a variety of perspectives have written about the propensity to enshrine psychoanalytic theory. The meaning of the word “enshrine” is to cherish as sacred an idea or philosophy and protect it from change. In other words, the way we view psychoanalysis, our theories of mind and technique, become holy writ and we have divided the world of theory into the sacred and the profane. This is the kiss of death for theory, which must constantly evolve and change, but comforting for the analyst who believes he is on the side of the right, the sacred. In this paper I will discuss how our propensity to enshrine theory has had a debilitating effect on the development of psychoanalysis and, in particular, as a treatment for the most vulnerable people who seek our help. I also address the idea that movement away from enshrined positions allows us to construct different versions of reality. In this context, the notion of “action at a distance” is presented along with the attendant idea of psychoanalytic entanglement.     

Generating possibilities

Our knowledge of the most basic alternative possibilities can be thought of as generated recursively from what we know about the actual world. But what are the generating principles? According to one view, they are recombinational: roughly, alternative possibilities are generated by “patching together” parts of distinct worlds or “blotting out” parts of worlds to yield new worlds. I argue that this view is inadequate. It is difficult to state in a way that is true and non-trivial, and anyway fails to account for our knowledge that there might have been other things, properties, relations, and combinations of these than there actually are. I sketch and defend an alternative view based on the distinction between determinable and determinate properties: roughly, alternative possibilities are generated by “intra-determinable” variation, variation from one determinate to another of the same determinable.     

Disability as Abject: Kristeva,Disability, and Resistance

In this essay, I develop an account of disability exclusion that, though inspired by Julia Kristeva, diverges from her account in several important ways. I first offer a brief interpretation of Kristeva's essays “Liberty, Equality, Fraternity and … Vulnerability” and “A Tragedy and a Dream: Disability Revisited” and, using this interpretation, I assess certain criticisms of Kristeva's position made by Jan Grue in his “Rhetorics of Difference: Julia Kristeva and Disability.” I then argue that Kristeva's concept of abjection, especially as developed by Sara Ahmed and Tina Chanter, offers important insights into disability oppression; Ahmed's and Chanter's contributions improve upon Kristeva's account. Understanding disability as abject helps to explain both resistances to interacting with disabled others and ways to resist disability oppression. Finally, I argue that understanding disability as abject is preferable to recent deployments of Lacanian theory in disability studies and that this account is compatible with social models of disability.     

Building on Wachtel’s Points About Implications of Mitchell’s Ideas: Suggestions Based on the Participatory Philosophical Perspective for Locating the Person in the World of Practical Activities

In his paper “The Relationality of Everyday Life,” Wachtel (this issue) successfully moves us further along the path of the “unfinished journey” (p. 509) of Mitchell’s work. I begin my comments by pointing out how Wachtel identifies the importance for both theory and practice of focusing on everyday life in addition to early parent–child interactions and what transpires in psychoanalytic/psychotherapy sessions. His points about everyday life include rejecting one-person notions of internal processes that are “frozen” in time and offering a way to understand the vicious circles that are a prominent part of most clinical problems. My comments also include suggestions about how we can take another step along the path Wachtel has encouraged us to pursue—which he aptly describes as treating the person as a “self-in-context” (p. 507)—if we approach basic issues about the person’s relationship to others and the world at large along the lines of the participatory philosophical perspective (e.g., Westerman, 2005, 2013, 2014; Westerman & Steen, 2007). That perspective takes as its cornerstone idea the view that from the outset the person is a participant in practical activities. Guided by the participatory perspective, I add to Wachtel’s suggestions about how a focus on everyday life can enter into therapeutic work; present a different view of what are typically called “inner” processes and discuss some of the implications of that view for clinical work; and, most important, put forward an alternative account of vicious circles.