Preconception Expanded Carrier Screening: A Discourse Analysis of Dutch Webpages.

Preconception expanded carrier screening (PECS) informs prospective parents about the risk of conceiving a child with a heritable genetic condition. PECS will also, for many, become an important screening test, and websites will likely play a vital role in providing information on this practice. The aim of this article is to examine rationalities in the information on PECS on Dutch websites. The method used is multimodal critical discourse analysis. This method allows an examination of norms and assumptions in the descriptions, as well as of the positions that are discursively made available. The data consist of publicly available material on websites from two genetics departments in the Netherlands. In the results, we present the three main discourses and subject positions that were identified: risk and the couple as possible mediators of severe conditions; the focus on scientific facts and rational conceivers; and severity of the conditions and the responsible couple. In this study, we highlight the importance of acknowledging the interrelation between epistemology and ethics in the discourse on PECS. Finally, it is claimed that the focus on scientific facts in information on PECS risks making existential and ethical dilemmas and choices invisible.

Qualitative study of GPs' views and experiences of population-based preconception expanded carrier screening in the Netherlands: bioethical perspectives.

OBJECTIVE: Between 2016 and 2017, a population-based preconception expanded carrier screening (PECS) test was developed in the Netherlands during a pilot study. It was subsequently made possible in mid-2018 for couples to ask to have such a PECS test from specially trained general practitioners (GPs). Research has described GPs as crucial in offering PECS tests, but little is known about the GPs' views on PECS and their experiences of providing this test. This article presents a thematic analysis of the PECS practice from the perspective of GPs and a bioethical discussion of the empirical results. DESIGN: Empirical bioethics. A thematic analysis of qualitative semi-structured interviews was conducted, and is combined with an ethical/philosophical discussion. SETTING: The Netherlands. PARTICIPANTS: 7 Dutch GPs in the Netherlands, interviewed in 2019-2020. RESULTS: Two themes were identified in the thematic analysis: 'Choice and its complexity' and 'PECS as prompting existential concerns'. The empirical bioethics discussion showed that the first theme highlights that several areas coshape the complexity of choice on PECS, and the need for shared relational autonomous decision-making on these areas within the couple. The second theme highlights that it is not possible to analyse the existential issues raised by PECS solely on the level of the couple or family. A societal level must be included, since these levels affect each other. We refer to this as 'entangled existential genetics'. CONCLUSION: The empirical bioethical analysis leads us to present two practical implications. These are: (1) training of GPs who are to offer PECS should cover shared relational autonomous decision-making within the couple and (2) more attention should be given to existential issues evoked by genetic considerations, also during the education of GPs and in bioethical discussions around PECS.

Parental substance and alcohol abuse: Two ethical frameworks to assess whether and how intervention is appropriate.

Ethical frameworks can support professionals' decision-making. Here, we identify two ethical frameworks to analyse the best support for families that struggle with parental substance or alcohol abuse. The first framework, which we call 'the framework of conflicting interests', is most prominent in the literature. Here, the interests of parents and children are weighed against each other using the medical ethical principles of respect for autonomy, justice, beneficence, and non-maleficence. The second framework is most prominent in a series of interviews we conducted with alcohol-dependent parents and professionals working in addiction care and youth care. This framework aligns more with an ethics of care, and starts with the assumption that the interests of people who are close to each other are often intertwined. This framework does not so much look at conflicting interests, but at relationships and vulnerability. We label this the ethics of care framework. In this article, we show the value of both frameworks and how they can support ethical decision-making.

"I Wish I Had Help Earlier. We Could Have Been Happier Sooner." Overcoming the Bystander Effect in the Care for Alcohol-Dependent Parents.

Parental alcohol dependency is associated with risks for the well-being of their children. However, guiding these families to support is often complicated. We interviewed 10 alcohol dependent parents, and held 3 focus group interviews with child welfare social workers, and alcohol and other drug workers. We identified a reluctance to act among professional and non-professional bystanders. Family members, neighbours, teachers, and general practitioners are often aware of parental drinking problems, but are reluctant to discuss them with the parents or to alert services designed to support families. The aim of this paper is to share the experiences of parents and show that parents appreciate interventions if done in a certain manner. Although parents were reluctant to discuss their drinking problem, they considered these problems as symptoms of underlying severe distress. They were highly motivated to get help for these underlying problems and wondered why they were not questioned about their distress by those around them. The silence of others reinforced pre-existing feelings of worthlessness and hopelessness. In this paper we analyse other's hesitation to intervene as a form of the bystander effect, and make suggestions on how this bystander effect can be overcome.

Managing shame and guilt in addiction: A pathway to recovery.

A dominant view of guilt and shame is that they have opposing action tendencies: guilt- prone people are more likely to avoid or overcome dysfunctional patterns of behaviour, making amends for past misdoings, whereas shame-prone people are more likely to persist in dysfunctional patterns of behaviour, avoiding responsibility for past misdoings and/or lashing out in defensive aggression. Some have suggested that addiction treatment should make use of these insights, tailoring therapy according to people's degree of guilt-proneness versus shame-proneness. In this paper, we challenge this dominant view, reviewing empirical findings from others as well as our own to question (1) whether shame and guilt can be so easily disentangled in the experience of people with addiction, and (2) whether shame and guilt have the opposing action tendencies standardly attributed to them. We recommend a shift in theoretical perspective that explains our main finding that both emotions can be either destructive or constructive for recovery, depending on how these emotions are managed. We argue such management depends in turn on a person's quality of self-blame (retributive or 'scaffolding'), impacting upon their attitude towards their own agency as someone with fixed and unchanging dispositions (shame and guilt destructive for recovery) or as someone capable of changing themselves (shame and guilt productive for recovery). With an eye to therapeutic intervention, we then explore how this shift in attitude towards the self can be accomplished. Specifically, we discuss empathy-driven affective and narratively-driven cognitive components of a process that allow individuals to move away from the register of retributive self-blame into a register of scaffolding 'reproach', thereby enabling them to manage their experiences of both shame and guilt in a more generative way.

Ethical issues in research on substance-dependent parents: The risk of implicit normative judgements by researchers.

When doing research among vulnerable populations, researchers are obliged to protect their subjects from harm. We will argue that traditional ethical guidelines are not sufficient to do this, since they mainly focus on direct harms that can occur: for example, issues around informed consent, fair recruitment and risk/harm analysis. However, research also entails indirect harms that remain largely unnoticed by research ethical committees and the research community. Indirect harms do not occur during data collection, but in the analysis of the data, and how the data is presented to the scientific and wider societal community. Highly stigmatized research subjects, like substance-dependent parents, are especially at risk of encountering indirect harm, because the prejudice against them is so persistent. In this paper we discuss two forms of indirect harm. First, researchers have to be aware how their results will be preceived by society. Even when subjects are presented in an objective way, further, out of porportion stigmatization can occur. Researchers sometimes try to counteract this by whitewashing their results, at the risk of downplaying their respondents' problems. The second risk researchers face is that their own normative judgements influence how they question such parents, report results and interpret statements. Researchers' own normative judgements may influence the way they present their subjects. This article reviews a broad range of research that exhibits such indirect harms, discussing how and why indirect harms occur and formulating corresponding recommendations on how to prevent them.

Introduction: Testing and Refining Marc Lewis's Critique of the Brain Disease Model of Addiction.

In this introduction we set out some salient themes that will help structure understanding of a complex set of intersecting issues discussed in this special issue on the work of Marc Lewis: (1) conceptual foundations of the disease model, (2) tolerating the disease model given socio-political environments, and (3) A third wave: refining conceptualization of addiction in the light of Lewis's model.

How to Recover from a Brain Disease: Is Addiction a Disease, or Is there a Disease-like Stage in Addiction?

People struggling with addiction are neither powerless over their addiction, nor are they fully in control. Lewis vigorously objects to the brain disease model of addiction (BDMA), because it makes people lose belief in their self-efficacy, and hence hinders their recovery. Although he acknowledges that there is a compulsive state in addiction, he objects to the claim that this compulsion is carved in stone. Lewis argues that the BDMA underestimates the agency of addicted people, and hence hinder their recovery. Lewis's work offers us a very much to be welcomed neurobiology of recovery. It offers addicted people a hopeful and respectful narrative for their recovery that treats them as agents rather than as damaged brains. However, I argue that overestimating people's agency can also result in people losing belief in their self-efficacy. Lewis's strong focus on the agency of addicted people might not match their experiences of struggle, hence reinforcing their feelings of guilt when they fail to control their use. I propose to replace the notion of addiction as a disease with a notion of a disease-like stage in addiction. I call this stage the duress stage in addiction, in which the addictive behaviour is largely impervious to the agent's values and to available techniques of self-control. However, the agent can overcome this stage by developing new techniques of self-control, by building on their self-concept and belief in self-efficacy, by changing their environments and habits, and by engaging in projects that are meaningful to the agent.

Stigma and Self-Stigma in Addiction.

Addictions are commonly accompanied by a sense of shame or self-stigmatization. Self-stigmatization results from public stigmatization in a process leading to the internalization of the social opprobrium attaching to the negative stereotypes associated with addiction. We offer an account of how this process works in terms of a range of looping effects, and this leads to our main claim that for a significant range of cases public stigma figures in the social construction of addiction. This rests on a social constructivist account in which those affected by public stigmatization internalize its norms. Stigma figures as part-constituent of the dynamic process in which addiction is formed. Our thesis is partly theoretical, partly empirical, as we source our claims about the process of internalization from interviews with people in treatment for substance use problems.

Strong-willed but not successful: The importance of strategies in recovery from addiction.

INTRODUCTION: Philosophers, cognitive and social psychologists and laypeople often subscribe to the view that willpower is central to recovery from addiction. But there are reasons to suspect that willpower is much less important to explaining recovery than this view suggests. METHODS: Here we report findings from a qualitative longitudinal study on how substance dependent people see their agency and self-control, and how their self-control develops over time. 69 opioid, alcohol and methamphetamine dependent people were interviewed over a 3 year period. RESULTS: Most of the participants described themselves as strong willed; in fact, as very strong willed. However, there seemed no correlation between having a (self-assessed) strong will and recovery status. Rather, the number of strategies cited by participants distinguished those in stable recovery from those who were not. Participants in recovery were also more enthusiastic about strategies than those who have not succeeded in controlling substance use. Willpower remained important, but was itself used strategically. CONCLUSIONS: People with addiction seem not to be short on willpower; rather, recovery is dependent on developing strategies to preserve willpower by controlling the environment.

Lessons in Biopolitics and Agency: Agamben on Addiction.

The concepts of 'biopolitics' and 'naked life' have become increasingly relevant in the debate on substance dependency due to the growing prominence of neuroscience in defining the nature of addiction and its threat to agency. However, these concepts are not necessarily well understood, and therefore may lead to oversight rather than insight. In this article we review the literature on Italian philosopher Giorgio Agamben, whose founding works on both concepts shed a different light on addiction. We argue that the current debate is missing a key insight from Agamben's work: the idea of agency past the subject, of agency past identity. We will illustrate how this can be an important form of agency against the stigmatization of users, making use of empirical data from our ongoing work on addiction and agency.

Pleasure and addiction.

What is the role and value of pleasure in addiction? Foddy and Savulescu (1) have claimed that substance use is just pleasure-oriented behavior. They describe addiction as "strong appetites toward pleasure" and argue that addicts suffer in significant part because of strong social and moral disapproval of lives dominated by pleasure seeking. But such lives, they claim, can be autonomous and rational. The view they offer is largely in line with the choice model and opposed to a disease model of addiction. Foddy and Savulescu are sceptical of self-reports that emphasize the ill effects of addiction such as loss of family and possessions, or that claim an absence of pleasure after tolerance sets in. Such reports they think are shaped by social stigma which makes available a limited set of socially approved addiction narratives. We will not question the claim that a life devoted to pleasure can be autonomously chosen. Nor do we question the claim that the social stigma attached to the use of certain drugs increases the harm suffered by the user. However our interviews with addicts (as philosophers rather than health professionals or peers) reveal a genuinely ambivalent and complex relationship between addiction, value, and pleasure. Our subjects did not shy away from discussing pleasure and its role in use. But though they usually valued the pleasurable properties of substances, and this played that did not mean that they valued an addictive life. Our interviews distinguished changing attitudes towards drug related pleasures across the course of substance use, including diminishing pleasure from use over time and increasing resentment at the effects of substance use on other valued activities. In this paper we consider the implications of what drug users say about pleasure and value over the course of addiction for models of addiction.