Attitudes toward genetic counseling and prenatal diagnosis among a group of individuals with physical disabilities

Few studies have been published on the attitudes of people with physical disabilities toward genetic counseling and prenatal diagnosis. Articles in the lay press and social science literature on this topic, mainly written by disability rights activists and advocates, imply opposition to prenatal diagnosis and the field of clinical genetics by the physically disabled population. In this study, 15 adults with physical disabilities were interviewed regarding their attitudes toward genetic counseling and prenatal diagnosis. Genetic counseling and prenatal diagnosis were generally viewed favorably by this sample of the disability community. Only a small percentage of the sample perceived genetics to be eugenic. Implications for genetic counseling and future research are discussed.     

Prenatal diagnosis, personal identity, and disability

A fascinating criticism of abortion occasioned by prenatal diagnosis of potentially disabling traits is that the complex test-and-abortion sends a morally disparaging message to people living with disabilities. I have argued that available versions of this "expressivist" argument are inadequate on two grounds. The most fundamental is that, considered as a practice, abortions prompted by prenatal testing are not semantically well-behaved enough to send any particular message; they do not function as signs in a rule-governed symbol system. Further, even granting, for the sake of argument, the expressive power of testing and aborting, it would not be possible, contra the argument's proponents, to distinguish between abortions undertaken because of beliefs about the disabling conditions the fetus might face as a child and abortions undertaken for many other possible reasons -- e.g., because of the poverty the fetus would face or the increase in family size that the birth of a new child would occasion. Here, I respond to criticisms of those arguments, and propose and defend another: the expressivist argument cannot, in general, distinguish successfully between abortion and therapy as modalities for responding to disabilities.     

The invisible made visible?

With the starting point in a story about a dancer with a profound disability, the topic for critical discussion in this article is prenatal diagnosis in the Nordic countries in light of concepts of what it means to be human and human fulfilment. More specifically, the focus is on human life with limited capabilities and how a widened view of such a life is crucial in the task of creating a society where all human beings can be perceived as desirable and of equal worth. In the first part of this article the practice of prenatal diagnosis is showed to be filled with narrow conceptions of what it means to be human and perspectives are brought to light that can be argued to have been made invisible in the introduction and implementation of prenatal diagnosis in the Nordic countries as well as in the ethical debate. In the second part, the vision and actualization of L'Arche is discussed as an example of how befriending people with disabilities can challenge mainstream ethical narratives and widen a narrow view of morality and what it means to be human.     

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.     

The next exclusion debate: assessing technology, ethics, and intellectual disability after the Human Genome Project

Recent scientific discoveries have made it much easier to test prenatally for various genetic disabilities, such as Down syndrome. However, while many observers have heralded such "advances" for their effectiveness in detecting certain conditions, others have argued that they perpetuate discrimination by preventing the birth of children with disabilities. This article examines the ethical and social implications of the Human Genome Project for individuals with intellectual disabilities and their families. It details the critique of prenatal testing articulated by many disability rights activists as well as scholarly and professional responses to that critique. A review of the pertinent research literature includes perspectives of genetic professionals, ethicists, disability studies scholars, parents of children with disabilities, and disabled individuals themselves. Finally, the article explores how future research endeavors, policies, and practices may more effectively integrate and respect the positions of these various stakeholders.     

Disability in the family: a life span perspective

This article provides an overview of disability in families. The goal of the article is to raise awareness of the status of people with disabilities and their families to develop culturally relevant psychological support. Families have widely varying perspectives on disability; those perspectives influence responses to disability from the preconception and prenatal developmental stages through old age. An international literature review is provided with consideration of cultural meanings of disability, preparation for dealing with disability, coping strategies, support, developmental dynamics, competing needs of family members, and ethics. Voices of people with disabilities and their families are included.     

Respecting Embedded Disability

In certain ways, many disabilities seem to occupy a middle ground between illnesses like cancer and identity‐traits like race: like illnesses, they can present a wide variety of obstacles in a range of social and natural environments and, insofar as they do, they are something we should prevent potential people from having for their own sake; at the same time, those same types of disabilities can be, like race, a valuable part of the identity of the persons who already have them. I consider this seemingly dual nature of a significant class of disabilities to attempt to understand the proper relation of those disabilities to persons and how we should value or respect them. I argue for a distinction between embedded disabilities (e.g. John's blindness) and general disabilities (e.g. blindness‐in‐general); importantly not everyone with a disability will turn out to have an embedded disability. I then show that expressing negative value judgments about general disabilities does not typically express disrespect for people with disabilities — thereby addressing a long‐standing charge made by many in the disabilities community. Finally, I show that unlike with disabilities, expressing negative judgments about the general form of identity‐traits like race does typically express disrespect for people with those identity‐traits.     

Genetic Counseling, Reproductive Behavior and Future Reproductive Intentions of People with Neurofibromatosis Type 1 (NF1)

Neurofibromatosis type 1(NF1) is a complex and variable inherited disorder. The complexity and variability present particular difficulty for genetic counseling. Thirty-three people with NF1 of reproductive age were interviewed about their experience of genetic counseling, their past reproductive behavior and future intentions. One third reported having had no genetic counseling or not having it until after their first child. In part, this may be due to delay in diagnosis but also indicates poor access to genetic services. Only three people had ever been offered prenatal genetic testing and only one had accepted. Although testing is still technically difficult, the greatest deterrent to uptake of prenatal testing for NF1 is the variability of the disorder. However, six of the 17 people planning future pregnancies would want a test with a view to termination if necessary. Others would welcome testing in order to be prepared but not to terminate. We discuss some of the factors which influence reproductive decision making for people with NF1 and some of the difficulties in genetic counseling in such a variable and complex disorder.     

Disability,Respect and Justice

Recent political philosophers have argued that criteria of social justice that defend distributing resources to individuals on the basis of the disadvantages of their natural endowments are disrespectful and disparaging. Clearly influenced by the social model of disability, Elizabeth Anderson and Thomas Pogge have recently defended criteria of social justice that distribute resources to people with disabilities on the basis of eliminating discrimination, not making up for so‐called natural disadvantage. I argue that it is implausible to suggest that just entitlements for people with disability can be secured solely by eliminating discrimination. Resources for people with disabilities must sometimes be justified on the grounds that some natural endowments pose disadvantages even in societies that do not discriminate. I argue further that there need be nothing at all disrespectful about this way of explaining disadvantage; nor have proponents of the social model of disability or political philosophers provided any compelling reasons for supposing that it is disrespectful. There is thus no motivation for Anderson's and Pogge's attempts to secure justice for people with disabilities by appealing solely to the imperative to eliminate discrimination.     

Disability Rights,Prenatal Diagnosis and Eugenics: A Cross-Cultural View

This paper considers the disability rights critique of genetic testing in the context of different communities and the issue of nondirectiveness. Despite the wide usage of genetic diagnosis in Israel, no public debate has emerged there concerning disability rights and prenatal testing. The common attitude that emerged from interviews with Israeli representatives of organizations “of’’ and “for’’ people with genetic diseases and congenital disabilities can be described as a two-fold view of disability: support of genetic testing during pregnancy, and support of the disabled person after birth. This two-fold view is explained as a secular construction situated in legal, economic and cultural contexts. The paper concludes by considering the implications of the “two-fold view’’ of disability for the profession of genetic counseling. It is argued that awareness of the existence of conflicting views among clients—such as the view of the ‘disability critique’ as well as of the “two-fold view of disability’’—should strengthen the significance of nondirectiveness.     

Stigma of mental and physical illness and the use of mobile technology

Research has shown the stigma attached to mental disabilities, yet little research has directly compared the experiences of people with physical disabilities and those with mental disabilities. Not only are both conditions likely perceived as stigmatizing, but the pervasive use of mobile technology may be one means by which people with disabilities can manage and understand their disability. Four hundred and eighty-seven individuals with physical and/or psychological disabilities completed a survey examining whether they would be willing to use mobile technology to manage their disability and how stigmatizing they perceived their disability to be. Willingness to use mobile technology was related to the age of the sample as well as the type of disability. Individuals with psychological disabilities were more likely to use certain forms of mobile technology relative to those with physical disabilities. Observed differences between physical and psychological disabilities are discussed in terms of the symbolic interaction stigma model.     

Freedom and Disability Rights: Dependence,Independence, and Interdependence

The increasing focus on disability rights—as found, for instance, in the U.N. Convention on the Rights of Persons with Disabilities (CRPD)—challenges philosophical imaginaries. This article broadens the philosophical imaginary of freedom by exploring the relation of dependence, independence, and interdependence in the lives of people with disabilities. It argues (1) that traditional concepts of freedom are rather insensitive to difference within humanity, and (2) that the lives of people with severe disabilities challenge philosophers to argue and conceptualize freedom not only as independence and interdependence but also as dependence. After tracing this need through a Hegelian understanding, via Julia Kristeva's work on disability, and finally the CRPD, it concludes that a unified solution might not be possible. Hence, it argues that disability issues necessitate philosophical modesty.     

Global Perspectives on Disability and Mission

This article starts by exploring what disability is and why we should not be limited by only one definition. It then reflects on challenges and possibilities of historical review as it relates to disability by key church figures. In looking at the theology of disability in the modern era, the article argues that in order to move from the margins, we need to embrace a practical theology of embodiment that goes beyond inclusion to belonging. Scholars on disability and theology are therefore called upon to embrace a practical theology of disability through incorporating people with disabilities at the centre of developing a theology.     

Disabilities and impairments: strategies for workplace integration

This article argues that disabilities are, within many of the U.S. debates, best understood as certain kinds of impairment affecting a person's capabilities to perform socially defined roles and functions within specific environments. We also argue that it is not the impairments per se that lead to claims about what we ought to do or ought not do for people with disabilities. Rather, it is only within the context of capabilities being linked to the concept of freedom--almost universally valued in the current U.S. socio-political environment--that disability issues take on an ethical tenor. Additionally, we link the notion of disability to that of social capital. In particular, we argue that any social organization that discriminates against people with disabilities by attenuating their opportunities within that environment also decreases the social cohesion that exists within that organization. Such corporate climates promote organizational structures and processes that fail to optimize facilitation of the mutual benefits of the members. Finally, we discuss three different kinds of accommodation strategy: assistive technologies, systemic personal change, and universal design. We suggest a case-based (casuistic) approach to problems caused by disabilities. Using methods from both philosophy and public policy, we then build policies for accommodations incrementally, based on an application of those methods to the cases, and resulting in a more nuanced process enabling the creation of policies that take account of the experiences of both disabled and non-disabled people.     

A factor analysis for identifying people with disabilities’ mobility issues in built environments

Neighborhood built environments (BE) have been recognized as an important aspect that can, directly and indirectly, impact people with disabilities’ mobility. While many efforts have been made to improve the quality of BE, people with disabilities still perceive inequality in BE. The objective of this study is to identify the factors influencing people with disabilities’ attitudes toward BE that can facilitate or suppress their mobility, using exploratory factor analysis. This study specifically focuses on people with physical disabilities and people with visual impairments living in Austin, TX and Houston, TX metropolitan areas in USA. Data was gathered through an online survey. This study identified three factors from the sample: 1) barrier-free BE; 2) BE supporting safe travel; and 3) walkable BE. In addition, the factors were compared according to the respondents’ demographic information, such as income level, disability type, and private car use availability in households. Regarding income level, low-income individuals with disabilities perceived BE more negatively than their counterparts did. As for private car availability, people with disabilities who have no car in their households had a more negative perception of BE. However, no differences were found in the attitudes across disability types. This study contributes to understanding what BE factors are important for people with disabilities. The findings suggest the importance of establishing more targeted and prioritized strategies, considering people with disabilities’ neighborhoods and individual characteristics, for the improvement of their mobility.     

Depression in the Context of Disability and the “Right to Die”

Arguments in favor of legalized assisted suicide often center on issues of personal privacy and freedom of choice over one's body. Many disability advocates assert, however, that autonomy arguments neglect the complex sociopolitical determinants of despair for people with disabilities. Specifically, they argue that social approval of suicide for individuals with irreversible conditions is discriminatory and that relaxing restrictions on assisted suicide would jeopardize, not advance, the freedom of persons with disabilities to direct the lives they choose. This paper examines the idea promoted by some proponents of assisted suicide that it is reasonable to be depressed about one's diminished quality of life in cases of irreversible illness or disability and, therefore, such depression should not call into question the individual's competence to request assistance in dying. The concept of rational depression is defined and examined in the context of: four real-life cases involving individuals with disabilities who requested assistance in dying; a set of criteria commonly applied to decision-making to determine rationality; and research bearing on the emotional status of people with disabilities. It is concluded that although disability is associated with particular socially mediated stressors, there is no theoretical or empirical evidence to indicate that depression and its role in the right to die is dynamically different, more natural, or more reasonable for disabled people than for non-disabled people.     

Minority Minds: Mental Disability and the Presumption of Value Neutrality

Elizabeth Barnes has recently developed an account of disability that is sensitive to the role of self-evaluation. To have a physical disability is, according to Barnes, to have a body that is merely different from the norm. Yet, as Barnes notes, some disabilities will genuinely frustrate some life plans. It may be the case, therefore, that a disability is instrumentally bad for a person and that acquiring one may be a genuine loss. Equally, however, a person may genuinely value a disability such that it is instrumentally good for them and that they experience the acquiring of it as a gain. Notably, Barnes explicitly restricts this analysis to physical disabilities, leaving open the status of mental disabilities. Nevertheless, Barnes does not rule out the extension of her model to this category, and she expresses a desire to see future work on other disabilities built upon it. This article takes up this challenge, making the case that to possess a mental disability is merely to possess a minority mind.     

Imposing Genetic Diversity

The idea that a world in which everyone was born “perfect” would be a world in which something valuable was missing often comes up in debates about the ethics of technologies of prenatal testing and preimplantation genetic diagnosis (PGD). This thought plays an important role in the “disability critique” of prenatal testing. However, the idea that human genetic variation is an important good with significant benefits for society at large is also embraced by a wide range of figures writing in the bioethics literature, including some who are notoriously hostile to the idea that we should not select against disability. By developing a number of thought experiments wherein we are to contemplate increasing genetic diversity from a lower baseline in order to secure this value, I argue that this powerful intuition is more problematic than is generally recognized, especially where the price of diversity is the well-being of particular individuals.     

Disability and employment – overview and highlights

Due to the expected decline in the working-age population, especially in European countries, people with disabilities are now more often recognized as a valuable resource in the workforce and research into disability and employment is more important than ever. This paper outlines the state of affairs of research on disability and employment. We thereby focus on one particular group of people with disabilities, that is to say people with mental disabilities. We define disability according to the International Classification of Functioning, Disability and Health (ICF) of the World Health Organization, by that recognizing that disability results from the interaction of person and environment. Key issues, including the complexity of defining disability, the legal situation in Europe and North America concerning disability at work, and barriers and enablers to employment, are discussed. For each of the topics we show important findings in the existing literature and indicate where more in-depth research is needed. We finalize with a concrete research agenda on disability and employment and provide recommendations for practice.