Gene/Protein Disease Symptom Drug Enzyme Compound
Pivot Concepts:   Target Concepts:
Query: UMLS:C0277787 (stigma)
 13,352 document(s) hit in 31,850,051 MEDLINE articles (0.00 seconds)

Providers and patients are considering and pursuing PGD for ever-more conditions, but questions arise concerning how they make, view and experience these decisions, and what challenges they may face. Thirty-seven in-depth semi-structured interviews were conducted (with 27 IVF providers and 10 patients). Patients and providers struggled with challenges and dilemmas about whether to pursue PGD in specific cases, and how to decide. Respondents varied in how they viewed, experienced and made these choices, and for which conditions to pursue PGD (from lethal, childhood-onset conditions to milder, treatable, or adult-onset disorders). Several factors were involved, including differences in gene penetrance, predictability, and phenotypic expression, and disease severity, age of onset, treatability, stigma and degree of disability. Providers and patients face questions regarding possibilities of screening for more than one condition in one set of embryos, and limitations of PGD (e.g., inaccurate results). Characteristics of providers (e.g., amount of PGD experience, understandings of genetics, and use of genetic counselors), and of patients (e.g., related to broader moral and social attitudes) can also affect these decisions. These data, the first to examine several key questions concerning PGD, suggest that providers and patients confront several dilemmas. These findings have critical implications for future practice, guidelines, education and research.
 ...
PMID:Challenges, Dilemmas and Factors Involved in PGD Decision-Making: Providers' and Patients' Views, Experiences and Decisions. 2924 93

Often, ethical analysis of Pre-Implantation Genetic Diagnosis occupies one of two positions in a moral dichotomy. On the one hand, we have a deep suspicion of the technology as directly leading to eugenics, which is assumed to be a negative consequence; and on the other, we have a vigorous enthusiasm for the technology as a means toward creating better offspring, where "better" is assumed to mean, at minimum, non-disabled. For my part, I eschew both of these positions and attempt to break this dichotomy wide open by maintaining that future parents are not morally required to use PGD to select some vision of an objectively "best" child, but should be permitted to use PGD to select embryos according to their own conception of the good life, even if that conception of the good life includes disability. Yet, I still would not argue that any use of PGD to select a future child to correspond with a particular view of the good life is morally permissible and so we need some way to identify which conceptions of the good life ought to be allowed to motivate prenatal selection without defaulting to a flawed concept of disability as a convenient measuring stick. To achieve this, I will invite moral judgments regarding a future child's likely range of life opportunity that would result from her parents' acting according to their conception of the good life in the context within which she will be raised. However, I reject the notion that this opportunity range should itself be defined only in terms of a socially decontextualized, purely medicalized conception of disability that is so often defined in terms of species normal functioning, so as to be considered equal or normal. Instead, an acceptable opportunity range should include a variety of modes of functioning that can contribute to a broad enough opportunity range if they are reasonably accommodated. In summary, this paper attempts to carve out a position that acknowledges the danger of PGD encouraging simplistic, stigma-based reproductive decision making while also justifying parents' use of PGD to choose embryos that will develop into children with and without disabilities who will flourish in the context in which they are raised.
 ...
PMID:Disabled by Design: Justifying and Limiting Parental Authority to Choose Future Children with Pre-Implantation Genetic Diagnosis. 2930 78