scholarly journals Reproductive carrier screening: responding to the eugenics critique

2021 ◽  
pp. medethics-2021-107343
Author(s):  
Lisa Dive ◽  
Ainsley J Newson

Reproductive genetic carrier screening (RCS), when offered to anyone regardless of their family history or ancestry, has been subject to the critique that it is a form of eugenics. Eugenics describes a range of practices that seek to use the science of heredity to improve the genetic composition of a population group. The term is associated with a range of unethical programmes that were taken up in various countries during the 20th century. Contemporary practice in medical genetics has, understandably, distanced itself from such programmes. However, as RCS becomes more widespread, gains public funding and uses expanded gene panels, there are concerns that such programmes could be perceived as eugenic either in intent or outcome. The typical response to the eugenics critique of RCS is to emphasise the voluntary nature of both participating in screening and making subsequent reproductive choices. While safeguarding individuals’ freedom to choose in relation to screening is essential, we consider this response inadequate. By examining the specific ethical wrongs committed by eugenics in the past, we argue that to avoid the perception of RCS being a form of eugenics it is essential to attend to the broader normative context in which reproductive decisions occur. Furthermore, ethical RCS programmes must recognise and respond to their potential to shift societal norms that shape individual reproductive choices.

2021 ◽  
Author(s):  
Samantha Gbur ◽  
Logan Mauney ◽  
Kathryn J. Gray ◽  
Louise Wilkins‐Haug ◽  
Stephanie Guseh

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Ebony Richardson ◽  
Alison McEwen ◽  
Toby Newton-John ◽  
Karine Manera ◽  
Chris Jacobs

Abstract Background Reproductive genetic carrier screening is a type of genetic testing available to those planning a pregnancy, or during their first trimester, to understand their risk of having a child with a severe genetic condition. There is a lack of consensus for ‘what to measure’ in studies on this intervention, leading to heterogeneity in choice of outcomes and methods of measurement. Such outcome heterogeneity has implications for the quality and comparability of these studies and has led to a lack of robust research evidence in the literature to inform policy and decision-making around the offer of this screening. As reproductive genetic carrier screening becomes increasingly accessible within the general population, it is timely to investigate the outcomes of this intervention. Objectives The development of a core outcome set is an established methodology to address issues with outcome heterogeneity in research. We aim to develop a core outcome set for reproductive genetic carrier screening to clarify and standardise outcomes for research and practice. Methods In accordance with guidance from the COMET (Core Outcome Measures in Effectiveness Trials) Initiative, this study will consist of five steps: (i) a systematic review of quantitative studies, using narrative synthesis to identify previously reported outcomes, their definitions, and methods of measurement; (ii) a systematic review of qualitative studies using content analysis to identify excerpts related to patient experience and perspectives that can be interpreted as outcomes; (iii) semi-structured focus groups and interviews with patients who have undertaken reproductive genetic carrier screening to identify outcomes of importance to them; (iv) Delphi survey of key stakeholders, including patients, clinicians, and researchers, to refine and prioritise the list of outcomes generated from the previous steps; and (v) a virtual consensus meeting with a purposive sample of key stakeholders to finalise the core outcome set for reporting. Discussion This protocol outlines the core outcome set development process and its novel application in the setting of genetic testing. This core outcome set will support the standardisation of outcome reporting in reproductive carrier screening research and contribute to an evolving literature on outcomes to evaluate genetic testing and genetic counselling as health interventions. COMET core outcome set registration http://www.comet-initiative.org/Studies/Details/1381.


Author(s):  
Mariam Eissa ◽  
Taghrid Aloraini ◽  
Lamia Alsubaie ◽  
Abdulrahman Alswaid ◽  
Wafaa Eyiad ◽  
...  

Author(s):  
Russ Lea

In the past three decades, economic competitiveness has morphed from an international concern (e.g. outcompete Japan) to a regional concern (e.g. knowledge clusters) to one where individual universities are in an “arms race” with each other for private and public funding (including licensing royalties, retaining star faculty, pursuing academic earmarking, developing technology parks and incubators, etc.). The greatest benefit that Bayh-Dole afforded universities, namely, to promote the utilization of their research for the public good, sometimes seems distant to the perceived objectives whereby universities attempt to maximize their own resources, including commercialization profits from faculty innovations that are ultimately transferred to the economy.


Author(s):  
Eva Feder Kittay

Inquiring into the relation between reproductive decision-making and the unexpected, this chapter claims that reproductive choices around disability bring out inherent paradoxes of choice in the face of uncertainty. Arguing that reproductive decisions around disability, like all reproductive decisions, must be left to the person carrying the child, this chapter also insists that reproductive choices attend to the role of chance and unexpected outcomes.


2020 ◽  
Vol 63 (12) ◽  
pp. 104075
Author(s):  
Lauren A. Thomas ◽  
Sharon Lewis ◽  
John Massie ◽  
Edwin P. Kirk ◽  
Alison D. Archibald ◽  
...  

Author(s):  
Stephen Allen

Lucha libre, or professional wrestling, has become a staple of urban Mexican culture over the course of the 20th century. In the past twenty years, it has gained international acclaim for its distinctive style and culture. Best known for the masks that luchadores often wear, lucha libre has become a distinctly national rendition of an imported product. Along with Japan and the United States, Mexico is one of the most influential nations in the world of professional wrestling. The sport allows fans to root for técnicos, rudos, and exóticos and it provides theater that upends societal norms in Mexico. Banned from performing on television by Federal District authorities from the 1950s to the early 1990s, wrestlers like El Santo and Blue Demon took to the silver screen to film “Mexploitation” horror and science fiction films. Although the sport has become an urban tradition, it reflects the cosmopolitan nature of working-class urban culture as well as the influence of Mexican culture on other nations.


2019 ◽  
Vol 36 (4) ◽  
pp. 709-716 ◽  
Author(s):  
Nigel Pereira ◽  
Michelle Wood ◽  
Emerly Luong ◽  
Allison Briggs ◽  
Michael Galloway ◽  
...  

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