It now seems technically feasible to culture human embryos beyond the “fourteen‐day limit,” which has the potential to increase scientific understanding of human development and perhaps improve infertility treatments. The fourteen‐day limit was adopted as a compromise but subsequently has been considered an ethical line. Does it remain relevant in light of technological advances permitting embryo maturation beyond it? Should it be changed and, if so, how and why? What justifications would be necessary to expand the limit, particularly given that doing so would violate some people's moral commitments regarding human embryos? Robust stakeholder engagement preceded adoption of the fourteen‐day limit and should arguably be part of efforts to reassess it. Such engagement could also consider the need for enhanced oversight of human embryo research. In the meantime, developing and implementing reliable oversight systems should help foster high‐quality research and public confidence in it .
Although biomarkers are not altogether new, they are gaining a new life in our postgenomic present. This article takes this as a good reason to explore biomarkers in depth and to speculate about the consequences that biomarkers might engender in clinical practices. First, the article ventures into an endeavor of ordering the dynamic field of biomarkers, suggesting a possible classification of biomarkers, and then argues that we are currently witnessing a 'biomarkerization' of health and disease - defined as an ongoing future-oriented process that seeks to solve biomedical as well as public health problems through investments into biomarker research at the present time. Subsequently, this article reflects on some possible consequences of this phenomenon. It argues that while the movement of candidate biomarkers into the clinic is arduous, biomarkers might develop a life of their own once they arrive in the clinic. This article outlines the direction of two such possible consequences. It suggests that biomarkers might be involved in a change of the actors that order and categorize diseases, as well as trigger transformations in our understanding of what counts as disease in the first place. Hence, this article seeks to shed light on the paradox that while biomarkers are designed to add more evidence into clinical practice, they might actually increase uncertainty and ambiguity.
Narratives of hope shape contemporary engagements with Parkinson's disease. On the one hand, a "biomedical narrative of hope" promises that biomedical research will help to transform this treatable but incurable disease into a curable one in the future. On the other hand, a more individual "illness narrative of hope" encourages patients to influence the course of Parkinson's disease by practicing self-care and positive thinking. This article asks how these two narratives of hope interact. It bases its argument on an analysis of data from 13 focus groups conducted in Germany in 2012 and 2014 with patients with Parkinson's disease and their relatives. Participants were asked to have their say on clinical trials for advanced therapies for Parkinson's disease and, while doing so, envisioned their biosocial selves in the present and the future. Three "modes of being" for patients were drawn from this body of data: a "users on stand-by" mode, an "unengaged" mode, and an "experimental pioneers" mode. Both narratives of hope were important to all three modes, yet they were mobilized at different frequencies and also had different statuses. While the biomedical narrative of hope was deemed an important "dream of the future" that participants passively supported without having to make it their own, the illness narrative of hope was a truth discourse that took an imperative form: having Parkinson's disease implied the need to maintain a positive attitude.
Genetic testing has become a vehicle through which basic constitutional relationships between citizens and the state are revisited, reaffirmed, or rearticulated. The interplay between the is of genetic knowledge and the ought of government unfolds in the context of diverse imaginaries of the forms of human well-being, freedom, and flourishing that states have a duty to support. This article examines how the United Kingdom, Germany, and the United States governed testing for Alzheimer’s disease, and how they diverged in defining potential harms, benefits, and objects of regulation. Comparison before and after the arrival of direct-to-consumer genetic tests reveals differences in national understandings of what it means to protect life and citizenship: in the United Kingdom, ensuring physical wellness through clinical utility; in the United States, protecting both citizens’ physical well-being and freedom to choose through a framework of consumer protection; and in Germany, emphasizing individual flourishing and an unburdened sense of human development that is expressed in genetic testing law and policy as a commitment to the stewardship of personhood. Operating with their own visions of what it means to protect life and citizenship, these three states arrived at settlements that coproduced substantially different bioconstitutional regimes around Alzheimer’s testing.
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