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2.
CRISPR J ; 3(5): 365-377, 2020 10.
Article in English | MEDLINE | ID: mdl-33095042

ABSTRACT

Discussions and debates about the governance of human germline and heritable genome editing should be informed by a clear and accurate understanding of the global policy landscape. This policy survey of 106 countries yields significant new data. A large majority of countries (96 out of 106) surveyed have policy documents-legislation, regulations, guidelines, codes, and international treaties-relevant to the use of genome editing to modify early-stage human embryos, gametes, or their precursor cells. Most of these 96 countries do not have policies that specifically address the use of genetically modified in vitro embryos in laboratory research (germline genome editing); of those that do, 23 prohibit this research and 11 explicitly permit it. Seventy-five of the 96 countries prohibit the use of genetically modified in vitro embryos to initiate a pregnancy (heritable genome editing). Five of these 75 countries provide exceptions to their prohibitions. No country explicitly permits heritable human genome editing. These data contrast markedly with previously reported findings.


Subject(s)
CRISPR-Cas Systems , Embryo Research/legislation & jurisprudence , Gene Editing/legislation & jurisprudence , Genome, Human , Germ Cells , Embryonic Stem Cells , Humans
3.
Perspect Biol Med ; 63(1): 155-176, 2020.
Article in English | MEDLINE | ID: mdl-32063594

ABSTRACT

The raging controversy about whether heritable genome editing should be permitted is shaped and structured by the prevailing and countervailing narratives in circulation. In recent years, considerable shortcomings have come to characterize this discourse; it is now time to identify and correct a number of serious misunderstandings and distortions that have taken hold. This essay begins by briefly evaluating reactions to the November 2018 announcement that gene-edited babies had been born; it asserts that widespread agreement about the researcher's recklessness and dire ethical violations concealed deep fault lines among participants in the heritable genome editing debate. It goes on to consider several key omissions and misrepresentations that distort public understanding and undermine genuine debate. It suggests that the conversation must be refocused away from technical, medical, and scientific considerations toward matters of societal meanings, values, context, and consequences. It concludes with criteria for a broadly inclusive and meaningful decision-making process about whether heritable genome editing has any place in the shared and just future to which we aspire.


Subject(s)
Clustered Regularly Interspaced Short Palindromic Repeats , Gene Editing/ethics , Public Opinion , Embryo Research , Female , Genome, Human , Humans , Infant , Reproductive Techniques, Assisted , United Kingdom , United States
4.
Trends Biotechnol ; 38(4): 351-354, 2020 04.
Article in English | MEDLINE | ID: mdl-32014274

ABSTRACT

As public interest advocates, policy experts, bioethicists, and scientists, we call for a course correction in public discussions about heritable human genome editing. Clarifying misrepresentations, centering societal consequences and concerns, and fostering public empowerment will support robust, global public engagement and meaningful deliberation about altering the genes of future generations.


Subject(s)
Gene Editing/ethics , Genome, Human/genetics , Bioethical Issues , Embryo, Mammalian , Germ Cells , Humans
5.
Soc Stud Sci ; 42(5): 638-61, 2012 Oct.
Article in English | MEDLINE | ID: mdl-23189608

ABSTRACT

This article examines how feminist politics are made to 'stick' to appropriated technologies in the context of a contemporary feminist women's health clinic in the US. Feminist clinics such as 'FemHealth', founded as part of 1970s women's health movements, put medical tools and knowledge into lay women's hands, making the appropriation of medical technologies a centerpiece of their political project. In the process, they rejected the authority of physicians and gave new politicized meanings to the tools they claimed as their own. As lay healthworkers at FemHealth continued the project of appropriation, they also continued to negotiate their dependence on physicians to perform tasks that required a medical license. Drawing on participant observation and interviews with healthworkers, I argue that struggles over the role and authority of physicians in this clinic play out through debates over two similar and competing tools used in the abortion procedure: the single-tooth tenaculum and the cervical stabilizer. Many healthworkers invested in the stabilizer as 'inherently feminist' in hopes that it would maintain its politics even when passed into physicians' hands. While appropriation depends on the ability of users to alter a technology's meanings, actors may feel invested in the new politics taken on by appropriated tools and work towards making those meanings persist, or 'stick'.


Subject(s)
Abortion, Induced/instrumentation , Feminism/history , Politics , Women's Health/history , Female , History, 20th Century , Humans , Physicians/organization & administration , United States , Women
6.
Soc Sci Med ; 75(10): 1729-36, 2012 Nov.
Article in English | MEDLINE | ID: mdl-22884940

ABSTRACT

Feminist research has shown repeatedly the extent to which medical accounts pathologize menstruation, yet there has been very little examination of how clinicians and medical researchers actually study and assess menstruation. This paper analyzes 30 US medical journal articles to examine how researchers work to distinguish the specific menstrual disorder of menorrhagia, or excessive bleeding, from normal menstruation. I focus specifically on measurement as a key process in diagnosing menstrual pathology, arguing that measurement practices construct women's bodies as appropriate objects of medical attention in ways that also shape women's positions as participants in knowledge production. I begin with the alkaline hematin method's narrow focus on physical proof of bleeding that proves or disproves women's complaints and trace the emergence of new methods that incorporate women's own assessments of bleeding. Changing ways of measuring menstruation point to shifts in understandings of the body as the object of medical treatment and of patients as medical subjects.


Subject(s)
Diagnostic Self Evaluation , Menorrhagia/diagnosis , Menstruation/physiology , Female , Humans , Physician-Patient Relations
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