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"It's personalized, but it's still bucket based": The promise of personalized medicine vs. the reality of genomic risk stratification in a breast cancer screening trial. "它是个性化的，但仍然是基于桶的"：个性化医疗的承诺与乳腺癌筛查试验中基因组风险分层的现实。
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2022-01-01 Epub Date: 2022-09-02 DOI: 10.1080/14636778.2022.2115348
Jennifer Elyse James, Galen Joseph
{"title":"\"It's personalized, but it's still bucket based\": The promise of personalized medicine vs. the reality of genomic risk stratification in a breast cancer screening trial.","authors":"Jennifer Elyse James, Galen Joseph","doi":"10.1080/14636778.2022.2115348","DOIUrl":"10.1080/14636778.2022.2115348","url":null,"abstract":"<p><p>Adaptive pragmatic clinical trials offer an innovative approach that integrates clinical care and research. Yet, blurring the boundaries between research and clinical care raises questions about how clinicians and investigators balance their caregiving and research roles and what types of knowledge and risk assessment are most valued. This paper presents findings from an ethnographic ELSI (Ethical, Legal, Social Implications) study of an innovative clinical trial of risk-based breast cancer screening that utilizes genomics to stratify risk and recommend a breast cancer screening commensurate with the assessed risk. We argue that the trial demonstrates a fundamental tension between the promissory ideals of personalized medicine, and the reality of implementing risk stratified care on a population scale. We examine the development of a Screening Assignment Review Board in response to this tension which allows clinician-investigators to negotiate, but never fully resolve, the inherent contradiction of 'precision population screening'.</p>","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"41 3","pages":"228-253"},"PeriodicalIF":1.8,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10021681/pdf/nihms-1832309.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10195195","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Challenge of Recruiting Diverse Populations into Health Research: An embedded social science perspective. 招募不同人群进入健康研究的挑战:一个嵌入的社会科学视角。
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2022-01-01 DOI: 10.1080/14636778.2022.2115349
Simon M Outram, Sara L Ackerman, Matthew Norstad, Barbara Koenig
{"title":"The Challenge of Recruiting Diverse Populations into Health Research: An embedded social science perspective.","authors":"Simon M Outram,&nbsp;Sara L Ackerman,&nbsp;Matthew Norstad,&nbsp;Barbara Koenig","doi":"10.1080/14636778.2022.2115349","DOIUrl":"https://doi.org/10.1080/14636778.2022.2115349","url":null,"abstract":"<p><p>Addressing health disparities has become a central remit for conducting health research. In the following paper, we explore the conceptual and methodological challenges posed by the call to recruit medically underserved populations. This exploration of challenges is undertaken from the perspective of social science researchers embedded in a large within a clinical genomics research study. We suggest that these challenges are found in respect to the development of recruiting strategies, analysis of the data in respect to understanding and interpreting the experiences of being medically underserved, and in comparing the experiences of being medically underserved compared to not being underserved. By way of conclusion, it is argued that there is important role for social scientists with large health research studies which, if achieved successfully, can benefit study teams and society as a whole.</p>","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"41 3","pages":"216-226"},"PeriodicalIF":1.8,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10035592/pdf/nihms-1832308.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10536782","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Promising precision medicine: how patients, clinicians and caregivers work to realize the potential of genomics-informed cancer care 前景光明的精准医疗:患者、临床医生和护理人员如何努力实现基因组学信息癌症治疗的潜力
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-12-11 DOI: 10.1080/14636778.2021.1997577
Sara L. Ackerman
{"title":"Promising precision medicine: how patients, clinicians and caregivers work to realize the potential of genomics-informed cancer care","authors":"Sara L. Ackerman","doi":"10.1080/14636778.2021.1997577","DOIUrl":"https://doi.org/10.1080/14636778.2021.1997577","url":null,"abstract":"This paper examines the emerging field of molecular oncology, in which targeted treatments are sought for patients who have exhausted standard cancer therapies. Drawing on an ethnographic study at a U.S. academic medical center, and building on recent theoretical work examining potentiality as a site where expectations, meaning and value are produced, I describe efforts to translate genetic information into extended life for patients. Clinicians, patients and families performed various types of largely-unrecognized labor that invested precision medicine with potential even when life-prolonging therapies remained elusive. Their future-making work was enabled and constrained by the structural conditions of U.S. health care. In this context potentiality was a generative force that was harnessed to the interests and inequities of a market-driven health system, raising important questions about who is able to participate in, contribute to, and benefit from emerging innovations and narratives of hope.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"23 1","pages":"196 - 215"},"PeriodicalIF":1.8,"publicationDate":"2021-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78149719","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 4
Bio-imperialism. Disease, terror and the construction of national fragility Bio-imperialism。疾病、恐怖和国家脆弱性的构建
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-12-11 DOI: 10.1080/14636778.2021.1997579
John Harrington
{"title":"Bio-imperialism. Disease, terror and the construction of national fragility","authors":"John Harrington","doi":"10.1080/14636778.2021.1997579","DOIUrl":"https://doi.org/10.1080/14636778.2021.1997579","url":null,"abstract":"and on the injustices and asymmetries of global health security. Completed before the onset of pertinent history of the pandemic present, furnishing points against which to understand and judge global and health over acute critique biodefence strategies, both domestic and international, through four nely worked case studies from the twenty years following the terrorist atrocities and the anthrax attacks which followed them soon after, formed the linchpin for new iteration American","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"32 1","pages":"176 - 178"},"PeriodicalIF":1.8,"publicationDate":"2021-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81204912","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
“Donating with eyes shut”: attitudes regarding DNA donation to a large-scale biobank in Israel “闭着眼睛捐献”:对向以色列大型生物银行捐献DNA的态度
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-12-03 DOI: 10.1080/14636778.2021.2007066
Aviad E. Raz, Yael Hashiloni-Dolev
{"title":"“Donating with eyes shut”: attitudes regarding DNA donation to a large-scale biobank in Israel","authors":"Aviad E. Raz, Yael Hashiloni-Dolev","doi":"10.1080/14636778.2021.2007066","DOIUrl":"https://doi.org/10.1080/14636778.2021.2007066","url":null,"abstract":"DNA collection raises ethical, legal, and social issues around privacy, consent, participatory science, benefits and risks, biodata governance, and, ultimately, trust. While there is a consensus that DNA biobanks’ success depends on public trust, more evidence is needed regarding the determinants, production, and preservation of such trust. We draw on 14 semi-structured interviews with participants – seven people who donated DNA to an Israeli biobank, and seven who refused to donate; as well as on two focus groups with members of the general public. Our findings call into question the relationship between trust/trustworthiness and donation, suggesting moral strategies termed by respondents as “donating with eyes shut.” We conclude by discussing how DNA donation is built on a mixture of attitudes combining criticism, optimism, resistance, and avoiding responsibility as a pragmatic solution to the unresolved conflicts in sharing one’s DNA.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"30 1","pages":"47 - 65"},"PeriodicalIF":1.8,"publicationDate":"2021-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86002024","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 3
Editorial: themed issue: understanding the technical and social landscape of gene editing 社论:主题问题:理解基因编辑的技术和社会景观
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-10-02 DOI: 10.1080/14636778.2021.2004032
R. Dimond, Jamie Lewis, Gareth Thomas
{"title":"Editorial: themed issue: understanding the technical and social landscape of gene editing","authors":"R. Dimond, Jamie Lewis, Gareth Thomas","doi":"10.1080/14636778.2021.2004032","DOIUrl":"https://doi.org/10.1080/14636778.2021.2004032","url":null,"abstract":"This 2021 themed issue is an acknowledgement of the emergence and significance of gene editing technology, which has already been described as contributing to a new era in human history, that is, as a revolution, a game-changer, and a disruptive technology. Gene editing has proved to be an inexpensive, expeditious, and effective technique that can target and edit (by deleting, adding, or otherwise modifying) genetic material. As such, it has broad applicability in the clinical, agricultural, and industrial arenas, while it has also proven popular in less formal settings such as for “biohacking” techniques (DIY biology). Our focus in this themed issue is the relevance of gene editing for human health. Somatic gene editing has already proved successful and is contributing to the development of therapeutic benefits for some types of childhood blindness, spinal muscular atrophy, and sickle cell disease (Ledford, 2020). Reproductive (germline) gene editing is more controversial, and there has been increasing concern about the rapid pace of development. Concerns about risk include the introduction of unintended genetic changes (known as “off target” effects), which would be irrevocable and irreversible, meaning that there are significant “known unknowns” about the long-term health implications for the child. New Genetics and Society has a long history in documenting the emergence of new technologies and the ensuing debates (see, for example, Parry (2003), Haddow et al. (2010) and Sleeboom-Faulkner et al. (2011), to name a few). Many authors continue to debate the risks and benefits of gene editing, following a familiar path of assessing new technologies in terms of their safety, ethics, and public opinion (Martin et al. 2020, So et al. 2021). The UK, in particular, employs a closely regulated yet liberal approach to supporting new reproductive technologies and, in February 2016, Kathy Niakan (Francis Crick, UK) became the New Genetics and Society, 2021 Vol. 40, No. 4, 361–366, https://doi.org/10.1080/14636778.2021.2004032","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"23 1","pages":"361 - 366"},"PeriodicalIF":1.8,"publicationDate":"2021-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"90577507","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
“It didn’t mean anything” – moving within a landscape of knowledge to interpret genetics and genetic test results within familial cancer concerns “这没有任何意义”——在对基因和基因检测结果进行解读的知识背景下，从家族癌症的角度出发
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-10-02 DOI: 10.1080/14636778.2021.1997575
Mavis Machirori, C. Patch, A. Metcalfe
{"title":"“It didn’t mean anything” – moving within a landscape of knowledge to interpret genetics and genetic test results within familial cancer concerns","authors":"Mavis Machirori, C. Patch, A. Metcalfe","doi":"10.1080/14636778.2021.1997575","DOIUrl":"https://doi.org/10.1080/14636778.2021.1997575","url":null,"abstract":"Genetics is increasingly defining how we understand health and disease, affecting for some, their understanding of inherited disease, and the meaning of medical genetic information. When interpretations of hereditary conditions are determined, partly, by one’s familial experience of heritable characteristics and partly by various other lived experiences, the meaning of genetics becomes highly personal. Through descriptions of stocks of knowledge, this paper describes findings from a qualitative study with a cohort of Black and Asian women with family and personal histories of cancer, about their interpretations of their genetic tests. We describe their interpretations as shaped by different experiences of biomedical practice as well as familial experiences of cancer and genetic testing; and we introduce a metaphor of “moving within a landscape,” to show how those interpretations were created and influenced by various sources of knowledge and life experiences.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"21 1","pages":"570 - 598"},"PeriodicalIF":1.8,"publicationDate":"2021-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76504287","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies 我们生活的组学:直接面向消费者的表观遗传和微生物检测公司的实践和政策
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-10-02 DOI: 10.1080/14636778.2021.1997576
Terese Knoppers, Elisabeth Beauchamp, K. Dewar, S. Kimmins, G. Bourque, Y. Joly, C. Dupras
{"title":"The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies","authors":"Terese Knoppers, Elisabeth Beauchamp, K. Dewar, S. Kimmins, G. Bourque, Y. Joly, C. Dupras","doi":"10.1080/14636778.2021.1997576","DOIUrl":"https://doi.org/10.1080/14636778.2021.1997576","url":null,"abstract":"While much attention has gone towards ethical, legal, and social implications of direct-to-consumer genetic testing over the past decades, the rise of new forms of consumer omics has largely escaped scrutiny. In this paper, we analyze the product descriptions, promotional messages, terms of service, and privacy policies of five epigenetic and seven microbiomic testing companies. The advent of such tests online represents a significant shift in consumer omics, from a focus on inherited molecules with genetic tests, to broader interest for information about the lives of individuals, such as chronological and biological age, exposures, and lifestyle. Building on previous literature about direct-to-consumer genetic testing, and taking this shift into account, we identify limitations, gaps and inconsistencies in current practices and policies of the new companies. Best practice standards and regulations applicable across different omic sample and data types is a necessary first step in the promotion of responsible consumer omics.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"17 1","pages":"541 - 569"},"PeriodicalIF":1.8,"publicationDate":"2021-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87087308","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 4
The rise of the biocyborg: synthetic biology, artificial chimerism and human enhancement 生物半机械人的兴起:合成生物学、人工嵌合和人类增强
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-10-02 DOI: 10.1080/14636778.2021.2007064
L. Pio-Lopez
{"title":"The rise of the biocyborg: synthetic biology, artificial chimerism and human enhancement","authors":"L. Pio-Lopez","doi":"10.1080/14636778.2021.2007064","DOIUrl":"https://doi.org/10.1080/14636778.2021.2007064","url":null,"abstract":"Applying technologies into the human body makes a hybrid human/machine: a cyborg. We identified four types of cyborgs in the literature: the original cyborg, enhanced temporarily for space exploration, the science-fiction cyborg, the “Haraway cyborg” used to critic the dualisms and the “everyday cyborg” who became one by necessity, and learns to live with the implanted technologies. We propose in this article a fifth version: the biocyborg. Such a cyborg presents a new kind of hybridity that we named artificial chimerism, it leads to a multi-scale non-Darwinian evolution and the willingness to become a biocyborg is not only driven by necessity but also by the desire to be enhanced and to push the physiological boundaries of the human body. Becoming a biocyborg comes with new vulnerabilities as any embodied technologies but the associated risk is multi-level and also concerns the human species.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"34 1","pages":"599 - 619"},"PeriodicalIF":1.8,"publicationDate":"2021-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87014068","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 6
Many thanks for New Genetics and Society reviewers 非常感谢新遗传学和社会评论家
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-10-02 DOI: 10.1080/14636778.2021.2009262
{"title":"Many thanks for New Genetics and Society reviewers","authors":"","doi":"10.1080/14636778.2021.2009262","DOIUrl":"https://doi.org/10.1080/14636778.2021.2009262","url":null,"abstract":"","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"103 1","pages":"i - i"},"PeriodicalIF":1.8,"publicationDate":"2021-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"74378081","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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