Abstract:For the last eighteen months, I have worked with a group of disability and health policy researchers. I began this interview-based project trying to learn how these researchers’ disability identities shaped their work. How did their disability standpoint contribute to the liberatory nature of their research? I found that the disability standpoint of these researchers was in fact hard-won and grew not just out of their own disability experiences but out of their connections with the larger disability community. These connections, for the most part, helped researchers come to “claim crip,” and that later influenced their research.
{"title":"Knowing with the Disability Community: Building a Disability Standpoint for Health Policy Research","authors":"Laura M. Cupples","doi":"10.3138/ijfab-14.2.03","DOIUrl":"https://doi.org/10.3138/ijfab-14.2.03","url":null,"abstract":"Abstract:For the last eighteen months, I have worked with a group of disability and health policy researchers. I began this interview-based project trying to learn how these researchers’ disability identities shaped their work. How did their disability standpoint contribute to the liberatory nature of their research? I found that the disability standpoint of these researchers was in fact hard-won and grew not just out of their own disability experiences but out of their connections with the larger disability community. These connections, for the most part, helped researchers come to “claim crip,” and that later influenced their research.","PeriodicalId":13383,"journal":{"name":"IJFAB: International Journal of Feminist Approaches to Bioethics","volume":"2 1","pages":"36 - 60"},"PeriodicalIF":0.0,"publicationDate":"2021-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89825605","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract:This study provides insight into the experiences of young adults born with variations of sex characteristics to identify aspects of care and social support that need improvement. Semi-structured interviews with intersex youths in Switzerland were analyzed using interpretative, phenomenological analysis. Young adults desire timely, patient-centered information about their diagnoses. Peer support is key to delivering high-quality care but rarely systematically implemented. Intersex youth often face misrepresentation, stigma, and discrimination in medical settings and in society. Increased visibility alone cannot tackle these issues, but a feminist curiosity of care will enable health providers and society to overcome preconceptions of body normativity.
{"title":"A Tsunami of Love: Overcoming the Violence of Curiosity—The Lived Experiences of Young Adults Born with Variations of Sex Characteristics","authors":"E. De Clercq","doi":"10.3138/ijfab-14.2.02","DOIUrl":"https://doi.org/10.3138/ijfab-14.2.02","url":null,"abstract":"Abstract:This study provides insight into the experiences of young adults born with variations of sex characteristics to identify aspects of care and social support that need improvement. Semi-structured interviews with intersex youths in Switzerland were analyzed using interpretative, phenomenological analysis. Young adults desire timely, patient-centered information about their diagnoses. Peer support is key to delivering high-quality care but rarely systematically implemented. Intersex youth often face misrepresentation, stigma, and discrimination in medical settings and in society. Increased visibility alone cannot tackle these issues, but a feminist curiosity of care will enable health providers and society to overcome preconceptions of body normativity.","PeriodicalId":13383,"journal":{"name":"IJFAB: International Journal of Feminist Approaches to Bioethics","volume":"188 1","pages":"11 - 35"},"PeriodicalIF":0.0,"publicationDate":"2021-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76568900","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The Turnaway Study: Ten Years, a Thousand Women, and the Consequences of Having—or Being Denied—an Abortion by Diana Green Foster.","authors":"K. MacKay","doi":"10.3138/ijfab.14.2.br03","DOIUrl":"https://doi.org/10.3138/ijfab.14.2.br03","url":null,"abstract":"","PeriodicalId":13383,"journal":{"name":"IJFAB: International Journal of Feminist Approaches to Bioethics","volume":"12 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"79988070","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mass incarceration and the aging prison population in the United States is an ethical crisis, understudied in empirical bioethics research. In this article, I share one woman’s narrative to illustrate how older Black women describe accessing healthcare while incarcerated and identify sites for bioethical exploration. I argue that, due to the punitive nature of prison healthcare interactions, wherein women are seen as inmates first and patients second, healthcare providers are caught in a trap of competing ethical commitments to their patients and the state. As the prison population ages, these challenges will become more acute. Feminist bioethics has a critical role to play in imagining new possibilities for accessing, giving, and receiving care in the carceral context.
{"title":"A Second Chance at Health","authors":"Jennifer Elyse James","doi":"10.3138/ijfab-14.2.05","DOIUrl":"https://doi.org/10.3138/ijfab-14.2.05","url":null,"abstract":"Mass incarceration and the aging prison population in the United States is an ethical crisis, understudied in empirical bioethics research. In this article, I share one woman’s narrative to illustrate how older Black women describe accessing healthcare while incarcerated and identify sites for bioethical exploration. I argue that, due to the punitive nature of prison healthcare interactions, wherein women are seen as inmates first and patients second, healthcare providers are caught in a trap of competing ethical commitments to their patients and the state. As the prison population ages, these challenges will become more acute. Feminist bioethics has a critical role to play in imagining new possibilities for accessing, giving, and receiving care in the carceral context.","PeriodicalId":13383,"journal":{"name":"IJFAB: International Journal of Feminist Approaches to Bioethics","volume":"35 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76211366","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Medical Sexism: Contraception Access, Reproductive Medicine, and Health Care by Jill B. Delston (review)","authors":"Deborah McNabb, L. Campo-Engelstein","doi":"10.3138/ijfab.14.2.br04","DOIUrl":"https://doi.org/10.3138/ijfab.14.2.br04","url":null,"abstract":"","PeriodicalId":13383,"journal":{"name":"IJFAB: International Journal of Feminist Approaches to Bioethics","volume":"37 1","pages":"200 - 204"},"PeriodicalIF":0.0,"publicationDate":"2021-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"79036319","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract:As an infant, my grandmother chewed my food for me because I was not capable of chewing on my own. As an adult, most African men still want to chew my food for me. So, how do African women consent to research when culturally they must surrender their autonomy? We join in solidarity and create our own collective autonomy. We know the rules of our patriarchal society and outwardly adhere to them. As an ethicist, I (Caroline Kithinji) have developed a sense of responsibility and solidarity with female research subjects; we collaborate in the full understanding of our lack of autonomy.
{"title":"Between Autonomy and Solidarity: An African Woman’s Autoethnography","authors":"C. Kithinji, H. Maleche, Ann Masiga, J. Masiga","doi":"10.3138/ijfab-14.2.04","DOIUrl":"https://doi.org/10.3138/ijfab-14.2.04","url":null,"abstract":"Abstract:As an infant, my grandmother chewed my food for me because I was not capable of chewing on my own. As an adult, most African men still want to chew my food for me. So, how do African women consent to research when culturally they must surrender their autonomy? We join in solidarity and create our own collective autonomy. We know the rules of our patriarchal society and outwardly adhere to them. As an ethicist, I (Caroline Kithinji) have developed a sense of responsibility and solidarity with female research subjects; we collaborate in the full understanding of our lack of autonomy.","PeriodicalId":13383,"journal":{"name":"IJFAB: International Journal of Feminist Approaches to Bioethics","volume":"11 1","pages":"61 - 69"},"PeriodicalIF":0.0,"publicationDate":"2021-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84597228","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract:During the COVID-19 pandemic, several hospitals implemented “birthing alone” policies, banning companions (e.g., partners, family members, doulas) from accompanying individuals giving birth. We offer an ethical analysis of these policies. First, we examine them through a consequentialist framework of risks and benefits. Second, we consider the significance of birth, highlighting the unique ways in which risks, relationships, and rights are understood in the context of obstetrics. We conclude that birthing alone policies are largely unjustified, as the harm they are certain to cause outweighs their possible benefits and because they fail to take into account what matters to mothers.
{"title":"Birthing Alone: An Ethical Analysis of Pandemic Policies Banning Birthing Partners","authors":"Phoebe Friesen, S. Towle, T. Perez","doi":"10.3138/ijfab-14.2.08","DOIUrl":"https://doi.org/10.3138/ijfab-14.2.08","url":null,"abstract":"Abstract:During the COVID-19 pandemic, several hospitals implemented “birthing alone” policies, banning companions (e.g., partners, family members, doulas) from accompanying individuals giving birth. We offer an ethical analysis of these policies. First, we examine them through a consequentialist framework of risks and benefits. Second, we consider the significance of birth, highlighting the unique ways in which risks, relationships, and rights are understood in the context of obstetrics. We conclude that birthing alone policies are largely unjustified, as the harm they are certain to cause outweighs their possible benefits and because they fail to take into account what matters to mothers.","PeriodicalId":13383,"journal":{"name":"IJFAB: International Journal of Feminist Approaches to Bioethics","volume":"24 1","pages":"114 - 143"},"PeriodicalIF":0.0,"publicationDate":"2021-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81723499","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Cardiovascular disease is the leading cause of death of women in the United States, yet cardiovascular research is disproportionately conducted using male human subjects and male animal models. This article deploys Katrina Hutchison’s (2019) analysis of gender disparity in clinical trials as a moral aggregation problem to address the problem of underrepresentation of women in cardiovascular research. I identify cost concerns, convenience, pregnancy, and negligence as potential reasons for the underrepresentation of women in CVD research. Finally, I suggest that multilevel strategies will be needed to eliminate sex disparity in CVD research and improve patient care.
{"title":"Donchin and Holmes Emerging Scholar Prize Paper Understanding and Correcting Sex Disparity in Cardiovascular Disease Research: Ethical and Practical Solutions","authors":"Lida Sarafraz","doi":"10.3138/ijfab-14.2.06","DOIUrl":"https://doi.org/10.3138/ijfab-14.2.06","url":null,"abstract":"Cardiovascular disease is the leading cause of death of women in the United States, yet cardiovascular research is disproportionately conducted using male human subjects and male animal models. This article deploys Katrina Hutchison’s (2019) analysis of gender disparity in clinical trials as a moral aggregation problem to address the problem of underrepresentation of women in cardiovascular research. I identify cost concerns, convenience, pregnancy, and negligence as potential reasons for the underrepresentation of women in CVD research. Finally, I suggest that multilevel strategies will be needed to eliminate sex disparity in CVD research and improve patient care.","PeriodicalId":13383,"journal":{"name":"IJFAB: International Journal of Feminist Approaches to Bioethics","volume":"123 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76072406","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Infrahumanisms: Science, Culture, and the Making of Modern Non/Personhood by Megan H. Glick (review)","authors":"Joshua Stein","doi":"10.3138/ijfab.14.2.br02","DOIUrl":"https://doi.org/10.3138/ijfab.14.2.br02","url":null,"abstract":"","PeriodicalId":13383,"journal":{"name":"IJFAB: International Journal of Feminist Approaches to Bioethics","volume":"9 1","pages":"191 - 196"},"PeriodicalIF":0.0,"publicationDate":"2021-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89796394","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"A Frigid Hope: A Journey into Chinese Experimental Stem Cell Surgery","authors":"M. Winchester","doi":"10.3138/ijfab-14.2.10","DOIUrl":"https://doi.org/10.3138/ijfab-14.2.10","url":null,"abstract":"","PeriodicalId":13383,"journal":{"name":"IJFAB: International Journal of Feminist Approaches to Bioethics","volume":"35 1","pages":"180 - 186"},"PeriodicalIF":0.0,"publicationDate":"2021-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89085632","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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