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1.
AMA J Ethics ; 26(6): E448-455, 2024 Jun 01.
Article in English | MEDLINE | ID: mdl-38833419

ABSTRACT

This commentary on a case argues that antimicrobial stewardship requires an intersectional disability justice approach if it is to be equitable, particularly for multiply marginalized patients with disabilities residing in nursing homes, who are more susceptible to antibiotic under- and overtreatment. Disability justice concepts emphasize resistance to structural and capitalist roots of ableism and prioritize leadership by disabled persons. A disability justice perspective on antimicrobial stewardship means prioritizing clarification of presumptive diagnoses of infection in vulnerable patients, clinician education led by disabled persons, and data collection.


Subject(s)
Antimicrobial Stewardship , Disabled Persons , Social Justice , Humans , Anti-Bacterial Agents/therapeutic use , Nursing Homes , Vulnerable Populations
2.
Nutrients ; 13(12)2021 Dec 04.
Article in English | MEDLINE | ID: mdl-34959914

ABSTRACT

In June 2019, California expanded Supplemental Nutrition Assistance Program (SNAP) eligibility to Supplemental Security Income (SSI) beneficiaries for the first time. This research assesses the experience and impact of new SNAP enrollment among older adult SSI recipients, a population characterized by social and economic precarity. We conducted semi-structured, in-depth interviews with 20 SNAP participants to explore their experiences with new SNAP benefits. Following initial coding, member-check groups allowed for participants to provide feedback on preliminary data analysis. Findings demonstrate that SNAP enrollment improved participants' access to nutritious foods of their choice, contributed to overall budgets, eased mental distress resulting from poverty, and reduced labor spent accessing food. For some participants, SNAP benefit amounts were too low to make any noticeable impact. For many participants, SNAP receipt was associated with stigma, which some considered to be a social "cost" of poverty. Increased benefit may be derived from pairing SNAP with other public benefits. Together, the impacts of and barriers to effective use of SNAP benefits gleaned from this study deepen our understanding of individual- and neighborhood-level factors driving health inequities among low-income, disabled people experiencing food insecurity and SNAP recipients.


Subject(s)
Cost-Benefit Analysis/statistics & numerical data , Food Assistance , Access to Healthy Foods , Adolescent , Adult , Aged , Aged, 80 and over , California , Diet, Healthy , Feedback , Female , Food Assistance/economics , Food Insecurity/economics , Health Inequities , Humans , Male , Middle Aged , Poverty , Young Adult
3.
AMA J Ethics ; 23(2): E183-188, 2021 02 01.
Article in English | MEDLINE | ID: mdl-33635199

ABSTRACT

This article considers intergenerational trauma by drawing on the experience of a 37-year-old Black woman whose great-grandfather died as a result of involuntary involvement in the US Public Health Service Syphilis Study at Tuskegee. Although she never met her great-grandfather, the abuse, exploitation, and human rights violations he suffered at the hands of the US government profoundly influenced her health experiences. This article contextualizes her experiences in light of past medical abuse and microethics.


Subject(s)
Syphilis , Adult , Black or African American , Decision Making , Family , Female , Human Rights , Humans , Male
5.
Camb Q Healthc Ethics ; 30(2): 272-284, 2021 Apr.
Article in English | MEDLINE | ID: mdl-33004101

ABSTRACT

The COVID-19 (Coronavirus disease of 2019) pandemic has led to intense conversations about ventilator allocation and reallocation during a crisis standard of care. Multiple voices in the media and multiple state guidelines mention reallocation as a possibility. Drawing upon a range of neuroscientific, phenomenological, ethical, and sociopolitical considerations, the authors argue that taking away someone's personal ventilator is a direct assault on their bodily and social integrity. They conclude that personal ventilators should not be part of reallocation pools and that triage protocols should be immediately clarified to explicitly state that personal ventilators will be protected in all cases.


Subject(s)
COVID-19/therapy , Ethics, Medical , Health Care Rationing/ethics , Resource Allocation/ethics , Ventilators, Mechanical/supply & distribution , Ethical Analysis , Humans , Triage/ethics
6.
Hastings Cent Rep ; 50(3): 28-32, 2020 May.
Article in English | MEDLINE | ID: mdl-32596899

ABSTRACT

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) "Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations," which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both distributive and recognitive justice. The disability rights movement's demand "Nothing about us, without us" requires substantive inclusion of disabled people in decision-making related to their interests, including in crisis planning before, during, and after a pandemic like Covid-19.


Subject(s)
Coronavirus Infections/epidemiology , Disabled Persons , Health Equity/ethics , Pneumonia, Viral/epidemiology , Social Justice/ethics , Standard of Care/ethics , Betacoronavirus , COVID-19 , Communication , Health Equity/legislation & jurisprudence , Humans , Pandemics , SARS-CoV-2 , Social Justice/legislation & jurisprudence , Standard of Care/legislation & jurisprudence
7.
Fam Syst Health ; 30(2): 166-80, 2012 Jun.
Article in English | MEDLINE | ID: mdl-22709328

ABSTRACT

Deleterious mutations in the BRCA1/BRCA2 genes elevate lifetime risk of breast and ovarian cancer. Each child of a mutation-positive parent has a 50% chance of inheriting it. Preimplantation genetic diagnosis (PGD) permits prospective parents to avoid the birth of a BRCA-mutation-positive child, introducing predictability into a process historically defined by chance. This investigation explored how BRCA1/2 mutation carriers understand genetic inheritance and consider a child's inheritance of a BRCA1/2 mutation, given the opportunities that exist to pursue PGD. Thirty-nine female and male BRCA1/2 mutation carriers of reproductive age were recruited from urban cancer and reproductive medical centers. Participants completed a standardized educational presentation on PGD and prenatal diagnosis, with pre- and posttest assessments. An interdisciplinary team of qualitative researchers analyzed data using grounded theory techniques. Participants expressed the belief that reproduction yields children with unique genetic strengths and challenges, including the BRCA1/2 mutation, family traits for which predictive tests do not exist, and hypothetical genetic risks. Participants expressed preference for biologically related children, yet stated their genetically "well" partner's lineage would be marred through reproductive merger, requiring the well partner to assume the burden of the BRCA1/2 mutation via their children. Participants expressed diverse views of genetically "well" partners' participation in family planning and risk management decisions. Pressure to use reprogenetic technology may grow as genetic susceptibility testing becomes more widely available. Work with individuals and couples across the disease spectrum must be attuned to the ways beliefs about genetic inheritance play into reproductive decision-making.


Subject(s)
Breast Neoplasms/genetics , Breast Neoplasms/prevention & control , Genes, BRCA1 , Genes, BRCA2 , Genetic Predisposition to Disease/genetics , Infectious Disease Transmission, Vertical/prevention & control , Ovarian Neoplasms/genetics , Ovarian Neoplasms/prevention & control , Female , Genetic Testing , Humans , Male , New York City , Polymorphism, Genetic , Pregnancy , Pregnancy Complications, Neoplastic/genetics , Preimplantation Diagnosis , Reproductive Techniques
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