Tag: health disparities

Bioethics Blogs

Response to the Common Rule Special Issue: Attention to Health Disparities

by Nicolle K. Strand, JD, MBioethics, and Nora Jones, PhD

The article and commentaries on recent revisions to the Common Rule published in the July 2017 issue of AJOB are missing, we believe, a key perspective. The target articles and open peer commentaries suggested strategies for revising or overhauling the Common Rule to best address subject protections in light of the new and unique features of our contemporary research landscape, including the move from prospective research to research using existing data and biospecimens, personalized medicine, the increase in international collaboration, and the uptick in data sharing across institutions.…

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

A Feminist Neuroethics of Mental Health

By Ann E. Fink
Ann Fink is currently the Wittig Fellow in Feminist Biology at the University of Wisconsin–Madison, with an appointment in Gender and Women’s Studies and concurrent affiliations with Psychology and the Center for Healthy Minds. Her research in cellular and behavioral neuroscience has appeared in the Journal of Neuroscience, Journal of Neurophysiology, PNAS and other journals. Ann’s interdisciplinary work addresses the ethics of neuroscience in relation to gender, mental health and social justice. 

Emotionality and gender are tied together in the popular imagination in ways that permeate mental health research. At first glance, gender, emotion, and mental health seem like a simple equation: when populations are divided in two, women show roughly double the incidence of depression, anxiety, and stress-related disorders1-3. Innate biological explanations are easy to produce in the form of genes or hormones. It could be tempting to conclude that being born with XX chromosomes is simply the first step into a life of troubled mood. Yet, buried in the most simplistic formulations of mental illness as chemical imbalance or mis-wiring is the knowledge that human well-being is a shifting, psychosocial phenomenon. Learning and memory research offers a treasure trove of knowledge about how the physical and social environment changes the brain. Feminist scholarship adds to this understanding through critical inquiry into gender as a mode of interaction with the world. This essay explores how a feminist neuroethics framework enriches biological research into mental health. 
Problems with “Biology-from-birth” stories 
What if understanding gender and health isn’t a tale of two gonads (or genitalia, or chromosomes)?

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Walk In or Get Out: Overcoming Distrust of Medicine to Improve Outcomes

by Jennifer Cohen                                         

“Get Out” Universal 2017    

“Get Out” Universal 2017    

“Get Out” Universal 2017    

“Frankenstein” Universal 1931

“Frankenstein” Universal 1931

“Frankenstein” Universal 1931

Popular culture has long provided an outlet for feelings of powerlessness toward medicine. 19th century novels Frankenstein and The Island of Dr. Moreau tapped into fears that medicine would cruelly pursue scientific knowledge at the expense of human life. Two recent films, The Immortal Life of Henrietta Lacks and Get Out, examine the anxieties and mistrust that African Americans, in particular, experience toward the medical community in the modern era.  

Henrietta Lacks depicts a historical breach of ethics by researchers at Johns Hopkins University, whose work obscured the identity of Ms. Lacks’ “immortal” cell line and withheld attribution both to Ms. Lacks and her family for decades. In the film, this wrong exacerbates over time as the family struggles emotionally to understand the uses of their mother’s cells and to accept their mother’s consent was never considered necessary. Indeed, the family believed that members of their community were routinely used for experimentation without their consent: they tell journalist Rebecaa Skloot that, as children, they were warned by their parents to get off the streets at night or “Hopkins people” would snatch them up.

In Get Out, a nightmarish surgical practice occurs in which a neurosurgeon and psychiatrist lure African Americans to their home for use as receptacles for white brains in a bid for white immortality. Both of these films explore the premise that African-Americans should be afraid medicine will treat them differently from white individuals.

The ugly history of abuse toward African Americans in the name of medical research was extensively documented in 2006 by the bioethicist Harriet A.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Responsibility in the age of precision genomics

by Alexa Woodward

Alexa is a fellow in the Precision Medicine: Ethics, Policy, and Culture project through Columbia University’s Center for the Study of Social Difference. The following is her reflection on the ongoing discussion around the Precision Medicine Initiative that has been the subject of recent political, social, and popular media attention. A recent presentation by Sandra Soo-Jin Lee, PhD, from the Center for Biomedical Ethics at Stanford University spurred our multi-disciplinary discussion of some of the following themes.

What is normal, anyway?

Genetically speaking, that’s precisely the question that the Obama administration’s Precision Medicine Initiative (PMI) seeks to answer. In recruiting and collecting comprehensive genetic, medical, behavioral, and lifestyle data from one million Americans, the scientific and medical communities will be better able to understand what constitutes normal genetic variation within the population, and in turn, what amount of variation causes or contributes to disease or disease risk.[1] Using this data, researchers could potentially create tailored approaches for intervention and treatment of an incredible range of diseases.

The PMI has a secondary aim: to increase the representation of previously underrepresented populations in research – primarily African Americans and Hispanics/Latinos. Inclusion of these groups in research has been a challenge for decades, with lack of access, distrust in the medical and research systems, and institutionalized racism all playing exclusionary roles. More broadly, outside of the government initiative, the promise of precision medicine ultimately seeks to alleviate disparities by finding and addressing supposed genetic differences, and empowering people with information to take responsibility for their health.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Widening Gap in U.S. Life Expectancy

Caption: Life expectancy at birth by county, 2014. Life expectancy into 80s (blue), 70s (green, yellow, orange), 60s (red).

Americans are living longer than ever before, thanks in large part to NIH-supported research. But a new, heavily publicized study shows that recent gains in longevity aren’t being enjoyed equally in all corners of the United States. In fact, depending on where you live in this great country, life expectancy can vary more than 20 years—a surprisingly wide gap that has widened significantly in recent decades.

Researchers attribute this disturbing gap to a variety of social and economic influences, as well as differences in modifiable behavioral and lifestyle factors, such as obesity, inactivity, and tobacco use. The findings serve as a sobering reminder that, despite the considerable progress made possible by biomedical science, more research is needed to figure out better ways of addressing health disparities and improving life expectancy for all Americans.

In the new study published in JAMA Internal Medicine, a research team, partially funded by NIH, found that the average American baby born in 2014 can expect to live to about age 79 [1]. That’s up from a national average of about 73 in 1980 and around 68 in 1950. However, babies born in 2014 in remote Oglala Lakota County, SD, home to the Pine Ridge Indian Reservation, can expect to live only about 66 years. That’s in stark contrast to a child born about 400 miles away in Summit County, CO, where life expectancy at birth now exceeds age 86.

Earlier studies suggested that Americans living in some parts of the country were living more than a decade longer than others [2].

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals – April 2017 by Danya Glabau

Critical Public Health

On difference and doubt as tools for critical engagement with public health

Catherine M. Will

This paper argues that critical public health should reengage with public health as practice by drawing on versions of Science and Technology Studies (STS) that ‘de-centre the human’ and by seeking alternative forms of critique to work inspired by Foucault. Based on close reading of work by Annemarie Mol, John Law, Vicky Singleton and others, I demonstrate that these authors pursue a conversation with Foucault but suggest new approaches to studying contemporary public health work in different settings. Proposing that we ‘doubt’ both the unity of public health and its effects, I argue that this version of STS opens up a space to recognise multiplicity; to avoid idealising what is being criticised; and to celebrate or care for public health practices as part of critique. Finally I oppose the view that considering technologies, materials and microbes leads to micro-level analysis or political neutrality, and suggest that it allows us to reframe studies of public health to account for inequalities and to draw attention to weak or retreating states, active markets and the entangled relations of humans and non-humans across the world.

 

Biopolitical precarity in the permeable body: the social lives of people, viruses and their medicines

Elizabeth Mills

This article is based on multi-sited ethnography that traced a dynamic network of actors (activists, policy-makers, health care systems, pharmaceutical companies) and actants (viruses and medicines) that shaped South African women’s access to, and embodiment of, antiretroviral therapies (ARVs).

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals–March 2017, Part II by Julia Kowalski

This is Part II of March’s article round-up. You can find part I here.

In addition to the articles below, Theory, Culture and Society features an interview with Michel Foucault from 1983.

New Genetics and Society

Everything and nothing: regulating embryo research in Canada

Alana Cattapan & Dave Snow

This article examines how medical and scientific professionals experience and engage with the governance of embryo research in Canada. Drawing on the history of embryo regulation in Canada and the findings of a survey conducted with lab directors in Canadian fertility clinics, we identify a disjuncture between the rules established by legislation, regulations, and research ethics guidelines and the real-life experiences of professionals in the field. This disjuncture, we argue, is the result of both the absence of implementation mechanisms that would give substance to the governing framework, as well as an inability on the part of medical and scientific professionals to engage in robust self-regulation. Overall, we demonstrate that in an ethically charged and highly technical area of policy-making like embryonic research, clarity about the roles and responsibilities of government and professionals in policy-making and implementation is critical to effective governance.

Not just about “the science”: science education and attitudes to genetically modified foods among women in Australia

Heather J. Bray & Rachel A. Ankeny

Previous studies investigating attitudes to genetically modified (GM) foods suggest a correlation between negative attitudes and low levels of science education, both of which are associated with women. In a qualitative focus group study of Australian women with diverse levels of education, we found attitudes to GM foods were part of a complex process of making “good” food decisions, which included other factors such as locally produced, fresh/natural, healthy and nutritious, and convenient.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Ethics & Society Newsfeed: February 3, 2017

Image via

Politics

Betsy DeVos’s ethics review raises further questions for Democrats and watchdogs
Betsy DeVos, Trump’s nominee to lead the Education Department, promised to divest from more than 100 entities to avoid potential conflicts of interest with her new job. Questions left unanswered.

Donald Trump warned over ‘unprecedented’ plan to appoint cabinet without ethics office checks, emails reveal
Disclosed emails from the head of the ethics office warn President aides staffing a cabinet with robust oversight is a ‘tradition evolved as a result of hard lessons’

South Dakota Governor Signs Measure Reversing Voter Ethics
Governor of South Dakota signed a bill Thursday overturning an anti-corruption measure passed by a majority of voters in November, to the consternation of government watchdog groups.

Trump And His Organization Lawyer Up For The Ethics War Ahead
President Trump and the Trump Organization are beefing up their legal teams against an expected surge of conflict-of-interest allegations.

Teaching Ethics In The Trump Era
Graduate-level professor asks how to tell students ethics is important when “nothing around them feels ethical” re: Trump administration and conflicts of interest.

Bioethics

Human-pig hybrids might be unsettling. But they could save lives.
A new study out of California unsettled a lot of people last week after revealing that scientists had, for the first time, made part-human, part-pig embryos — referred to as “chimeras.” Raises ethical questions.

Could changing the way doctors are paid help narrow health disparities?
A study suggests that changing the way doctors and hospitals are paid could narrow some of the health disparities between poorer and wealthier patients.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals – January 2017 by Anna Zogas

Welcome to a new year of Somatosphere’s In the Journals section! Here are some of the articles available in January 2017. Enjoy!

Medical Anthropology

Chronic Subjunctivity, or, How Physicians Use Diabetes and Insomnia to Manage Futures in the United States
Matthew Wolf-Meyer & Celina Callahan-Kapoor

Prognostication has become central to medical practice, offering clinicians and patients views of particular futures enabled by biomedical expertise and technologies. Drawing on research on diabetes care and sleep medicine in the United States, in this article we suggest that subjectivity is increasingly modeled on medical understandings of chronic illness. These chronic conceptions of the self and society instill in individuals an anxiety about future health outcomes that, in turn, motivate practices oriented at self-care to avoid negative health outcomes and particular medical futures. At its most extreme, these anxieties of self-care trouble conceptions of self and social belonging, particularly in the future tense, leading patients and clinicians to consider intergenerational and public health based on the threats that individual patients pose for others.

Decoding the Type 2 Diabetes Epidemic in Rural India (open access)
Matthew Little, Sally Humphries, Kirit Patel & Cate Dewey

Type 2 diabetes mellitus is an escalating public health problem in India, associated with genetic susceptibility, dietary shift, and rapid lifestyle changes. Historically a disease of the urban elite, quantitative studies have recently confirmed rising prevalence rates among marginalized populations in rural India. To analyze the role of cultural and sociopolitical factors in diabetes onset and management, we employed in-depth interviews and focus groups within a rural community of Tamil Nadu.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

A New Edition of Public Health Nursing Is Now Available

January 17, 2017

Public Health Nursing (vol. 34, no. 1, 2017) is available online by subscription only.

Articles include:

  • “Eliminating Health Disparities through Action on the Social Determinants of Health: A Systematic Review of Home Visiting in the United States, 2005–2015” by Laurie S. Abbott and Lynn T. Elliott
  • “Community Health Needs Assessments: Expanding the Boundaries of Nursing Education in Population Health” by Robin Evans-Agnew, David Reyes, Janet Primomo, Karen Meyer, and Corrie Matlock-Hightower
  • “Public Health Nurses in Israel: A Case Study on a Quality Improvement Project of Nurse’s Work Life” by Ilya Kagan, Sara Shachaf, Zofia Rapaport, Tzipi Livne, and Batya Madjar

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.