Tag: surveys

Bioethics Blogs

Will CRISPR fears fade with familiarity?

With all these ‘test tube’ babies grown up, how have our reactions to the technology evolved? AP Photo/Alastair Grant

The first “test-tube baby” made headlines around the world in 1978, setting off intense debate on the ethics of researching human embryos and reproductive technologies. Every breakthrough since then has raised the same questions about “designer babies” and “playing God” – but public response has grown more subdued rather than more engaged as assisted reproductive technologies have become increasingly sophisticated and powerful.

As the science has advanced, doctors are able to perform more complex procedures with better-than-ever success rates. This progress has made in vitro fertilization and associated assisted reproductive technologies relatively commonplace. Over one million babies have been born in the U.S. using IVF since 1985.

And Americans’ acceptance of these technologies has evolved alongside their increased usage, as we’ve gotten used to the idea of physicians manipulating embryos.

But the ethical challenges posed by these procedures remain – and in fact are increasing along with our capabilities. While still a long way from clinical use, the recent news that scientists in Oregon had successfully edited genes in a human embryo brings us one step closer to changing the DNA that we pass along to our descendants. As the state of the science continues to advance, ethical issues need to be addressed before the next big breakthrough.

Birth of the test-tube baby era

Louise Brown was born in the U.K. on July 25, 1978. Known as the first “test-tube baby,” she was a product of IVF, a process where an egg is fertilized by sperm outside of the body before being implanted into the womb.

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

End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBH
conference
 in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities.  Here are ones that pertain
to end-of-life issues.


THURSDAY, OCTOBER 19


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU – Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)


Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care. 


Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients. 


Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 


Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p


Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.


THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and
Communicating Risks at the End of Life (Janet Malek)


Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient’s rising creatinine
levels if death is expected within weeks even with dialysis.

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

Mental Privacy in the Age of Big Data

By Jessie Ginsberg
Jessie Ginsberg is a second year student in the Master of Arts in Bioethics program and a third year law student at Emory University. 

A father stood at the door of his local Minneapolis Target, fuming, and demanding to speak to the store manager. Holding coupons for maternity clothes and nursing furniture in front of the manager, the father exclaimed, “My daughter got this in the mail! She’s still in high school, and you’re sending her coupons for baby clothes and cribs? Are you trying to encourage her to get pregnant?”
Target was not trying to get her pregnant. Unbeknownst to the father, his daughter was due in August.  
In his February 16, 2012 New York Times article entitled, “How Companies Learn Your Secrets,” Charles Duhigg reported on this Minneapolis father and daughter and how companies like Target use marketing analytics teams to develop algorithms to anticipate consumers’ current and future needs. Accumulating data from prior purchases, coupon use, surveys submitted, emails from Target that were opened, and demographics, a team of analysts render each consumer’s decision patterns into neatly packaged data sets tailored to predict their future buying choices. 

Flash forward to 2017, a time where online stores like Amazon dominate the market and cell phones are reservoirs of personal information, storing intimate details ranging from your location to your desired body weight to your mood. Furthermore, data analysis algorithms are more sophisticated than ever before, gobbling up volumes of information to generate highly specific and precise profiles of current and potential consumers.

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

1 in 7 Americans Want Caregivers to Do “Whatever It Takes to Be Kept Alive”

The Massachusetts Coalition for Serious Illness Care has published the second in its annual series of surveys measuring Massachusetts residents’ views on serious illness and end-of-life care.


Consistent with Pew and at least a half-dozen other surveys, around 1 in 7 report that they want caregivers to do “whatever it takes to be kept alive.”


Because this 14% is a percentage is substantially higher than that reported acceptable by clinicians, US hospitals will continue to have a significant rate of medical futility conflicts. 


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

1 in 7 Americans Want Caregivers to Do “Whatever It Takes to Be Kept Alive”

The Massachusetts Coalition for Serious Illness Care has published the second in its annual series of surveys measuring Massachusetts residents’ views on serious illness and end-of-life care.


Consistent with Pew and at least a half-dozen other surveys, around 1 in 7 report that they want caregivers to do “whatever it takes to be kept alive.”


Because this 14% is a percentage is substantially higher than that reported acceptable by clinicians, US hospitals will continue to have a significant rate of medical futility conflicts. 


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: February 2017 by Christine Sargent

American Ethnologist

Good ramps, bad ramps: Centralized design standards and disability access in urban Russian infrastructure

Cassandra Hartblay

Accessible design seeks to reconfigure the social by restructuring the material. As the idea moves globally, it becomes entwined in local logics of moral obligations between citizens and the state. Wheelchair users in the city of Petrozavodsk, in northwestern Russia, talk about inaccessible infrastructure as being embedded in moral relationships. In their stories, hierarchies of expertise diffuse responsibility for outcomes and devalue user knowledge. When accessible design elements are installed to meet minimum standards, they are “just for the check mark” and often do not “work.” Wheelchair ramps produce value for businesses or governments by representing an idea of access that circulates as a commodity. Failed accessible design draws attention to a moral field governing the responsibilities of actors to produce a “good” built environment, imbricated in teleologies of progress. [disability, design, infrastructure, access, ramps, postsocialism, Russia]

Self-governance, psychotherapy, and the subject of managed care: Internal Family Systems therapy and the multiple self in a US eating-disorders treatment center

Rebecca J. Lester

“The self” has seen a surprising resurgence in recent anthropological theorizing, revitalizing interest in whether and how it can be studied ethnographically. These issues are brought to the fore by a newly popular psychotherapy technique, Internal Family Systems therapy (IFS), as practiced in a US eating-disorders clinic. There, clinicians and clients negotiate tensions between this model’s understanding of a multiple, refracted self and managed-care companies’ insistence on personal responsibility. In considering the moral and pragmatic work of IFS in the clinic, a new critical anthropology of selfhood illuminates the vectors through which economic and political commitments become imbricated in the self.

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

Prescription of psychotropic drugs doubles for US retirees

The number of US retirees taking three or more psychotropic drugs has doubled between 2004 and 2013, according to a new paper published in the Journal of the American Medical Association.

The study, lead by researchers from the University of Michigan and Columbia University, found that doctors were approximately 150% more likely to prescribe psychiatric, sleep, or pain medications to patients over the age of 65.

The researchers reviewed annual government surveys of office-based doctors, and focused on the prescription of at three three of a list of psychiatric, sleep and pain medications like Valium, Prozac, OxyContin and Ambien.

“Between 2004 and 2013, annual polypharmacy visits by adults 65 years or older increased from 1.50 million…to 3.68 million”, the researchers state.

“The biggest jump was in rural areas,” Dr. Mark Olfson, one of the principal authors of the paper, told the New York Times. “[This] suggests to me that the increases partly reflect doctors and patients falling back on medications when they have little access to other options”, he said.

Experts expressed concern at the findings, saying that polypharmacy — the prescribing of three or more psychiatric drugs — can bring dangerous side-effects.

“I was stunned to see … that despite all the talk about how polypharmacy is bad for older people, this rate has doubled,” Dr. Dilip Jeste, a professor of psychiatry and neurosciences at the University of California, San Diego, told the New York Times.

The researchers found that nearly half — almost 46 percent — of people with at least three prescriptions had no diagnosis of mood, chronic pain or sleep problems.

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

TRIAD VIII: Nationwide Multicenter Evaluation to Determine Whether Patient Video Testimonials Can Safely Help Ensure Appropriate Critical Versus End-of-Life Care

Ann Denny’s image on recording healthcare directives
It was a real pleasure to be part of this project on adding video testimonials / messages to advance directives.  This was released today in the Journal of Patient Safety.  This is the 8th in the series of TRIAD articles – The Realistic Interpretation of Advance Directives.

Objective: End-of-life interventions should be predicated on consensus understanding of patient wishes. Written documents are not always understood; adding a video testimonial/message (VM) might improve clarity. Goals of this study were to (1) determine baseline rates of consensus in assigning code status and resuscitation decisions in critically ill scenarios and (2) determine whether adding a VM increases consensus.

Methods: We randomly assigned 2 web-based survey links to 1366 faculty and resident physicians at institutions with graduate medical education programs in emergency medicine, family practice, and internal medicine.  Each survey asked for code status interpretation of stand-alone Physician Orders for Life-Sustaining Treatment (POLST) and living will (LW) documents in 9 scenarios. Respondents assigned code status and resuscitation decisions to each scenario. For 1 of 2 surveys, a VM was included to help clarify patient wishes.

Results: Response rate was 54%, and most were male emergency physicians who lacked formal advanced planning document interpretation training. Consensus was not achievable for stand-alone POLST or LW documents (68%–78%noted “DNR”). Two of 9 scenarios attained consensus for code status (97%–98% responses) and treatment decisions (96%–99%). Adding a VM significantly changed code status responses by 9% to 62% (P ≤ 0.026) in 7 of 9 scenarios with 4 achieving consensus. Resuscitation responses changed by 7%to 57%(P ≤ 0.005)

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

Special Issues! The Publics of Public Health in Africa | Anthropological Interrogations of Evidence-Based Global Health by Anna Zogas

I’d like to highlight a pair of Special Sections in the early 2017 issues of Critical Public Health. The first is “The Publics of Public Health in Africa,” guest edited by Ann H. Kelly, Hayley MacGregor, and Catherine M. Montgomery. The second is “Anthropological Interrogations of Evidence-Based Global Health,” guest edited by Elsa L. Fan and Elanah Uretsky. Here are the abstracts for the articles in both sections!

 

The Publics of Public Health in Africa 

The publics of public health in Africa (open access)
Ann H. Kelly, Hayley MacGregor & Catherine M. Montgomery

Excerpt: How do we understand the public character of public health in contemporary Africa? What are the parameters of community engagement in health care delivery, medical research and disease control programmes? To what extent is public health in Africa a project led by African Governments? Through what political processes and deliberative practices can African publics influence the priorities of research in health sciences and interventions which aim in broad terms to improve the health of such publics? Drawing insight from empirical research conducted with African scientists, nurses, community members, clinical trialists and policy-makers, this special section examines the multiple ways in which the publiccomes into being around public health provisioning and investigation in sub-Saharan Africa, its role and political reach. Collectively, these papers show how contestation and negotiation around different ideas about who the public is and what being public means can lead to the emergence of conflicting understandings, with implications for who and what is seen to represent the public interest, and for the acceptance of research and other interventions.

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

JHU Projects Explore Ethical Challenges

Hub Staff Report/Crossposted from the HUB

 


 

“Why is it that most of the university’s focus on contemporary ethical issues is concentrated on health care, public health, and the biomedical sciences? Surely other professions and other disciplines also face important real world ethical issues—shouldn’t Hopkins faculty, staff, and students be addressing these issues as well?”

 

That question, posed by Johns Hopkins University trustee Andreas Dracopoulos to the Berman Institute of Bioethics, helped inspire and drive the JHU Exploration of Practical Ethics program, a grant program to fund research into interdisciplinary fields of ethics.

 

“IT IS EASY FOR US TO STAY AWAY FROM ISSUES LIKE WHAT WE’RE TALKING ABOUT TODAY. BUT IT IS IMPORTANT FOR US TO GRAPPLE WITH THESE ISSUES IN A THOUGHTFUL WAY, AND TO HAVE OUR OWN THOUGHT LEADERS COME TOGETHER.”

Sunil Kumar, JHU provost

The program provided funds for nine projects—some of which are still under way—that examine issues relating to criminal justice, higher education, economics, and environmentalism. At a symposium Tuesday, those projects were presented to members of the university community.

 

“Andreas’ provocative question—and it was provocative—set in motion a process of exploration among university leadership initiated by [JHU] President [Ronald J.] Daniels,” said Ruth Faden, the former director of the Berman Institute, in her remarks opening the symposium. “The goal of this process is to assess whether the university should expand its footprint beyond the traditional territories of bioethics and take on the full range of ethical challenges facing society.”

 

     Jon Spaihts, screenwriter of Passengers, and Prometheus, hosts the symposium

 

Some of the projects centered on ethical dilemmas surrounding climate change and pollution.

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.