Tag: family members

Bioethics Blogs

In the Journals – August 2017 by Livia Garofalo

Here is the article round-up for August, put together in collaboration with Ann Marie Thornburg.  There is a special issue section of Social Science and Medicine out this month on Austerity, Health, and Wellbeing (abstracts below). Also of note is a recent ‘Takes a Stand’ statement on the End of AIDS published in Global Public Health by Nora Kenworthy, Richard Parker, and Matthew Thomann. You can take advantage of the article being temporarily free access and on early view here. Enjoy!

 

Cultural Anthropology (Open Access)

Tangles of Care: Killing Goats to Save Tortoises on the Galápagos Islands

Paolo Bocci

If calls to care for other species multiply in a time of global and local environmental crisis, this article demonstrates that caring practices are not always as benevolent or irenic as imagined. To save endemic tortoises from the menace of extinction, Proyecto Isabela killed more than two hundred thousand goats on the Galápagos Islands in the largest mammal eradication campaign in the world. While anthropologists have looked at human engagements with unwanted species as habitual and even pleasurable, I discuss an exceptional intervention that was ethically inflected toward saving an endemic species, yet also controversial and distressing. Exploring eradication’s biological, ecological, and political implications and discussing opposing practices of care for goats among residents, I move past the recognition that humans live in a multispecies world and point to the contentious nature of living with nonhuman others. I go on to argue that realizing competing forms of care may help conservation measures—and, indeed, life in the Anthropocene—to move beyond the logic of success and failure toward an open-ended commitment to the more-than-human.

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

NIH Family Members Giving Back: Toben Nelson

Caption: Toben Nelson (back row, far left) celebrates with his Roseville Raiders after winning Gopher State Tournament of Champions.
Caption: Heather Hammond Nelson

What was Toben Nelson, a University of Minnesota epidemiologist who studies the health risks of alcohol abuse and obesity, doing this summer lugging around a heavy equipment bag after work? Giving back to his community. Nelson volunteered as a coach for the Roseville Raiders, a 13-year-old-and-under traveling baseball team that just wrapped up its season by winning the prestigious Gopher State Tournament of Champions in their age group.

In the fall, Nelson will gear up for hoops as the volunteer president of the Roseville Youth Basketball Association, which provides an opportunity for kids in this Minneapolis-St. Paul suburb to take part in organized sports. Nelson says volunteering grounds him as a scientist. It reminds him every single day that his NIH-supported research back at the office affects real lives and benefits real communities like his own.

Nelson is currently studying strategies to prevent alcohol-related injuries and violence. He also works on projects to promote physical activity and prevent childhood obesity. Over the years, he and his colleagues have collected a lot of data on teens and young adults, and they know a tremendous amount about their health status, their behaviors and their risks for excessive drinking or becoming overweight. Still, what’s often missing is a connection to the real faces and unique personalities of young people navigating these formative years.

So Nelson downregulates the keen analytical side of his brain on most evenings around 5:30 p.m.

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

Brain Injury and the Civil Right We Don’t Think About

August 25, 2017

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And there was something else: She at times was able to use her left eye to answer simple yes or no questions. That morning, she seemed to relish her new found fluency. She responded with verve, as if the determined downward swoop of her eye could signal an exclamation point.

Communicating with one eye may not seem like much, but it was something to behold. Maggie, as she was known, had suffered a complex stroke six years earlier, during her senior year at Smith College, that involved areas deep in her brain. She had been thought to be in the “vegetative state” — the term commonly used to define the unconscious brain state most of us associate with the right to die movement and the legacies of Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo.

Later, Maggie was found to be in the “minimally conscious state” — a term medically formalized in 2002. Unlike vegetative patients, those in MCS are conscious. They demonstrate intention, attention and memory. They may reach for a cup, say their name and notice you when you walk into their room. The problem is that these actions may be rare and intermittent, so when family members who witnessed them share their observations with staff members, they are often attributed to a family’s wishful thinking.

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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

NIH Family Members Giving Back: Rebecca Shlafer

Rebecca Shlafer/Credit: Brady Willette

When Rebecca Shlafer clicks on her office lights each morning at the University of Minnesota Medical Center, Minneapolis, she usually has a good idea of what to expect from the day ahead as lead of a nine-person research team that studies the effects of incarceration on children and families. It’s her volunteer work that can be unpredictable.

For the past eight years, this developmental child psychologist has donated her free time to serve as a guardian ad litem for abused or neglected children who’ve been removed from their homes and placed under protective supervision of Minnesota’s Fourth Judicial District. In that volunteer capacity, Shlafer advocates in court for the well-being of the child, but doesn’t foster the youngster or provide any day-to-day care.

Shlafer, who recently completed a training grant with NIH’s National Center for Advancing Translational Sciences, first got into volunteering as a graduate student, when she signed up to deliver warm meals to the hungry throughout the Twin Cities area. While completing her Ph.D., she heard about the Hennepin County Guardian ad Litem Program and thought it would be a great fit to use her degree as a community volunteer. Shlafer completed a mandatory 10-week training course, then took on her first case in 2009.

Since then, she’s advocated on behalf of more than 20 abused or neglected kids and estimates she’s donated a total of 750 hours—and counting. As a guardian ad litem, Shlafer thinks holistically about each child, “putting on my Mom hat” to assess his or her needs, be it physical, psychological, or emotional.

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

Opioid Overdoses Leading to More ICU Admissions and Deaths

August 17, 2017

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“People who use injection drugs should obtain naloxone, the overdose reversal drug, and use drugs with partners who can help them,” said Brendan Saloner, a researcher at the Johns Hopkins Bloomberg School of Public Health in Baltimore who wasn’t involved in the study.

In many states, family members can get naloxone, sometimes without a prescription, Saloner said by email. Two medications, buprenorphine and methadone, can also help reduce drug use.

“There is unfortunately a lot of stigma about medication treatments, but they are safe and work,” Saloner added. “Long-term change is possible and recovery is a realistic goal, but it requires time and patience.”

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Image: By Bullenwächter – Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=17856929

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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

NIH Family Members Giving Back: Kafui Dzirasa

Caption: Kafui Dzirasa (front center) with the current group of Meyerhoff Scholars at University of Maryland, Baltimore County.
Credit: Olubukola Abiona

Kafui Dzirasa keeps an open-door policy in his busy NIH-supported lab at Duke University, Durham, NC. If his trainees have a quick question or just need to discuss an upcoming experiment, they’re always welcome to pull up a chair. The donuts are on him.

But when trainees pop by his office and see he’s out for the day, they have a good idea of what it means. Dzirasa has most likely traveled up to his native Maryland to volunteer as a mentor for students in a college program that will be forever near and dear to him. It’s the Meyerhoff Scholars Program at the University of Maryland, Baltimore County (UMBC). Since its launch in 1988, this groundbreaking program has served as a needed pipeline to help increase diversity in the sciences—with more than 1,000 alumni, including Dzirasa, and 270 current students of all races.

Upon graduating from UMBC in 2001 as a Meyerhoff Scholar, Dzirasa was accepted into the M.D./Ph.D. Program at Duke with a focus in neurobiology. Dzirasa rarely had time to visit Baltimore 300 miles away, but he stayed in touch with everyone. After finishing his scientific and residency training and landing a position at Duke as an assistant professor, Dzirasa knew he had to give back. The Meyerhoff Scholars Program had helped him rise as a college track star, an Academic All-American, student body president, and, now, as an established scientist who is studying the brain and mental illness and frequently speaks on panels for public understanding of science.

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

NIH Family Members Giving Back: Charlotte Phillips

Caption: Charlotte Phillips during a visit to a Missouri Mennonite community.
Credit: Richard Hillman

At 1 a.m., most people are fast asleep in their beds. But Charlotte Phillips sometimes finds herself up at that odd hour, waiting anxiously in a deserted Missouri parking lot far from her home. Phillips drives there to meet a contact for a very special delivery: a packet of cheek swabs and blood samples from a newborn Mennonite baby at risk of a life-threatening genetic condition called maple syrup urine disease (MSUD).

For more than two decades, Phillips, an NIH grantee at the University of Missouri, Columbia, has volunteered to ensure that the DNA in these swabs and samples is tested for MSUD within hours of a baby’s birth. If found to be positive for the condition, the baby can receive a needed special formula. Without it, the baby would suffer brain damage within days from its inability to break down amino acids in protein-rich foods, including breast milk and standard infant formula. Hurrying off at a moment’s notice isn’t always convenient, but Phillips, who is not Mennonite, feels a personal calling to do it. She wouldn’t want any babies to die.

MSUD is named for the sweet smell associated with the urine of people left untreated for the condition. The lifelong condition is exceedingly rare, affecting about 1 in 185,000 infants [1]. But, it’s relatively common among Old Order Mennonites, affecting about 1 in 380 infants. That’s because many Mennonites carry one copy of the mutated gene, meaning they won’t develop MSUD but can pass it on to their children if their spouse is also a carrier.

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

Few Americans Plan For End-of-Life Decisions, Even If They Are Sick

Michael S. Dauber, MA, GBI Visiting Scholar

Many moral dilemmas faced by clinicians, patients, and their families arise when individuals have not made plans for the end of their lives or discussed their wishes with their loved ones. To prevent and mitigate these issues, ethicists have suggested for decades that individuals should complete documents such as advanced directives like living wills (legal documents that indicate one’s wishes for interventions like intubation and cardiopulmonary resuscitation (CPR)), and to name a healthcare proxy (an individual to make decisions on one’s behalf in the event one becomes unable). Such measures tend to make it easier for individuals to address moral dilemmas in practice and to determine the ethically appropriate surrogate decision maker for a patient.

According to a recent study published in Health Affairs, few Americans have taken either of these measures. Researchers compiled results from over 150 studies of end-of-life planning measures and determined that only 36.7 percent of those surveyed had completed some sort of advanced directive, with 29.3 percent of those individuals completing living wills and 33 percent empowering a healthcare proxy. The study also found that 42 percent of individuals aged 65 or older had completed some sort of advanced directive, as opposed to 32 percent of individuals younger than 65.

There are several reasons why individuals may be hesitant to complete healthcare proxies. Many young people may feel they can put off decisions about care at the end of their lives because such matters are comparatively unlikely to occur in the short term.

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

Alabama Warden Directed Clinicians to Withdraw Inmate’s Life Support – Federal Court Allows 8th Amendment Claim

Marquette F. Cummings, Jr. was an inmate at St. Clair Correctional Facility in Springville, Alabama. He was seriously stabbed in the eye and was airlifted  to University of Alabama at Birmingham Hospital.


His family filed a federal lawsuit based on the following conduct at the hospital. Dr. Sherry Melton, a medical supervisor at UAB Hospital, changed Cummings’s code status to Do Not Resuscitate without authorization from Gaines or any other family member and without notifying Gaines and Cummings’s family of the decision.


Plaintiffs allege that Dr. Melton relied upon statements from the St. Clair warden to change Cummings’s code status to DNR even though Gaines and several other family members were at the hospital. Plaintiffs further allege that “Warden Davenport authorized UAB medical personnel to stop giving Cummings medication and to disconnect the life support machine.” Plaintiffs allege that contrary to Gaines’s wishes, and “[b]ased on [the] directive from Warden Davenport, Cummings was taken off of life support….” Cummings passed away just hours after UAB medical personnel removed his life support.


Finding that the warden lacked any authority under Alabama law to make those treatment decisions, the court denied the warden’s motion to dismiss the Estate’s § 1983 claim based on Warden Davenport’s alleged deliberate indifference to Cummings’s serious medical need in violation of the Eighth Amendment.

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

NIH Family Members Giving Back: Diane Baker

Caption: My wife Diane inspired me and my staff to volunteer to make dinner for patients and their families at The Children’s Inn at NIH.
Credit: NIH Record

My blog usually celebrates biomedical advances made possible by NIH-supported research. But every August, I like to try something different and highlight an aspect of the scientific world that might not make headlines. This year, I’d like to take a moment to pay tribute to just a few of the many NIH family members around the country who, without pay or fanfare, freely give of themselves to make a difference in their communities.

I’d like to start by recognizing my wife Diane Baker, a genetic counselor who has always found time during her busy career to volunteer. When I was first being considered as NIH director, we had lots of kitchen table discussions about what it might mean for us as a couple. We decided to approach the position as a partnership. Diane immediately embraced the NIH community and, true to her giving spirit, now contributes to some wonderful charities that lend a welcome hand to patients and their loved ones who come to the NIH Clinical Center here in Bethesda, MD.

As a genetic counselor, Diane spent many years working with pediatric patients and their families at the University of Michigan, Ann Arbor. Now she puts this real-world experience to great use as a board member for the Friends of Patients at the NIH. This dedicated group provides a support system for patients participating in an NIH clinical trial and their families.

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.