Tag: health status

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 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 News

Ethical questions about mitochondrial replacement in humans. Three parents babies

We thus consider it necessary to establish a moratorium on their use in humans, at least until more is known about these aspects. If this knowledge is obtained, ethical questions would still remain to be resolved, among which we consider the most relevant to be those related to the dignity and identity of the human embryo.

Children with two mothers and a father

In January 2017, the prestigious scientific journal Bioethics published a special edition dedicated to the ethical aspects of nuclear transfer techniques aimed at preventing the transmission of mitochondrial diseases, a topic that we have extensively addressed in our Observatory (see HERE).

Its editorial, Ethics of mitochondrial replacement, starts by referring to the recent birth of the first baby resulting from these techniques (see HERE). It then provides a brief description of the main characteristics of mitochondrial diseases, which are inherited exclusively from the mother. It explains that mothers who carry mutations in their mitochondrial DNA (mtDNA) face the uncertainty of not knowing if their genetic children will or will not inherit a serious mitochondrial disease. However the emergence of mitochondrial replacement techniques (MRT) offers these mothers hope, as healthy mitochondria from a donor are used to replace those of the mother. These techniques are maternal spindle transfer (MST) and pronuclear transfer (PNT), which consist, respectively, in removing the nucleus from a healthy egg or zygote, which will keep its mitochondria. The nucleus of the mother’s oocyte (patient or carrier of the mutation) or of another zygote obtained by fertilising the mothers egg is then transferred into the enucleated oocyte or zygote.

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

The Children of Agent Orange

December 16, 2016

(ProPublica) – The analysis that followed was revealing: The odds of having a child born with birth defects during or after the war were more than a third higher for veterans who say they handled, sprayed or were directly sprayed with Agent Orange than for veterans who say they weren’t exposed or weren’t sure. The analysis controlled for such variables as age and health status.

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

Means to an End December 16, 2016 According to a recent survey of nearly 8,000 Americans, ov…

December 16, 2016

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

Means to an End

My mother passed away last Wednesday. She was found unresponsive on the floor of her kitchen early Tuesday, in severe septic shock from untreated peritonitis and a perforated intestine. Although she was admitted to the intensive care unit and given aggressive medical treatment, she never regained consciousness. Because of her age and her poor health – exacerbated by the fact that she had ignored the signs and symptoms of sepsis for nearly a month – her body was simply not strong enough to fight the infection. Less than thirty-six hours after she was admitted to the hospital, we let her peacefully and painlessly slip away.

I’m telling you this story not to garner sympathy, but rather to share with you a lesson that I learned. Because my mother was unmarried and because she was unable to consent for treatment, according to the laws of the state in which she lived I was the de facto decision maker about her medical care. This is quite common. Unless otherwise indicated, family members – usually the spouse, adult children, adult siblings and parents, in that order – are assumed to be the surrogate decision makers for a patient who cannot provide consent.

The decisions that I had to make, most of which were made at 2:30 in the morning after chatting briefly with the clinical care team, included the decision to make my mother DNR (‘do not resuscitate’) after her heart stopped for the third time.

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

Monday, 11/21, Health Law Workshop with Elizabeth Weeks Leonard

November 21, 2016 5-7 PM Hauser Hall, Room 104 Harvard Law School, 1575 Massachusetts Ave., Cambridge, MA Download the presentation materials: “Healthism:  Health Status Discrimination and the Law” Jessica L. Roberts and Elizabeth Weeks Leonard, “Healthism: Health Status Discrimination and … Continue reading

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

Creative Minds: The Worm Tissue-ome Teaches Developmental Biology for Us All

Caption: An adult Caenorhabditis elegans, 5 days
Credit: Coleen Murphy, Princeton University, Princeton, NJ

In the nearly 40 years since Nobel Prize-winning scientist Sydney Brenner proposed using a tiny, transparent soil worm called Caenorhabditis elegans as a model organism for biomedical research, C. elegans has become one of the most-studied organisms on the planet. Researchers have determined that C. elegans has exactly 959 cells, 302 of which are neurons. They have sequenced and annotated its genome, developed an impressive array of tools to study its DNA, and characterized the development of many of its tissues.

But what researchers still don’t know is exactly how all of these parts work together to coordinate this little worm’s response to changes in nutrition, environment, health status, and even the aging process. To learn more, 2015 NIH Director’s Pioneer Award winner Coleen Murphy of Princeton University, Princeton, NJ, has set out to analyze which genes are active, or transcribed, in each of the major tissues of adult C. elegans, building the framework for what’s been dubbed the C. elegans “tissue-ome.”

Although C. elegans and humans diverged from a common ancestor more than 300 million years ago, they share about 40 percent of their protein-coding DNA in common. These genetic similarities, along with the ease of manipulating the C. elegans genome and its relatively short life span, has made it a great system for unraveling the molecular mechanisms that underlie development, behavior, and aging in a multi-cellular organism.

However, researchers have run into difficulties when they’ve attempted to conduct cell-specific analyses of gene transcription in various types of C.

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 – October 2016 by Livia Garofalo

Here is our “In the Journals” roundup for October. In addition to a rich selection of abstracts, also of interest this month are a Special Issue of Osiris on the “History of Science and Emotions” and two recent articles by Fernando Vidal on brains in literature and cinema (linked below). Enjoy!

 

Theory & Psychology 

Desire, indefinite lifespan, and transgenerational brains in literature and film

Fernando Vidal 

Even before the brain’s deterioration became a health problem of pandemic proportions, literature and film rehearsed the fiction of brain transplantations that would allow an aging person to inhabit a younger body, so that successive surgeries may result in that person’s immortality. Such fiction makes the brain operate like an immaterial soul that does not undergo physical decline. This article examines that fiction as elaborated in Hanif Kureishi’s The Body and several films in connection with older fantasies that articulate desire, eternal youth, and personal immortality, with philosophical discussions about brain and personhood, and with people’s assimilation of neuroscientific idioms into their views and practices of personal identity. In conclusion it discusses how, in contrast to philosophical approaches that tend to focus on self-consciousness, first-person perspectives, and individual autonomy, fiction may contribute to direct attention to relationality as constitutive of personhood.

SubStance 

Frankenstein’s Brain: “The Final Touch”

Fernando Vidal 

 

Critical Public Health

A critical examination of representations of context within research on population health interventions

Jean Shoveller, Sarah Viehbeck, Erica Di Ruggiero, Devon Greyson, Kim Thomson and Rodney Knight

Research that fulsomely characterizes context improves our understanding of the processes of implementation and the effectiveness of interventions to improve the health of populations and reduce health inequalities.

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

Baltimore Draws 10-Year Blueprint To Cut Racial Health Disparities

Baltimore officials presented a 10-year plan Tuesday that sharply highlights the poor health status of African-Americans and aims to bring black rates of lead poisoning, heart disease, obesity, smoking and overdoses more in line with those of whites

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

Do the EPA Exposure Studies Violate Do No Harm and Informed Consent?

by Craig Klugman, Ph.D

A government agency recruits elderly and sick patients for an important research study. In a controlled environment, subjects are exposed to airborne pollutants at levels many times higher than found in the real world. Some pollutants are considered so dangerous that the FDA considers any exposure to be dangerous.

Such a scenario may sound like a historical case study of human subjects abuse, but such studies are actually the subject of an 18-month review by the EPA on ethical conduct of research. Such studies are not a secret. In fact, a 2000 article in the journal Environmental Health Perspectives talks about the benefit of exposing people to pollutants at controlled doses in controlled environments. The last meeting of the review committee was August 24, 2016.

Subjects are consented to participate in the experiments, but the EPA’s own inspector general has questioned whether potential subjects truly understood the risks and whether researchers immediately and properly reported all adverse events. Specifically, the inspector general refers to a study of 81 subjects, exposing them to airborne particles and diesel exhaust fumes in 2010 and 2011. The concerns range from lack of review board approval and notification of study modifications, to addressing risks differently to different subjects in the same study, to a lack of procedures for reporting and acting on adverse events.

The public health benefits of this research are important for answering how much exposure is safe as well as what are the effects of exposure at various levels to a diverse pool of people (based on age, ethnicity, health status).

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.