Tag: questionnaires

Bioethics Blogs

Making the theoretical practical: Engaging undergraduate students in research methods by Hannah Mohammad

I am currently an undergraduate student in the Department of Global Health & Social Medicine at King’s College London. The Department’s UG program offers students the opportunity to study social aspects of health and medicine in a multi-disciplinary context with close collaboration between the social sciences, life sciences and biomedicine. In addition, a great emphasis is put on methods training to equip students to carry out their own empirical research projects.

Already in first year, the Research Practice and Design Studio course taught us theories and practices required for qualitative and quantitative research. However, in our undergraduate bubble, these late Tuesday afternoon sessions seemed somewhat distant from conducting actual research. In order to address this perceived disconnect, our course instructor, Dr Laurie Corna decided to adopt a problem-based learning approach that allowed us students to be positioned as emerging researchers whilst learning theoretically about a range of issues central to quantitative and qualitative research designs.

A new research methods course was designed around a series of case-based learning activities that culminated in students conducting their own mixed-methods research. Students’ assignments for the course involved working in teams of two on applying and executing various aspects of the research process in relation to the predefined topic “Physical activity in the city of London”.[1] That is, we learned how to articulate research questions, identify ethical problems, write a research proposal and develop related interview topic guides as well as survey questionnaires. Once we had conducted our research, we were tasked to present our findings in the form of a poster during a “Research Showcase” and create a final report on the research project.

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

Human Breast Milk Sharing—Limited Regulation with Social Justice Implications

February 01, 2017

by Valeria Vavassori-Chen, MS Bioethics, Clarkson University & Icahn School of Medicine at Mount Sinai (2011)

Human Breast Milk Sharing—Limited Regulation with Social Justice Implications

After the birth of both of my children I found myself producing more milk than my kids could consume. I decided to donate my extra supply to any family whose child might need it. While researching the best venue to do so, I discovered a huge demand for free human breast milk and a completely unregulated market.

The benefits of breast milk over formula have been well documented in the medical literature. Human breast milk is naturally designed to meet all the baby’s nutritional needs, and it provides early innate immunity, which, when compared to formula-fed babies, reduces infant morbidity and mortality from infectious diseases. The World Health Organization urges that caregivers should “exclusively breastfeed infants for the child’s first six months to achieve optimal growth, development and health.” Additionally, some newborns with medical issues (especially premature babies whose digestive system is extremely immature) do not tolerate formula at all. Finally, there are many health risks associated with the use of formula.

Knowing the great benefits of human breast milk, many parents who are unable to produce enough breast milk have good reason to seek out private breast milk donors. There are, however, risks associated with human breast milk sharing. These include possible bacterial contamination and even transmission of HIV. Proper handling and storing are essential to reduce bacterial contamination, and a process called flash-heating can be used to inactivate the free-floating HIV virus.

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 Bill Would Allow Employers to See Your Genetic Information–Unless You Pay a Fine

March 14, 2017

(Vox) – A new bill is quietly making its way through Congress that could bring the US a little closer to a Gattaca-like future in which employers could discriminate against their employees based on their genes and risk of disease. To understand how we might get to Gattaca, let’s back up. Under Obamacare, employers are allowed to offer employees deep discounts on health insurance premiums if they participate in workplace wellness programs. The programs often involve medical questionnaires and health assessments — which has meant employers can get access to some of their employees personal health data.

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

Human Breast Milk Sharing—Limited Regulation with Social Justice Implications February 1, 2017 …

February 01, 2017

by Valeria Vavassori-Chen, MS Bioethics, Clarkson University & Icahn School of Medicine at Mount Sinai (2011)

Human Breast Milk Sharing—Limited Regulation with Social Justice Implications

After the birth of both of my children I found myself producing more milk than my kids could consume. I decided to donate my extra supply to any family whose child might need it. While researching the best venue to do so, I discovered a huge demand for free human breast milk and a completely unregulated market.

The benefits of breast milk over formula have been well documented in the medical literature. Human breast milk is naturally designed to meet all the baby’s nutritional needs, and it provides early innate immunity, which, when compared to formula-fed babies, reduces infant morbidity and mortality from infectious diseases. The World Health Organization urges that caregivers should “exclusively breastfeed infants for the child’s first six months to achieve optimal growth, development and health.” Additionally, some newborns with medical issues (especially premature babies whose digestive system is extremely immature) do not tolerate formula at all. Finally, there are many health risks associated with the use of formula.

Knowing the great benefits of human breast milk, many parents who are unable to produce enough breast milk have good reason to seek out private breast milk donors. There are, however, risks associated with human breast milk sharing. These include possible bacterial contamination and even transmission of HIV. Proper handling and storing are essential to reduce bacterial contamination, and a process called flash-heating can be used to inactivate the free-floating HIV virus.

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

Elizabeth Barnes, The Minority Body, Oxford University Press, 2016

Professor Elizabeth Barnes has produced a tightly and carefully reasoned philosophical examination of the significance of disability. It provides a clear defense of certain core principles of the disability rights movement in contrast to the many professional philosophers (those which I will term ‘mainstream bioethicists’) who consider that movement to be ill-conceived. An example of this tradition can be seen in the volume From Choice to Chance: Genetics and Justice, coauthored by four of the most prominent bioethicists of the turn of the century (Buchanan, Brock, Daniels, & Wikler 2000). (For discussion see Amundson & Tresky 2007, 2008.) I confess to the prejudice implied by my label of ‘mainstream bioethicists’ as those beset by the prejudice of ableism. The late Adrienne Asch considered herself a mainstream bioethicist even though her progressive views of disability were rare among her colleagues.

Disability rights is a serious civil rights movement, equal in significance to gay rights, feminism, resistance against discrimination on the basis of ‘race,’ and a number of other such movements. Just as earlier generations of philosophers assumed the legitimacy of the social prejudices of their own times, mainstream bioethicists have assumed the correctness of prevailing assumptions about disability. In this tradition, disabilities are conceptualized as inimical to well-being, they essentially involve suffering, and any civic ameliorations of the problems of disability are seen to result only in slight improvements to the essentially low quality of a disabled life. Barnes argues the contrary. Disabilities should be conceived as mere differences, not bad differences. Her neutral model of disability comports with a great deal of testimony from disabled people themselves.

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

Study Finds No Safe Level of Smoking

ThinkstockNastco

Many Americans who’ve smoked cigarettes have been successful in their efforts to quit. But there’s some bad news for those who’ve settled for just cutting back: new evidence shows there’s no safe amount of smoking. One cigarette a day, or even less than that, still poses significant risks to your health.

A study conducted by NIH researchers of more than 290,000 adults between the ages of 59 and 82 found that those who reported smoking less than one cigarette per day, on average, for most of their lives were nine times more likely to die from lung cancer than those who never smoked. The outlook was even worse for those who smoked between one and 10 cigarettes a day. Compared to never-smokers, they faced a 12 times greater risk of dying from lung cancer and 1½ times greater risk of dying of cardiovascular disease.

The findings, reported by Maki Inoue-Choi of NIH’s National Cancer Institute, Rockville, MD, and colleagues, come from an analysis of data from the NIH-AARP Diet and Health Study. The study is evaluating the effects of diet and lifestyle on cancer risk over many years in a large group of seniors from across the country.

The study began about 20 years ago, when a team of NIH researchers mailed questionnaires to 3.5 million members of AARP.  More than a half million people answered the original survey. Since then, these respondents have completed two follow-up surveys about their lifestyle and behaviors, including their smoking patterns from ages 15 to 70.

As published in JAMA Internal Medicine, the latest analysis included more than 290,000 seniors who answered a survey conducted from 2004 to 2005 [1].

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

Morning Sickness Associated with Lower Miscarriage Risk

Thinkstock

During the first trimester of pregnancy, many women experience what’s commonly known as “morning sickness.” As distressing as this nausea and vomiting can be, a team of NIH researchers has gathered some of the most convincing evidence to date that such symptoms may actually be a sign of something very positive: a lower risk of miscarriage.

In fact, when the researchers studied a group of women who had suffered one or two previous miscarriages, they found that the women who felt nauseous during their subsequent pregnancies were 50 to 75 percent less likely to miscarry than those without nausea. While it’s not yet exactly clear what’s going on, the findings lend support to the notion that morning sickness may arise from key biological factors that reflect an increased likelihood of a successful pregnancy.

The study, reported recently in JAMA Internal Medicine [1], was led by Enrique Schisterman and Stefanie Hinkle of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development. Their findings are based on a secondary analysis of existing data from the recently completed Effects of Aspirin in Gestation and Reproduction (EAGeR) trial. It found that aspirin might help in select cases but is not generally recommended to prevent pregnancy loss [2].

While other studies have looked at the effects of morning sickness on the risk of miscarriage, most have been limited to pregnancies lost late in the first trimester or thereafter. That’s one of the ways in which the EAGeR study is noteworthy. It enrolled 1,228 women who had one or two previous miscarriages and followed them for up to six menstrual cycles as they tried to become pregnant again.

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

Testing Donated Blood for Zika: Politics or Prudence?

by Craig Klugman, Ph.D.

The FDA has announced that within the next 3 months, all donated blood in the United States should be screened for Zika virus. Puerto Rico and Florida are already conducting such screening. In the next four weeks, 11 more states should be screening (Alabama, Arizona, California, Georgia, Hawaii, Louisiana, Mississippi, New Mexico, New York, South Carolina and Texas) followed by nationwide testing within the next 3 months. The goal is to have a safe and trusted blood supply.

Although on this surface this looks like a preventive public health move, it is a political one. Consider that there have been 8,000 documented cases of Zika in the U.S. with only 2,000 of them locally acquired (meaning no history of travel to a country with Zika). Most of the local cases are in Puerto Rico. Eighty percent of those infected never have symptoms.

The emphasis seems to be more on trust than it is on safety. Only 1/3 of the 15 countries that reported confirmed infections have reported transmission through sexual contact. This could mean either that other countries aren’t aware or aren’t reporting, or that such transmission is only happening among certain strains of the virus. The FDA announcement, however, is aimed at protecting the blood supply. And data for blood transmission is also lacking, whether a lack of awareness or reporting. In fact, according to the CDC, Brazil is the only country that has seen any Zika in its blood supply. During the original French Polynesian outbreak, 2.8% of blood donors tested positive.

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 – July Pt. II by Christine Sargent

Hello everyone! Please check out our roundup for the second half of the month. Also, the current issue of Hau has a symposium on Webb Keane’s Ethical Life: Its Natural and Social Histories (2016) that may be of interest, with contributions by Cheryl Mattingly, Rita Astuti, James Laidlaw, Nicholas Harkness, C. Jason Throop, Richard Schweder, and Webb Keane himself.

Science, Technology, and Human Values

Living with Spinal Cord Stimulation: Doing Embodiment and Incorporation

Lucie Dallbert

Seen as contributing to human enhancement, implanted technologies have recently been receiving a lot of attention. However, reflections on these technologies have taken the shape of rather speculative ethical judgments on “hyped” technological devices. On the other hand, while science and technology studies and philosophy of technology have a long tradition of analyzing how technological artifacts and tools transform and (re-)configure our lives, they tend to focus on use configurations rather than the intimate relations brought about by implanted technologies. Even the cyborg has lost some of its hermeneutic power as it has been detached from its material grounds, becoming a discursive entity. In this article, I reclaim the importance of materiality and explore how people live (and learn to live) with spinal cord stimulation (SCS), which is a type of neuromodulation technology. Implanted in bodies and seemingly out of sight, this technology does not cease to matter. Embodiment and incorporation are crucial for people to live well with SCS. Embodying the neuromodulation technology entails groping processes in which gestures are central and an increased intimacy with one’s bodily materiality. Incorporating it is highly relational and entangled with the bodies of loved and distant ones, humans and nonhumans.

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 – June 2016, Part II by Anna Zogas

We have three special issues to conclude our highlighting of new articles in June! Here they are:

  • Surveillance and Embodiment: Dispositifs of Capture, in Body & Society
  • Perspectives on patienthood, practitioners and pedagogy, in Medical Humanities
  • Childbirth and Reproduction, in Sociology of Health & Illness

And, if you’re looking for more to read, the first part of this month’s roundup is here.

Body & Society

Surveillance and Embodiment: Dispositifs of Capture
Martin French, Gavin JD Smith 

This article provides an introduction to a special issue of Body & Society that explores the surveillance-embodiment nexus. It accentuates both the prevalence and consequence of bodies being increasingly converted into ‘objects of information’ by surveillance technologies and systems. We begin by regarding the normalcy of body monitoring in contemporary life, illustrating how a plurality of biometric scanners operate to intermediate the physical surfaces and subjective depths of bodies in accordance with various concerns. We focus on everyday experiences of bodily intermediation by surveillant dispositifs, and consider the broader political, epistemological, and ontological significance of these processes. We then point to the substantive intersections and divergences existing between body and surveillance studies. We conclude with an overview of the five articles appearing in this special issue. We describe how each contribution creates a template for imagining what a body is, and what a body might become, in a culture defined by proliferating data sharing behaviours, systems of codification, and practices of intermediation.

Surveillance, Privacy and the Making of the Modern Subject: Habeas what kind of Corpus?
Charlotte Epstein

In this article I consider how our experiences of bodily privacy are changing in the contemporary surveillance society.

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.