As a new clinical ethicist in training, I’m allowed to take some looks in the metaphorical kitchen of the hospital where things really happen: seeing research and treatment in practice. This is an amazing experience, as I always thought of myself in the court room (my primary degree is in law) and I had never pictured myself in an operating room. Thanks to all the compassionate and generous physicians in this hospital, who allow me to peek in their kitchen (as long as I don’t function as the ethics police), I get an understanding of the difference between the ivory tower of academic (bio) medical ethics and the real ethical issues of the work floor.  

Not too long ago I observed a WADA test in the epilepsy department. The WADA test is used to establish where language and memory are located in the brain; in which hemisphere do these capacities ‘reside’. (When we think simplistically and typically, a right-handed individual has memory and language on the left side of the brain, but there are a lot of exceptions and mixed brains). During the WADA test, doctors try to mimic a stroke of the brain; while the patient is awake, one hemisphere is temporarily sedated (around 2 minutes) and a series of tests are done to see how the patient memorizes and describes objects, based on the functioning of only 1 side of the brain. Subsequently, the other hemisphere is sedated and a similar test is performed. These tests are done, for example, to assess what would happen if a particular part of the brain is surgically removed; i.e. the area that contains the origin of the epileptic episodes.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

The responsible conduct of research (RCR) (a.k.a. as research integrity) captures a range of ethical norms and practices which include research misconduct (generally defined as fabrication, falsification and plagiarism), authorship and publication ethics, the ethics of peer review, proper data management, mentoring, conflicts of interest, animal ethics, and the ethics of research involving humans. In some cases, topics such as animal ethics and the ethics of research involving humans are subfields of their own due to the extensive scholarship devoted to them. RCR has received considerable attention in many nations. For example, students and faculty may be required to receive education and training in RCR, several scholars study and perform research on research integrity, and many countries have developed policies to govern research integrity (Resnik and Master, 2013; Master, 2012). Yet most educational initiatives and research on research integrity center on the natural and applied sciences including, biomedical science, clinical research, engineering, and psychology. Fewer research integrity policies, education, and research is devoted to philosophy or law, or for multi or interdisciplinary fields such as bioethics.

I have previously argued that bioethicists need to pay closer attention to issues of research integrity. Why is this important? I define bioethics as an interdisciplinary field where scholars from philosophy, law, science, medicine, social science, nursing and anthropology come together to work on a common set of normative questions using a range of methods and theoretical lenses. By focusing efforts towards understanding research integrity practice, we will better understand the epistemic dimensions of our field, enhance integrity in bioethics scholarship, and be able to evaluate bioethicists more fairly. In turn, these efforts are likely to promote greater trust in bioethics by other academic scholars, among bioethicists, and the general public. Yet the field of bioethics has not paid close enough attention as it relates to research integrity issues of its own scholarship. Let’s focus on authorship as an example since this is one area that has most recently received some attention.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

The Dickey-Wicker Amendment (DWA) was passed in 1996 and prevents federal funding of research that destroys embryos. This congressional prohibition defines a human embryo as “any organism not protected as a human subject” that was “derived by fertilization, parthenogenesis, or any other means from one or more human gametes.” While there has been much debate in the bioethics and popular press media about the ethics of embryo research, what has been almost entirely overlooked is the ethics of parthenote research.

The DWA conflates embryos and parthenotes even though there are important scientific and ethical differences between them. Parthenotes are cells derived by parthenogenesis, the process in which eggs become activated to begin dividing without fertilization. Because there is no sperm involvement, parthenotes contain genetic material from only one source (i.e. the egg). In contrast, embryos are created through fertilization and contain genetic material from two genetically dissimilar cells (i.e. egg and sperm). Another important difference is that while embryos can result in a live birth baby, human parthenotes cannot. Human parthenotes, whether they come into existence naturally or in a lab, die in the early stages of development. Scientists can create human parthenotes in the lab by activating eggs through chemical stimuli that mimic fertilization, but studies in other mammals indicate that, without the required genetic imprinting, further development is ruled out.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

Medical educators over the past six decades have designed educational objectives and curricula as though it was the educational process itself that determines students’ values and their behavior as professionals, without considering the influence of the structural environment on medical trainees. From the 1950’s on, asSamuel Bloom observed in 1988, there are examples, continuing to present day, of medical schools devising curricula with the goal “…to repair what were believed to be the dehumanizing effects of scientific specialization, but with the retention of the best of science.” To achieve these goals educators drew from the social sciences and humanities, and by the 1970s, from the growing interest in medical humanism and specifically from the field of medical ethics, which now is mostly referred to as bioethics. Bloom claims these subjects, like science, have been split off from the context of how they impact medical practice and taught mostly as an intellectual activity, thus creating a dualism between theory and practice. The curriculum has been assumed on its own to be an instrument of behavioral change that follows from knowledge. The essential process of social organization is sadly lost from view and deemphasized. How can we account for this rift?

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

With the explosion of health information available online and in print media it can be difficult for consumers to determine which sources to trust and which ones to toss.  As with all of the material available on the World Wide Web, consumers must exercise caution and diligence when evaluating the veracity of internet information. While we may be pretty good at knowing how to determine which sites look trustworthy enough to safely manage credit card information or other private data, it may be more difficult for consumers to assess the reliability of health information on the internet. Given the sometimes high stakes involved in making healthcare decisions perhaps such sites should be required to include links which will connect consumers to tools which will train them to better evaluate health information in the media. Though this will not guarantee any given web surfer will take advantage of these links, but it could be a start to improving health information literacy.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

Anonymity has always been an important component of protecting the privacy of human participants in research and other activities including biobanking. In his January 21, 2013 post to this blog, my colleague Zubin Master asked the question “could it be possible to identify people who have participated in biobanking projects?”  We did not have to wait very long for an answer. It turns out that the January 18, 2013 issue of Science was already on my desk.  In a study in that issue, Melissa Gyrmek and colleagues in a group led by Yaniv Ehlich describe how they used a published genetic sequence as well as accompanying metadata and freely accessible genealogy websites to identify the sequence’s owner. This was big enough news to merit a news article and a policy forum examining the ethical implications all in one issue.

A previous study (Science, September 5, 2008 p1278) had allowed donor identification from a blood sample through analysis of single nucleotide polymorphisms by sequencing a blood sample. This new study is the first to use simply a published sequence.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

A recent blog about a tragic situation in Tennessee highlights how difficult it is to create a “fair” healthcare system.

In this case, the patient is a nine-year-old severely disabled girl. She is maintained on a ventilator and feed through a tube. “She requires medicines and breathing treatments around the clock.” “She has to be suctioned every ten minutes or so to avoid suffocating on her own saliva.” She responds to family and caregivers minimally. And, she resides at home with her parents. Her father works and her mother is disabled with severe arthritis. Because family members cannot take care of her 24 hours a day, seven days a week, home health nurses provide most of the moment-to-moment care. However, home health nurses are very expensive, much more costly than if the patient were a patient in a nursing home (about $1000 a day).

The crux of the controversy between the parents and Tennessee’s Medicaid program – TennCare – is home care versus nursing home care. The parents want to keep their child at home with 24 hours nursing support, but TennCare will only pay for nursing home care in a skilled care facility.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.