by Keisha Ray, Ph.D.
This week the National Academy of Sciences (NAS) released a report giving their support for altering heritable genes when previously the NAS only supported altering uninheritable genes. Although it gave very special conditions in which altering human eggs, sperm, and embryos would be acceptable, giving their seal of approval to any alteration of the human germline is a revolutionary move for the current and future status of genetic engineering for a few reasons:
- Expanding Clinical Research
Genetic engineering is already practiced for non-heritable genes. Genes that are known to cause chronic and debilitating diseases are the subject of clinical trials all across the world.…
by Stephanie A. Kraft, JD
The modern experience of pregnancy is distinctly “not your mother’s pregnancy”. Ever-expanding options for carrier, prenatal, and newborn screening offer today’s pregnant women countless choices when it comes to genetic testing—choices that were unheard of, even unfathomable, just a generation ago.
Prenatal screening and diagnosis have long challenged the tension between individual reproductive autonomy and society-wide respect for persons with disabilities. New genetic and genomic technologies have the potential to either heighten or relieve this tension, depending (in part) on how they are implemented. Shakespeare argues that the advent of prenatal whole genome sequencing can remind us that “everyone is potentially disabled” due to one genetic mutation or another, but at the same time he cautions that the widespread use of this technology may lead parents to focus on individual genetic imperfections rather than accepting their children as the “flawed, vulnerable, limited and mortal” people that they are.…
by Abhimanyu Amarnani
Chicago Med (Season 2, Episode 8, 11/10/16).
A December 1st BIOETHICSTV blog post briefly mentioned, Season 2, Episode 8 of Chicago Med. The post notes that the episode dealt with the issues of informed consent in brief. I felt that a more in-depth discussion of these issues was warranted. Consider the storylines in the episode: A young girl with a developmental disorder needs cardiac surgery. Her condition forces her mother to question whether the girl can make decisions for surgery. Second, Nurse April was coughing at the end of episode 7, and viewers learned that she is diagnosed with multidrug resistant tuberculosis (TB).…
by Alyssa M. Burgart & Katherine E. Kruse
As physician ethicists, we often receive consultations where there is no clear ethical question, but rather, discomfort around value judgments. We have struggled to articulate the meaning of colleagues’ morally uncomfortable experiences. The traditional definition of moral distress is quite restrictive and offers no vocabulary for our observations. Clinicians know something is wrong and that it might be of a moral nature. However, they don’t know the “right” thing to do, and the institution isn’t preventing them from acting. In our practice, most ethics consults do not have “right” answers, but they almost universally have people struggling with moral unease.…
by Arthur Caplan, Ph.D.
Academic bioethics has never been popular with Republicans. Libertarians dislike academic bioethics because it seems too elitist and anti-free market. Religious thinkers worry it is technocratic, soulless and crassly utilitarian. Now with Trumpism add a populist disdain for expertise, experts and the scientific method and you have a stew that means few of you reading this will find a rapt audience in Washington for many years to come.
Trump needs to appease the paleocons and religious righ to get things done. This makes it likely that bioethics will be swept back into the culture wars of the Bush era — Abortion.…
by Cass R. Sunstein, JD
Default rules, taken as such, do not intrude on autonomy, even if they influence people without persuading them. If default rules give people certain rights automatically (such as the right to free speech), they promote autonomy for just that reason. And to the extent that default rules give people the freedom to focus on their most pressing concerns, and thus eliminate a kind of “bandwidth tax,” they increase autonomy as well. When default rules compromise autonomy, it is not because they are default rules; it is because they invade, or take, certain rights or interests without people’s explicit consent.…
by Jon C. Tilburt, MD & Richard R. Sharp, PhD
Discontinuity, handoffs, and shiftwork have infiltrated the fabric of healthcare. These changes, made in the name of patient safety, may have the unintended effect of reducing residency training to little more than a terrible shift job, disconnected from the professional ethos so critical to the practice of medicine.
In their piece in AJOB this month Dubov and colleagues highlight several problems with resident duty hour restrictions. They postulate that cultivating a vocabulary of personal and professional “ownership” could counteract the detrimental effects of those restrictions. Their facility with the duty-hours literature is impressive and they rightly note how duty hour restrictions may have especially deleterious effects on surgical training.…
by John D. Lantos, MD
Pullman and Hodgkinson present a case that, it seems, should have been an easy one. A competent adult makes a simple request to discontinue a medical therapy. Further, it was a therapy that he’d already tried so personal experience informed his preference to discontinue therapy. His request was repeated over time. He was determined to have adequate decisional capacity. So why did both the physicians and the bioethicists consider this to be a difficult case?
There are certain cases that lead to such dilemmas. They are cases in which emotions tug us in one direction and reason tugs in another.…