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Remember how people were afraid that based on the Affordable Care Act, “death panels” would be making life and death decisions for their patients? The fact is that at least in hospitals, these panels have existed since the 1970s, in the form of ethics committees. I must say after researching these committees, I’m even more confused and ambivalent about their roles and decisions.
Listening to talk radio in my car, I learned about this issue and how it became a hot topic in Texas. One of the most publicized cases was the case of David Chris Dunn, 46 years old and a former deputy sheriff for Harris County, Texas. He was transferred to Houston Methodist on October 12, 2015. He had a mass on his pancreas which affected his other organs and was in renal failure. The family was told he would die that night, but he didn’t. Over time the medical team met to discuss Dunn’s condition; he wasn’t improving.
Greetings, fellow Ricochetti! Recent posts and comments by several of you dealing with responses to physical/psychological/relational challenges and losses (one’s own, or another’s) brought to mind a couple learning experiences during my last training-placement prior to certification and employment as a hospital chaplain. Interestingly enough, these also involve a little green book, mid-1960s explorations in ethics, and C.S. Lewis as a lodestar oriented toward balance and common sense. Let me set the scene a bit…
In the late 1980s-early 1990s, complex outcomes for severely neurologically-injured individuals and innovations in life-support technology highlighted the need for multidisciplinary assistance in making healthcare decisions involving patients [as able], family members, and medical/ancilary support staff. Enter the entity known as the hospital ethics committee. Part of my learning as a chaplain-intern during those years included familiarity with the setup and procedures concerning the ethics committee. As a trainee, I never sat in on meetings, but was expected to be familiar with the hospital’s Handbook (similar to this one) and to know how to recognize when referrals might be needed.
Metachromatic leukodystrophy (MLD) is Alzheimer’s on speed. Children born with the most common form of the disease will die by age five, due to atrophy of brain tissue. The incidence in the general population is estimated to be 1 in 40,000 to 160,000 births.
Unlike Alzheimer’s, MLD has a known genetic cause. It has an autosomal recessive inheritance pattern, which means a child must inherit a defective, recessive gene from each of two carrier parents to be symptomatic. That suggests the frequency of carriers in the population is 1 in 200 to 1 in 400. But for couples who are both carriers, the odds of a child with MLD are 1 in 4.
Last week, a panel commissioned by the FDA gave a qualified endorsement for research into mitochondrial DNA replacement therapy in humans, though such research is prohibited during this fiscal year. This follows a similar endorsement in the United Kingdom last year.
Mitochondrial DNA is a distinct form of DNA with a few dozen genes that exist outside of each of our cell’s nuclei and whose function overwhelmingly concerns each cell’s metabolism. It’s so physically and functionally separate from the rest of our genome that its ancestors are believed to have been a kind of bacteria that entered into a symbiotic relationship with archeal cells, creating eukaryotes (basically, all multicellular life forms) hundreds of millions of years ago. Mitochondria are passed down exclusively from mother-to-child, as a sperm’s mitochondria are discarded upon fertilization.
Some years back, my father pulled me aside, Graduate-style and told me “Tom, I just want to plant an idea in your head: if you can ever invent something regarding dogs that’ll sell, we may never have to work again.”
Alas, for my family’s leisure and wealth, I have had no such insight. However, a biotech company in South Korea skipped past novel designs in chew toys, food, harnesses, and frisbees, and went straight for cloning. Their first cloned puppy was produced in 2005, but the process took hundreds of attempts and the founder was subsequently embroiled in a massive scandal involving his failed attempts to clone a human. In addition to publishing results that were outright fabrications (or close enough), he used secret government funding to purchase egg donations from his staff; he was stripped of his license, resigned his university post, and was given a two-year suspended prison sentence.
Since the first discovery that our physical traits are determined by a four-letter DNA code, and since our first attempts to manipulate that code, the idea of genetically-designed humans has been a staple in the science fiction realm. But among biomedical researchers, the notion of engineering DNA in actual humans remained strictly hypothetical: while all agreed it was theoretically possible, the methods available were too cumbersome, inefficient, and limited to too few species (such as mice) to imagine a realistic path forward.
My wife and I attended an event at the Discovery Institute in downtown Seattle a few hours ago. It was a very interesting talk, titled “How Science and Faith Can Serve Human Dignity.” Richard Doerflinger is the Associate Director of the Secretariat of Pro-Life Activities, United States Conference of Catholic Bishops. He spoke on stem […]
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