Going where no man should go

In a recent article titled “Extreme Science” (August, 2011), Wired magazine broaches a topic that few mainstream publications would be willing to touch.  What could be accomplished if scientists were prepared to set aside the “moral compass” that guides them (assuming there is one)?  Imagine the advances waiting to be made.  As Wired observes, in the real world (as opposed to the sci-fi world), “Most scientists will assure you that ethical rules never hinder good research – that there’s always a virtuous path to testing any important hypothesis.  But ask them in private… and they’ll confess that the dark side does have its appeal.”  http://www.wired.com/magazine/2011/07/ff_swr/

For example, scientists could separate sets of twins at birth in order to control and monitor their individual environments right from the start.  The gain from such an experiment is a possible solution to the nature vs. nurture dilemma.  Think about a twin study in which both individuals are eventually identified as gay, regardless of their distinct upbringing.  This could offer proof that homosexuality is all nature and not nurture.  In another example, Wired considers the possibility of “womb swapping,” i.e., switching “the embryos of obese women with those of thin women.”  Again, the experiment would determine whether environment or genetic factors determine an individual’s weight.  Then there is an experiment right out of a science fiction movie, one that cross-breeds a human with a chimpanzee.  Wired reports that the technique would be “frighteningly easy” and it would teach us much about human development.

But what actually prevents unethical research from happening?  It could be argued that these experiments are blatant violations of individual autonomy.  But the fact of the matter is that human autonomy is already disregarded with other procedures (e.g., human embryonic stem cell research, abortion, etc.).  In other words, what is the essential moral difference between destroying an early embryo in lieu of subjecting it to controlled research?  One may even maintain that the twins, separated at birth, are at least alive as opposed to embryos that are destroyed.

Then again, one could argue that the main difference is that twins will eventually come to understand their situation and realize that their autonomy has been violated.  On the other hand, destroyed embryos will never know their fate.  Fair enough.  But if morality is governed by utilitarian concerns, as it already is, it would seem that the value gained by subjecting embryos to questionable research outweighs their future concern for autonomy.  And if “awareness of one’s autonomy” is the key moral criterion, then research could be extended to any human lacking awareness (e.g., newborns, coma patients, etc.).

In short, humans have the rational capacity to consider all options to achieve an objective.  Humans have also demonstrated a natural tendency to push the moral envelope, to give priority to what can be done over what should be done.  Time will tell whether experiments which are now considered unethical will one day be the norm.

The Tragedy of Bioethics

At last week’s CBHD conference, a few of us were treated to a unique “Drinking-from-a-firehose” experience.  Jerome Wernow gave a talk with the eyesplitting title, “Bioethics:  Facing a Philosophical Theology of Tragedy and Mystery.”  Intrigued at the title in the conference brochure, but having no idea at all what it might refer to, I slid into a seat in the classroom where Dr. Wernow was to speak, prepared to be befuddled.  Instead, in the space of about about twenty minutes, those of us in the room were given an alluring glimpse into a poignantly beautiful picture for doing bioethics that alters what I see when I look at a patient.

I will attempt to present gleanings from the rich feast that was Dr. Wernow’s talk.  The early 20th Century Russian philosopher Nicloas Berdyaev wrote,  “There can be no moral life without freedom in evil, and this renders moral life a tragedy and makes ethics a philosophy of tragedy.”  As anybody who has witnessed the anguish of those who seek an ethics consult can attest, as anybody haunted by the dark questions our modern technology raises would agree, in bioethics all decisions are fraught with tragedy;  ethics consultants are actors in one-act medical dramas that are tragedies.  And tragedy is neither lessened nor assuaged when good and evil alone are used in bioethics’ calculus.  Our knowledge of good and evil is damaged, the product of a lie (“your eyes shall be opened, and ye shall be as gods, knowing good and evil“); it was in the very act of grasping for the tree of that knowledge that we were banished from the tree of life.  When we approach people whose stories have taken a catastrophic turn and we wield only the calculus of good and evil, our bioethics is left lifeless, empty, and tragic.  According to Wernow, to address tragedy we must turn to mystery, to “Mystery-revealed:” Christ, in whom is Life.  The question we ask as Christians doing bioethics is not just, “What is good?” but “How do I bring eternal life into this tragedy?  How do I bring the mystery of Life into the abyss?”

There was an amazed silence in the little classroom when Dr. Wernow finished.  Unfortunately, that is all I can leave the reader with.  I am not even sure that in my pathetic summary I presented Dr. Wernow’s vision remotely accurately;  his ideas poured out quickly and passionately, I could take only skeleton notes, and he has not as yet published an article or book that sets out the implications of the “Philosophical Theology of Tragedy and Mystery.”  But I sure love his vision of bioethics-as-drama instead of as sterile philosophical specimen;  and I can embrace the quest to bring the Mystery of Life into tragedy as a robustly and profoundly Christian way to engage and immerse myself in the tragedies of a fallen world.

 

Ethics Ruminations from the Front, #1, Carolyn

John Kilner is one of my heroes—brilliant, erudite, engaging, willing to take on today’s ethical challenges. He also was my mentor while doing graduate study. I owe him. So, when he asked if I would consider working on a CBHD ethics blog, I didn’t hesitate—very long anyway—to agree.

I am a neurologist, active in a busy clinical practice. Additionally, I chair a hospital ethics program. My third job is as a group practice medical director supervising approximately 70 doctors in their work. My parents were missionaries. I am happily married and we have three of the world’s most beautiful, intelligent, grown children. I hope to reflect on life from these perspectives.

Carolyn

Carolyn was a dynamic, energetic, intelligent woman who ran libraries, administered programs, taught college students, and in a good way was always a force with which to be reckoned. She retired in her late sixties, still near the top of her game.

These days, at age 84, she lives in a nursing home, is doubly incontinent, wheelchair bound and often confused. She misses social nuances, and usually does not know the correct day. She doesn’t ask for assistance, she barks out orders. She is nearly deaf, and says embarrassing things to her family members during quiet moments at social functions. Her goal each morning is to make sure that someone lays out her clothes for the day. Not knowing what she will wear on wakening weighs heavily on her, but this burden is relieved by seeing the pants, T-shirt, (she no longer wears a bra), shirt and sweater (she’s always cold), on her closet door.

She has a Kleenex and Vaseline lip balm obsession, and can’t be without either of these. She cannot carry on a conversation.

What a tragedy, some would say. She will die without dignity, having lost her intellectual faculties, control of her bodily functions, her sense of humor, and her social skills. Isn’t her continued existence a waste? We could use Carolyn as a poster child for why we should allow mercy killing, some might say. She is using up financial resources and her loved ones’ limited time and energy. She is directly helping no one, and each of her days is just like the last.

Her son notes that as deaf as she is, she never wants to miss church. She has lost her singing voice, but she hums or softly mouths lyrics to the hymns. She grouses and commands, but she often eventually says thank you. She doesn’t read scripture anymore, but she completes verses aloud that others start. Whenever she sees him, the first question she asks is about his wife and her health.

He relates that his daily visits with his mother remind him that it’s not about him and that God uses hard times to grow our patience and character. He remembers the untold hours of teaching, care and prayer she poured into his life, and realizes that he could never repay this debt. He has come to realize that God wants his children to grow more and more into God’s likeness, not have easy, fun lives. He reflects that his mother may be helping him grow closer to God now than she ever did when he was a child, a young adult, or even a middle-aged man. The son is in no hurry to see Mom go home to be with Christ. He has come to see that God’s timing is best, and that God doesn’t abuse his children. More than ever, he is learning that God is all-wise, all-powerful, and all-loving.

I am Carolyn’s son.