A literary look at bioethics with Henrietta Lacks, Ivan Ilyich, Nurse Ratched and more...
What if I were grown only so that my organs could be harvested, and I had to care for others whose organs are being taken, too, while I wait for my own death? What if doctors cut off a piece of the tumor that killed me and grew it in a lab for the next sixty years? What if scientists discovered a gene that would ensure my happiness no matter what life throws at me?
In the spirit of summer, and especially summer reading, we asked some of our favorite well-read writers to look at bioethics through the lens of literature for the July-August issue of the Hastings Center Report. The questions above are only some of those tackled in the seven novels and one true story that is stranger than fiction that they recommend. The earliest was first published in 1858; the most recent came out this year.
In "A Better Life Through Science?" John D. Lantos writes about The Immortal Life of Henrietta Lacks, a nonfiction account by Rebecca Skloot, and the novel Generosity: An Enhancement by Richard Powers. Both are about unassuming innocents who fall into the clutches of biomedical researchers, weaving together stories about deprivation and poverty with stories about science as the ultimate redemption of our age. And in the end, both struggle with an updated version of an old question: How do we balance our inherent individuality with our ineradicable commonality?
In "Biopower and the Liberationist Romance," Bruce Jennings examines how biotechnology and the biopower it engenders can objectify and erode the self, as demonstrated in Ken Kesey's One Flew Over the Cuckoo's Nest and Kazuo Ighisiguro's Never Let Me Go. Cuckoo's Nest "calls us to rethink conventional assumptions about normalcy, mental illness, freedom, therapy, and the manifestation of power in institutional culture," he writes. Never Let Me Go is set in a future of extensive organ procurement and transplantation made possible by human cloning, and examines the "exercise of biopower in the face of aging bodies and failing organs."
The classic beach-read books of Jodi Picoult are the focus of "Middlebrow Medical Ethics," by Martha Montello. While it's not hard to find negative literary reviews about Picoult's bestsellers, Montello notes that her plots, "plucked right from current headlines," tackle bread-and-butter bioethics issues: transplantation, stem cell research, genetic diseases, and euthanasia. While Picoult "stops short of truly wrestling with the angel," her novels take on philosophical questions about serious bioethics issues and moral choices, Montello writes.
In "Difficult Doctors and Rational Fears," Nancy Berlinger argues that The Death of Ivan Ilyich, Tolstoy's novella about a judge who is blindsided by mortality, belongs on the medical ethics syllabus as an aid for ethicists to develop their personal capacity for empathy with those who suffer. And though it might be too long for a syllabus, according to Berlinger, Anthrony Trollope's Doctor Thorne, a portrait of a Victorian era physician that tracks the origins of contemporary medical practice, might be just fine poolside.
Berlinger concludes with another point, though-that spending too long justifying a good story on its "issues" takes some of the pleasure out of it. There's nothing like the feeling you get when you crack open a much-anticipated book and turn to page one. Happy summer reading.
First U.S. trial uses non-viral CRISPR to correct sickle cell mutation