You probably know that my first career was in nursing. Much of my nursing experience was in pediatric critical care at major university hospitals where we saw the sickest of the sick and the rarest of the rare diseases. Rare diseases, especially in pediatrics, are even scarcer since many of these children never live to adulthood. I’ll never forget the first time I treated an infant with Prune Belly Syndrome, for example, which is a condition you might not want to look up.
Rare diseases are also called “orphan diseases.” An orphan disease is one that, because it is rare, research and therapy development are underfunded. The argument is: since we have so few dollars to spread around, shouldn’t we invest them in diseases that affect the most people? This is of little comfort to those struggling every day with a rare disease.
I found one website with the tagline, “there is no disease so rare that it does not deserve attention.” This is so true. Every disease deserves attention, every life matters, everyone counts.
What does this have to do with the CBC? I often lament that our work in raising awareness about the ethics of biotechnology is like an “orphan cause.” I’ve had people tell me that the CBC should be fighting causes that impact more people, and since, in their view, few women are really harmed by egg donation or surrogacy and few children really are unhappy with their birth stories, we should be working on issues that seem to them to be more pressing.
On many occasions I am told that the women who make decisions to sell their eggs or rent their wombs are foolish and stupid, so why waste our time helping them? When we broke the news of the two surrogate women pregnant with triplets who were being told they need to abort one of the babies, our phones and emails went crazy with people wanting to adopt the babies—but comparatively very, very few offered help to either of the women.
How long will our issues at the CBC remain orphaned or rare? I don’t know, but I do know that, as our executive director Matthew Eppinette reminds me, there is an element of the frog in the water that is slowly being raised to a boil when it comes to these issues—which is a point that we make over and over again. Most of the general public is simply not paying attention. Most people don’t see the urgency of these issues pressing down on us. Most people are busy attending to other good and important causes.
We, however, know that our issues are just the tip of the iceberg. One day, very soon, designer babies will become a reality—and may eventually come to be normalized and mainstreamed—if we don’t fight it now. Gene editing, not simply to rid ourselves of dreaded disease but to (attempt to) improve upon the human race, will become a given if we don’t fight it now. Doctors abandoning their Hippocratic tradition for the “new medicine” may happen, but we will continue to beat the drum that doctors have a covenantal, fiduciary responsibility to do no harm to their patients.
Perhaps, for now, cloning and embryo research, assisted reproductive technologies and immortality through nanotechnologies, robotics and artificial intelligence are rare and orphan issues. Soon that will not be the case.
While we remain underfunded for the work that is before us, there is no biotech issue that does not deserve attention. And with your support, we will do what we can to continue to raise these issues and fight against these efforts before they become (even more) normalized.
These issues deserve our attention because every life matters and everyone counts.
For a human dignity and a truly human future,
P.S. Your support is vitally important to our work. Please give today. Thank you.
- Jennifer Lahl, MA, BSN, RN, is founder and president of The Center for Bioethics and Culture Network. Lahl couples her 25 years of experience as a pediatric critical care nurse, a hospital administrator, and a senior-level nursing manager with a deep passion to speak for those who have no voice. Lahl’s writings have appeared in various publications including Cambridge University Press, the San Francisco Chronicle, the Dallas Morning News, and the American Journal of Bioethics. As a field expert, she is routinely interviewed on radio and television including ABC, CBS, PBS, and NPR. She is also called upon to speak alongside lawmakers and members of the scientific community, even being invited to speak to members of the European Parliament in Brussels to address issues of egg trafficking; she has three times addressed the United Nations during the Commission on the Status of Women on egg and womb trafficking.