I encourage you to keep reading because this may not be the blog you think it is.
Let’s begin with the premise that we are spiritual beings having a human experience. Made in the image and likeness of Divine Beingness, without exception, each of us can access a perspective that sees a like being in each other. By looking beyond our human vehicle to the essence of each of us, there we are, whole and one in spirit. The second part of our premise brings us back to our humanity and that human experience. If our sacred beingness arises from a Divine Source, our human expression seems to arise, to some extent, from our genes. Those DNA sequences determine eye color and hair, gender expression and a host of other characteristics.
In 1990 the human science community undertook an international project to map the entire sequence of human genes. What showed up where? I recall there was a fair amount of discussion of the ethics of what would happen to the information if we knew the genetics of each person. The project was completed in 2006. This year the Nobel prize in Chemistry goes to two women (a first), Emmanuelle Charpentier and Jennifer Douda for their CRISPR technology. Simply put, CRISPR is a way to edit and alter genes. The technology is being used in several trials to “fix” broken genes that cause lethal conditions in humans, such as sickle cell disease and SMA (Spinal Muscular Atrophy). I’ll put a link to an article at the end if you’d like more scientific information.
If healing is a return to wholeness and we’ve discovered a way to fix broken genes and make them whole, what could be the problem? How could anyone be against healing? Let me be clear, Radical Wholeness is not against healing. From Buddhists to Christians to Pagans, most of us would like to eliminate pain and suffering. Even if you consider it a part of our human experience, it is the part we would most like to skip. One of the most frequent healing desires is to reduce or eliminate pain and suffering. Healing keeps bringing us back to what does wholeness look like?
No one tends to think wholeness looks like genetic disability unless you are a person who has lived into a disability identity. And not everyone with a genetic disability adopts a positive disability identity. Many people spend their whole lives wishing to be something different; something without the inconvenience and limitation of their disability; something without the physical, psychological and emotional pain; something with more ability and more social acceptance. So, what do we do with the emerging technology to allow these people to heal and return to their vision of wholeness? Who decides what is whole and when is the decision made and who decides how to use the technology? These ethical issues not being talked about put us on the slippery slope of a concept that is not new but takes on new life in this brave new world: Eugenics.
Eugenics was popular in the United States in the 1900’s. If you aren’t familiar with the word, here is an online definition: “the study of how to arrange reproduction within a human population to increase the occurrence of heritable characteristics regarded as desirable. Developed largely by Sir Francis Galton as a method of improving the human race, eugenics was increasingly discredited as unscientific and racially biased during the 20th century, especially after the adoption of its doctrines by the Nazis in order to justify their treatment of Jews, disabled people, and other minority groups.” Now the Nazis got in trouble because their manipulation of reproduction was to simply eliminate people. In the United States, the more benign version of eugenics was to involuntarily sterilize individuals with undesirable characteristics. In 1927, the Supreme Court sanctioned involuntary sterilization with a majority decision (written by Oliver Wendell Holmes) in Buck vs Bell that reads in part, “It is better for the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.” Lest you think this is ancient history, we might note that the last legally forced sterilization occurred in 1981 in Oregon. Enforcement became state by state with a cascade of repeals in more recent years but the Supreme Court decision has never been overtly overturned. Let that sink in.
Who makes the decisions in Eugenics? It is NOT the individual! It is parents, medical people and social bias who establish who is fit to reproduce. So let’s apply this movement to the CRISPR technology. Many genetic conditions have established patterns of inheritance going forward but first appear in families through an unpredictable occurrence of “spontaneous mutation” of the gene. Parents want the best for their children so most of the decisions will fall to individuals who have no experience of the difference being eliminated or genetically engineered out. In communities with a disability identity, like the deaf or dwarf community, we could also feasibly see disabled parents denied the ability to refuse genetic engineering to heal their child into the wholeness viewed by others. The views of disabled parents are often discounted or ignored. Since disability is so obviously not wholeness in society’s general view, let’s consider LGBTQ. Let’s assume science discovers genetic components to gender identity and sexual orientation, which can then be genetically engineered away. Would a parent choose to have their child LGBTQ or would they choose to heal the child? Of course, we still have the issue of race. Nazis gave Eugenics a bad name with their extreme behavior yet one of the issues facing our nation today remains the belief (by maybe more than we estimate) in a master race. What if a single master race was a physical possibility? Would we eliminate the differences in our human expression if we could? Would that really be healing?
This seems like science fiction. I am guessing most of you think I have just gone too far. I really intend this to be a cautionary note to generate conversation. My concern is being too far down the slippery slope before we discern the need to make a course correction that is then out of reach.
What are the consequences if we shift our focus in the disability community from accommodation and acceptance to elimination of genetic conditions? With increasing economic disparity, who has access to the technology and what happens to those who do not have access? What happens to those with acquired or non-genetic disabilities? Can we trust our social and governmental structures to be able to engage in ethical discussions and decision making? Our history is not great on that. Look at discussions and criteria right now being used in algorithms for distribution of limited ventilators if the need arises. Look at the somewhat cavalier attitude from our nation’s leader about the ravages of COVID, based on the highest incidence being elderly, minorities and those with disabilities. Many continue to consider these acceptable losses in the interest of the economy.
I know this is long and I appreciate those who read to the end. For me, spirituality is not useful if it is not applied to daily living. With power comes responsibility. I am challenged to contemplate both my access to a spiritual wholeness and how to use that access for the highest and best. If I see myself as part of a greater whole, what is the highest for our wholeness? If humanity was designed for diversity, as indicated by our genetics, is it our destiny to eliminate that diversity, substituting human will for divine design? Or was diversity manifesting a human flaw and not divine design? Is Oneness sameness? What exactly is healing and what does spiritual wholeness look like in human expression? I invite you to examine your own beliefs and stay aware of where humanity is heading.
Image description: image of blue microscopic dna strands on black background