AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY
A World Without Disabilities?
BY H. BARRY WALDMAN, DDS, MPH, PHD, RICK RADER, MD, DHL (HON) AND STEVEN P. PERLMAN, DDS, MSCD, DHL (HON)
"Some genomic researchers believe that within the next few years science will have advanced to the point in which many of the world's congenital disorders can be eliminated (sic) and many other diseases can be treated at the cellular level. These advancements mean that we may one day arrive at the point in which congenital disorders become a thing of the past. As a society, should we seek a world without disability? Genome research means that parents may ultimately choose traits in their children in the future." 1
THE SETTING
• Not all disabilities are congenital. Disability encompasses a wide range of conditions, inherited or 'acquired' during a lifetime and some are far worse than others.
• A cochlear implant is a surgically implanted neuroprosthetic device to provide a person with moderate to profound sensorineural hearing loss (i.e. when sensory cells and/or nerves are damaged) resulting in a modified sense of sound. For some in the deaf community, cochlear implants are an affront to their culture, which as some view it, is a minority threatened by the hearing majority.2 In the deaf community, the art of communicating through sign language is part of their culture; however, if gene editing lowers the rate of people that are deaf, how will this culture manage to sustain itself in the future?
• With the emergence of new biotechnology such as the CRISPR Cas 9, the possibility of preventing and curing some disabilities is now on the horizon. CRISPR Cas 9 is a genome editing tool that will be able to correct mutations that often lead to cystic fibrosis and sickle cell anemia. The biotechnology will also be able to edit HIV out of a person's genome or lower the risk of cancer and heart disease that are more prevalent today.
CONCERNS
There is the potential of a "cure" vs "prevention" possibilities for individuals with disabilities in discussing the manipulation of human genes for future generations of any type of disabilities. However, while research efforts strive to "cure disability", there is continued indifference to the social and cultural factors that make not walking, hearing, seeing, etc. a problem. Advocates for the "curing" ideal will argue that we cannot assume that society is obliged to undertake changing the world for people with disabilities so as to render them "not disabled" in all cases. Thus, impairments can be avoided and eliminated through abortion, sterilization, and infanticide, or cured through general body and gene line therapy. This view underestimates the prevalence of disablement, which is increasing, especially in wealthier, developed societies due to a combination of an aging population and medical interventions which prolong life. 4
• Discussions surrounding genome research ethics has the potential for the creation of "designer babies". We may arrive at the point in which parents are choosing certain traits that they want in a child, such as blonde hair, dark eyes, to be tall etc. One potential problem around picking and choosing different traits for your child is that it could lead to a further class divide. Children from wealthy families that already have better educational opportunities and access to health services, could be given a genetic advantage above their peers. "Those that cannot afford further genetic enhancement become a disabled class; a class of lower intelligence, physically weaker, less desirable through any number of naturally occurring genetic traits."1
• An example of the consequences of extremes in family planning: China's population started outpacing available resources long before the introduction of the one-child policy. Following the establishment of the People's Republic of China in 1949, the Chinese government began preaching the importance of family planning and encouraging the use of birth control as a means of managing the population. The one-child policy was implemented nationwide in 1980 in order to limit most families to one child each. The "importance" of a male child for economic and cultural factors produced on over-balance of the male population with significance consequences as the youngsters reached ages for marriage and their family planning. 5
• In addition, there are the questions related to eugenics; the set of beliefs and practices that aim to improve the genetic quality of a human population, historically by excluding people and groups judged to be inferior and promoting those judged to be superior. (Developed largely by Francis Galton as a method of improving the human race; it fell into disfavor only after the perversion of its doctrines by the Nazis.) 6
• With the advances in new technology, there have been limited discussions that include the voices of people with disabilities. The issue is not with the technology, but rather the "curing" concept that ignores the key group of people who will be affected and how they are being presented as less than normal. People with disabilities have constantly been excluded from the rest of society, and with the new emergence of gene editing, it will further push them into exclusion.7
Throughout history, people with disabilities have unfortunately been treated as objects of misfortune, pity and a burden to society. The misconception has permeated the minds of society to the point where they automatically associate disability with tragedy. This ultimately leads to society's mission in trying to find a "cure," hence the development of gene editing, rather than accepting individuals with disabilities.
COMMUNICATION BREAKDOWN: With the advances in biotechnology such as the CRISPR Cas 9, there have been limited discussions that include the voices of people with disabilities.
ONE PERSON'S PERSPECTIVE
"I have achondroplasia, the most common form of dwarfism, which has affected my family for three generations. I'm also a woman and a mother – the people most likely to be affected by human genetic editing. I remember clearly when John Wasmuth discovered fibroblast growth factor receptor 3 in 1994. He was searching for the Down syndrome gene and found us. I remember my mother's horrified reaction when she heard the news. And I remember watching other adult little people react in fear while average-height parents cheered it as "progress"… It remains critical that we drive decisions about the future of disabled people and our health care. Many of us see our disabilities as a rich and diverse culture, many of us want to pass that culture down to our children through our genes, and many of us see no reason not to. We should have that right." (emphasis added) 8
THE AUTHORS' PERSPECTIVE
We have written hundreds of articles regarding the issues faced by individuals with disabilities. We have delivered untold number of lectures to students, presentations to politicians, examined and advised Special Olympic athletes, provided oral health care to children with disabilities and brought our efforts to reach populations throughout the world. It was only when we began reviewing the literature for this presentation that we recognized the intensity of the different views regarding the efforts to consider "A world without disabilities." And what are your views? •
ABOUT THE AUTHORS
H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor, Department of General Dentistry, Stony Brook University, NY. E-mail: h.waldman@stonybrook.edu. Rick Rader, MD, DHL (Hon) is the Director of the Morton J. Kent Habilitation Center, Orange Groove, Chattanooga, TN; Senior VP Public Policy, American Academy of Developmental Medicine and Dentistry; Adjunct Professor, Human Development, University of Tennessee-Chattanooga. He is Exceptional Parent Magazine's Editor in Chief. Steven P. Perlman, DDS, MScD, DHL (Hon) is the Global Clinical Director and founder, Special Olympics, Special Smiles; and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine.
References
1. Lowe S. A world without disability. Available from: greatbritishcommunity.org/a-world-without-disability Accessed September 7, 2020.
2. Cochlear implants Available from: en.wikipedia.org/wiki/Cochlear_implant#: ~:text=Much%20of%20the%20strongest%20objection%20to%20cochlear%20implants,is%20a%20mi nority%20threatened%20by%20the%20hearing%20majority. Accessed September 7, 2020.
3. Lin M. A world without disabilities? Available from: medium.com/fyw-ds/a-world-without-disabilities-6f2a6a389d01 Accessed September 7, 2020
4. Reindal SM. Disability, gene therapy and eugenics - a challenge to John Harris. Available from: jme.bmj.com/content/26/2/89.full Accessed September 8, 2020
5. Pletcher K. One child policy. Available from: britannica.com/topic/one-child-policy#:~:text=The%20one-child%20policy%20was%20a%20program%20in%20China,which% 20the%20government%20viewed%20as%20being%20too%20rapid. Accessed September 8, 2020.
6. Define eugenics. Available from: search.yahoo.com Accessed September 8., 2020.
7. Harris J. Is gene therapy a form of eugenics? Bioethics 1993; 7:178–87.
8. Cokley R. Please don't edit me out. Available from: washingtonpost.com/opinions/if-we-start-editing-genes-people-like-me-might-not-exist/2017/08/10/e9adf206-7d27-11e7-a669b400c5c7e1cc_story.html. Accessed September 8, 2020.
The American Academy of Developmental Medicine and Dentistry (AADMD) was organized in 2002 to provide a forum for healthcare professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities (ND/ID). The mission of the organization is to improve the quality and assure the parity of healthcare for individuals with neurodevelopmental disorders and intellectual disabilities throughout the lifespan.