Published June 13, 2016
With the summer Olympics ending soon in Rio there has been a noticeable absence of almost one-third of the Russian team due to past doping violations. In fact, it has been announced that the entire Russian Paralympics team will be banned from the Paralympic games there in September. Also, on June 8 the International Tennis Federation announced that the former world No. 1 tennis player and 2012 Olympic silver medalist, Maria Sharapova, has been suspended from the sport for two years for her use of a performance enhancing drug.
Some of the world’s best super athletes aren’t satisfied with their incredible natural gifts. They believe that to be competitive, they have to enhance their physical strength and stamina so they can be even more super, but these efforts to enhance athletic performance with drugs is a clear violation of rules put in place to ensure a level playing field for all those involved in competitive sport.
But what about someone born with a physical malady that can be repaired through therapy – or one with a life-limiting disability or disease that can be treated by a medication that will allow them to hold a job or participate in peer activities, or perhaps even save or extend their life. Would we call this enhancement, or would we consider it treating their disease or disability?
Drawing distinctions between enhancement and therapy is a controversial topic, but perhaps no more than in the Down syndrome community where news of clinical trials and new developments to improve cognition are becoming more common. Some believe that these investigations are not therapeutic, but an unethical equivalent to what some athletes are doing to enhance their physical performance. Some would even go so far as to claim that using science to improve cognition is the equivalent of transhumanism, a movement that looks to science and technology to rise above human limitations and enhance the intellectual and physical capabilities of typical persons.
Had he not died of cancer in 1994, Jerome Lejeune would have turned 90 years old this year on June 13, 2016. Dr. Lejeune had a tremendous love and respect for those living with Down syndrome and other genetic intellectual disabilities. He was also committed to research into treatments that would improve their quality of life by improving their cognitive abilities, but he was no transhumanist.
Dr. Lejeune was, however, a humanist in the very best sense of the term. As a devout Christian, he knew that human dignity was a gift from God and inherent to the human person – not something earned by degree through accomplishment. He also understood that human freedom, individual conscience, and unencumbered rational inquiry are human gifts to be cherished, and that his patients’ extra chromosome limited their participation in these fulfilling human gifts. He wanted more for them, and he heard their voices and the voices of their parents asking for more too. He was determined to help them and believed that as a medical doctor he owed that assistance to his patients.
One’s perception of Down syndrome shapes their opinion of medical intervention as either therapy or enhancement. Therapy is oriented to restoration. It is intended to assist individuals in compensating for a disability. When children are born with Down syndrome they are usually placed in early intervention programs that provide physical, occupational, and speech therapy to help them maximize their potential.
Few, if any, in the Down syndrome community would reject these therapies, and most in the Down syndrome community accept medical research to improve the various co-existing medical conditions that are accompany Down syndrome. But for some a firm line is drawn when it comes to research to improve cognition. Some might say that to do so is to fall into the transhumanist trap of dissatisfaction with humanity, and in the case of Down syndrome a misplaced attempt to change what is a natural genetic occurrence.
Dr. Lejeune had a different understanding of the human person. As a man of faith and science, he knew that we are a unity of body, mind, and spirit. As a medical doctor he understood his obligation was to treat the whole person because one element can’t flourish if another is compromised. He knew that just as the bodies of those with Down syndrome experience various physical maladies because of their additional chromosome 21, they are also compromised in their ability to think, to remember, and to speak. Did his understanding of their limitations cause him to love or respect them less? Quite the contrary. He was their greatest advocate, friend, and protector.
Concerns with the development of treatments to improve cognition, memory, and speech were articulated well by Amy Julia Becker in a very thoughtful article that appeared recently at Vox.com. She wrote that she and her husband would hesitate to consider any intervention for their daughter because, “The brain seems integrally linked to the self, to the source of who we are”. She also quoted the bioethicists, Art Caplan who stated that “Cognition is linked to our sense of personal identity in a way that isn’t true about our freckles. … In Western society, mental states are definitive of who we are.” People living with Down syndrome are typically irresistibly charming, so for parents who love their children the thought of losing these qualities of self and personal identity are unwelcome.
So, the answer to the question of whether research to treat cognition, memory and speech for those living with Down syndrome is therapy or enhancement is a matter of perspective.
For those who consider Down syndrome a natural human variation rather than a chromosomal anomaly, and those who fear that drug therapies would result in changes to the personal identity of their child would consider this research an unnecessary enhancement. Many families don’t see their child’s quality of life limited by their disability. To them, Down syndrome is a condition with limitations, but one that compensates for those limitations by providing other unique possibilities. Of course, in the absence of the availability of therapeutic drug treatments it is impossible to know to what extent qualities of self and personal identity might change, if at all. Dr. Lejeune, and many living with Down syndrome today and their families, do regard Down syndrome as a genetic anomaly that restricts their quality of life and they long for treatments to become available to them.
Of course, there was also another side to Dr. Lejeune’s commitment to research. He knew that after his discovery of the genetic cause of Down syndrome, people would use his discovery to prenatally diagnose and abort these children. He saw medical research as a means to offer fearful families hope, and to save them from a horrible decision that still most often results in the abortion of their children. As he is so well known for saying… “The only way to save them is to ‘cure’ them”.
