You may be aware of the Clinic for Special Children in Strasburg, Pennsylvania, which treats children suffering from rare genetic illnesses, primarily within the Amish and Mennonite populations.
The clinic was founded by Dr. Holmes Morton, a West Virginia native, in 1989. Each year the Lancaster community puts on an auction to benefit the clinic, which operates with much support from the Plain contingent. Certain highly rare diseases can be found in Amish and Mennonite communities and these are the ones the Clinic specializes in treating. The field of genomics has created numerous moral and ethical questions, but Morton and his partners show the life-affirming work that can be done using knowledge of the gene.
A recent story at nature.com opens with the plight of the Hoover family, whose children have suffered from the genetic malady SCID, a blanket term for a range of disorders attacking the immune system. Though the Hoovers’ son Raylon died because of the illness, their newborn daughter Kendra was saved by swift treatment facilitated by the clinic.
The photos of the Hoover family on this page were taken by Bill Coleman. Bill’s son Noah kindly shared on their connection: “Bill and Dr. Morton have known each other for years and Bill dedicated his last book to Dr. Morton’s clinic. Dr. Morton specifically requested that Bill do the shoot (very nice of him). We just met the Hoovers, who are a Mennonite family, last month.” These images emanate a joy which I’m sure this family must be feeling that Kendra is still with them. You can read more about the Hoovers and the clinic at this article at nature.com.
For me the field of genomics has always raised moral challenges. As a Catholic I’ll admit I’m not at all comfortable with the idea that genetic data could be used in prenatal screening that might lead to an abortion decision, for example. There are other issues such as workplace discrimination based on genetic predispositions or the ethical problems over “designer babies”. Genomics demonstrates the difficult questions that can arise as scientific possibilities expand with the furthering of human knowledge. However the treatment work that Morton and others do seems simply a great good for suffering families.