On June 26, 2000, the completion of Human Genome Project was celebrated with great fanfare. Key scientists joined President Clinton in pronouncing that the completion of this project is a starting point for even greater discoveries. We have been told, and rightly so, that this discovery will speed the understanding of how genetics influences disease development and will help scientists identify disease-causing genes and the discovery of new treatments. If we believe what we read in the newspapers, we might think that genetics has all the answers to our ailments, disabilities, and suffering. If we believe what we hear on the news, we may hope for the day to come soon when there won’t be any sickness, suffering, or disability.
This hope is false because not every sickness, suffering, and disability is genetic. There are genetic disorders and there are non-genetic disorders. Non-genetic disorders are those that we may acquire after we have been born, such as catching the common cold, getting a bacterial infection, or catching some infectious disease. Genetic disorders, on the other hand, are inherited from our parents.
One does not have to be an expert in biology to know that genes are passed from generation to generation, from parents to their offspring. They are responsible for making us who we are and what we look like. Genetic disorders result from any flaw in a gene that can cause abnormalities and genetic disorders.
What we may not understand is that genes by themselves may or may not cause the problem. There are genetic disorders that require a single gene from one parent to cause a disease, called dominant disorders. There are some disorders for which one has to inherit a flawed gene from both parents, called recessive disorders. Other disorders require a flawed gene and multiple other factors to be predisposed to certain illnesses.
Completion of the Human Genome Project brings hope to those who are suffering from genetic disorders and an immense challenge to the scientists who are working with the application of the Human Genome results. While some are rejoicing in the news of completion of the Human Genome Project, others are very concerned about ethical implications such as:
How does society view individuals with genetic abnormalities or disorders?
Will persons with genetic abnormalities or disorders be productive members of society or will society consider them to be burdens?
Who defines normality and by whose norm?
These questions are worth raising by everyone and particularly by the faith community.
The knowledge of genetics and the proliferation of genetic technologies can be looked at both as a promise as well as a curse. No one seems to have great difficulty in approving the testing for and diagnoses of diseases that are very serious. The problem arises when certain genes associated with disabilities are labeled as abnormal genes. Individuals who are deaf do not consider themselves abnormal. They are able to communicate and “hear” using sign language and lip reading. You may be a wheelchair user, but you still can be productive.
What Is Normal?
The questions then raised are: What is normal? Who defines normality? Should a fetus with genetic deafness be allowed to develop to full term? Deafness is not always genetic. How about individuals with non-genetic deafness who become deaf either by injury to the ear or as a result of exposure to some chemical or physical agent? Such accidents cannot be predicted by any test. Genetic testing for deafness, and then the subsequent termination of a pregnancy if positive, will not eliminate all deaf individuals from our society. We must consider these ethical issues when we evaluate genetic technologies.
Similar kinds of arguments can be made for disabilities (different abilities) such as blindness or dwarfism (little people). This reminds me of a genetic counseling session when a dwarf couple came for genetic counseling and requested prenatal diagnosis. They knew their condition was genetic. They learned in the session that their unborn child could be a little person like them or could be of normal height. The couple thought their height to be normal. They wanted a child similar to themselves. Termination of the pregnancy due to a potentially “normal” height child was not a problem for them. Who defines then what is normal? These and other questions very often challenge genetic counselors.
Other types of disabilities are caused by severe injury to the spinal cord, problems for which no cures or treatments exist. We have heard great promises like if stem cell research was allowed on the embryonic stem cell, that research could lead to the cure and treatment for a variety of ailments including Alzheimer’s, Parkinson’s, and ALS (Lou Gehrig’s disease), as well as spinal cord injury. There needs to be ongoing dialogue on the related ethical issues.
The United Church of Christ, during its Twenty-third General Synod (July 2001), passed a resolution supporting federal funding for embryonic stem cell research on those cells that will not be used for implantation by fertility clinics.
Unfortunately, President Bush’s recent decision allows only limited research on already existing cell lines. We do not know whether these existing cell lines will meet the strict criteria of those used in this research.
The promises of genetics are greater for single gene disorders, where their mere presence is the cause of the problem. Genetic screening, testing, prenatal diagnosis, and gene therapy may provide a ray of hope but at what cost? These ethical questions need to be raised and discussed by the religious community. They are questions that must continue to be part of an ongoing conversation with the UCCDM.
The author, Olivia Masih White, Ph.D., is professor of genetics at the University of North Texas, Denton, Texas, and a member of Central Congregational UCC, Dallas.
From UCC DM Newsletter Archive
