Margarita Arnold Group #4 Gene Therapy Ethical Issues with Gene Therapy Gene therapy is a new and experimental

technique used to correct defective genes that cause diseases and genetic disorders. If gene therapy does become practical, the biggest impact would be on the treatment of diseases where the normal gene would only have to be inserted into one organ. There are two types of gene therapy: somatic cell which is done in adults, and do not include the sex cells. Gemline therapy is done through the embryo in unborn fetuses. Gene therapy treats the somatic cells of the body by replacing the defective genes, and does not affect the offspring. Gemline therapy affects the offspring of that certain individual and changes the genetic heritage. This changes the genetic pool of the entire human species. Technical issues are still being worked on in gene therapy, as new information emerges every day. There was an article called The Points to Consider published in 1984-85 which contains 110 questions about gene therapy for human patients. The questions cover topics on potential harms or benefits, fairness in selection of recipients, procedures to be followed, recipients privacy and confidentiality, as well as possible alternative methods in treatment of disorders. Prenatal intervention can also be done to prevent severe and irreversible damage to fetuses. Stanford Dermatalogy Center has started a gene transfer program (trial) specifically for Epidermolysis Bullosa (EB) which is a rare inherited blistering skin disease which affects all racial and ethnic groups. The risks listed in the program, which is on a pure voluntary basis are leukemia as well as death. One of my friends mothers runs a small private company out of Maryland called GeneDX. Gene DX specializes in genetic testing for rare hereditary diseases and test patients for neurological disorders, metabolic disorders, mutation, autism, cardiology, eye disorders, and prenatal

testing. Once they find the defective gene, they recommend an alternative for treatment since gene therapy is not available. Gene therapy may not be the solution now, but I can see gene therapy being a semi-solution in the future. There are always questions that are hard to answer with ethical issues such as: What is the normal, and what is a disability or disorder, and who decides? Are disabilities diseases, and do they need to be cured or prevented? Is somatic gene therapy less or more ethnical than gemline therapy? Who can have access to gene therapy and who pays for the cost?

Sources Lane, A. T. (Ed.). (2010, December 14). Stanford EB Recearch Updates. Retrieved from http://dermatology.stanford.edu/recearch/recearch.html U.S. Department of Energy Genome Program's Biological and Environmental Research Information System (BERIS). (August 24, 2011). Gene Therapy. In Human Genome Project Information. Retrieved 11/21/2011, from http://www.ornl.gov/sci/techresources/Human_Genome/medicine/genetherapy.shtml.