Gene therapy and sickle cell disease: Religious perspectives

December 13, 2001

Religious leaders, including prominent African American church leaders, comment on progress toward gene therapy for sickle cell disease, to be reported in "Correction of Sickle Cell Disease in Transgenic Mouse Models by Gene Therapy," by R. Pawliuk et al., in the 14 Decemeber 2001 issue of Science, which is EMBARGOED UNTIL 13-DECEMBER-2001 AT 14:00 ET US.

This release contains quotes from carefully selected, well-informed religious leaders. All quotes are free to use by journalists in any news medium. Contact information is provided and follow-up interviews are encouraged.

1. Rev. Dr. Peter J. Paris is the Elmer G. Homrighausen Professor of Christian Social Ethics at Princeton Theological Seminary, and Princeton University African American Studies Program (liaison) He is a past president of the American Academy of Religion and of the Society of Christian Ethics. 609-497-3796 or 609-497-4718.

"The millions of people who suffer from sickle cell disease are always happy to learn about research endeavors aimed at treating this genetic disorder. Thanks to the findings of genetic research on mice it is now conceivable that a possible therapy for this dreadful disease is on the horizon. Both sufferers and carriers delight in that prospect. "I vividly remember a young couple who discovered late in their courtship that they were both carriers of the sickle cell trait. They were forced to deal with the choice between not marrying or not having children. Both were tragic decisions for them to make. Similarly, and even more sadly, I recall a brilliant young teacher in Ghana who, at 23 years old, was taken to the hospital one night by his parents to be treated for what everyone assumed was malaria, the symptoms of which are similar to the traumas associated with sickle cell disease. Much to the shock of his family and friends, he died that night. In short, people with sickle cell disease in their families live lives that are constantly threatened by its painful recurring attacks. Both they and all concerned welcome continuing research aimed at discovering an effective gene therapy for millions whose lives are diminished by this disease. "Unfortunately, research monies have always been difficult to procure for a genetic disease that primarily affects peoples of African, Mediterranean, Indian, and Middle Eastern descent. Of course, it should be obvious that a discovery of an actual therapy still remains a future prospect. Hopefully, the necessary moral and financial resources for continued gene research will be made available for it to proceed with all deliberate speed."

2. Rev. Demetrios Demopulos (Ph.D. in genetics) is the parish priest of Holy Trinity Greek Orthodox Church and teaches at Holy Cross Greek Orthodox School of Theology, Brookline, MA. 978-342-1216 or 978-342-9015.

"An obvious application of the Human Genome Project is the treatment of genetic disorders through gene therapy. If a functional gene can be introduced into the appropriate cell type and that gene can be expressed in a normal manner, countless people could hope for relief from their genetic diseases. The report about to be published in Science seems to be an important first step in overcoming the technical obstacles to gene therapy. Using mouse models for sickle cell, the team has been able to introduce a functional globin gene into stem cells and express the gene so that the symptoms of sickle cell were eliminated. The red blood cells did not sickle, and the resulting cascade of problems was not present. "As a priest who ministers to an ethnic group in which globin-gene disorders are common, I find the results of these experiments heartening. This could be the first step in effectively treating a debilitating and sometimes fatal disease. As a geneticist, I am also encouraged that techniques have been found that allow incorporation and expression of such a large gene in target cells. I do, however, have reservations. I am especially concerned that the viral vector be proven safe before human trials are contemplated. A virus that is genetically engineered so that it can infect a cell, but not replicate, is a classic vector for introducing genes into target cells. I want to be certain, however, that the vector cannot interact with other viruses to create a recombinant that will not only replicate but also produce new diseases. I think that tests will need to be developed to ensure that other vital functions of the target cells are not interrupted so that the treatment of sickle cell does not cause another genetic disorder. I am confident, though, that these issues can be resolved and that some day the treatment of sickle-cell and other beta-globin disorders will be standard practice. As confident as I am, however, I realize that the application of this treatment to humans is a long way off and encourage the practice of patience as a spiritual discipline. "There are other technical considerations that do not require resolution because the proposed therapy is restricted to somatic cells. The modified control regions surrounding the introduced gene could cause catastrophic problems if they were recombined to another location in the genome and altered the regulation of other genes. This concern is minimized because the modified cell lineages will not be passed down to new generations. "Because the target of this gene therapy is somatic cells, I have few ethical concerns. Treating beta-globin disorders through somatic-cell gene therapy is consistent with an Orthodox Christian understanding of appropriate medical treatment. The patient would be relieved of pain and suffering resulting from this disorder and be able to strive toward God's purpose for humanity, union with Him. Gene therapy will become ethically unacceptable if it goes beyond treatment of disease and is directed instead at enhancing human performance or effecting cosmetic changes to meet some idealized human form. It also must not be used to modify the germ line since humans cannot know enough about themselves and their environment to be able to safely modify themselves and future generations.

3. Rev. Aaron J. Johnson, Pastor, Mt. Sinai Baptist Church, Fayetteville, NC; Board Member, Sickle Cell Disease Association of America; Board Chair, Operation Sickle Cell, Inc., Fayetteville. 910-483-8486.

"The recent revelation that a new gene therapy corrects sickle cell disease in mice, and may suggest future therapies to treat the genetic disease in humans is great news to those of us involved in the treatment and prevention of sickle cell anemia. This news also causes us to again focus on the various theological and religious perspectives of the moral and ethical questions, which arise from scientifically enhanced therapy with humans. "Most religious leaders agree that the aim of eliminating suffering coincides with the objectives of medicine. Additionally, much of Christian doctrine places emphasis on compassion and care of the sick. Western medicine's preventive approach to heath care and the understanding of disease suggest a fruitful working model for medicine and religion. It is clear that both religion and medicine permeates human culture. It is my hope that those who will form an ethical stance regarding this major breakthrough will do so with an understanding of how religion and medicine function within our culture. Biblical scriptures state that many will perish for the lack of knowledge. I hope that we are now armed with new information regarding sickle cell anemia. It is my prayer that it will make a difference."

Science and Religion Information Service

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