Designing Our Descendants: The Promises and Perils of Genetic Modifications

Appendix B. AAAS Report on IGM: Major Findings, Concerns, and Recommendations

a p p e n d i x b AAAS Report on IGM Major Findings, Concerns, and Recommendations A majority of the project’s working group members endorses the following findings, concerns, and recommendations. Findings • The working group concluded that IGM cannot presently be carried out safely and responsibly on humans. Current methods for somatic gene transfer are inefficient and unreliable because they involve addition of DNA to cells rather than correcting or replacing a mutated gene with a normal one. They are inappropriate for human germ-line therapy because they cannot be shown to be safe and effective. A requirement for IGM, therefore, is the development of reliable gene correction or replacement techniques. • With current gene addition technologies, iatrogenic genetic damage could occur as a result of the unintended germ-line side effects of somatic cell therapy. These problems seem at least as great as the harmful genetic damage that might arise from intentional germ-line transfers . Therefore, attention must also be given to the accompanying side effects of somatic cell therapies already in use or planned. • The working group identified few scenarios where there was no alternative to IGM for couples to minimize the prospect that their offspring will have a specific genetic disorder. The further development of somatic cell gene transfer, moreover, will offer more options for treating one’s offspring. • Guided by the theologians—mainline Protestant, Catholic, and Jewish traditions—and ethicists on the working group, the group concluded that religious and ethical evaluations of IGM will depend on the nature of the technology, its impact on human nature, the level of safety and efficacy, and whether IGM is used for therapeutic or en- hancement purposes. Ethical considerations related to the social effects of IGM, particularly its implications for social justice, will play a major role in shaping the attitudes of religious communities. • To date, the private sector has played a prominent role in the funding of somatic cell genetic research, raising questions about the influence of commercial interests on the conduct of researchers and on the scope and direction of the research. Similar questions are likely to surface if IGM research and applications go forward. Concerns • The ability of IGM to shape the genetic inheritance of future generations raises major ethical concerns. IGM might change attitudes toward the human person, the nature of human reproduction, and parent -child relationships. IGM could exacerbate prejudice against persons with disabilities. The introduction of IGM in a society with differential access to health care would pose significant justice issues and could introduce new, or magnify existing, inequalities. • IGM for enhancement purposes is particularly problematic. Enhancement applications designed to produce improvements in human form or function could widen the gap between the “haves” and the “havenots ” to an unprecedented extent. Efforts to improve the inherited genome of persons might commodify human reproduction and foster attempts to have “perfect” children by “correcting” their genomes. Some types of enhancement applications might lead to the imposition of harmful conceptions of normality. The dilemma is that IGM techniques developed for therapeutic purposes are likely to be suitable for enhancement applications as well. Thus, going forward with IGM to treat disease or disability will make it difficult to avoid use of such interventions for enhancement purposes even when this use is considered ethically unacceptable. Recommendations • Even in advance of a decision about whether to proceed with IGM as traditionally understood as gene transfer in reproductive cells, a public body should be assigned responsibility to monitor and oversee re348 Appendix B search and developments in IGM, more broadly conceptualized as any technique aimed at modifying the genes that a person can transmit to his or her offspring. Some interventions that fall within the scope of the working group’s definition of IGM are already taking place without the oversight that we believe is necessary. • It is important to promote extensive public education and discussion to ascertain societal attitudes about proceeding with IGM and to develop a meaningful process for making decisions about the future of this technology. These efforts should be informed by an understanding of the relevant science, involve an extended discussion of the cultural , religious, and ethical concerns associated with IGM, and be as open and inclusive as possible. International consultation on these matters should also be encouraged. • If a societal decision is...