Susannah Baruch

Civilian and Military Genetics: Nondiscrimination Policy in a Post-GINA World

Evidence is emerging of a growing societal consensus about appropriate and inappropriate uses of genetic information. The Genetic Information Nondiscrimination Act of 2008 provides new legal protections to Americans by prohibiting the discriminatory use of genetic information by health insurers and employers. Additionally, the United States military recently created new policies for fair use of genetic information in the determination of benefits for servicemen and servicewomen leaving military service. Although critical issues remain, such as the potential for genetic information to be used to deny people other forms of insurance, and how the military will use genetic medicine overall, significant progress has been made.

Genetic testing of embryos: a critical need for data.

Preimplantation genetic diagnosis (PGD), the genetic testing of embryos developed through IVF is one of the fastest growing techniques in reproductive medicine and IVF. Some suggest that PGD will become part of every IVF cycle in the future. The growing popularity of PGD has highlighted the fact that there are no comprehensive data available about the use of PGD, its accuracy, or the health outcomes of babies born following PGD. For patients, practitioners, and policymakers alike, such information is critical. To address the gaps in knowledge, a working group of the leading experts in the development and practice of PGD and IVF has begun to design a database to collect information about PGD as practised in the United States.

Genetic Testing of Human Embryos

Today, there are some one million people for whom the journey toward personhood began when a fertility specialist, peering through a microscope, carefully added sperm to egg in a glass petri dish—a process known as in vitro fertilization (IVF). There have also been dramatic advances in our scientific understanding of the human genome during this time period, which has led to the ability to test for genetic alterations associated with diseases and other inherited characteristics. Currently there are tests for over 1000 genetic diseases available or under development, and the number is steadily growing. The independent fields of IVF and genetic testing each present a host of issues that are technically, legally and ethically complicated. But now, the worlds of genetic testing and assisted reproduction have converged, most notably in preimplantation genetic diagnosis (PGD)—technology that allows parents to choose which embryos to implant in a woman’s womb based on genetic test results. The arrival of PGD has engendered a host of new scientific, social, ethical and political quandaries. Many people have begun to consider not just the implications of this new genetic diagnostic tool but whether core ethical and practical concerns surrounding IVF are really all that settled. Adding genetic testing to the IVF process means that medical providers and scientists can now be deeply involved in the molecular mechanics of the most profound and mysterious of human activities: creating life. This intercession of technology into human reproduction evokes a range of responses. For some, it is a deeply offensive act in which science literally subsumes the role of God. For others, it allows science to alleviate the anguish of genetic disease and infertility. These dueling opinions reveal both PGD’s potential benefits and its possible risks. As with much modern scientific research, there is a basic tension between concerns about the adverse consequences of unregulated research and fears that we may fail to develop important technologies if we apply too much restraint. Regardless of how one feels about it, PGD is a powerful tool, for it allows parents to identify and select the