To be fair, the situation would not be much better for these women if carrier testing were done prior to conception, since states are generally reluctant to make any of the new reproductive technologies, including gamete donation, available to poor women. Other women face barriers as well. Private insurance often does not pay for carrier screening. Only a few states require insurers to pay for RGT, and even these states cannot impose requirements on self-insured plans. In addition, in a growing number of states, courts and legislatures have struck down or forbidden lawsuits in which parents claim that had they been appropriately informed of their risk of having a child with a genetic disorder, they would have terminated or otherwise avoided the pregnancy.
Lawsuits brought by the affected children are even more widely disapproved.
As a result, clinicians in those states can simply decline to offer any form of RGT to pregnant women without fear of liability, even for tests that would otherwise be well within the standard of care. The lessons highlighted by the research and debate about CF carrier screening, while not all that surprising, point out the need for change. Carrier testing is used as part of prenatal diagnosis and will continue to be so until people begin to think about these issues prior to pregnancy. Finally, the legal barriers and disincentives to ensuring access to these technologies for women who want to use them are unjust and must be rectified. Ms. Schultz is Professor of Law at the Boalt Hall School of Law at the University of California at Berkeley.