Academic journal article The Hastings Center Report

Federal Privacy and Confidentiality

Academic journal article The Hastings Center Report

Federal Privacy and Confidentiality

Article excerpt

Human reproduction will be subject to extensive control within the next few decades. Better contraceptive methods and the ability to facilitate and manipulate fertilization and gestation will give couples greater control over fertility. Once an in vitro embryo has been created, or a pregnancy has been established, the ability to evaluate the embryo and fetus thoroughly will increase dramatically, with progress in human genetic research. Preconception and preimplantation genetic testing and screening are now possible, and the technology to perform prenatal screening early in gestation is advancing rapidly. Nonsurgical abortions earlier in pregnancy may make abortion a less traumatic experience for women, and thus foster its use in a broader range of circumstances. These capabilities all may be brought to bear to enable and, perhaps, encourage fine-grained genetic selection of future children.

The prerogative of using prenatal screening and selective abortion to avoid the birth of a seriously impaired child has been widely accepted in our society. For the past twenty years, a consistent 79 percent of the U.S. public has believed that abortion should be available "if there would be a serious defect in the baby."[1] Therefore, despite the ethical concerns associated with prenatal testing and abortion, these services will continue to be an integral aspect of reproductive medicine. As technology advances, however, the capabilities will be available to test and screen for conditions that do not produce "serious defects." Genetic conditions that produce relatively mild impacts on health will be identifiable in the embryo or fetus. Late-onset conditions and genetic factors which have only a probability of affecting health will also be located in the fetal genome. It is even possible that genetic factors that influence a broad range of normal physical and behavioral characteristics will be predictable early in fetal development. Prospective parents soon may have the capability of selecting their most desirable embryo in vitro, or terminating all undesirable fetuses in vivo until the "right" child is delivered.

The choice of whether, and how much, to control the biologic nature of future generations is at issue. Are there any limits our society should establish on the application of prenatal testing and screening technology? The recent report of the Committee on Assessing Genetic Risks of the Institute of Medicine (IOM) recommended that "prenatal diagnosis not be used for minor conditions or characteristics,"[2] yet provided no definition of "minor." The medical profession is a primary gatekeeper for reproductive technology, so if limits on technology are appropriate, the medical profession must take some responsibility for establishing these guidelines.[3] Yet these issues are not simply medical in a narrow sense, they are also deeply philosophical. Control over reproduction and the fundamental relationship between parent and child are at stake, so these are issues with which society as a whole must grapple and come to some reasoned consensus. Standards of practice for the medical profession must reflect the results of a broad social debate over competing moral values.

In this article, I develop an argument for legal and ethical limitations on the application of prenatal testing and screening technology. The issues of choice in this context are substantially different from the issues in the classic abortion debate. Different rights and interests are involved in prenatal screening and selective abortion, and a different framework must be maintained to debate the moral issues in this context. I will suggest that for some medical conditions, respect for the privacy and confidentiality of the fetus outweigh parental rights to information about the fetus. Preliminary definitions for what constitute "serious defects" and "minor conditions" will be developed.

At the outset, I emphasize that the limitations under discussion for prenatal technology are both legal and ethical in nature. …

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