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8 Areas for Policy Development At the Institute of Medicine (IOM) annual meeting from which this volume was developed, a panel of specialists examined the issues in reproductive health that they considered to be of the greatest concern. The importance of reproductive health as an indicator of the overall well-being and vigor of the nation was emphasized. The speakers and many of those in attendance discussed recent scientific advances and the unresolved social issues of reproductive biology. These two points became clear: As a nation it appears we have not decided whether our goal is to control the sexual activity of our teenagers or to devote our resources to improving reproductive health and decreasing the number of unplanned and unwanted pregnancies. As a heterogeneous people, our concerns are diverse. Without a public body to consider all points of view in the emotionally charged realm of sexuality and reproduction and to develop a factual and analytic basis for enlightened public policy making, it is extremely difficult for a nation to formulate policy. Although a number of issues concerning reproductive health have been resolved, new ones materialize as society evolves and more is learned about reproduction and the importance of improving the health 158

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AREAS FOR POLICY DEVELOPMENT 159 of mothers and babies. Worldwide the emergence of new technologies has prompted vigorous discussions of their social and ethical aspects. In the United States the task of developing a consensus on reproduc- tive health issues has proved much more difficult, partly because of this country's diversity and its unwillingness to discuss sexually related issues frankly. Commissions and boards have been mandated, but conflicting opinions and a reluctance to become involved in such controversial is- sues made even the process of appointing members difficult. Without the sustained, active interest of the nation's leaders to support them, no board has survived long enough either to resolve ethical questions about individual research projects or to establish a broad consensus about the ethical issues that arise from such research. As a result, major needs affecting reproductive health are not being met: . system. The need for federal support of research on the reproductive Information from studies that use human eggs and embryos would be more reliable and of better quality if the research received the direction and organization that accompany most federally supported projects. The public is excluded from participating in the evaluation of research in which it has displayed a keen interest. The absence of an Ethics Advisory Board (EAB) has halted reproductive health investigations that hold promise. Moreover, infertile people and families at high risk for genetic diseases are being deprived of the potential benefits of research. . IVF clinics. Standards, licensing, anal government regulation are needed for In vitro fertilization and gamete intrafallopian transfer techniques have moved rapidly from experimental to therapeutic status without ben- efit of federal oversight. Although professional societies have set mini- mum standards for the new infertility treatments, clinics are not obliged to adhere to them. In addition, embryo laboratories are not licensed. Before the Wyden subcommittee surveyed IVF clinics, information on their number, services, and success rates was limited. At present, users of the new infertility treatments have little protection under the law. . promoted. Strategies to prevent infertility should be developed and widely Because infertility can be emotionally devastating and expensive to treat, reducing its incidence is desirable. In some 20 percent of infertile

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160 SCIENCE AND BABIES U.S. couples, the disorder was caused by infectious disease, a type of infertility that is preventable. Many cases of infertility are caused by fallopian tube obstructions resulting from repeated bouts of sexually transmitted diseases. A massive national effort is needed to educate public health professionals as well as the public about the relationship between sexually transmitted diseases and infertility, the symptoms of these diseases, and the optimal treatments. The effort should incorporate partner tracing and patient counseling. . improved. The nation's maternity care system needs to be reorganized" and The United States in recent years has not been able to achieve a real decrease in its neonatal mortality rate. In addition, it is experiencing a deepening of poverty, particularly among single mothers, and there appears to be no change in the rate of births to teenagers and unmarried women, who often have low birthweight babies. Prenatal care is clearly associated with improved pregnancy outcomes. It reduces the incidence of maternal and infant deaths and low birthweight among newborns. Prenatal care is especially important for women who are at increased medical or social risk, or both. Women who do not receive adequate maternity care have double the risk of having a low birthweight infant. Prenatal care is also cost-effective. Researchers estimate that every dollar spent on prenatal care for women who risk having a low birthweight baby potentially reduces by over $3 the cost for medical care for that baby during its first year. Since 1980 the percentage of women who received late or no prenatal care has increased. Although this trend applies to all races, the increase is most notable among black women. An IOM study revealed maternity care to be a complicated network of publicly and privately funded services that is "flawed, fragmented, and overly complex." According to the IOM report, the best way to reverse current declines in the use of prenatal care would be a complete transformation of the present nonsystem. The IOM committee strongly denounced the present practice of making incremental . . . c ranges to existing services. It emphasized the importance of making no alterations in the ma- ternity care system "until the nation's leaders first make a commitment to enact substantial changes." In addition, it recommended that im- provements to the maternity care system be accompanied by a greater investment in family planning.

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AREAS FOR POLICY DEVELOPMENT 161 A deeper national commitment to family planning education ant! services is neecled. The high rates of abortion and teenage pregnancy in the United States indicate the need for more accessible, user-oriented family planning ser- vices and education. Many men and women, particularly younger ones, are badly informed about birth control and about the true effectiveness and health risks of the currently available contraceptive methods. To reduce the number of abortions and unintended pregnancies, this country needs to develop a more positive, less equivocal attitude toward contra- ception and needs to acknowledge in a variety of forums the importance of family planning to good reproductive health. Accompanying a more open attitude toward contraception should be a vigorous advertising and public education campaign about family planning and birth control. In addition, ways should be found to ameliorate the current impediments to contraceptive research and development. Better researched programs are needed if adolescents are going to be helped successfully to avoid pregnancy or to delay sexual activity. Although sexual activity among U.S. teenagers is no more prevalent than among adolescents in other industrialized countries, the United States has much higher rates of adolescent childbearing and abortion. In recent years many programs have tried to reduce the incidence of teen pregnancy, but their results are not clear. A much better understanding of what program elements are most effective in helping teens avoid sexual activity and pregnancy is necessary. To achieve this, the IOM committee on prenatal care suggested that programs using new approaches should include a research component designed to demonstrate what did and did not work in that program. A public policy process is needed. None of the above issues can be resolved without a public policy process. During the 1970s medical researchers learned to create human life in a dish to fertilize the human egg and nurture the resulting embryo through its first stages of development. The 1990s will see an expansion of technological skills for analyzing the embryo, enabling scientists to recognize abnormal chromosomes and to detect genes known to produce physical diseases and, perhaps, genes suspected of producing mental disorders or antisocial behaviors. The ethical implications of such expertise, which already exists and is being expanded in other countries and, with private support, in

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162 SCIENCE AND BABIES the United States, are enormous. Because of its nature, this research should be done with federal input and controls, and both the support and controls should reflect the concerns of this society. As other countries have demonstrated, a national public commission or board is an effective tool for analyzing broad ethical issues and for formulating public policy. Using this approach, nations have successfully developed laws governing ethically sensitive research and have established criteria for licensing specific research projects. The United States possessed such a public entity in the congressional Biomedical Ethics Board, formed in 1985 to examine the protection of human subjects in biomedical research. The board ceased to function in 1989. The United States would have the equivalent of a licensing body in the Ethics Advisory Board if the U.S. Department of Health and Human Services moves on its proposal to reactivate it. Like the Biomedical Ethics Board, the EAB also had a politically difficult task; it was allowed to lapse in 1980 when its funding and charter expired. Meanwhile, privately supported, ethically sensitive research is being carried out in the United States without federal oversight, and therapies for infertility are being developed and used without the safeguard of a solid scientific basis. The success of infertility treatments has been limited partially because the scientific knowledge on which they are based is insufficient. The genetic testing of early embryos holds the promise of drastically reducing the use of later abortions for severe birth defects. Such tests would also make it possible for families with a history of genetic disease to have healthy babies. Without a means for resolving the ethical issues associated with embryo research, however, these lines of study cannot be explored under federal guidelines. In order to give the public a voice in and some control over the ethically sensitive issues associated with reproduction research and treat- ments, a process of public education on important bioethical issues must be put in place and a national consensus must be developed. Observers have recommended that the EAB be reactivated, energized, and ade- quately funded. Because the United States is a disparate society, the task of achieving a consensus will be more difficult than it has been for other countries, but these issues must be addressed if the nation is to benefit from reproductive research.