Thinking (Re)Productively – August 2013

Abortion politics and the production of knowledge

Lisa H. Harris

It is common to think of scientific research and the knowledge it generates as neutral and value free. Indeed, the scientific method is designed to produce “objective” data. However, there are always values built into science, as historians of science and technology have shown over and over. The relevant question is not how to rid science of values but, instead, to ask which values and whose values belong? Currently, antiabortion values consistently determine US research policy. Abortion research is declared illegitimate in covert and overt ways, at the level of individual researchers and research policy broadly. Most importantly, federal policy impedes conduct of both basic and clinical research in abortion. However, it is not just research in abortion that is deemed “illegitimate;” research in infertility and in vitro fertilization is as well. Federal funding of any reproductive health research agenda that would pose more than minimal risk to a fetus or embryo is banned. This leaves unanswered scientific questions about abortion, infertility, miscarriage and contraception among other areas. Since moral ground is occupied not just by abortion opponents but also by people who support abortion rights, there is at the very least a competing moral claim to consider changing federal research funding policy. Women and families deserve access to knowledge across the spectrum of reproductive health issues, whether they seek to end or start a pregnancy. Thus, research funding is an issue of reproductive justice.

Though the US Supreme Court’s decision in Roe v. Wade is 40 years old, abortion providers are still “illegitimate” doctors in antiabortion discourse and in the public imagination more broadly—that is, abortion providers routinely face attacks on and scrutiny of their moral standing and technical skills.¹ I want to now extend questions of legitimacy to research. Is abortion research “legitimate”? Is its worth questioned, or is it uniquely subject to scrutiny? Family planning researchers and clinicians work hard to prevent antiabortion politics from trumping science, meaning to let evidence from sound scientific research, not ideology, inform policy and practice. At particular moments around particular issues—for example, over-the-counter status of emergency contraception or requirements to use the outdated Food and Drug Administration-approved medication abortion regimen—the displacement of scientific evidence by ideology and politics becomes particularly vivid. However, I suggest here that these moments distract from the fact that every single day politics is quietly trumping science because the illegitimacy of abortion research is built into our US scientific enterprise.

Abortion research is declared illegitimate in covert and overt ways, at the level of individual researchers and research policy broadly. For example, some research mentors discourage new investigators from pursuing abortion-related studies. A colleague outside of my institution recently asked if I might assist a graduate student interested in abortion. The request read, “Many within her department have steered her away from the topic of abortion, suggesting stigma [exists] surrounding abortion research, in addition to use of abortion services”.² In other words, the taint of abortion spread to research. This devaluing of abortion research was evident in my own conversation with a senior bioethics researcher who, upon hearing my interest in abortion ethics, asked, “Is there really anything new to say about abortion?”.³ Ironically, his skepticism about the worth of abortion research generates its own empirical question: Are investigators deterred from conducting abortion research because it is not considered a legitimate area for serious, scholarly investigation?

Even more importantly, federal policy impedes conduct of both basic and clinical research in abortion. The National Institutes of Health (NIH), the world’s largest funder of biomedical research, may not fund “research in which a human embryo or embryos are destroyed, discarded, or knowingly subjected to risk of injury or death” as described in the Dickey–Wicker Amendment.^4,5 Its provisions came into effect in 1996, following two decades of earlier bans on funding of research that would pose more than “minimal risk” to a fetus.⁶ Congress renews the amendment annually. Accordingly, funding of clinical trials in abortion comes largely from private (and limited) sources. For investigators working in institutions in which NIH grants are the measure of success, required for promotion, abortion research may be a career liability.

Abortion research using private or nonfederal funds is permitted. However, federal rules on research conduct may still apply, since many US institutions apply NIH rules to all work conducted at their site.⁷ One of those rules, 45 CFR Part 46 Subpart B, details regulations for research involving pregnant women seeking abortion, specifying, “Individuals engaged in the research will have no part in any decisions as to the timing, method or procedures used to terminate a pregnancy”.⁸ The institutional review board of (at least) one major US academic institution has interpreted Subpart B in a way that rules out the possibility of doing any clinical abortion research involving an intervention (which by definition alters the “method or procedures” for abortion), permitting only observational studies.⁹ While Subpart B may have aimed to protect women seeking abortion, to the extent that it limits research that would improve abortion care, it does not. Given that about one third of women will utilize abortion services in their lives, disproportionately low-income women and women of color, Subpart B’s impact has gender, race and class implications.¹⁰ In addition, the rule suggests that abortion providers are not legitimate researchers or that they require oversight that other clinician–researchers do not.

Perhaps, we have become so inured to the stranglehold that abortion politics has on US life that bans on funding for abortion research seem acceptable or reasonable. So, it may be fruitful to move this conversation out of realm of abortion, to other areas of reproductive health. Do antiabortion values inform science in other areas, say, in efforts to begin rather than end pregnancies?

It turns out that the history of assisted reproductive technologies in the US is as fraught with abortion politics as abortion itself. In the 1980s, American in vitro fertilization (IVF) became quickly bound up with antiabortion politics and discourse.¹¹ Critics feared that IVF would produce abnormal fetuses, leading to abortion, and that IVF research would routinely destroy human embryos. Antiabortion protest nearly shut down early IVF work in Virginia. Ultimately, work persisted with private funds. Researchers waited patiently for NIH funding to study human fertilization, implantation, genetics of in vitro embryos, among other things, but it never became available.

Funding was impermissible because a 1975 federal policy stated: “No application or proposal involving human IVF may be funded by the Department [of Health, Education and Welfare (DHEW)]…until the application or proposal has been reviewed by the Ethical Advisory Board (EAB) and the Board has rendered advice as to its acceptability from an ethical standpoint”.¹² However, DHEW took several years to appoint a board, during which time favorably scored proposals could not be funded. Eventually, an EAB was appointed. Its first and only report in 1979 concluded that IVF research, though “legitimately controverted,” was ethically acceptable, as was federal funding of it.¹³ EAB members were concerned that if IVF research was declared ethically out-of-bounds, it would continue privately, without oversight, funded by patient fees and without adequate safety data.¹³ This is in fact what happened. DHEW never acted on the report, and the EAB disbanded in 1980.

With no hope for NIH funding, clinical IVF knowledge developed through patient treatment cycles, within clinics that were rapidly proliferating nationwide. Research costs were borne in part by patient clinical fees.¹¹ Thus, patients’ demand for care, and their ability to pay for it, and not a well-mapped, peer-reviewed or formally funded research agenda began to shape IVF knowledge. IVF research, and therefore knowledge, were driven by their market. That market was (and remains) largely older reproductive-aged women—often professionals, disproportionately white, who delayed childbearing and had the best odds of affording IVF care.¹¹ Though low-income women with less than high school education, disproportionately women of color, had infertility rates consistently one-and-a-half to two times higher than their more affluent white counterparts at every age and were more likely to have the tubal infertility that IVF was designed to treat, IVF research increasingly focused on diagnosis and management of infertility in older women without tubal infertility.^{11, 14, 1}5 This emphasis generated abundant data on, for example, Day 3 FSH and oocyte donation. These became staples of IVF care because they met the demands of the market that could afford it.¹¹ Whether lack of research is responsible for reduced IVF success rates observed in women of color who do seek IVF is unknown.¹⁵

There was no shortage of IVF research questions,¹⁶ but questions about human sperm and egg recognition, fertilization, implantation and embryo development, among others, could not be funded. NIH staff became talented at nurturing projects that would benefit IVF patients but were still permissible.¹⁷ In the words of the NIH program officer who oversaw the relevant research portfolio at the time, NIH’s approach was to work “around the edges” of IVF, since they could not fund studies of fertilization or implantation directly; that is, NIH funded epidemiological and outcomes research on safety and success of IVF, as well as IVF in nonhuman animal models.¹⁷ This has remained an important strategy. Federally funded researchers continue to work around the edges of IVF—as well as abortion, miscarriage, contraception and other reproductive health issues, which is valuable. However, patients deserve more than the “edges.” It is not acceptable that a value system unsupported by many researchers and by women and families most impacted by research outcomes limits investigation to the edges.

Ultimately in 2000, George W. Bush approved federal funding of research involving a limited number of human embryonic stem cell lines; he did so not because he disagreed with antiabortion values that dictated NIH policy until then, but because embryos had already been destroyed in the process of stem-cell derivation. As he put it, the “life-and-death decision” had already been made.¹⁸ So, even as Bush freed funds, he reified the “pro-life” values that were responsible for lack of funding in the first place. While there are now 209 stem cell lines available for NIH-funded research, the values system underlying federal funding has not been revisited; only use (but not derivation) of stem cells is federally fundable.¹⁹ There remains no possibility of funding other types of research involving human embryos.

More disturbing than the failure of DHEW to reappoint an EAB through the 1980s despite repeated requests from scientists is that it was not even questions of moral rightness or wrongness that were responsible. It was fear of controversy. At the 1988 Congressional hearings on infertility, the “eight-year de facto federal ban on human IVF research” was a central topic of inquiry.²⁰ The Department of Health and Human Services (HHS, formerly DHEW) could offer only one reason for the failure of several HHS Secretaries to reappoint an EAB, a reason repeated in several memoranda: “To take no action will avoid controversy”.²⁰ These memoranda specified that by not appointing an EAB, “the Department may significantly reduce criticism” from “right-to-life groups and other individuals or members of Congress”.²⁰ This logic assumed that it was utterly uncontroversial to deny women the knowledge that would come from this kind of research.

Currently, reproductive science in the US embodies the values of people who want to see abortion disappear. Federal officials may not want to revisit the issue of research involving human embryos to avoid further polarizing a nation increasingly incapable of civil discourse about abortion and many other issues. Alternatively, they may simply fear the political ramifications of doing so. Regardless, it appears that it has not occurred to legislators or federal officials that moral ground is occupied not just by abortion opponents but also by people who support abortion rights. There is at the very least a competing moral claim to consider changing federal research funding policy. Furthermore, because the issue of value-laden science affects not just abortion but all arenas of reproductive health research, this is an issue not just of reproductive rights but of reproductive justice. Women and families deserve access to knowledge across the spectrum of reproductive health issues, whether they seek to end or start a pregnancy.

It is common to think of scientific research and the knowledge it generates as neutral, objective and value free. Indeed, the scientific method, in which we ask a question, generate a hypothesis, test our hypothesis, draw conclusions and report results in a transparent fashion, is designed to produce “objective” data that can be replicated by others. However, there are always values built into science, as historians of science and technology have shown over and over.^{21, 22} Science is a human enterprise and, therefore, embodies human values. The relevant question is not how to rid science of values but, instead, to ask which values and whose values belong? In a pluralistic society, why do antiabortion values consistently determine research policy?

Until both moral and reproductive justice claims to knowledge are further articulated, it appears that one core value of US science today is that abortion research (or anything that looks like it) is illegitimate. The other core value is to avoid controversy. Perhaps, we should amend the steps of scientific method to reflect this.

Acknowledgment

The author would like to thank Katie Watson, Timothy Johnson, Stephen Harris and Beth Jordan for comments on earlier drafts of this manuscript.

References

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2. E-mail communication with the author, April 25, 2013. Used with permission.
3. Personal communication. 2011;Baltimore, MD
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12. Department of Health, Education and Welfare . Protection of human subjects – fetuses, pregnant women and in vitro fertilization. 1975;40 FR 33527 August 8
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