A Slippery Slope: The POPLINE Controversy

Pablo Rodriguez MD

Call it censored, call it buried, call it lost - the search term “abortion” was all of the above for approximately a month on POPLINE. “Contraception,” “sexuality,” and “reproductive health” are the next stopwords, unless we remain vigilant and protest loudly.

Call it censored, call it buried, call it lost—the search term “abortion” was all of the above for approximately a month on POPLINE—a publicly-funded database that its administrators describe as “Your connection to the world’s reproductive health literature.”

Last week, researchers at the University of California, San Francisco, uncovered this ironic situation while trying to “connect” to “reproductive health literature.” Health care providers, researchers, and advocates around the country were alarmed to learn that POPLINE (POPulation information onLINE), had rendered the search term “abortion” a stopword—which directs the database to ignore the term when used in a search. UCSF librarians discovered this deliberate restriction when they were unable to find a single document containing the word “abortion” in POPLINE’s database, and contacted the administrators at the Johns Hopkins Bloomberg School of Public Health to ask them why. Simply put, the UCSF librarians were told that “abortion” was eliminated as a search term by the POPLINE administrators so that the latter could examine the database for information “that might not have been consistent” with guidelines from a government agency that funds the project. And our UCSF colleagues were then given some mystifying, convoluted search term suggestions for finding medical literature on the subject, including “fertility control, post-conception” and “pregnancy, unwanted.”

By Friday morning, news of the self-censorship had spread like a virus. Countless members of the medical, scientific, and advocacy communities responded and by early Friday evening, Hopkins Dean Michael J. Klag issued a statement unequivocally denouncing the administrators’ decision to censor the word abortion and promising to get to the bottom of it. By Tuesday, he issued a follow up statement citing his opposition to the decision and his speedy response, while blaming “an overreaction on the part of POPLINE staff” to a search by USAID [United States Agency for International Development] officials who “found two items in the POPLINE database that advocated for abortion.”

So let’s pause for a moment and review what happened: a vigilant literature search on the word “abortion” by unidentified Federal employees at USAID resulted in finding two abortion articles in the POPLINE database that they deemed to feature inappropriate advocacy. Once notified by the Feds, Hopkins administrators immediately made abortion a stopword—an additional step not requested by USAID, but implemented to allow administrators to search for other material that might have been inconsistent with the agency’s guidelines—effectively ending access to abortion research to health professionals and the public on their 30-year-old database.

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While giving credit to Dean Klag for his quick response to an untenable situation, there are two important questions that remain: Why are Federal employees at USAID so attentively monitoring scientific research articles on the POPLINE database for the word “abortion”? And why are Hopkins administrators so afraid of them? The Dean states that USAID is prohibited by law from funding any abortion activities or supplies. This is all the more reason for concern by researchers, civil libertarians, health care providers, and patients who deserve the best possible care. But the incident simply points to a larger problem: Federal policy regarding comprehensive reproductive health care is inadequate.

The Real Impact of Limiting Access to Information

The medical and scientific needs of the reproductive health professional community were impeded by POPLINE’s decision to remove abortion as a search term on its publicly funded database. If this action had gone unchecked, the decision would have limited the medical and scientific community’s ability to access information on a range of patient care scenarios, including women experiencing both wanted and unintended pregnancies.

A clinician seeking information while providing abortion care services would have been unsuccessful in accessing key medical and scientific literature on the topic—potentially endangering the patient. Women with wanted pregnancies and their health care providers looking for information on spontaneous abortion (miscarriage), inevitable abortion, incomplete abortions, missed abortions, and related medical information would have also been denied this key data.

Unsafe abortion practices claim thousands of lives worldwide every year and any public health student, policy maker, or provider seeking vital information on the topic of unsafe abortion would have also come up empty-handed.

Ideology Trumping Science Is About More Than Just Abortion

The specter of ideology trumping science goes way beyond POPLINE and abortion. There is more visible political opposition to important health classifications like family planning, sexuality, and reproductive health than we have seen in years. Political posturing can get in the way of science, public health, and patient care—even POPLINE’s reputation is potentially at risk.

Over the last seven years, we have witnessed an intentional blurring of the lines between opposition to abortion and a more general objection to contraception. For example, many of President Bush’s anti-choice family planning political appointees have been openly anti-contraception as well. Bush’s 2002 appointment to a key FDA panel, Dr. Joseph B. Stanford, complained about contraceptive use even among married couples. And more recently Bush appointed Susan Orr as the acting deputy assistant secretary for population affairs to oversee family planning funding for clinics serving poor women, even though she previously worked to limit access to contraception as the senior director for marriage and family care at the Family Research Council, an organization well-known for its anti-contraception stance.

And now the term “reproductive health” is being targeted. At the United Nations, there are unbelievably rancorous debates about whether or not to include the terms “sexuality” and “reproductive health” in treaties because many politicians view them as faux terms for abortion.

It may have been that POPLINE staff made the decision based on fear of losing their USAID funding. USAID does have a history of basing reproductive care funding decisions at least partly on ideology and politics. For example, they have withheld funding from developing countries if potential grantees provide abortion services or give abortion referrals to women.

It’s also possible the suggestion came from above. With the Bush administration’s history of attempting to (and often succeeding in) restricting access to abortion services and information at every possible turn, it’s not so unlikely they’d attempt to scrap the word altogether.

The bottom line is that even self-censorship of a specific term like “abortion” in a scientific setting—especially as a result of Federal government monitoring—sets a dangerous precedent. We must follow the example of our UCSF colleagues and make preserving access to reproductive health science a part of our own work plans. It’s scary enough to consider the possibility that ideological searches are being performed by anonymous government employees who troll our scientific databases for the word “abortion.” “Contraception,” “sexuality,” and “reproductive health” are the next stopwords, unless we remain vigilant and protest loudly.

This column first appeared at Science Progress, a publication covering progressive science and technology policy, and was written by Pablo Rodriguez, MD, Board Chair of the Association of Reproductive Health Professionals (ARHP), Wayne C. Shields, ARHP President and CEO of ARHP, and Jennifer Aulwes, ARHP Media and Policy Manager.

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Commentary Contraception

Hillary Clinton Played a Critical Role in Making Emergency Contraception More Accessible

Susan Wood

Today, women are able to access emergency contraception, a safe, second-chance option for preventing unintended pregnancy in a timely manner without a prescription. Clinton helped make this happen, and I can tell the story from having watched it unfold.

In the midst of election-year talk and debates about political controversies, we often forget examples of candidates’ past leadership. But we must not overlook the ways in which Hillary Clinton demonstrated her commitment to women’s health before she became the Democratic presidential nominee. In early 2008, I wrote the following article for Rewirewhich has been lightly edited—from my perspective as a former official at the U.S. Food and Drug Administration (FDA) about the critical role that Clinton, then a senator, had played in making the emergency contraception method Plan B available over the counter. She demanded that reproductive health benefits and the best available science drive decisions at the FDA, not politics. She challenged the Bush administration and pushed the Democratic-controlled Senate to protect the FDA’s decision making from political interference in order to help women get access to EC.

Since that time, Plan B and other emergency contraception pills have become fully over the counter with no age or ID requirements. Despite all the controversy, women at risk of unintended pregnancy finally can get timely access to another method of contraception if they need it—such as in cases of condom failure or sexual assault. By 2010, according to National Center for Health Statistics data, 11 percent of all sexually experienced women ages 15 to 44 had ever used EC, compared with only 4 percent in 2002. Indeed, nearly one-quarter of all women ages 20 to 24 had used emergency contraception by 2010.

As I stated in 2008, “All those who benefited from this decision should know it may not have happened were it not for Hillary Clinton.”

Now, there are new emergency contraceptive pills (Ella) available by prescription, women have access to insurance coverage of contraception without cost-sharing, and there is progress in making some regular contraceptive pills available over the counter, without prescription. Yet extreme calls for defunding Planned Parenthood, the costs and lack of coverage of over-the-counter EC, and refusals by some pharmacies to stock emergency contraception clearly demonstrate that politicization of science and limits to our access to contraception remain a serious problem.

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Today, women are able to access emergency contraception, a safe, second chance option for preventing unintended pregnancy in a timely manner without a prescription. Sen. Hillary Clinton (D-NY) helped make this happen, and I can tell the story from having watched it unfold.

Although stories about reproductive health and politicization of science have made headlines recently, stories of how these problems are solved are less often told. On August 31, 2005 I resigned my position as assistant commissioner for women’s health at the Food and Drug Administration (FDA) because the agency was not allowed to make its decisions based on the science or in the best interests of the public’s health. While my resignation was widely covered by the media, it would have been a hollow gesture were there not leaders in Congress who stepped in and demanded more accountability from the FDA.

I have been working to improve health care for women and families in the United States for nearly 20 years. In 2000, I became the director of women’s health for the FDA. I was rather quietly doing my job when the debate began in 2003 over whether or not emergency contraception should be provided over the counter (OTC). As a scientist, I knew the facts showed that this medication, which can be used after a rape or other emergency situations, prevents an unwanted pregnancy. It does not cause an abortion, but can help prevent the need for one. But it only works if used within 72 hours, and sooner is even better. Since it is completely safe, and many women find it impossible to get a doctor’s appointment within two to three days, making emergency contraception available to women without a prescription was simply the right thing to do. As an FDA employee, I knew it should have been a routine approval within the agency.

Plan B emergency contraception is just like birth control pills—it is not the “abortion pill,” RU-486, and most people in the United States don’t think access to safe and effective contraception is controversial. Sadly, in Congress and in the White House, there are many people who do oppose birth control. And although this may surprise you, this false “controversy” not only has affected emergency contraception, but also caused the recent dramatic increase in the cost of birth control pills on college campuses, and limited family planning services across the country.  The reality is that having more options for contraception helps each of us make our own decisions in planning our families and preventing unwanted pregnancies. This is something we can all agree on.

Meanwhile, inside the walls of the FDA in 2003 and 2004, the Bush administration continued to throw roadblocks at efforts to approve emergency contraception over the counter. When this struggle became public, I was struck by the leadership that Hillary Clinton displayed. She used the tools of a U.S. senator and fought ardently to preserve the FDA’s independent scientific decision-making authority. Many other senators and congressmen agreed, but she was the one who took the lead, saying she simply wanted the FDA to be able to make decisions based on its public health mission and on the medical evidence.

When it became clear that FDA scientists would continue to be overruled for non-scientific reasons, I resigned in protest in late 2005. I was interviewed by news media for months and traveled around the country hoping that many would stand up and demand that FDA do its job properly. But, although it can help, all the media in the world can’t make Congress or a president do the right thing.

Sen. Clinton made the difference. The FDA suddenly announced it would approve emergency contraception for use without a prescription for women ages 18 and older—one day before FDA officials were to face a determined Sen. Clinton and her colleague Sen. Murray (D-WA) at a Senate hearing in 2006. No one was more surprised than I was. All those who benefited from this decision should know it may not have happened were it not for Hillary Clinton.

Sometimes these success stories get lost in the “horse-race stories” about political campaigns and the exposes of taxpayer-funded bridges to nowhere, and who said what to whom. This story of emergency contraception at the FDA is just one story of many. Sen. Clinton saw a problem that affected people’s lives. She then stood up to the challenge and worked to solve it.

The challenges we face in health care, our economy, global climate change, and issues of war and peace, need to be tackled with experience, skills and the commitment to using the best available science and evidence to make the best possible policy.  This will benefit us all.

Commentary Human Rights

When It Comes to Zika and Abortion, Disabled People Are Too Often Used as a Rhetorical Device

s.e. smith

Anti-choicers shame parents facing a prenatal diagnosis and considering abortion, even though they don't back up their advocacy up with support. The pro-choice movement, on the other hand, often finds itself caught between defending abortion as an absolute personal right and suggesting that some lived potentials are worth more than others.

There’s only one reason anyone should ever get an abortion: Because that person is pregnant and does not want to be. As soon as anyone—whether they are pro- or anti-choice—starts bringing up qualifiers, exceptions, and scary monsters under the bed, things get problematic. They establish the seeds of a good abortion/bad abortion dichotomy, in which some abortions are deemed “worthier” than others.

And with the Zika virus reaching the United States and the stakes getting more tangible for many Americans, that arbitrary designation is on a lot of minds—especially where the possibility of developmentally impaired fetuses is concerned. As a result, people with disabilities are more often being used as a rhetorical device for or against abortion rights rather than viewed as actualized human beings.

Here’s what we know about Zika and pregnancy: The virus has been linked to microcephaly, hearing loss, impaired growth, vision problems, and some anomalies of brain development when a fetus is exposed during pregnancy, according to the Centers for Disease Control and Prevention. Sometimes these anomalies are fatal, and patients miscarry their pregnancies. Sometimes they are not. Being infected with Zika is not a guarantee that a fetus will develop developmental impairments.

We need to know much, much more about Zika and pregnancy. At this stage, commonsense precautions when necessary like sleeping under a mosquito net, using insect repellant, and having protected sex to prevent Zika infection in pregnancy are reasonable, given the established link between Zika and developmental anomalies. But the panicked tenor of the conversation about Zika and pregnancy has become troubling.

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In Latin America, where Zika has rampantly spread in the last few years, extremely tough abortion restrictions often deprive patients of reproductive autonomy, to the point where many face the possibility of criminal charges for seeking abortion. Currently, requests for abortions are spiking. Some patients have turned to services like Women on Web, which provides assistance with accessing medical abortion services in nations where they are difficult or impossible to find.

For pro-choice advocates in the United States, the situation in Latin America is further evidence of the need to protect abortion access in our own country. Many have specifically using Zika to advocate against 20-week limits on abortion—which are already unconstitutional, and should be condemned as such. Less than 2 percent of abortions take place after 20 weeks, according to the Guttmacher Institute. The pro-choice community is often quick to defend these abortions, arguing that the vast majority take place in cases where the life of the patient is threatened, the fetus has anomalies incompatible with life, or the fetus has severe developmental impairments. Microcephaly, though rare, is an example of an impairment that isn’t diagnosable until late in the second trimester or early in the third, so when patients opt for termination, they run smack up against 20-week bans.

Thanks to the high profile of Zika in the news, fetal anomalies are becoming a talking point on both sides of the abortion divide: Hence the dire headlines sensationalizing the idea that politicians want to force patients to give birth to disabled children. The implication of leaning on these emotional angles, rather than ones based on the law or on human rights, is that Zika causes disabilities, and no one would want to have a disabled child. Some of this rhetoric is likely entirely subconscious, but it reflects internalized attitudes about disabled people, and it’s a dogwhistle to many in the disability community.

Anti-choicers, meanwhile, are leveraging that argument in the other direction, suggesting that patients with Zika will want to kill their precious babies because they aren’t perfect, and that therefore it’s necessary to clamp down on abortion restrictions to protect the “unborn.” Last weekend, for instance, failed presidential candidate Sen. Marco Rubio (R-FL) announced that he doesn’t support access to abortion for pregnant patients with the Zika virus who might, as a consequence, run the risk of having babies with microcephaly. Hardline anti-choicers, unsurprisingly, applauded him for taking a stand to protect life.

Both sides are using the wrong leverage in their arguments. An uptick in unmet abortion need is disturbing, yes—because it means that patients are not getting necessary health care. While it may be Zika exposing the issue of late, it’s a symptom, not the problem. Patients should be able to choose to get an abortion for whatever reason and at whatever time, and that right shouldn’t be defended with disingenuous arguments that use disability for cover. The issue with not being able to access abortions after 20 weeks, for example, isn’t that patients cannot access therapeutic abortions for fetuses with anomalies, but that patients cannot access abortions after 20 weeks.

The insistence from pro-choice advocates on justifying abortions after 20 weeks around specific, seemingly involuntary instances, suggests that so-called “late term abortions” need to be circumstantially defended, which retrenches abortion stigma. Few advocates seem to be willing to venture into the troubled waters of fighting for the right to abortions for any reason after 20 weeks. In part, that reflects an incremental approach to securing rights, but it may also betray some squeamishness. Patients don’t need to excuse their abortions, and the continual haste to do so by many pro-choice advocates makes it seem like a 20-week or later abortion is something wrong, something that might make patients feel ashamed depending on their reasons. There’s nothing shameful about needing abortion care after 20 weeks.

And, as it follows, nor is there ever a “bad” reason for termination. Conservatives are fond of using gruesome language targeted at patients who choose to abort for apparent fetal disability diagnoses in an attempt to shame them into believing that they are bad people for choosing to terminate their pregnancies. They use the specter of murdering disabled babies to advance not just social attitudes, but actual policy. Republican Gov. Mike Pence, for example, signed an Indiana law banning abortion on the basis of disability into law, though it was just blocked by a judge. Ohio considered a similar bill, while North Dakota tried to ban disability-related abortions only to be stymied in court. Other states require mandatory counseling when patients are diagnosed with fetal anomalies, with information about “perinatal hospice,” implying that patients have a moral responsibility to carry a pregnancy to term even if the fetus has impairments so significant that survival is questionable and that measures must be taken to “protect” fetuses against “hasty” abortions.

Conservative rhetoric tends to exceptionalize disability, with terms like “special needs child” and implications that disabled people are angelic, inspirational, and sometimes educational by nature of being disabled. A child with Down syndrome isn’t just a disabled child under this framework, for example, but a valuable lesson to the people around her. Terminating a pregnancy for disability is sometimes treated as even worse than terminating an apparently healthy pregnancy by those attempting to demonize abortion. This approach to abortion for disability uses disabled people as pawns to advance abortion restrictions, playing upon base emotions in the ultimate quest to make it functionally impossible to access abortion services. And conservatives can tar opponents of such laws with claims that they hate disabled people—even though many disabled people themselves oppose these patronizing policies, created to address a false epidemic of abortions for disability.

When those on either side of the abortion debate suggest that the default response to a given diagnosis is abortion, people living with that diagnosis hear that their lives are not valued. This argument implies that life with a disability is not worth living, and that it is a natural response for many to wish to terminate in cases of fetal anomalies. This rhetoric often collapses radically different diagnoses under the same roof; some impairments are lethal, others can pose significant challenges, and in other cases, people can enjoy excellent quality of life if they are provided with access to the services they need.

Many parents facing a prenatal diagnosis have never interacted with disabled people, don’t know very much about the disability in question, and are feeling overwhelmed. Anti-choicers want to force them to listen to lectures at the least and claim this is for everyone’s good, which is a gross violation of personal privacy, especially since they don’t back their advocacy up with support for disability programs that would make a comfortable, happy life with a complex impairment possible. The pro-choice movement, on the other hand, often finds itself caught between the imperative to defend abortion as an absolute personal right and suggesting that some lived potentials are worth more than others. It’s a disturbing line of argument to take, alienating people who might otherwise be very supportive of abortion rights.

It’s clearly tempting to use Zika as a political football in the abortion debate, and for conservatives, doing so is taking advantage of a well-established playbook. Pro-choicers, however, would do better to walk off the field, because defending abortion access on the sole grounds that a fetus might have a disability rings very familiar and uncomfortable alarm bells for many in the disability community.

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