Archive for the ‘Research & Studies’ Category

March 27, 2013

What Explains Variation in Cesarean Rates Between Hospitals?

While cesarean rates (which reached an all-time high in 2007) are known to vary widely by state, they also vary quite a bit by hospital. One common explanation for this has been that different hospitals have different c-section rates because they see different types of patients – patients who are sicker or healthier, or more likely to have complications requiring cesarean.

In an article published in PLOS ONE, researchers report findings from a study designed to look at other factors that influence cesarean rates. The authors looked at birth certificate and hospital discharge data in Massachusetts to determine which factors were linked to cesarean rates at each hospital.

The researchers focused on first births of single, non-breech births in Massachusetts hospitals from the beginning of 2004 through the end of 2006. They report that at the hospital level, the percent of cesarean deliveries varied between 14.0 percent and 38.3 percent (average of 26.4 percent). Then they adjusted for health and sociodemographic factors, like labor induction and maternal age, that are linked to higher rates of cesarean.

They found, predictably, that individual risk for cesarean varied by demographic, socioeconomic, pregnancy, and preexisting medical conditions. After they adjusted for these factors, though, there was still significant variation in rates between hospitals that could not be explained by those medical and personal risk factors.

While the authors did not set out to explain why this variation occurred, they note that it has been observed in other studies (such as in Arizona, and in military hospitals), and that contributing factors may include liability- and insurance-related factors, whether a woman delivers at a teaching hospital, the provider’s approach to delivery, hospital practices related to labor induction and augmentation, and others. They conclude that additional research is needed on hospital characteristics to figure out what is driving variability between hospitals and reduce the influence of non-clinical factors on women’s risk of cesarean delivery.

Finding out the rate of cesarean sections at any given hospital can be difficult, as is understanding why the rates are high in any given situation. At her  website,, consumer advocate Jill Arnolds attempts to bring together the available statistics, allowing users to compare cesarean rates by state and by individual hospital.

If you’re interested in finding out more about what you can do increase your chances of having a vaginal birth, see this tip sheet from Childbirth Connection.

March 21, 2013

Are Right-to-Know Breast Density Laws Good for Women’s Health?

There’s been much discussion lately about routine mammogram screening for breast cancer, including, according a new study, the very real psychological harm connected to false positive readings.

Complicating this information further is the issue of breast density. Dense breasts have less fat and more glandular and connective tissue. While some women’s breasts become less dense and more fatty as they age, other women’s breasts remain relatively dense.

Why does this matter? Having dense breast tissue makes it harder to obtain an accurate reading of mammograms. It also increases a woman’s risk of developing breast cancer.

However, questions remain about what women should do with that information. In fact, recent research suggests that actual risk of death from breast cancer is not increased for women with denser breast tissue.

Despite a lack of certainty about how dense breast tissue affects health outcomes, a handful of states have mandated that providers discuss breast density with women. On April 1, California will become the fifth state with a breast density notification law in place. Similar bills have been introduced in other states.

At the federal level, the Breast Density and Mammography Reporting Act was introduced in Congress in 2011, but never made it out of committee. It, too, would require that women be told about breast density, the correlation with cancer, and that they might benefit from supplemental screening tests.

It’s not clear, however, if additional tests would even help.

The authors of a recent commentary in the medical journal Radiology note that while explaining the increased risk of cancer to women with dense breasts “seems ethical, reasonable, and appropriate,” there is little known about what additional follow-up might help those women.

They conclude that “the advocacy push to legislate mandatory reporting of breast density and possible adjunct screening for all women with heterogeneously or extremely dense breasts is far outpacing the reporting of evidence that supplemental screening may provide better outcomes for these patients.”

They also raise concerns about invasive procedures: “Because some cancers detected at screening may not go on to cause symptoms or death, additional interventions performed on these excess cancers would only increase morbidity for these patients.”

These concerns are similar to those raised about routine mammography in younger women — that more testing may increase harm to women from extra procedures, while not actually increasing survival rates.

Breast Cancer Action addressed mandatory notification laws in late 2012, coming down against such legislation:

Unfortunately, the importance of breast density is still not well understood and as a result there is no clear action for women who receive this information. Breast Cancer Action believes that medical practitioners should discuss all aspects of a woman’s health with her and we do not believe legislation is the appropriate way to address the issue of breast density. We believe resources and energy are better spent on working for better medical care and understanding the ways to prevent breast cancer in the first place.

Laura Newman, a medical journalist, has also looked at this issue. Her Patient POV blog has a couple of clear, useful posts, including “Are Dense-Breast, Right-to-Know Laws Helpful?” and “Is the Bar High Enough for Screening Breast Ultrasounds for Dense Breasts?

Where does this leave women, especially those who may be told they have dense breast tissue as a result of one of these new laws? Unfortunately, there is no clear answer right now.

February 25, 2013

CDC Releases Data on Intimate Partner Violence and Sexual Violence by Sexual Orientation

The Centers for Disease Control and Prevention (CDC) recently released the first-ever set of national data focused on intimate partner violence, sexual violence, and stalking victimization by sexual orientation.

According to the findings, lesbians and gay men experience higher rates of partner and sexual violence than do heterosexuals, and bisexual women have significantly higher lifetime prevalence rates of rape and sexual violence committed by any perpetrator (that could include an intimate partner, family member, acquaintance or stranger.)

The data, gathered from the National Intimate Partner and Sexual Violence Survey, includes responses from almost 10,000 women; here’s a FAQ about the findings and methodology.

“We know that violence affects everyone, regardless of sexual orientation. This report suggests that lesbians, gay men and bisexuals in this country suffer a heavy toll of sexual violence and stalking committed by an intimate partner,” CDC Director Tom Frieden said in a release. “While intervening and providing services are important, prevention is equally critical.”

Among the findings:

  • 43.8% of lesbian women, 61.1% of bisexual women, and 35.0% of heterosexual women had experienced rape, physical violence, and/or stalking by an intimate partner.
  • Approximately 1 in 8 lesbians (13.1%), nearly half of bisexual women (46.1%), and 1 in 6 heterosexual women (17.4%) have been raped in their lifetime (translating to about 214,000 lesbians, 1.5 million bisexual women, and 19 million heterosexual women).
  • 1 in 3 bisexual women and 1 in 6 heterosexual women (15.5%) have experienced stalking victimization at some point during their lifetime. (Numbers were too small to be reliable for lesbian women.)
  • More than one-third of lesbians (36.3%), over half of bisexual women (55.1%), and more than one-quarter of heterosexual women (29.8%) have been slapped, pushed, or shoved by an intimate partner at some point in their lifetime.
  • 23.6% of heterosexual women, 29.4% of lesbian women, and 49.3% of bisexual women had experienced severe physical violence by an intimate partner (e.g., hit with fist or something hard, slammed against something, or beaten).
  • The majority of women who reported experiencing sexual violence, regardless of their sexual orientation, reported that they were victimized by male perpetrators. Most bisexual and heterosexual women (89.5% and 98.7%, respectively) reported having only male perpetrators of intimate partner violence.

Neither the full report nor the sexual orientation report provide information about intimate partner violence related to gender identity, although transgender women and men may be more likely to experience severe partner violence. The CDC notes that the Department of Health and Human Services is working on “developing standardized measures of sexual orientation and gender identity” to include in national surveys like this one in order to collect better data.

The National Coalition of Anti-Violence Programs provides some related information in its report, “Lesbian, Gay, Bisexual, Transgender, Queer, and HIV-Affected Intimate Partner Violence, 2011,” using data collected from member and affiliate programs — this limits the data, though, to LGBTQH-identified people who actually sought help from one of the programs.

It’s fairly clear, as the CDC explains, that “more research as well as ongoing data collection is needed,” and that violence against non-heterosexual, non-cisgender populations remains a major concern.

Meanwhile, House Republicans last week introduced their own version of the Violence Against Women Act without provisions for LGBT, Native American, and immigrant populations. We’re still waiting for Congress to do the right thing and pass an inclusive version.

Related: No Country for All Women: Holding Up Violence Against Women Act

February 7, 2013

New Study Shows Excellent Outcomes in Birth Centers

More than 9 out of 10 women (94%) who entered labor planning a birth center birth achieved a vaginal birth

According to the CDC, in 2009, 98.9 percent of all U.S. births were in hospitals, while only 1.1 percent took place elsewhere.

Many women, however, wish to give birth in an environment that is more homelike, or want to reduce their likelihood of experiencing many of the interventions that have become very common in hospitals, such as continuous electronic fetal monitoring, induction of labor, and cesarean section.

Of the non-hospital births documented in 2009, 27.6 percent (just over 12,000 births) took place in freestanding birth centers – an option for women interested in giving birth with trained professionals outside of hospital obstetrics units. At birth centers, midwives generally provided prenatal, birth and postpartum care.

Now, there’s a large new study showing that birth centers are a safe option for both mothers and babies, reaffirming safety findings from previous research.

The study, published in the Journal of Midwifery & Women’s Health, looked at data from U.S. birth centers to assess outcomes for women and babies, including the need for a hospital transfer, mode of birth, complications, and deaths from 2007 through 2010.

The study is referred to as the National Birth Study II (NBSII); the research is an update of the National Birth Center Study conducted by Judith Rooks and colleagues and published in 1989.

The study gathered data from member organizations of the American Association of Birth Centers; 79 birth centers took part, with 59 of those sending data for the complete study period. The analysis included 15,574 women who planned and were eligible for a birth center birth at the onset of labor.

What does “eligible” mean in this context? Pregnancies considered medically low-risk: single-baby deliveries; pregnancies that went to full-term; and no breeches or medical/obstetric risk factors that required cesarean, continuous electronic fetal monitory, or labor induction.

Among the findings:

  • Of the women admitted to the birth center in labor, 87.6 percent did give birth there. The rest (12.4 percent) were transferred to the hospital. Most of the transfers were considered non-emergencies and occurred because of prolonged labor or arrest of labor. Just 1.9 percent of women or newborns required emergency transfer. Women who had never given birth before accounted for most (81.6 percent) of the transfers.
  • A few women (4.5 percent) planned to give birth at a center but were not able to, for issues such as breech, premature membrane rupture, or the woman’s choice.
  • Most of the births (92.3 percent) for all women who planned a birth center birth were head-first, spontaneous vaginal births. The mode of birth data includes women who transferred to a hospital as well — 1.2 percent ended up with an assisted vacuum or forceps birth, and 6.1 percent ended up having a cesarean birth.
  • There were no maternal deaths.
  • Women can mostly expect care from Certified Nurse-Midwives at AABC birth centers. Most of the care providers in the study were CNMs (80 percent, in 63 of the birth centers); Certified Professional Midwives or Licensed Midwives provided care in 11 of the centers (14 percent). In five of the centers, care was delivered by mixed teams of these providers.

There are some things the study can’t tell us, such as the outcomes at non-AABC birth centers and at AABC centers that don’t report their data to the AABC registry, and outcomes for women attempting vaginal birth after a prior cesarean (because most birth centers do not support it).

The NBSII study found a rate of 6.1 percent for cesareans. The authors looked at the cost savings related to reducing cesareans, and conclude, “Had this same group of 15,574 low-risk women been cared for in a hospital, an additional 2,934 cesarean births could be expected.”

They base this comparison on national rates of cesareans in low-risk women, currently reported at 26.5 percent (derived from data reported on birth certificates).

“Given the increased payments for facility services for cesarean birth compared with vaginal birth in the hospital,” the researchers wrote, “the lower cesarean birth rate potentially saved an additional $4,487,524. In total, one could expect a potential savings in costs for facility services of more than $30 million for these 15,574 births.”

I had some questions about whether the 26.5 percent figure was the best comparison group (versus older data with a lower rate), so I emailed the study authors, who responded: “It is not a perfect comparison, because this pool of low-risk women from birth certificate data may not be as stringently selected as women screened for birth center eligibility. But it is the best estimate we have for low-risk women being cared for in hospitals.” [We can discuss this issue in more detail in the comments if anyone is interested.]

Without a perfect comparison, we can still safely assume that the rate of cesarean is pretty low for women who qualify for AABC birth center births. It’s also fair to assume that very few women at AABC birth centers require emergency transfer to a hospital, and that the vast majority (almost 80 percent) of women who qualify for birth center care do end up giving birth there and being discharged to home.

There were no maternal deaths recorded in the study, and low fetal/neonatal death rates — the researchers found an intrapartum fetal mortality rate for women who were admitted to the birth center in labor of 0.47/1,000, and a neonatal mortality rate excluding lethal anomalies of 0.40/1,000. From this, we can conclude that AABC birth centers are a reasonably safe choice for low-risk women.

On Feb. 13, the American Association of Birth Centers and the American College of Nurse-Midwives are holding a Congressional briefing focused on the role of midwives and birth centers in potentially affecting health care costs and outcomes (such as cesarean rates). More information and registration are available here.

For more information, here a Q&A about the study. Visit Science & Sensibility for an interview with one of the study’s authors.

Plus: “It took more than two decades of labor,” writes Julie Deardorff in the Chicago Tribune, “but Illinois is finally poised to permit its first free-standing birth center, an alternative model of care for low-risk pregnant women who want to deliver in a homey environment with a reduced chance of medical interventions.”

Read about the pilot program and steps supporters took, along with the Illinois Department of Public Health, to negotiate with hospitals and doctors.

January 30, 2013

Evidence-Based Health Information: Resources from Cochrane Collaboration and CUE

If you spend any time reading about evidence-based medicine, eventually you are going to hear someone mention a “Cochrane” review. These reviews take a systematic look at the research on a health topic, and try to provide answers to questions about best practices.

The Cochrane Collaboration is the international non-profit organization that produces these reviews and works to spread the findings to health care providers and patients. There’s a helpful newcomers’ guide to introduce people to Cochrane, and the video below provides some history and context for the organization.

The United States Cochrane Center, one of 14 centers around the world, is based at Johns Hopkins Bloomberg School of Public Health in Maryland. In addition to performing evidence reviews, the USCC also runs Consumers United for Evidence-based Health Care (CUE), a coalition of advocacy groups working to provide consumers with access to evidence-based information about health. Our Bodies Ourselves is a member organization.

CUE offers an online course on understanding evidence-based healthcare topics, such as research design, statistics, and other topics.

The video below offers more explanation, and features Zobeida Bonilla, who works on OBOS’s Latina Health Initiative.

Meeting Dispatch: Resources from the CUE/Cochrane/Campbell Colloquium - Links to sources of evidence-based information, critiques of health journalism, info on pharmaceutical company payments to doctors, and more, collected from the 2010 joint meeting of CUE and the Cochrane and Campbell Collaborations.

January 18, 2013

Fixing Persistent Liability Concerns in Maternity Care: We Can Do It!

by Carol Sakala, Director of Programs, Childbirth Connection

One of most commonly cited barriers to improving maternity care is the risk of providers and hospitals being held liable for bad outcomes. Whether it is reining in overuse of tests and procedures, honoring women’s preferences, or increasing interdisciplinary collaboration, good ideas often cannot move forward once the issue of liability is raised.

If we cannot make progress toward more evidence-based, woman-centered care because of liability concerns, then the liability system is functioning poorly. But what are the aims of a high-functioning liability system? Is it just to avoid lawsuits and hold liability insurance premiums down?

In our new report, Maternity Care and Liability, we hold 25 possible liability reforms up to a framework that addresses the needs and interests of all of the system stakeholders: those who deliver care, those who pay for care, and most importantly, the women and newborns who receive care.

We developed this framework based on maternity care and liability studies and with the input of clinicians, legal scholars, consumer advocates, policy makers, and others. For each possible reform, we asked whether it does or would likely:

  • promote safe, high-quality maternity care that is consistent with best evidence and minimizes avoidable harm
  • minimize maternity professionals’ liability-associated fear and unhappiness
  • avoid incentives for defensive maternity practice
  • foster access to high-value liability insurance policies for all maternity caregivers without restriction or surcharge for care supported by best evidence
  • implement effective measures to address immediate concerns when women and newborns sustain injury, and provide rapid, fair, efficient compensation
  • assist families with responsibility for costly care of infants or women with long-term disabilities in a timely manner and with minimal legal expense
  • minimize the costs associated with the liability system

The proposed framework has the potential to move discourse and policy forward. When options for reform are held up to criteria in the framework, many that have been widely implemented do not appear to meet any of the criteria. Most notably, the best available evidence shows that tort reforms fare poorly against these aims, despite the fact that they are the most widely advocated and enacted liability reforms.

On the other hand, various reforms have the potential to be win-win-win solutions for women and newborns, providers, and payers. Strategies are needed both to prevent harm and ensure that it is rare and to respond appropriately to harm or claims of harm when they occur. For preventing negligent injury and related lawsuits, these reforms include rigorous quality improvement programs and shared decision making initiatives.

A series of recent reports clarifies the “business case” for quality improvement initiatives: successful programs with strong leadership are achieving better care, better health outcomes, and rapid substantial declines in liability claims, payouts, and premiums. Among redress approaches, disclosure and apology programs were the most promising, but have not yet been evaluated in maternity care.

The report includes summary tables with the full list of more promising and less promising strategies assessed and their demonstrated or plausible impact on the various areas addressed in the framework.

To achieve the high-performing maternity care system that stakeholders need, we cannot allow longstanding liability concerns to continue to rankle. By seeking guidance from the best available evidence about the nature of liability problems in maternity care and the effectiveness of possible solutions, we can move constructively beyond belief and entrenched positions.

It is time to pilot and evaluate the most promising strategies and scale up those that are effective, beginning with routine maternity care quality improvement initiatives. They have the potential to transform the quality and value of maternity care, and to ensure that maternity care work offers the joy and honor that draws talented, passionate individuals to the profession and keeps them caring for women, babies, and families.

For the full report, a set of 10 fact sheets, links to three related open-access Women’s Health Issues articles and an invited commentary from legal scholars Sara Rosenbaum and William Sage, and other resources, please visit

This entry was originally posted at Transforming Maternity Care and is republished with permission.

Carol Sakala, director of programs at Childbirth Connection, is a long-time contributor to “Our Bodies, Ourselves.” She has worked on maternity care issues as an advocate, educator, researcher, author, and policy analyst for more than 25 years, with a continuous focus on meeting the needs of childbearing women and their families.

January 16, 2013

When Pregnancy is a Crime: Arrests, Forced Interventions in the Name of Public Health

Although this January marks the 40th anniversary of the landmark Supreme Court decision legalizing abortion, we know that there is still much work to be done to ensure reproductive justice for all women.

The Guttmacher Institute reports that 2012 saw the second highest number of abortion restrictions enacted in a single year; the Center for Reproductive Justice addresses each state in this report.

Among the provisions ultimately defeated were “fetal personhood” bills in Mississippi and Oklahoma. But the notion that fetuses should be protected from the women carrying them has resulted in the restriction and punishment of women across America.

Lynn Paltrow, executive director of National Advocates for Pregnant Women, and Jeanne Flavin, a professor of sociology at Fordham University and chair of NAPW’s board, have put together an extremely interesting and important study: “Arrests of and Forced Interventions on Pregnant Women in the United States, 1973–2005: Implications for Women’s Legal Status and Public Health.”

Paltrow and Flavin (who is also the author of the 2008 book “Our Bodies, Our Crimes: The Policing of Women’s Reproduction in America“) tried to identify and examine U.S. cases from 1973, the year of Roe v. Wade, through 2005, in which a medical or government authority tried or succeeded in stripping a woman’s autonomy because of pregnancy. The study appears in the Journal of Health Politics, Policy and Law.

These cases could have involved threat of or actual arrest, incarceration, or increased prison/jail time; detention in a hospital, treatment program, or mental institution; or forced medical intervention. Descriptive detail of several cases is provided, along with summary statistics on the findings.

Looking at legal, medical and other sources, Paltrow and Flavin analyzed 413 cases, which they speculate are “a substantial undercount,” because cases were difficult to identify and some sources referred to additional cases.

The data reveals substantial racial, income and geographic disparities. While almost every state had multiple cases, the regions with the most were the south (56 percent) and midwest (22 percent). These cases disproportionately targeted black women (52 percent of cases overall, and 72 percent of cases in the south), and 71 percent involved low-income women (enough so that they qualified for indigent defense).

Most women who faced criminal charges were charged with felonies; a greater percentage of black women (85 percent) were charged with felonies than white women (71 percent).

The authors explore how these disparities are interlinked with disparities in drug laws, disproportionate application of criminal laws, and outdated stereotypes about cocaine use (such as the “crack baby” myth).

The vast majority of the cases — 84 percent — involved allegations of illegal drug use. In the remaining cases, “women were deprived of their liberty based on claims that they had not obtained prenatal care, had mental illness, or had gestational diabetes, or because they had suffered a pregnancy loss.”

Although concern for the health of the fetus/infant is typically offered as a reason for increased scrutiny or detainment of pregnant women, in 64 percent of the cases there was no reported health issue cited in the allegation.

Chillingly, most cases were reported by people in so-called “helping professions”: health care providers (41 percent), social workers (12 percent), and hospital, child protective services, or police personnel (17 percent). Health care providers reported black women at a higher rate (48 percent) than white women (27 percent).

As the authors point out:

Due in part, no doubt, to the strong public health opposition to such measures, no state legislature has ever passed a law making it a crime for a woman to go to term in spite of a drug problem, nor has any state passed a law that would make women liable for the outcome of their pregnancies. Similarly, no state legislature has amended its criminal laws to make its child abuse laws applicable to pregnant women in relationship to the eggs, embryos, or fetuses that women carry, nurture, and sustain. No state has rewritten its drug delivery or distribution laws to apply to the transfer of drugs through the umbilical cord. To date no state has adopted a personhood measure, and no law exists at the state or federal level that generally exempts pregnant women from the full protection afforded by federal and state constitutions.

In other words, nothing about existing law should make women subject to such persecution. They also note that public health groups have observed that targeting pregnant women may lead to women avoiding medical care or having unwanted abortions to avoid increased and punitive scrutiny.

Paltrow and Flavin also highlight these cases in the context of proposed personhood laws, which would give fetuses individual rights and potentially could lead to increased prosecutions of women. They authors note that they have identified “more than two hundred cases initiated against pregnant women since 2005 that also overwhelmingly rest on the claim of separate rights for fertilized eggs, embryos, and fetuses.”

Opponents to personhood laws have cautioned that such measures could lead to forced medical interventions on pregnant women along with possible punishment for miscarriages and stillbirths. While personhood proponents often dismiss these warnings as scare tactics, the research shows there is good reason to be concerned.

Paltrow and Flavin conclude with a call for change:

In light of these continued efforts and our findings, we challenge health care providers, law enforcement and child welfare officials, social workers, judges, and policy makers to examine the role they play in the arrests and detentions of and forced interventions on pregnant women. We call on these same people to develop and support only those policies that are grounded in empirical evidence, that in practice will actually advance the health, rights, and dignity of pregnant women and their children, and that will not perpetuate or exacerbate America’s long and continuing history of institutionalized racism.

Finally, our study provides compelling reasons for people who value pregnant women, whether they support or oppose abortion, to work together against personhood and related measures so women can be assured that on becoming pregnant they will retain their civil and human rights.

The whole article is well worth a read if you can get a copy. The abstract is freely available online.

December 19, 2012

Some Doctors Use Risky Drug, Aiming to Shape Girls’ Genitals and Behaviors

by Alice Dreger

Dr. Mark Sloan, a pediatrician based in northern California, has written a very helpful overview of a controversial fetal engineering intervention: prenatal dexamethasone for pregnant women considered at risk of giving birth to a daughter with congenital adrenal hyperplasia (CAH). The article has been posted on the Our Bodies Ourselves website .

Although CAH is relatively rare, the use of this prenatal intervention should interest and concern all women’s health advocates for two reasons:

  • This fetal intervention has been pushed through the use of highly problematic sexist and heterosexist stereotypes.
  • The unscientific and unethical ways in which the intervention has been deployed send up all sorts of red flags with regard to patient safety and patients’ rights to informed consent.

CAH is a serious inborn endocrine disease; newborns are screened for it, and people who have it usually require lifelong hormonal management. One “side effect” of CAH is atypical (different from average) sex development in some females.

In an effort to prevent that atypical sex development, some doctors have offered prenatal dexamethasone, a synthetic steroid, to pregnant women identified through genetic analysis as being at risk of having a child with CAH. Giving a pregnant woman dexamethasone cannot prevent CAH or cure her offspring of CAH. The intervention is offered only in an attempt to ensure typical sex development in the offspring who are genetic females.

A genetic female fetus with CAH may develop differently from average females because CAH can result in high levels of masculinizing hormones. The process is called virilization, because it leaves a female skewed more toward the middle or even the male end of the genital development spectrum. (For an animated primer on genital development, click here.)

A female with CAH may be born with a large clitoris, even one that looks something like a penis; her labia may be joined like a scrotum; and her vagina and urethra in some cases will form joined together, which can put her at increased risk for infection and, at sexual maturity, difficulties with intercourse and giving birth.

Although in theory ensuring typical genital development may sound reasonable, in practice, this off-label use of dexamethasone has been a high-risk game. For the drug to work, doctors must give it starting by about week 7 of fetal life, before the genitals sexually differentiate. At this early stage, doctors cannot know if the woman is carrying a male or female fetus or whether the fetus even has CAH.

Only about 10 percent of the fetuses exposed will actually turn out to be females with CAH, meaning about 90 percent of those exposed will bear all the risk of fetal biochemical engineering with no chance to benefit.

As Dr. Sloan explains, the CAH-affected population of girls and women also shows signs of having their brains “virilized” during development. They are more likely than non-CAH girls to be tomboyish, and more likely to grow up to be lesbian, bisexual, or to identify as male in terms of their gender. (This population contributes to the idea that gender identity and sexual orientation have a biological component.)

I find it disturbing that the chief clinical-researcher proponent of the intervention has indicated that she’s interested in seeing if the intervention can “successfully” prevent this “behavioral masculinization” — in other words, she’s interested in seeing whether the fetal intervention can lower the rates of tomboyism, lesbianism, and bisexuality in this population.

As University of Michigan pediatric psychologist David Sandberg told Time magazine, “Maybe this gives clinicians the idea that the treatment goal is normalizing behavior. To say you want a girl to be less masculine is not a reasonable goal of clinical care.” (I agree.)

Most troublingly, as Dr. Sloan notes in his article, there has been shockingly little study of what this intervention does to the exposed children’s health.

After nearly 30 years of use, we have stunningly little data on efficacy and safety on this off-label use. It appears that, in many cases, women have been offered this drug without the protections of being enrolled in formal studies, after being lured into the intervention with claims that it “has been found safe for mother and child.”

Dr. Sloan discusses a paper I recently authored on this matter with my colleagues Ellen Feder, PhD, of American University, and Anne Tamar-Mattis, JD, of Advocates for Informed Choice. I encourage you to read Dr. Sloan’s article, and then, if you want to learn more about how this history unfolded, read our article, which is available for free download.

I also encourage you to read the “Dex Diaries” series I have mounted at There you’ll find a series of short essays unpacking this story from a personal point of view.

Kiira Triea (who recently died of cancer) wrote there about her own experience of having been changed in the womb; Fran Howell has relayed about how hard it is to watch this after herself being exposed to DES in the womb; Ellen Feder has expressed sympathy for the poorly informed mothers; Aron Sousa has analyzed the game that has apparently been played here with regard to federal funding; and Anne Tamar-Mattis has reported on the real silent majority of doctors who are troubled by how this population has historically been treated.

Finally, I encourage you to watch the videos at The Interface Project, where real people born with uncommon forms of sex development explain why no body is shameful.

Alice Dreger is Professor of Clinical Medical Humanities and Bioethics at Northwestern University’s Feinberg School of Medicine. Her personal website is, and you can follow her on Twitter @AliceDreger.

December 12, 2012

The Benefits and Harms of Routine Mammograms

The topic of routine screening mammography has become extremely controversial in recent years, especially following publication of a 2009 evidence review and subsequent U.S. Preventive Services Task Force recommendation that mammography be considered on an individual basis for women in their 40s, rather than automatically recommending mammograms for all women in that age group.

A new study published in the New England Journal of Medicine adds to the questioning of routine mammograms, concluding that “whatever the mortality benefit, breast-cancer screening involved a substantial harm of excess detection of additional early-stage cancers that was not matched by a reduction in late-stage cancers.”

The authors looked at data on how many women age 40 or older had screening mammograms and the incidence of early and late stage breast cancers. The assumption is that if widespread mammography is really helping to catch cancers at earlier, presumably more treatable stages, we’ll see fewer of those late stage breast cancers.

What they actually found was a large increase in detection of early cases (122 per 100,000 women), but a much smaller decrease (8 per 100,000 women) in late cases.

If mammograms were simply shifting diagnosis earlier, they should have seen about the same number for the increase in early cases and decrease in later cases. Instead, it resulted in diagnosis of numerous extra early cases that might not have progressed to more serious disease and would be considered over-diagnosis (with the corresponding over-treatment).

The researchers conclude that “the excess detection attributable to mammography in the United States involved more than 1.3 million women in the past 30 years.”

The authors did find that the death rate attributable to breast cancer had decreased over the last three decades, but they suggest that improvements in treatment over the last few decades may be primarily responsible.

As Dr. Diana Petiti, former vice chair of the USPSTF, explained in an email exchange:

Not all breast cancers detected by mammography would have caused a lump. Some breast cancers detected by mammography (we don’t know how many) revert to normal. Some breast cancers detected by mammography (we don’t know how many) don’t grow to the size of a lump. Some breast cancers detected by mammography (we don’t know how many) grow so slowly, they would not cause a lump in the forseeable lifespan of a woman.

Further not all lumps found by a woman (without mammography) would have caused death from breast cancer. Some breast cancers found as lumps (without mammography) are cured by treatment. Some breast cancers found as lumps (without mammography) grow so slowly that they never cause death due to breast cancer (which occurs because the cancer spreads). Some breast cancers found as lumps (with or without mammography) occur so late in life that something else causes death before the breast cancer spreads and causes death.

The newest data suggests that a not-small percentage of the breast cancers detected by mammography (without a lump) would not have killed the woman from breast cancer had it not been found.

While this is a complicated topic, this New York Times op-ed by Dr. H. Gilbert Welch, one of the authors of study published in NEJM, does a reasonable job of explaining it clearly. Welch, a professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice and an author of “Overdiagnosed: Making People Sick in the Pursuit of Health,” includes this call for change:

What should be done? First and foremost, tell the truth: woman really do have a choice. While no one can dismiss the possibility that screening may help a tiny number of women, there’s no doubt that it leads many, many more to be treated for breast cancer unnecessarily. Women have to decide for themselves about the benefit and harms.

But health care providers can also do better. They can look less hard for tiny cancers and precancers and put more effort into differentiating between consequential and inconsequential cancers. We must redesign screening protocols to reduce overdiagnosis or stop population-wide screening completely.

Dr. David Newman, an emergency room physician in New York City and author of the book “Hippocrates Shadow: Secrets from the House of Medicine,” tackles the controversy head-on in a column titled ”Ignoring the Science on Mammograms“:

For years now, doctors like myself have known that screening mammography doesn’t save lives, or else saves so few that the harms far outweigh the benefits. Neither I nor my colleagues have a crystal ball, and we are not smarter than others who have looked at this issue. We simply read the results of the many mammography trials that have been conducted over the years. But the trial results were unpopular and did not fit with a broadly accepted ideology—early detection—which has, ironically, failed (ovarian, prostate cancer) as often as it has succeeded (cervical cancer, perhaps colon cancer).

More bluntly, the trial results threatened a mammogram economy, a marketplace sustained by invasive therapies to vanquish microscopic clumps of questionable threat, and by an endless parade of procedures and pictures to investigate the falsely positive results that more than half of women endure. And inexplicably, since the publication of these trial results challenging the value of screening mammograms, hundreds of millions of public dollars have been dedicated to ensuring mammogram access, and the test has become a war cry for cancer advocacy. Why? Because experience deludes: radiologists diagnose, surgeons cut, pathologists examine, oncologists treat, and women survive.

Newman also notes that mammography is not the only area of medicine ripe for questioning:

It is normally troubling to see an observational study posing questions asked and answered by higher science. But in this case the research may help society to emerge from a fog that has clouded not just the approach to data on screening mammography, but also the approach to health care in the United States. In a system drowning in costs, and at enormous expense, we have systematically ignored virtually identical data challenging the effectiveness of cardiac stents, robot surgeries, prostate cancer screening, back operations, countless prescription medicines, and more.

To further explore this topic, listen to this WBUR Boston (NPR) segment with Dr. Welch, Judy Norsigian, OBOS founder and executive director, and Dr. Otis Brawley, chief medical officer at the American Cancer Society. Norsigian also wrote a column for WBUR’s Cognoscenti section, “Do Screening Mammograms Do More Harm Than Good?

December 12, 2012

Do Screening Mammograms Do More Harm Than Good?

A sweeping U.S. study published on Nov. 22, 2012 in the New England Journal of Medicine shows that mammograms have done surprisingly little to catch deadly cancers before they spread. At the same time, they have led more than a million women to be treated for growths that never would have threatened their lives. 

Women over 40 are routinely advised to have yearly mammograms, and it’s widely believed that having one is key to protecting a woman’s health.

Although experts agree that diagnostic mammograms are beneficial (cases where there is a breast lump or other symptoms), there is much controversy about screening mammograms, which are performed on women with no signs of cancer. Mammograms detect breast cancer, although many people believe mistakenly that they prevent breast cancer. We now know that the mortality benefits remain quite small.

Eight trials performed in the United States, Canada and Europe have evaluated the ability of screening mammograms to decrease the death rate from breast cancer, as well as overall mortality. Looking at the overall death rate, not just death from breast cancer, is essential, because this approach also evaluates whether the screening test and any subsequent treatment may be causing other harms.

Overall, the early studies showed a 30 percent reduction in the risk of dying from breast cancer in women who were screened by mammography. In 2001, a critical review of all eight trials by the Cochrane Collaboration found that six of them were sufficiently flawed to invalidate their results. The Cochrane Collaboration then pooled the results of the two remaining studies and found no evidence to support the use of screening mammography.

The U.S. Preventive Services Task Force (USPSTF) evaluated the trials also. Although recognizing many of the same flaws, the USPSTF felt only one trial was sufficiently flawed to be invalidated. They pooled the results of the remaining trials and found a 16 percent reduction in the risk of dying of breast cancer in the women in the screened group.

The meta-analysis published in 2006 by the Cochrane Collaboration confirmed that screening does slightly reduce breast cancer mortality, but that it also leads to over-diagnosis and overtreatment of breast cancer. They concluded:

(F)or every 2000 women invited for screening throughout 10 years, one will have her life prolonged. In addition, 10 healthy women, who would not have been diagnosed if there had not been screening, will be diagnosed as breast cancer patients and will be treated unnecessarily. It is thus not clear whether screening does more good than harm.

In a recent issue of the New England Journal of Medicine, Dr. Archie Bleyer and Dr. Gilbert Welch summarized the latest analyses as follows:

Despite substantial increases in the number of cases of early-stage breast cancer detected, screening mammography has only marginally reduced the rate at which women present with advanced cancer.

And this is the key to meaningful breast cancer screening — that we reduce the rate at which women have to be treated for late stage cancer.

When the data for women under 40 were studied (these are women who generally don’t get regular mammograms), Dr. Welch and Bleyer wrote:

There was a larger relative reduction in mortality among women who were not exposed to screening mammography than among those who were exposed. We are left to conclude, as others have, that the good news in breast cancer — decreasing mortality — must largely be the result of improved treatment, not screening.

Dr. Susan Love, a long time clinician and researcher, would like to see less emphasis on screening and more focus on cancer prevention and treatment for the most aggressive cancers. (Roughly 15 percent to 20 percent of breast cancers are deadly.)

“There are still 40,000 women dying every year,” Dr. Love notes. “Even with screening, the bad cancers are still bad.”

As Donald Berry, a biostatistician at M.D. Anderson Cancer Center in Houston, has pointed out:

Most breast cancers are not lethal, however found. Screening mammograms preferentially find cancers that are slowly growing, and those are the ones that are seldom deadly. Getting something noxious out of the body as soon as possible leads women to think screening saved their lives. That is most unlikely.

The challenge now is to make more widespread the use of techniques that help clinicians identify biological markers that will distinguish between the lethal and benign types of tumors. This appears to be the next big advance in reducing mortality from breast cancer.

Mammography, like other detection tools, is imperfect (it misses about 20 percent of lumps due to dense breasts and other factors). Some would consider it a very weak detection tool, and given the harms of overtreatment (for example, unnecessary chemotherapy and radiation treatments), it is not surprising that some women will want to forego screening mammography.

Women need to carefully consider these factors and decide for themselves what would be best, although friends, caregivers, and even commercial interests may tell them that having routine mammograms is the only rational choice. What really helps is knowledgeable and supportive counseling.

This article was originally posted at Cognoscenti, WBUR Boston’s ideas and opinions section, and is re-posted with permission.

November 28, 2012

CDC Releases New Data on U.S. Abortions

Each year, the Centers for Disease Control and Prevention (CDC) releases information on the number of abortions in the United States. Newly published data from 2009 shows that rates of abortion overall have decreased 5 percent since 2008 to the lowest levels since 2000. In general, rates of abortion were highest right after legalization, fell steadily in the 1980s and 1990s, and started to level off in the past decade.

It is not clear why rates have fallen. Possible contributors range from the expanded use of contraceptives and better sex education to the declining number of abortion providers and increases in restrictive abortion laws. Unintended pregnancy rates have not changed in decades – about half of all U.S. pregnancies are unintended — so that is not responsible for any decline.

As we know, many myths persist about who gets abortions and why. The following details shed some light on the topic:

  • Women in their 20s have the highest rates of abortion (ages 20–24: 27.4 abortions per 1,000 women / ages 25–29: 20.4 abortions per 1,000 women), and account for 57.1 percent of all abortions.

This doesn’t seem terribly surprising given that women in their 20s are more likely to be fertile. In addition, they are more frequently uninsured. The insurance factor likely decreases their use of the most effective birth control methods –IUDs and implants –as those methods require a visit to a health care provider.

  • The majority of women (55.3 percent) having abortions have not had a previous abortion. About 25 percent have had one previous abortion, and about 11 percent have had two previous abortions. Only about 8 percent have had three or more abortions, suggesting that the overwhelming majority of women having abortions do not fit the “using it as birth control” myth.
  • Six out of every 10 women having abortions have already had one or more children. Women very frequently say that they chose abortion in order to best be able to care for their existing families.
  • Abortions are usually performed early in pregnancy, with 64 percent done at less than eight weeks gestation, and about 92 percent done by or before 13 weeks.

There has been a clear shift to earlier abortions, with an almost 50 percent increase in abortions done at less than six weeks’ gestation. The CDC report is not able to address the reasons why; the increase may be caused by the greater availability of medication abortion (medication abortions are performed only up to 9 weeks) or an increased number of abortion laws that make later abortions more difficult to obtain.

Other points of interest:

  • Use of medication abortion continues to increase; 16.5 percent of abortions in 2009 were done medically instead of surgically, a 10 percent increase from 2008.
  • Abortion ratios (the number of abortions for every 1,000 women) decreased among non-Hispanic white women but not among women in any other racial/ethnic group.

Poor women, young women, and women of color are less likely to have access to reproductive health care services, more likely to have an unintended pregnancy, and more likely to have an abortion.

The CDC concludes its report with public health recommendations, including support for no-cost birth control. The Affordable Care Act comes close by eliminating co-pays for insured women (though employers who oppose reproductive rights are still fighting this provision), making birth control available without a co-pay for an estimated 47 million women. Here’s what the CDC has to say:

Moreover, although use of the most effective forms of reversible contraception (i.e., intrauterine devices and hormonal implants, which are as effective as sterilization at preventing unintended pregnancy ) has increased, use of these methods in the United States remains among the lowest of any developed country, and no additional progress has been made toward reducing unintended pregnancy. Research has shown that providing no-cost contraception increases use of the most effective methods and can reduce abortion rates. Removing cost as one barrier to the use of the most effective contraceptive methods might therefore be an important way to reduce the number of unintended pregnancies and consequently the number of abortions that are performed in the United States.

See our analysis of a recent study on unintended pregnancies in St. Louis for further discussion of how improved access to free birth control reduces abortions. The study is important for its role in dismantling persistent myths about contraception and abortion.

Plus: Though some members of Congress with less-than-accurate ideas about women’s bodies lost re-election, that doesn’t mean Congress is apt to back smarter policy. Let’s remind all members about the importance of access to contraception and reproductive health services. Join the Educate Congress campaign to send “Our Bodies, Ourselves” to every elected senator and representative. You’ll receive an “I Educated Congress” button (and other perks) showing you did your part!

October 16, 2012

Study: No Link Between HPV Vaccine and Girls’ Sexual Activity

In 2006, when the FDA approved the first HPV vaccine for girls and women ages 9 to 26, one of the concerns opponents expressed was that it might make young girls think it’s OK to have sex.

That’s because the HPV vaccine protects against a virus that is contracted during sexual contact; specifically, four strains of the human papillomavirus, or HPV, which can cause cervical cancer and some vaginal, vulvar, penile and throat cancers.

In Nashville, where I live, one religious leader claimed, “What we are encouraging is abstinence and sexual purity. If they have a relationship with the Lord, they will recognize that they don’t need that vaccine.”

Others made claims along the same lines — that girls who “come from good homes” don’t need the vaccine, or that it would otherwise somehow promote promiscuity.

We’ve heard a lot less of this rhetoric lately, now that the novelty of the vaccine has worn off and the initial controversy has subsided. It always seemed like a bit of a ridiculous objection, since girls who become sexually active are probably not weighing the risk of some far-off consequence like cervical cancer. 

Heck, even the notoriously conservative Family Research Council has come around to acknowledging that either through abuse or by marrying someone who is a carrier of the virus, “it is possible that even someone practicing abstinence and fidelity could benefit” from the vaccine.

Still, opponents should be pleased with this news: The journal Pediatrics published a new study this week that shows the HPV vaccination is not associated with increased sexual activity among girls.

The researchers looked back at records for almost 500 girls who received the vaccine at ages 11 or 12 compared to about 900 girls who did not get the vaccine. Then they looked at whether the girls, over the next several years, had any record of being counseled about birth control, received contraception (specifically for birth control, not for acne or irregular periods), or had a diagnosis of pregnancy or certain STIs — all markers that imply sexual activity.

The researchers found no significant difference between girls who did and did not receive the vaccine.

Of course there are some limitations to the study, such as that some girls considered unvaccinated could have been vaccinated elsewhere, and girls could have received reproductive health care at places that weren’t counted in the study. A more conclusive set of results could come from following girls in real time over the years and collecting more detail about their health care and behavior.

However, this study provides important initial information that refutes concerns about HPV leading to increased sexual activity. Future research on concerns about the vaccine, then, might be better focused on learning more about long-term safety and effectiveness questions, rather than behavioral concerns.

Now we’ll just have to wait to see if there’s equal worry over whether boys who get the HPV vaccine are more likely to be more sexually active. I wouldn’t count on it.

October 10, 2012

Birth Control Reduces Unintended Pregnancies and Abortions, So Why Do Myths Persist?

Today in “Yeah, no kidding!”: A new article in the journal Obstetrics & Gynecology reports on a study that found when women are provided with free birth control, women choose more effective long-term methods, and unintended pregnancies and abortion rates drop.

Here are the essential details from the study’s abstract (emphasis below is mine):

OBJECTIVE: To promote the use of long-acting reversible contraceptive (LARC) methods (intrauterine devices [IUDs] and implants) and provide contraception at no cost to a large cohort of participants in an effort to reduce unintended pregnancies in our region.

METHODS: We enrolled 9,256 adolescents and women at risk for unintended pregnancy into the Contraceptive CHOICE Project, a prospective cohort study of adolescents and women desiring reversible contraceptive methods. Participants were recruited from the two abortion facilities in the St. Louis region and through provider referral, advertisements, and word of mouth. Contraceptive counseling included all reversible methods but emphasized the superior effectiveness of LARC methods (IUDs and implants). All participants received the reversible contraceptive method of their choice at no cost. We analyzed abortion rates, the percentage of abortions that were repeat abortions, and teenage births.

RESULTS: We observed a significant reduction in the percentage of abortions that were repeat abortions in the St. Louis region compared with Kansas City and nonmetropolitan Missouri (P<.001). Abortion rates in the CHOICE cohort were less than half the regional and national rates (P<.001). The rate of teenage birth within the CHOICE cohort was 6.3 per 1,000, compared with the U.S. rate of 34.3 per 1,000.

CONCLUSION: We noted a clinically and statistically significant reduction in abortion rates, repeat abortions, and teenage birth rates. Unintended pregnancies may be reduced by providing no-cost contraception and promoting the most effective contraceptive methods.

The study’s researchers have set up an excellent website, The Contraceptive Choice Project, along with a YouTube video (see above) on what would happen if women had access to birth control methods that worked best for them, and the project is on Facebook. You can also read more about the findings at Women’s Health Policy Report.

While the study seems pretty intuitive — removing a major obstacle to birth control use (cost) means that more women use it and the rate of unintended pregnancies goes down — strangely enough, this argument rarely seems to convince abortion foes to support contraception.

Why is that? For starters, some conservatives are unwilling to concede that contraception lowers the rate of unintended pregnancies. As Amanda Marcotte smartly explains, their real opposition is to sex, not to reducing the number of abortions.

Anti-abortion groups have also promoted a specious argument attempting to redefine how contraception works. One provision of the Affordable Care Act requires coverage of women’s preventive services, including contraception, without cost sharing in new health plans. This provision has been decried by those who have religious objections to birth control in general, and by a segment of the anti-reproductive rights crowd that believes contraception is equivalent to abortion.

The conservative group Focus on the Family, for example, sent an alert to its supporters claiming that “the federal government is requiring both religious and secular employers to fund possible abortion-inducing drugs.” The email was sent in response to a federal judge in Missouri’s recent dismissal of a lawsuit challenging the contraception mandate of the federal health care law.

It would take you about two seconds of Googling to find many, many other examples of anti-abortion groups and individuals claiming that contraception is a form of abortion, especially if there is even the remotest possibility that the method may interfere with the implantation of a fertilized egg, which they have insisted is the case with emergency contraception.

But as The New York Times recently reported, emergency contraception (also known as the morning-after pill and marketed under the brand names of Plan B and Ella) doesn’t prevent fertilized eggs from implanting in the womb:

Rather, the pills delay ovulation, the release of eggs from ovaries that occurs before eggs are fertilized, and some pills also thicken cervical mucus so sperm have trouble swimming.

It turns out that the politically charged debate over morning-after pills and abortion, a divisive issue in this election year, is probably rooted in outdated or incorrect scientific guesses about how the pills work. Because they block creation of fertilized eggs, they would not meet abortion opponents’ definition of abortion-inducing drugs.

Medically, women aren’t considered pregnant until a fertilized egg implants, and it’s not possible to carry a pregnancy to term without successful implantation. Despite these medical definitions and standards, the belief that contraception equals abortion persists.

So, where does that leave us? Certainly findings like the St. Louis study provide important evidence of what works to reduce abortion rates, and the study bolsters our arguments for contraception access. What’s less clear, though, is what works to counter the notion that birth control = abortion.

If opponents sincerely believe this, how well do fact-based arguments work to change their minds? Have we seen any evidence of other fact-based appeals resulting in shifts in opinion? Share your thoughts in the comments.

September 26, 2012

Conversations We Shouldn’t Still Be Having: Pelvic Exams Under Anesthesia

In the October issue of the journal Obstetrics and Gynecology, a medical student writes of his discomfort with a practice many people may be surprised to learn still occurs — medical students practicing pelvic exams, without explicit consent, on women who are under anesthesia for surgery.

The student, Shawn Barnes, writes that the practice left him “ashamed.”

“For 3 weeks, four to five times a day, I was asked to, and did, perform pelvic examinations on anesthetized women, without specific consent, solely for the purpose of my education,” writes Barnes. “To my shame, I obeyed.”

He continues:

As a medical student, I am all too aware of the hierarchy that exists during training. My medical education experience has reinforced the notion that the medical student should not question the practices of those above him or her. I was very conflicted about performing an act that I felt was unethical, but owing to both the culture of medicine and my own lack of courage, I did not immediately speak out against what I was asked to do by residents and attendings.

His commentary, titled “Practicing Pelvic Examinations by Medical Students on Women Under Anesthesia: Why Not Ask First?,” is available only by subscription/purchase, or through a library, as is a related editorial in the same issue, “Pelvic Examinations Under Anesthesia: A Teachable Moment.”

Carey M.York-Best and Jeffrey L. Ecker, authors of the editorial, remark that no one knows how often these exams occur, and they point out that teaching hospitals, which are expected to train students, do ask patients for general consent for students to be involved in their care. However, they rightly note that blanket consent is inadequate when it comes to pelvic exams:

After all, consent forms at many teaching hospitals include a statement outlining the involvement of students in patient care. Yet we believe that, even if such phrases may meet the letter of recommended conduct, they often are overlooked and a few words on an already too-long form do not represent true informed consent.

Barnes also calls these forms inadequate, and he also doesn’t buy the argument that women should expect such things when they go to a teaching hospital:

We first must remember that patients tend to seek care at facilities that are geographically nearby, where their regular physician has privileges, or where their insurance is accepted. Consent forms at teaching hospitals tend to use language stating that medical students and residents may be involved in that case. That involvement is not specified.

Practicing pelvic exams on women under anesthesia purely for teaching purposes — not for the women’s medical benefit — is not a new practice. However, many may have assumed it had largely stopped, particularly after a 2003 study (which I discussed several years ago) drew a lot of attention to the issue, causing many medical schools to clarify their policies and/or seek women’s explicit consent. Several professional medical organizations have also denounced the practice.

The study was based on a 1995 survey of students at five U.S. medical schools. The researchers found that only about a third of the students thought it was “very important” to get consent prior to doing a pelvic exam. Students who had actually done an ob/gyn clerkship were even less likely to think consent was important. Almost 10 percent of those students actually responded that explicit consent was “very unimportant.” The overwhelming majority (90 percent) of the ob/gyn clerkship students had performed pelvic exams on women under anesthesia.

Back to 2012 — Barnes informs readers that as a result of a bill signed into law this past June, Hawaii (where he studies) will join California, Illinois, and Virginia in making “unconsented” pelvic examinations against the law. For those interested in learning more, his testimony is included among these documents supporting the Hawaii bill.

This may be an opportunity for advocacy in other states, where it may be possible to get similar laws passed.

September 14, 2012

Task Force Update: Routine Ovarian Cancer Screening Not Recommended for Most Women

Earlier this month, the U.S. Preventive Services Task Force reaffirmed its previous recommendation that most women don’t need routine ovarian cancer screening.

The agency looked at recent evidence to see if anything new has been published that might alter its 2004 recommendation and concluded, once again, that annual screening is likely to do more harm than good in women who do not have any symptoms, genetic markers, or other increased ovarian cancer risk factors.

The reason? Studies have shown that the current methods for regular screening — transvaginal ultrasonography or serum CA-125 testing — are not effective in reducing ovarian cancer deaths in women without increased risk.

For many women, these tests will produce incorrect results suggesting cancer, causing women to undergo unnecessary surgery in order to get confirmation. Surgery can include the removal of a healthy ovary and associated harms such as infections or blood clots.

The recommendation does not apply to women with known genetic mutations that increase their risk for ovarian cancer. The Taskforce has also produced this fact sheet that explains the rationale for the recommendation and includes information to help you decide if you should be screened.

Groups Agree with Recommendation, But Screening Still Common

The Taskforce is not alone in its findings. The American Congress of Obstetricians and Gynecologists does not recommend screening for ovarian cancer in asymptomatic women. And the American Cancer Society has stated that there is no screening test proven to be effective and accurate in early detection.

Despite the USPSTF’s 2004 recommendation against routine screening, many physicians still provide it, likely misunderstanding its utility. According to the The New York Times, based on a 2008 survey:

But some doctors continue to recommend screening anyway, and patients request it, clinging to the mistaken belief that the tests can somehow find the disease early enough to save lives. A report published in February in Annals of Internal Medicine, based on a survey of 1,088 doctors, said that about a third of them believed the screening was effective and that many routinely offered it to patients.

Research on Screening Continues

In addition to finding no new evidence supporting annual screening, and additional evidence on harms, the Task Force also notes that research continues on specific methods of screening and screening in general.

“The main gap in our knowledge,” write Taskforce members, “remains the uncertain ability to offer effective treatment of cancer at an early stage to improve the ultimate outcome.”

The recommendation, then, might change in the future if better evidence is found that screening can reduce deaths or if forms of screening are devised that can be shown to affect survival rates.

Cara Tenenbaum of the Ovarian Cancer National Alliance emphasizes that more research is needed to find better methods of screening: “The task force’s recommendation underscores how badly we need an effective screening test for ovarian cancer. Ovarian cancer is the deadliest gynecologic cancer because it often isn’t detected until the disease is in an advanced state.”

CDC Campaign Advises Women to Pay Attention to Physical Changes

The most common symptoms of ovarian cancer include bloating, pelvic or abdominal pain, trouble eating or feeling full quickly, and urinary symptoms, such as frequent or urgent urination. These symptoms could apply to a range of health issues — most of the time, they’re caused by other, less serious health issues.

The Centers for Disease Control  has created an Inside Knowledge campaign to raise awareness about gynecologic cancers. The campaigns includes fact sheets and posters in Spanish and English, and radio and television public service ads featuring women discussing the symptoms that led them to visit their health care provider. The ad below features writer and performer Jenny Allen.

CDC Inside Knowledge Campaign

 Plus: For more links to news stories and analysis, read the Women’s Health Policy Report.