You may have seen recent news coverage along the lines of “BRCA variants not tied to worse cancer outcomes.” This story refers to a recently published study about changes in the BRCA1 and BRCA2 genes that affect breast and ovarian cancer. Women with mutated versions of the genes have greater risks of breast and ovarian cancer than women with typical versions of the genes.

In the new study in the Journal of Clinical Oncology, researchers tried to figure out whether women with BRCA1 or BRCA2 mutations who do develop cancer have worse outcomes than women without the mutations. They compared records for women with breast cancer and one of the mutations with those of women with breast cancer who did not have these gene changes.

Overall, they found that women with BRCA1 mutations had similar rates of metastatic (“distant”) cancer recurrence and death as women without it. Women with BRCA2 mutations had higher risks of recurrence and death, although the risk was similar when the women got adjuvant therapy (additional treatment to help prevent recurrences). Other factors like age and stage of the cancer also made a difference.

However, this study should be interpreted with caution. Bigger studies are probably still needed to properly understand any effects of these genes on women’s cancer therapy outcomes. The similarity of outcomes between women with and without the mutations may have to do, in part, with what we have learned about therapies for women with those mutated genes – which therapies don’t work as well for them, and which therapies might be added on for better outcomes. The researchers for the current study do say that women with mutated BRCA1/2 genes were more likely to have received adjuvant therapy, and the authors were unable to look at women’s results by how much chemotherapy they received.

While women who have BRCA1/2 mutations may be advised to have earlier or more frequent cancer screenings than other women, it’s not yet completely clear who should get tested for these mutations or if women should be tested once they’re diagnosed with breast or ovarian cancer.

As we learn more about how our genes affect our cancer risks and therapy outcomes, I expect we’ll see more and more news on these topics, and it may take some time to figure out how to assess risk, guide cancer therapies, and how our outcomes change based on this knowledge. Here are a few helpful resources for this growing area of study:

• Genetics Home Reference – Cancers – information from the National Library of Medicine on genes related to a number of cancers
• General Cancer Genetics Information – information from the National Cancer Institute on genetic (hereditary) risks for cancer, gene testing, a dictionary of genetics terms, and other resources
• My Cancer Genome – information intended to help inform physicians about tumor (not hereditary) genes and their effect on cancer therapy. Disclosure: I work with the team that produces this site.

A Doctor of Psychology candidate at Deakin University in Australia who is working on her thesis about the connection between a woman’s body image and her sense of well-being contacted us with a request to share a link to the online questionnaire where women 18 and older can participate in her research.

The questionnaire will ask you about how you feel about your body, behaviors related to your body, and how you feel about yourself in general. You can complete it online and they estimate that it should take no more than 20-30 minutes to complete.

The survey includes some questions about sexual orientation, height, and weight, as well as your satisfaction with specific parts and areas of your body and how much you think you resemble your “ideal” body. The researchers do mention that “The completion of this study may result in increased self-awareness regarding your attitudes and feelings about your body, yourself, and your life. For some individuals, this self-awareness may produce…discomfort.” Information about how your responses will be kept private is also provided on the website.

A recent article in the journal Human Reproduction has attracted a fair bit of attention because it suggests a possible link between in vitro fertilization (IVF) and later increased risk of ovarian cancer.

Certain factors increase a woman’s risk of getting ovarian cancer, including a family history of reproductive cancers, personal history of cancer, certain gene mutations, increasing age, hormone replacement therapy, and infertility itself.  Right now, it’s still very hard to determine how much fertility treatments – such as the ovarian stimulation used in IVF – may contribute to increased risk.

For the current study, researchers in the Netherlands identified about nineteen thousand women with fertility problems who received in vitro fertilization, and about six thousand women who had fertility problems before IVF was in common use and so did not receive it. The researchers used questionnaires and medical and cancer records to follow the women for fourteen to sixteen years, from the time of their first IVF treatment or first infertility diagnosis.

The authors found a two-fold risk of ovarian cancer in women who had IVF. Most of this increased risk, however, was for “borderline ovarian tumors,” a noninvasive type that may require surgery but typically has a good prognosis. There was no significant difference in rates of invasive ovarian cancer between the two groups. The authors also note that even larger studies are needed to confirm or refute their findings and to examine any possible relationship between the dose of ovarian stimulation treatments and increased ovarian cancer risk.

They also make this important point:

Knowledge about the magnitude of the risks associated with ovarian stimulation is important for women considering starting or continuing IVF treatment, as well as their treating physicians.

A 2006 review of existing literature on the topic also observed “a stronger association…between fertility drug use and borderline tumors of the ovary,” but called the finding “not consistent among the available studies to date.”

See also: The Politics of Women’s Health: Egg Donation for IVF and Stem Cell Research: Time to Weigh the Risks to Women’s Health.

Escrito por Rachel; traducido del orginial en inglés Sept. 20, 2011.

OBOS has received funding to make blog entries available in Spanish. We hope to expand outreach efforts in the coming year.

Los bisfosfonatos (p.e. Fosamax, Boniva, etc.) son medicamentos para el tratamiento y la prevención de la osteoporosis en mujeres postmenopáusicas, pero hay preocupación por los posibles efectos secundarios causados por el uso de estos medicamentos por periodos largos.  Entre los posibles efectos secundarios se incluyen: fracturas atípicas de fémur (muslo), osteonecrosis (muerte de la mandíbula), y cáncer de esófago.

El otoño pasado, la FDA pidió cambios en las etiquetas de los bisfosfonatos para incluir advertencias sobre riesgos de fracturas, para explicar que no se sabe exactamente el tiempo que se debe consumir el medicamento, y recomendar que pacientes y doctores reevalúen periódicamente el uso del medicamento.

Recientemente, algunos comités de la FDA encargados de los medicamentos para la salud reproductiva y del manejo de la seguridad/riesgo de las medicinas, se reunieron para discutir el consumo extendido (>3-5 años) de bisfosfonatos, y sus posibles complicaciones.

En un documento informativo preparado para la reunión, la FDA revisó evidencias sobre estos relativamente raros pero preocupantes efectos, y concluyó: “La seguridad para el consumo prolongado de  bisfosfonatos aún no es clara, por cuanto los resultados de los estudios sobre la posible relación entre la osteonecrosis de la mandíbula, las fracturas atípicas de fémur, o el cáncer del esófago, y el uso de bisfosfonatos para la prevención y el tratamiento de la osteoporosis son conflictivos.”

La agencia concluyó que la evidencia sugiere un aumento en la incidencia de osteonecrosis de la mandíbula con un uso prolongado, especialmente de 4 años o más, pero que se necesitan estudios más profundos.  También dice, “Las fracturas atípicas….parecen tener una asociación importante con los bisfosfonatos, pero no hay actualmente consenso en cuanto a la manera como el uso acumulado de bisfosfonatos aumenta los riesgos de este tipo de fractura poco común.  Finalmente, no hay evidencia definitiva para apoyar la relación entre el cáncer de esófago y el uso prolongado de bisfosfonatos.”

En cuanto a los posibles beneficios resultantes del uso prolongado de bisfosfonatos para reducir fracturas relacionadas con la osteoporosis, la agencia no encontró beneficios evidentes.  “Los resultados sugieren que no hay ventajas de importancia en continuar usando esta medicina por más de 5 años.”

El New York Times también informa acerca de las recientes reuniones de la FDA, y destaca: “El comité convocó a más estudios para establecer la eficacia del medicamento en la meta deseada de prevenir fracturas.  Así mismo, los asesores recomendaron que la FDA examine la razón por la que el medicamento es recetado como medicina preventiva a mujeres que nunca han tenido osteoporosis.”

Para más información sobre este tema, vea nuestras previas entradas de blog, y la Red Nacional de la Salud de la Mujer (the National Women’s Health Network), la cual también pregunta si este producto debe ser comercializado y recetado como medicina preventiva para mujeres con buena salud.

Women are being sought to complete an online survey about egg donation to help inform the creation of a website to answer women’s question about the egg donation process, including medical and legal concerns.

The survey is being conducted by the organization Generations Ahead and the Health Equity Institute at San Francisco State University. Questions address work, family, and money issues, as well as what you know about egg donation.

From the organizations:

The survey only takes 15-20 minutes and it is completely anonymous. We are looking for women with all kinds of experiences to fill out this survey. They do not need to have been a donor, or even have thought about donating to participate. We would love to hear from any woman who has been even curious about the process or the money involved.

We will use the information we collect here to make sure women’s voices are inserted into this debate and to design a website to give women comprehensive, unbiased information so that they can make the best decision for themselves.

If you have any questions, or want to learn more about, please contact Sujatha Jesudason (sjesudason@generations-ahead.org) or Laura Mamo (lmamo@sfsu.edu). You can also see a description of this project at http://www.generations-ahead.org/projects/egg-donation.

For more discussion of issues related to egg donation and women’s health, see our online companion materials.

The current issue of Obstetrics and Gynecology includes a paper that examines how doctors are making use of HPV tests, including whether they are using them appropriately to assess women’s cervical cancer risk.

HPV tests are sometimes done as part of pelvic exams because of the connection between HPV and cervical cancer. Guidelines generally recommend screening for high-risk forms of HPV be done in women over age 30, and in women with abnormal pap results. HPV screening is not recommended in women 21 years old and younger because younger women are likely to get and fight off the virus without any resulting health problems.

An earlier article in a less high-profile journal, Journal of Pathology Informatics, reported similar concerns after reviewing data on HPV tests ordered from 2003-2009. Those authors found that while tests on younger women had declined, but about one in four tests were inappropriate according to the American Society for Colposcopy and Cervical Pathology guidelines.

For the current study, the authors used CDC survey data on what providers do for cervical cancer screening, including their use of HPV tests. They compared those responses to guidelines from the American Cancer Society, the American College of Obstetricians and Gynecologists, and the American Society for Colposcopy and Cervical Pathology to find out whether the providers were inappropriately testing.

Almost 60 percent of providers reported using HPV tests for “cotesting” in women younger than 30, meaning that the test was done as part of routine screening along with the pap, a use that is not recommended in that age group. For women under 30, “a positive HPV test more likely signifies a transient HPV infection that will resolve spontaneously without needing further intervention.” With a positive test result, however, these women are likely to undergo additional unnecessary testing or treatment.

Survey takers also reported doing HPV tests because women asked for them in order to know their HPV status, and explain that because HPV is so common, such screening should not be done outside of cervical cancer screening. It does not appear that providers were asked whether they talk with the patients in these cases about why an HPV test might not be useful for their care, but are encouraged to do so by the authors.

The authors also found that 31 percent of office-based health care providers and 25 percent of hospital clinics reported testing for low-risk forms of HPV which are not considered relevant to cervical cancer screening. They put it quite bluntly: “There is simply no role for low-risk HPV testing in cervical cancer screening nor any other clinical scenarios to justify its use.” Almost 13 percent of survey takers reported not being aware that there was a difference between the high and low risk tests.

They go on to write:

The continued use of low-risk HPV testing by health care providers in the United States may be driven by a combination of financial gain, test marketing, and health care provider confusion on the difference between the low-risk and high-risk tests. Eliminating the availability of the low-risk HPV test, which has no clinical indications, should be considered…

Both the study and editorial authors mention the need to address payment for the unnecessary tests, such as the additional costs/reimbursement received for adding a low-risk test to the more useful high-risk test.

In an accompanying editorial, Abuses in Human Papillomavirus DNA Testing, Dr. Phillip Castle writes about the negative effects of undergoing unnecessary testing, including anxiety, distress, and a decreased sense of sexual well-being, unnecessary procedures such as colposcopies, and the costs of extra tests and procedures. He asks:

Who is to blame, clinicians, laboratories, or the manufacturer? I suggest that they all share in the blame—the clinicians order it, the laboratories provide it, and the manufacturer makes it (ie, the low-risk HPV test). Unfortunately, it is the patient who has to live with the consequences of payment or copayments and being labeled as HPV-positive.

The Skin Deep Cosmetics Database, a free online database maintained by the Environmental Working Group, provides information on the safety and potential harms of ingredients in make-up, sunscreen, facial cleansers and moisturizers, contact lens solutions, shampoo, nail polish and remover, baby wipes, soaps, and creams, toothpaste, fragrances, and other cosmetic and skin care products.

You can browse by cosmetic category or search for the name of your favorite product to find out about possible hazards in terms of cancer risk, reproductive toxicities, and allergies. Information is also provided on companies’ animal testing policies. The directions and ingredients listed on each product label is listed, and links are provided to other similar product types and products from the same manufacturer. You can also read others comments and leave your own on specific product pages.

Because in some cases there may not be much testing data on particular ingredients, the amount of available data is labeled, such as none, limited, fair, or robust. Information is provided on whether the data come from a single or multiple animal studies (which may be of limited value for humans), or if there is strong evidence of potential harm in humans.

Sources of data used for the assessments and the methods for computing scores are provided at http://www.ewg.org/skindeep/site/about.php. Thus, you can see how the assessments and ratings are derived in a pretty transparent way. For the fellow librarian readers, yes, I sent them a suggestion about the Hazardous Substance Data Bank!

I love the idea of a database like this, because it’s often difficult to know how “safe” any particular product is. I personally don’t have the appropriate background in toxicology to assess how accurately the potential risks of common ingredients are described, so I’d love to hear from readers with that expertise. I’ll also leave it to commenters to talk about why it was necessary for the “men’s” products to be in their own segregated section of the site.

I was recently contacted by Chia-Chun Li, a doctoral candidate in nursing at the University of Texas at Austin, who is working on a study for her dissertation entitled, “Factors Affecting Sexual Function and Sexual Satisfaction among Females with or without Rectal Cancer or Gynecological Cancer.”

She is looking for women to participate in both the study group (those with cancer) and a control group (women without cancer). According to the announcement, you are eligible to participate in the study group if:

You are a female; are 18 years or order; live in U.S.; are in a relationship or married; read English; have experienced rectal cancer or gynecological cancer surgery for longer than three months; do not have a prior history of any other type of cancer; have finished postoperative chemotherapy and radiotherapy; had no postoperative complications, including wound infections, temporary bladder dysfunction, anastomosis leakage, bleeding, and ostomy complications; and are willing and able to provide information about the research questions.

You are eligible to participate in control group if:

You are a female; are 18 years or older; are in a relationship or married; read English; live in U.S.; not have a history of cancer; and are willing and able to provide information about the research questions.

Below is additional information on the study:

This study is not only for females with sexual dysfunction but also for females without any sexual dysfunction. You are encouraged to participate in this study if you feel interested in the study and are willing to provide information about the research questions.

Data will be collected by sending a packet consisting of an informed consent form, the set of questionnaires, and a $5 cash incentive and a tea bag of appreciation to your residence. If you are interested in the study, you can contact me by e-mail (chiachunli820@mail.utexas.edu) or phone (512-529-4527), and please tell me your mail address.

Your participation includes signing the informed consent form, completing the questionnaires, and returning them to me in the postage-paid envelope.

Risks to participants are considered minimal. All information about you will be kept confidential, and your name will not be connected with any information that you provide. Identification numbers associated with mail and e-mail addresses will be kept during the data collection phase for tracking purposes only.

Contact Information:
Chia-Chun Li, RN, MSN, Doctoral Candidate
The University of Texas at Austin, School of Nursing
4210 Red River #121
Austin, Texas 78751
E-mail address: chiachunli820@mail.utexas.edu
Telephone: 512-529-4527

Advisor: Lynn Rew, EdD, RN, AHN-BC, FAAN
The Denton & Louise Cooley and Family Centennial Professor
E-mail address: ellerew@mail.utexas.edu
Telephone: 512-471-7941

Readers at OBOB and on birth issues generally will know that the Wax meta-analysis on home birth generated much controversy and discussion about its methods, conclusions, and presentation, which Nature News summarizes in a recent story.

As a result of the high level of interest and debate, the American Journal of Obstetrics and Gynecology has allocated additional space to discussion of the paper, making letters to the editor, supplemental materials, and its editorial freely available to the general public for review, saying “There were a number of issues raised in the letters, many of which the panel believed were subjective and should be debated openly.”

The journal also convened a review panel to examine the paper, with the following outcomes as reported in the editorial:

…the results the panel found was slightly different from the result in the manuscript, although there was no difference in (1) the direction of the point estimate of the pooled odds ratio or (2) the overall “statistical significance” of the result. The panel made the following recommendations: (1) The Journal should publish online full summary graphs for each outcome that was assessed in the study, which will allow readers to assess the study findings better, and (2) no retraction of the article is necessary.

The editors themselves conclude, “It is clear that we need more rigorous and better designed research on this important safety issue of home birth, given the many confounding factors.”

The editorial page links to several of the letters to the editor, author replies, and supplementary data.

The supplementary materials from Wax et al, posted this February, thankfully include a type of forest plot for many of the outcomes, making it much easier to see and understand what the results were from each included paper for each variable than it was in the original publication.

by Nekose Wills | OBOS program assistant

The challenges girls face today are unlike the challenges many of us faced growing up. I’m 32, and I remember not caring about my Oscar the Grouch eyebrows, who designed my clothes, or how sexy I looked in them. Girls growing up today don’t have such freedom — they’re sexualized everywhere they look.

The SPARK Summit, held Oct. 21 at Hunter College in New York City, was an alarm, waking us up to the role we can play in bucking the status quo and giving us the tools to take on this fight. SPARK stands for Sexualization Protest: Action, Resistance, Knowledge.

The day started with opening remarks from Hunter College President Jennifer Raaband and MTV’s Amber Madison, summit host and author of “Hooking Up: A Girl’s All-Out Guide to Sex And Sexuality,” a book aimed at young women about sexual health, sexuality and relationships.

Feminist media critic Jean Kilbourne, creator of the groundbreaking “Killing Us Softly: Advertising’s Image of Women” film series, also spoke, followed by a keynote address from the actor Geena Davis. Perhaps best known for her role in the film “Thelma and Louise, ” Davis has long advocated for increasing and diversifying the presence of female characters in media aimed at children. Her presence was a welcomed reminder that not everyone in Hollywood accepts business as usual.

The SPARK Summit encouraged young women to find their voices. There were a number of workshops specifically geared toward self-expression, such as Street Theater, FlipCam Journalism, and Blogs Rock. Throughout the day, it was clear that girls are very cognizant about being sold images of who they should be, but they lack resources to actively combat those images.

Media literacy is the first step. Melissa Campbell who works on media literacy in San Francisco and founded the Manfattan Project (“real fashion, large bodies”), led the Hard-Core Media Literacy workshop. In other workshops, girls created radio spots, photography and art, and shared personal stories. They discussed topics such as street harassment and legislation that would fund media literacy and youth empowerment programs (H.R. 4925).

My favorite part of the day was the Numbers Don’t Lie panel, during which researchers presented findings on how media images and messages influence girls. Among them:

• Even in video games where women are strong, central characters, their sexualized appearance negates the effect of the character’s power — “Video Game Vixens: The Sexualization of Women and Girls in Video Games,” Elizabeth Behm-Morawitz (University of Missouri-Columbia)

• Black women are the most sexualized group in music videos. — “Sexualization in Popular Female Artists’ Music Videos: An Analysis of Race and Genre,” Jennifer Stevens Aubrey (University of Missouri-Columbia)

• Black youth consume more media than their white peers, but they are less affected by the body image ideals perpetuated — “A Woman’s Worth: How Media Use Shapes Black and White Teens’ Views of the Feminine Ideal,” L. Monique Ward (University of Michigan)

• When the media sexualizes female athletes, it negatively affects girls’ perceptions of themselves and of female athletes — “‘You Can Score With Me’: What Girls Think of Sexed-Up Media Images of Female Athletes,” Elizabeth Daniels (University of Oregon)

• Low grades can spur girls to participate more in their own sexualization — “High Heels, Low Grades? The Costs Associated With Sexualization,” Rebecca Bigler & Sarah McKenney (University of Texas, Austin)

• The attire of women and girls in G-rated movies is no different than portrayals in higher-rated movies — “General Audience or G-Porn? A Look at the Prevalence and Sexualization of Females in Film and Children’s Television programming,” Stacy Smith (University of Southern California)

I also learned that Barbie is still evil. One study — “‘I can be … Anything?’: Playing with Barbie Reduces Girls’ Career Aspirations,” by Aurora Sherman and Eileen Zurbriggen (Oregon State University and University of California, Santa Cruz) — found that playing with Barbie lessened girls’ perceptions of attainable occupations. It didn’t matter if girls played with Doctor Barbie — they still thought they could not achieve as much as when they played with Mrs. Potato Head.

The panel made me realize the extent to which girls are encouraged to see themselves as sexual objects — even girls as young as 3 can still be the toddler in a tiara.

We are told that if we just buy enough products, go on enough diets, and work hard to emulate airbrushed and Photoshopped images of girls and women, we might achieve perfection — and there’s something inherently wrong with us if we don’t dedicate ourselves to this quest. It’s time to take our sexy back.

There is nothing wrong with sexy as long as it is not forced on girls and as long as women get to define it on their own terms, not through the lens of a voyeuristic, paternalistic society.

My favorite quotes from the conference were “I am whole, not a ho!” “I am a quirky black girl and proud of it!” and, finally, “Freedom is never really won, you have to earn it in every generation.” We are trying to earn freedom for the well-being of today’s girls.

Years ago, I learned to disconnect from the constant onslaught of negative media images by consuming less. When I stopped watching music videos, especially the ones on BET, and stopped buying women’s magazines, I was much happier. There were less false images for me to compare myself with.

Those images were replaced by the women I saw on the train and on the street, who were in my life as three-dimensional people, with non-airbrushed photos and presences, with blemishes on their faces and extra fat rolls on their sides; real women, beautiful as the reality of an honest life.

The SPARK Summit was the reminder I needed that we can be who we are, with no apologies. We can replace the constant drumbeat of fake “perfection” with action, resistance and knowledge. And, most importantly, we need to have this dialogue on a continuing basis.

From the moment we put girls in front of a television, turn on the radio, drive past a billboard, or let them look at a magazine, we need to reinforce what it means to be beautiful, media literate, and critical of the world around us. I have a few young ladies I need to call.

by Karin Ringheim | Population Reference Bureau

A recent NPR story on the biological basis for the sometimes confrontational, erratic and seemingly irrational behavior of adolescents reminded me of my own experiences in raising adolescents (and gratitude that this particular stage of life is now behind me).

As Garrison Keillor recently reminded us, to be a parent is to live a life of constant silent prayer — prayer that everything will turn out all right. We know that adolescents don’t always exercise the best judgment, and now, at least, we have a better sense of why this is the case.

The Teen Brain – A Work In Progress

The physical evidence gathered from Magnetic Resonance Imaging (MRI), according to Harvard researchers Frances Jensen and David Urion, shows that the adolescent brain is only about 80 percent as developed as an adult brain.

In adolescence, the brain’s frontal lobe, responsible for such important functions as reasoning, planning and judgment, is not as well-connected to the rest of the brain by myelin, or “white matter,” as it is in an older individual. Because of the immaturity of their brains, adolescents are less capable than adults of rational thought processes.

White matter grows substantially over the course of adolescence, providing insulation that increasingly enables nerve signals to flow freely from one part of the brain to another. When the frontal lobe is fully connected to the rest of the brain, around age 25, the brain is more capable of “connecting the dots,” processing complex notions — such as that actions have consequences.

Brain development from age 5 to 20 / Source: Paul Thompson, professor of neurology, UCLA School of Medicine

Death and Disability Rates Double During Adolescence

If parents did not already intuit this, the difficulties that adolescents have in controlling their emotions and behaviors lead to a doubling in rates of death and disability during adolescence as compared to rates among younger children.

According to Ronald Dahl, Staunton Professor of Psychiatry and Pediatrics at the University of Pittsburgh Medical Center, increased risk-taking, sensation-seeking and reckless behavior lead adolescents to higher rates of traffic and other accidents, substance abuse, suicide, eating disorders, depression, violence and risky sexual behaviors.

Although Dahl does not promote a mechanistic view of biology as destiny, he does note that the life trajectories established in youth can have a major impact on later life, and it is best to alter these trajectories in a positive direction while one can.

Youth Reproductive Health: A Politically Charged Issue

Adolescents who become unintentionally pregnant or become infected with HIV are certainly in for a life-altering experience, and usually not one that will be advantageous.

For at least 15 years, reproductive health advocates have called for “youth friendly services” to enable youth who are, or intend to become sexually active, to obtain the information and services they need to remain healthy.

The concept of reproductive health services for adolescents has been, and remains politically controversial. In 2004, ideologues charged that the Global Health Conference [pdf], an international gathering of health professionals held annually in Washington D.C., would be a platform that year to advocate for youth reproductive health services, instigating a last-minute withdrawal of federal funding for the conference from the U.S. Department of Health and Human Services, the Centers for Disease Control (CDC) and the U.S. Agency for International Development (USAID).

While the conference proceeded with funding from other donors, the action had a chilling effect on some federal grantees, who swept their websites clean of any potentially damaging information. U.S. programs for youth in developing countries supported under the President’s Emergency Plan for AIDS Relief, PEPFAR, were firmly grounded in the “ABCs” — Abstain, Be faithful, use Condoms, even as domestic research showed that abstinence-only programs had no long-term health benefits.

Meanwhile, in some African countries, one in five young women is HIV positive and as many as one in two has been pregnant. In South Africa, 22 percent of young women attending antenatal care are both pregnant and HIV positive. These astounding statistics have largely been unmoved by the infusion of PEPFAR and other funding for proscriptive youth reproductive health information and services. And politically shaped policies in the United States help maintain pregnancy, birth and abortion rates among adolescents that are the highest in the developed world.

An Evidence-Based Practice

How should societies respond to the knowledge that adolescents may not be capable of obeying our pleas to “just say no,” “abstain until marriage,” or “always use a condom”?

Adolescents are capable of understanding, if not fully controlling, their own immature thought processes. They need realistic, truly “youth-friendly” tools and resources to help them make better decisions and remain healthy and safe.

If, based on brain research, adults come to view adolescence less as a period of self-centered disobedience and more as a period of innate vulnerability, we will do a better job of providing youth with comprehensive, compassionate services and education. We will do whatever we can to help them navigate this vulnerable period without becoming pregnant or HIV-positive, or undergoing an unsafely performed abortion, and if such outcomes occur, we will aim to minimize the harmful life-altering consequences.

Our obligation is to protect as best we can, those who by virtue of their not-fully-realized intellectual capacity, are less able than we previously assumed to look out for themselves.

Karin Ringheim, Ph.D., M.P.H., is a senior policy adviser at the Population Reference Bureau

Readers are invited to participate in a study being conducted by researchers at the University of North Carolina at Chapel Hill’s Eating Disorders Research Program. Participants will complete an online survey about body image and weight concerns in adult women 50 years old and and over.

From the researchers:

In contrast to extensive knowledge about body image and weight concerns in young women, we know very little about how body image and weight concerns change as women mature. We would like to develop a deep understanding of how women age 50 and above feel and think about their bodies, both in terms of appearance and function.

If you are a woman age 50 or older, we invite you to follow the link below to answer 45 questions to help us understand the concerns that women have with their body, their appearance, and their health. We feel that this is an important topic that is central to the health and well-being of a growing and influential segment of the American population and hope to use the responses to inform service development for women over 50.

Your participation in this research study can take from 10-30 minutes depending on how many open-ended questions you would like to address. We very much appreciate your time and your help in addressing this important topic.

The survey is available at https://www.surveymonkey.com/s/392VSFY, which also provides information on the privacy of participants and the study’s contact personnel and institutional review board approval.

The Institute of Medicine has published a new report, Women’s Health Research: Progress, Pitfalls, and Promise, which discusses conditions on which women’s health research has contributed to major progress (e.g. breast and cervical cancer), and areas of research in which less progress has been made to date (e.g., unintended pregnancy, maternal morbidity and mortality, lung cancer). The authors also examine issues such as whether the most appropriate research methods are being used to study women’s health, whether the findings from research are making it into clinical practice and being communicated to women in a meaningful way, and what the current gaps are in such research.

The report includes recommendations that the U.S. government should “sustain and strengthen” its focus on women’s health research and target research to populations of women with the highest disease burden. The authoring panel also recommends requiring a plan for communicating findings of federally-funded research to the public, and that a national media advisory panel of experts in women’s health be established to provide context to reporters and others related to new research.

The report can be read online for free (scroll down to the table of contents); a press release is also available.

Earlier this week, I had the privilege of attending a talk by Rebecca Skloot, author of recently published book, The Immortal Life of Henrietta Lacks.

Henrietta Lacks was a poor, Black woman whose cervical cancer cells were taken in the course of her treatment for cervical cancer at Johns Hopkins in the 1950s. Her cells were the first “immortal” cells — cells kept alive in culture – and went on to be widely used in medical research.

Henrietta’s cells were used in the development of the polio vaccine, were sent up in early space missions, and are mentioned in tens of thousands of research papers.

Rebecca Skloot’s book chronicles the history of Henrietta Lacks and her cells (dubbed “HeLa” cells), as well as Skloot’s  journey uncovering the story.

Lacks and her family never knew about the vast body of research that was being conducted using the cells, or even that the cells had been taken and used for research at all.  She and her family never benefited financially from the selling of HeLa cells. While Henrietta is long dead, her children and grandchildren still struggle to get medical care, and do not have health insurance.

In the course of her talk, Skloot read snippets of the book and discussed questions of ethics, race and class raised by the story. She talked about whether the family should be compensated, the kind of medical care Henrietta received in John Hopkins’s “colored” ward,  and the past and current use of cells and tissue from people’s biopsies and other procedures for later medical research (which may make money for biotechnology corporations). It was really interesting, and I highly recommend the book to anyone interested in these issues.

Skloot has established the Henrietta Lacks Foundation to fund scholarships and medical care for members of the Lacks family. She also blogs about her work. The text of an interview earlier this year with Skloot on NPR’s Fresh Air is available here.

When the U.S. Preventive Services Task Force (USPSTF) released new recommendations in 2009 calling for less frequent screening mammograms for women under age 50, the news caused quite a ruckus.

Many women’s health organizations, such as Our Bodies Ourselves, National Women’s Health Network and Breast Cancer Action, applauded the new guidelines — and had, in fact, been recommending the same approach for pre-menopausal women for many years. But understanding the science behind the logical, if somewhat counter-intuitive, recommendations requires a nuanced analysis.

Now, a New York Times examination of breast cancer cases explains, in very personal terms, the problems with diagnosing breast cancer — especially early detection methods, which are “prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant.”

As a result, pathologists are over-diagnosing and doctors are over-treating small growths in the breasts that are often benign.

While the initial reaction might be, “Wait, isn’t it better to treat all potential signs of cancer than leave them untreated?” the NYT does a good job explaining the very real dangers that can result. Moreover, the root problem is that we still don’t have a truly accurate diagnostic tool, and diagnosis can vary depending on one person’s reading of a tiny speck.

As the Times explains, ductal carcinoma in situ, or DCIS (also called Stage 0 or non-invasive cancer) was a rare diagnosis before the 1980s, but today more than 50,000 women per year in the United States alone are told they have DCIS. Typically the abnormal cells in the breast ducts are removed via surgery — which can result in disfiguration of the breast — along with drugs and radiation. DCIS may progress to a more invasive cancer about 30 percent of the time, according to estimates in the Times article, but in some women it can take decades to do so.

Stephanie Saul’s reporting chiefly concerns pathologists, who are responsible for determining whether cells from a biopsy are malignant:

Advances in mammography and other imaging technology over the past 30 years have meant that pathologists must render opinions on ever smaller breast lesions, some the size of a few grains of salt. Discerning the difference between some benign lesions and early stage breast cancer is a particularly challenging area of pathology, according to medical records and interviews with doctors and patients.

Diagnosing D.C.I.S. “is a 30-year history of confusion, differences of opinion and under- and overtreatment,” said Dr. Shahla Masood, the head of pathology at the University of Florida College of Medicine in Jacksonville. “There are studies that show that diagnosing these borderline breast lesions occasionally comes down to the flip of a coin.”

There is an increasing recognition of the problems, and the federal government is now financing a nationwide study of variations in breast pathology, based on concerns that 17 percent of D.C.I.S. cases identified by a commonly used needle biopsy may be misdiagnosed. Despite this, there are no mandated diagnostic standards or requirements that pathologists performing the work have any specialized expertise, meaning that the chances of getting an accurate diagnosis vary from hospital to hospital.

In the face of studies that have shown the high risk of misdiagnosis (in anywhere from 7.8 to 20 percent of cases, depending on the study), the College of American Pathologists is vowing to start a voluntary certification program for pathologists who read breast tissue. But as Saul notes, “Some pathologists have found the response to these types of studies slow and inadequate” — especially since studies going back as far as 2002 have revealed the problem.

The physical and psychological scarring that ensues is, in many cases, unnecessary — along with the potential long-term effects of radiation therapy.

Where you live and what kind of insurance coverage you have can also affect the accuracy of the diagnosis. Rural, community hospitals are more likely to have less experienced pathologists on staff. And insurers have not encouraged second opinions.

“Some insurance plans pay as little as $10 to pathologists who are performing second opinions on DCIS,” Saul notes in response to a comment left by “MK,” who made an excellent point: “If insurers had a requirement that any slides in which cancer was suspected were automatically sent to a board-certified pathologist, it would save patients having to search for a second opinion and save the insurers the cost of unnecessary treatment.”

It should be noted that percentages of misdiagnosis, as Saul reminds “MK,” includes both false negatives and false positives. Under-diagnosis and under-treatment is also an issue. The danger of a positive diagnosis, however, goes beyond whether it is false:

Fear compounds the confusion, and even though D.C.I.S. is 90 percent curable, there is growing concern that women and their doctors opt for more aggressive surgery, radiation and drug therapy than is needed.

A mastectomy is sometimes offered as an option for D.C.I.S., although experts say it is usually not advisable unless the D.C.I.S. is large or appears in several sites in the breast.

Yet more women who are faced with the diagnosis of D.C.I.S. become so fearful that they elect to have both breasts removed, often against their doctor’s recommendations.

“The patient gets paralyzed with a fear of cancer,” Dr. Masood said. “They want the breast off.”

Among women who had surgery for D.C.I.S., the rate of double mastectomy rose to 5 percent in 2005, from 2 percent in 1998, according to a study last year.

Dr. Ira J. Bleiweiss, chief of surgical pathology at Mount Sinai Medical Center in New York, said that ideally, all breast cancer diagnoses would be referred for a second opinion. He warns patients and their doctors: “Don’t rush to the operating room.”

In related news …

New Study Links Breast Cancer Risk, Household Products: Speaking of caution and prevention, a new study in Environmental Health found a higher breast cancer risk among women with higher use of household cleaning products.

The study by Silent Spring Institute was based on telephone interviews with 787 women diagnosed with breast cancer and 721 comparison women. Many of the products contain endocrine disrupting chemicals or mammary gland carcinogens, making them suspect as contributors.

There are, of course, limitations inherent to this type of study, including the potential for recall bias. Researchers recommend further study.

Julia Brody, executive director of the Silent Spring Institute, said, “When women are diagnosed with breast cancer, they often think about what happened in the past that might have contributed to the disease. As a result, it may be that women with breast cancer more accurately recall their past product use or even over-estimate it. Or, it could also be that experience with breast cancer influences beliefs about its causes. For example, women diagnosed with breast cancer are less likely to believe heredity contributes ‘a lot’, because most are the first in their family to get the disease.”

Plus: Interested in taking action — personally and politically? The Silent Spring Institute offers a number of action kits full of helpful information, including how to reduce risks in your home.

Recommendation to Revoke Avastin: An FDA advisory committee has recommended revoking approval of the drug Avastin, for which the FDA had given conditional approval in 2008 to treat breast cancer (part of an accelerated process for drugs that treat life-threatening diseases but have less than complete evidence of effectiveness).

If the FDA, which usually follows these recommendations, takes the very unusual step of revoking approval of a drug, Avastin will still be available, since it is approved for a variety of other cancers. This would leave it open to “off-label” use for breast cancer, but insurers would be reluctant to pay for it and it would no longer be part of a program that caps its annual cost to patients.

Breast Cancer Action program manager Kimberly Irish responds to the decision: “We agree with the committee’s recommendation, and we’re saddened that after all this time there’s still no good option to offer patients when current treatments have failed.” Read the written comments BCA sent to the committee here (PDF).