Earlier this month, Congress passed and the President signed into law the Prenatally and Postnatally Diagnosed Conditions Awareness Act, a bill “to amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.”

The act focuses on increasing knowledge and resources, articulating the following purposes:

• increase patient referrals to providers of key support services for women who have received a positive diagnosis for Down syndrome, or other prenatally or postnatally diagnosed conditions, as well as to provide up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes;
• strengthen existing networks of support through the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and other patient and provider outreach programs; and
• ensure that patients receive up-to-date, evidence-based information about the accuracy of the test.

Services authorized by the act may include a telephone hotline for those seeking support with regards to diagnoses, creation of a registry of those willing to adopt children with diagnoses such as Down syndrome, further education of health care providers on the issues, and expansion of other support programs.

A joint response issued by the Disability Rights Education and Defense Fund, Generations Ahead, National Women’s Health Network, Reproductive Health Technologies Project, and World Institute on Disability called the law “a positive step toward providing better information and support to pregnant women and new mothers whose fetus or newborn is diagnosed with a disability.”

The organizations also note that “With Democratic Senator Edward Kennedy as an original co-sponsor, the Act does not include anti-choice language nor restrict the ability to obtain an abortion, even though it was authored by Kansas Republican Senator Brownback, a staunch opponent of abortion.”

For further reading on this issue, our OBOS web content provides additional discussion of the politics of prenatal testing and disability rights.

Research and follow-up of egg donors has been pretty non-existent — until now. The Donor Sibling Registry, which connects and supports donor families, is conducting a survey of egg donors for the purpose of qualitative research on the long-term health effects on women.

DSR founder Wendy Kramer explains:

We at the Donor Sibling Registry are doing a study of former egg donors. Some of you may have registered on the Donor Sibling Registry and some of you have not yet, or do not intend on making yourself available for contact from families that may have used your eggs. Either way, our goal is to get a better understanding of how egg donation affects women as time goes on, as we know of no medical studies or formal research on this topic. Based on the replies, we hope to write an article for a scientific journal.

Your answers will be kept anonymous, as I will only share the collective data, and no one’s personal information. This information could be extremely valuable in pushing the medical community to further investigate how egg donation physically affects woman who donate. The questions should only take a few minutes to answer.

Go here to take the survey. Responses can be emailed directly to wendy.kramer@yahoo.com

Plus: Our Bodies, Ourselves has published a collection of articles that examine whether and how the risks of egg donation have been underplayed, and what regulations are needed to better ensure that the long-term consequences of donation are better understood and that donors are provided the information they need to give informed consent.

And here you’ll find the comments of Jennifer Schneider, M.D., who appeared before a 2007 Congressional briefing on human egg trafficking and urged Congress to mandate egg donor registers. Schneider’s daughter donated three cycles of eggs and was diagnosed at age 29 with advanced colon cancer. She died two years later. Here’s an excerpt of Schneider’s remarks:

Her death was unexplained. When she was first diagnosed, the first thing she – and I – thought of was could it have been the large doses of hormones she received for the egg retrieval. Jessica asked her oncologist, who told her that there was no evidence supporting a role of ovarian hyperstimulation in causing colon cancer.

But last year I ran across an article by Dr. Kamal Ahuja, a specialist in in vitro fertilization (IVF), that described a young woman who donated eggs for her infertile sister, and a few years later was diagnosed with advanced colon cancer and died. This got me thinking seriously about the possible role of ovarian stimulation in causing her colon cancer. I began doing a lot of reading, and communicating with specialists in the field. What I learned was very disturbing. Here is what I learned:

* Egg donors are commodities
* Long-term risks of egg donation are unknown.
* IVF clinics and researchers have a serious conflict of interest
* The government needs to intervene.

A brief report in the journal Genes & Development is generating a fair bit of media attention because it describes how a specific gene, NR5A2 (sometimes referred to as Lrh1), may play an important role in female fertility. The buzz today is on whether targeting this gene with drugs might serve as an effective contraceptive or aid in understanding infertility. Researchers found that when the gene was turned off in the ovaries (but not in other areas of the body), ovulation no longer occurred and sterility was induced.

However, it’s a little to soon to know what the results mean for human women – the experiments were conducted in mice. The team plans to study ovarian cells collected from fertility clinics to study whether different or “defective” (their word, not mine) versions of the gene are present. A piece in the Globe & Mail sums up the findings, noting that it “could potentially be blocked to prevent conception and boosted to enhance fertility.”

Other researchers are studying this gene to determine whether it might play a role in the development of breast cancer.

In mostly unrelated news, Hillary Clinton has penned a critique to the proposed HHS rule Christine mentioned in her Double Dose. The rule could allow some contraceptives to be defined as abortion and would potentially limit access to family planning services, especially for low-income individuals.

Planned Parenthood Expands its Reach: “Flush with cash, Planned Parenthood affiliates nationwide are aggressively expanding their reach, seeking to woo more affluent patients with a network of suburban clinics and huge new health centers that project a decidedly upscale image,” reports the Wall Street Journal.

Unfortunately the full story is available to subscribers only, but the WSJ health blog has a summary that includes these remarks:

Despite some critiques to the contrary, Planned Parenthood insists it’s not compromising is long-held focus on serving the poor with birth control, sexual-health care and abortions. Officials there say they take a loss of nearly $1 on each packet of birth-control pills distributed to poor women under a federal program that funds reproductive care. But they make a profit of nearly $22 on each month of pills sold to an adult who can afford to pay full price. That money helps subsidize other operations, including care for the poor as well as pursuing Planned Parenthood’s political agenda.

“It is high time we follow the population,” said Sarah Stoesz, who heads Planned Parenthood operations in three Midwest states. She recently opened three express centers in wealthy Minnesota suburbs, “in shopping centers and malls, places where women are already doing their grocery shopping, picking up their Starbucks, living their daily lives,” she said.

Pregnant in Gloucester: Concerning the 18 high school students pregnant in Gloucester, Mass, that have received national news coverage for supposedly choosing to get pregnant and raise their children together, Kelly McBride, who covers media ethics for Poynter Institute, has an excellent piece on pack journalism in search of a “pact..” Meanwhile, the high school principal who first said their was evidence of a pact defends his comments and his memory.

Plus: Courtney Macavinta of Respect RX discusses her own sex “pact” at age 15 and the cycle of disrespect that leads girls who don’t value themselves to make choices “in which the fine print (that life is about to get even harder) is written in invisible ink.”

Teen Pregnancies at 30-Year Low: Writing in the Chicago Tribune, Lisa Anderson reports on the latest pregnancy statistics released by the Guttmacher Institute.

Pregnancies — whether they end in birth, miscarriage or abortion — among women age 15 to 19 dropped to 72.2 per 1,000 women in 2004, down from a peak of 117 per 1,000 women in 1990 [...]

While some 700,000 women age 15 to 19 become pregnant every year, the rate has declined 36 percent since it peaked in 1990. The rate of abortions among teens also plummeted, to 19.8 per 1,000 women in 2004 from a high of 43.5 per 1,000 in 1988.

But researchers are keeping a close eye on the numbers, as there are some signs that the drop may be reversing:

Despite decades of improvement and for reasons yet unknown, there is statistical evidence that the drop in pregnancy rates, the age of first sexual activity and contraceptive use among teens stalled after 2001.

The exception may be in the teen birthrate. After a 14-year decline, the birthrate, meaning the number of live births, among women age 15 to 19 rose 3 percent in 2006 to 41.9 per 1,000 women from 40.5 per 1,000 women in 2005, according to the U.S. Centers for Disease Control and Prevention. Until more data are compiled, it is unclear whether the 2006 uptick in births was an isolated blip or the harbinger of a more significant and negative change on the teen reproductive landscape, according to David Landry, a senior research associate at the Guttmacher Institute.

Mandating Insurance Coverage for Psychiatric Ailments: Illinois will become the 17th state to mandate insurance coverage for treatment of anorexia and bulimia, assuming the governor signs a bill recently approved by the state Legislature.

Bonnie Miller Rubin and Ashley Wiehle of the Chicago Tribune write:

The measure is part of a larger national debate about addressing inequities in insurance coverage between psychiatric and physical ailments.

More than 12 million Americans, mostly young women, have eating disorders in their lifetime, according to the National Association of Anorexia Nervosa and Associated Disorders. The organization ranked risk of death as higher with anorexia than with any other mental illness. Among patients with anorexia, almost half of all deaths are suicides, according to ANAD. Yet many insurers balk at covering the tab, which can run as high as $2,500 a day.

“I’ve met so many parents who have had to refinance their homes,” said Rep. Fred Crespo (D-Hoffman Estates), one of the bill’s sponsors.

But others cite the financial cost of such a law. Richard Cauchi, health program director for the National Conference of State Legislatures, said Illinois has taken “an unusual action” for 2008, when the trend is to move away from mandates on business and governments.

“There’s more pressure now to repeal and restrict mandates than to enact new ones,” he said..

“Neglected Infections of Poverty”: “Despite plummeting mortality rates for most infectious diseases over the last century, a group of largely overlooked bacterial, viral and parasitic infections is still plaguing the nation’s poor, according to a report released this week,” writes Wendy Hansen in the L.A. Times.

“Many of the diseases are typically associated with tropical developing countries but are surprisingly common in poor regions of the United States, according to the analysis, published in the Public Library of Science journal PLoS Neglected Tropical Diseases.”

The study’s author, Dr. Peter Hotez, chairman of George Washington University’s department of microbiology, immunology and tropical disease, says there are 24 diseases affecting at least 300,000 Americans, and possibly millions. Poverty-stricken regions, including Appalachia, inner cities, the Mississippi Delta and the border with Mexico, are the areas most severely affected.

Will Women Give Hormone Maker a Second Chance?: “Can Wyeth win back the 40 million Premarin and Prempro users it’s lost since 2002 — along with $1 billion a year in profits — with a new menopause drug? Or will the once-bitten women who have filed more than 5,000 lawsuits claiming the hormones gave them cancer feel fooled twice?” asks Martha Rosenberg at AlterNet.org, in this look at Wyeth’s hope of marketing Pristiq as the first nonhormonal treatment for menopause symptoms.

Don’t Ask, Don’t Tell Affects Women More: “The Army and Air Force discharged a disproportionate number of women in 2007 under the “don’t ask, don’t tell” policy that prohibits openly gay people from serving in the military, according to Pentagon statistics gathered by an advocacy group,” reports The New York Times.

While women make up 14 percent of Army personnel, 46 percent of those discharged under the policy last year were women. And while 20 percent of Air Force personnel are women, 49 percent of its discharges under the policy last year were women. By comparison for 2006, about 35 percent of the Army’s discharges and 36 percent of the Air Force’s were women, according to the statistics.

The information was gathered under a Freedom of Information Act request by the Servicemembers Legal Defense Network, a policy advocacy organization.

Gardasil Not Approved for Older Women: “U.S. regulators have told Merck & Co they cannot yet approve Merck’s application to expand marketing of its cervical cancer vaccine Gardasil to an older group of women, the drugmaker said on Wednesday,” reports Reuters.

“Merck had applied for the use of Gardasil in women ages 27 through 45. The U.S. Food and Drug Administration said in a letter regarding the application that it has completed its review and there are ‘issues’ that preclude approval within the expected review time frame, Merck said.”

Exercise as a Tonic for Aging: The New York Times reports on an updated series of physical activity recommendations for older adults from the American Heart Association and the American College of Sports Medicine, which are expected to match new federal activity guidelines due in October from the United States Health and Human Services Department.

“Contrary to what many active adults seem to believe, physical fitness does not end with aerobics,” writes Jane Brody. “Strength training has long been advocated by the National Institute on Aging, and the heart association has finally recognized the added value of muscle strength to reduce stress on joints, bones and soft tissues; enhance stability and reduce the risk of falls; and increase the ability to meet the demands of daily life, like rising from a chair, climbing stairs and opening jars.”

Court Denies Bid to Sterilize Mentally Disabled Woman: “Disability rights advocates and medical ethicists praised a precedent-setting ruling Friday by the Illinois Appellate Court denying a bid to sterilize a mentally disabled woman against her will,” reports the Chicago Tribune.

The woman’s guardian had sought a tubal ligation, but a three-judge panel ruled unanimously that the guardian did not prove sterilization was in the woman’s best interest. There are “less intrusive and less psychologically harmful [birth-control] alternatives,” read the opinion.

“It’s extraordinarily significant” because it guarantees the disabled a court hearing, said Katie Watson, a Northwestern University professor who wrote a friend-of-the-court brief in the case on behalf of about two dozen medical ethicists.

“In the past, this was a decision that could be made between a guardian and a doctor,” she said. “The decision must be moved into the light.”

Choosy Mothers Choose … Well, Not This C-Section Story: Time magazine’s “Choosy Mothers Choose Caesareans” is problematic on multiple levels — but mainly for overplaying the role of women requesting elective c-sections as the reason being the skyrocketing caesarean rate, and downplaying the risks involved. Lucinda Marshall rocks with a great response.

Plus: For more information, read “Maternal Request for Cesarean Delivery: Myth or Reality?” — a summary of the latest research and articles compiled by Our Bodies Ourselves.

Fundamentalism Comes Under Public Health Scrutiny: From Women’s eNews: “Amid the growing influence of fundamentalism around the world, Asian researchers say women in almost any affected religion — Christian, Muslim or Hindu — pay the price in eroded health and safety.” Read the story by Swapna Majumdar, a journalist based in New Delhi.

Take Two on Time Off: “This year marks the 15th anniversary of the landmark Family and Medical Leave Act, which made it possible for many workers to take unpaid job-protected time off to care for their newborn children or sick relatives,” writes Nancy Trejos at the Washington Post. “But instead of celebrating, workers’ rights advocates and the Bush administration are battling over what would be the most sweeping revisions ever to the law.”

Trejos notes that a “fierce debate” has been sparked by some proposed changes, which have yielded more than 4,000 public comments:

Under proposals being considered by the Labor Department, workers would have to tell their bosses in advance when they take nonemergency leave, instead of being able to wait until two days after they left. They would have to undergo “fitness-for-duty” evaluations if they took intermittent leave for medical reasons and wanted to return to physically demanding jobs. To prove that they had a “serious health condition,” they would have to visit a health-care provider at least twice within a month of falling ill. What’s more, employers would have the right to contact health-care providers who authorized leave.

Botox and Disrespect of Aging: “The 2,775,176 Botox treatments in 2007, at a cost of more than $1 billion dollars neatly expresses the desperation some people feel about physical signs of aging,” writes Ronni Bennett, before going on to discuss recent studies on the potential dangers of Botox and the FDA’s make-your-own-personal-judgment advice to consumers.

Coming of Age on Antidepressants: Writing in The New York Times, Richard A. Friedman, MD, reflects on the remarks of a 31-year-old patient who has been treated for depression since she was a teen: “I’ve grown up on medication,” she said. “I don’t have a sense of who I really am without it.”

The patient credited the medication with saving her life, “but now she was raising an equally fundamental question: how the drugs might have affected her psychological development and core identity.” Friedman continues:

Her experience is far from unique. Since their emergence in the late 1980s, serotonin reuptake inhibitors like Prozac and Zoloft have become some of the most widely prescribed drugs in the world, for depressed teenagers as well as adults. Because depression is often a chronic, recurring illness, there are certain to be many young people, like Julie, who are coming of age on these newer antidepressants.

We know a lot about the course of untreated depression, probably more than we do about very long-term antidepressant use in this population.

Plus: Friedman and Norman Rosenthal, MD, were both guests on NPR’s “Talk of the Nation” on Thursday, discussing the physical and psychological effects of taking antidepressants long-term.

Ireland Releases Study on Menopause: Ireland’s Minister for Health, Mary Harney, published “Menopause and Me,” hailed as the largest ever study in Ireland on awareness, attitudes and experiences of menopause, according to The Irish Times. Ireland’s Women’s Health Council carried out the study, which is available online here.

Performance Artist Killed on Peace Trip: An Italian performance artist, Pippa Bacca, 33, was raped and killed by a driver who offered her a ride just three weeks into a hitchhiking trip from Italy to the Balkans to the Middle East. Bacca and her friend, Silvia Moro, 37, both wore wedding dresses as part of their “Brides on Tour” project, created to send a message of peace and “marriage between different peoples and nations.” Elisabetta Povoledo writes in The New York Times:

The performance piece, a trip through nearly a dozen countries in the Balkans and the Middle East, many of them ravaged by war recently, was meant to underscore that “by overcoming differences and lowering the level of conflict,” individuals and cultures could come together, Ms. Moro said in a telephone interview. “Meeting people was the key.”

Accepting rides with strangers was crucial to the art performance’s success, Ms. Moro said. The artists’ statement at their Web site, bridesontour.fotoup.net, says, “Hitchhiking is choosing to have faith in other human beings, and man, like a small god, rewards those who have faith in him.”

Ms. Moro explained: “It’s a poor way of traveling, and we wanted to underscore that you can’t foster love between people if you’re holed up in business class. You can’t go to, say, Mauritius, and eat pasta. You won’t understand people until you break bread with them, because it’s in the small diversities that you find similarities.”

How much would you pay to know your genetic makeup? And once you had the information, how might it affect your behavior? Or your anxiety levels?

Anna Gosline gets to all that and more in this comprehensive story she wrote for the L.A. Times about the fall-out from her own genetic test. Gosline discovered that she has a higher-than-average lifetime risk for late-onset Alzheimer’s disease — a risk that wasn’t entirely a surprise, since her maternal grandmother had Alzheimer’s disease. Gosline writes:

But something about the plain and simple statement of my own genetic fact seemed shocking and terrifying.

“Genetic information has a special power,” says Dr. Robert Green, professor of neurology, genetics and epidemiology at Boston University School of Medicine. “It has a feel of fate about it, a sense of inevitability, that sense that, ‘Oh, you are marked.’ “

But what, exactly, does that “mark” mean? And what about the accuracy? The article breaks down how the test works, what kind of information a client can expect to learn and how companies — which charge from $1,000 to $2,500 for the results — are trying to stay up to date with new research.

Gosline used the most expensive company, Navigenics (The New York Times covered the opening of Navigenics’ temporary New York showroom under the headline, “On the Retail Front, Another Shop in SoHo for the Person Who Has Everything.”) Other companies include the Google-backed start-up 23andMe and Iceland’s deCODEme.

To the story’s credit, Gosline includes the opinions of a number of critics of genetic testing, beginning with Dr. Muin Khoury, director of the National Office of Public Health Genomics at the Centers for Disease Control and Prevention in Atlanta, who offers this advice:

“If someone asks me, shall I take [the test],” Khoury says, “I would say ‘No, you don’t need it. Tell me about your family history. If you have a family history of skin cancer, stay away from the sun. If you have osteoporosis, take calcium supplements.’ We know what to do.”

Dr. H. Gilbert Welch, professor of medicine at Dartmouth Medical School, is also wary. A longtime critic of what he sees as an epidemic of over-diagnosis in the U.S. healthcare system, he thinks genome scans will make matters worse, especially because most doctors have little genetics training.

“I think a broad-spread application of personalized genetic testing would create havoc and would likely lead to more harm than good,” he says. “It will make people anxious, and it would probably push doctors to more aggressive interventions simply because of lack of information and a feeling they had to do something.”

Then there’s the issue of privacy. In the U.S., there is still only limited protection from genetic discrimination. The Genetic Information Nondiscrimination Act, which would protect individuals against discrimination based on their genetic information when it comes to health insurance and employment, is stalled in the Senate, though it has passed in the House of Representatives.

OK, that part is really freaky and got me thinking about “Gattaca.”

The Washington, D.C.-based Genetics and Public Policy Center is also pushing for the Food and Drug Administration to regulate consumer genetic testing.

The center’s director Kathy Hudson says that though these three genome-scanning companies appear scientifically stringent and transparent in their messages, there are no laws to prevent businesses from over-selling results or providing inappropriate tests, as some have done.

In separate sidebar pieces, Gosline explains genotyping chip technology — “small glass or silicon platforms have made quick and easy work of simultaneously analyzing hundreds of thousands of genetic variations that exist in the human genome” — and looks at studies that tracked whether learning of a genetic risk for a particular disease led to a change in human behavior.

Readers’ comments also add value to the debate. A woman who was adopted in 1953 said she has no family history to guide her, so she paid $1,000 to 23AndMe and now has “clues as to what health issues might be ahead for me in life.”

Another commenter predicts that health-insurance companies will someday deny coverage based on one’s genetics and concludes, “All the more reason for single-payor [sic], government provided health insurance.”

So, readers, do you want to take the test?

The American College of Obstetricians and Gynecologists has issued an opinion statement on surrogate motherhood [PDF] through its Committee on Ethics. The piece addresses types of surrogacy, public policy, major arguments for and against surrogacy arrangements, and responsibilities of physicians when attending to such arrangements.

Among the guidances:

• “Because of the risks inherent in surrogacy arrangements, such arrangements should be considered only in the case of infertility or serious health-related needs, not for convenience alone.”
• “A physician may justifiably decline to participate in initiating surrogacy arrangements for personal, ethical, or medical reasons.”
• “The pregnant woman should be the sole source of consent regarding clinical intervention and management of the pregnancy, labor, and delivery.”
• “The obstetrician must make recommendations that are in the best interests of the pregnant woman and her fetus, regardless of prior agreements between her and the intended parents.”
• “The intended parents may have access to the patient’s medical information only with the pregnant woman’s explicit consent.”

The entire report is an informative read, summing up a host of surrogacy-related ethical concerns. I found it particularly interesting as it touches on physician refusal, the rights of the surrogate to make her own medical decisions, privacy, convenience vs. medical necessity, and many other topics that arise in discussions of other reproductive rights.

Sex Ed Battles: Via the Washington Post, in Montgomery County, Md., opponents of a new sex-education curriculum approved by the school board last year — the first in the district to address sexual orientation as a classroom topic — are challenging the part that describes homosexuality as innate, insisting it doesn’t meet the “factually accurate” standard set by Maryland state law.

Opponents also object to references made during the condom instruction to anal and oral sex. Their attorney said those passages violate a state prohibition against material that “portrays erotic techniques of sexual intercourse.” The case is being heard by Circuit Court Judge William Rowan III, who is expected to issue a written ruling. Here’s more background.

And in Park Ridge, Ill., there’s controversy over a freshman high school biology curriculum at Maine South High School (which happens to be where Hillary Clinton spent her senior year) that teaches about birth control. The lessons follow state code, said School Superintendent Joel Morris, but some parents are less than enthusiastic, especially about the part describing how to put on a condom.

Choice Stories: Courtney Martin reviews a new anthology, “Choice: True Stories of Birth, Contraception, Infertility, Adoption, Single Parenthood, and Abortion,” edited by Karen E. Bender and Nina de Gramont.

“In consistently original voices and beautifully crafted writing (not always such a hallmark of anthologies),” writes Martin, “these stories enfold you in a dark but deeply compelling fog and remind you of how totally powerful and pained we sometimes are.”

Birth Trends: The Washington Post looks at college-educated couples who have decided to have children while they’re still in their 20s, which strikes some as very young; according to demographic research, college-educated mothers are usually about 30 when they give birth to their first child.

“This is very significant data. It’s giving numbers to a trend people have been only inferring,” said Stephanie Coontz, director of research at the Council on Contemporary Families. The data, she said, show that “there is this increasing divergence of highly educated women and less-educated women.”

Politics and Misogyny: You probably already read Bob Herbert’s amazing column this week, but if somehow you missed it, go now for honest truths like this: “If there was ever a story that deserved more coverage by the news media, it’s the dark persistence of misogyny in America. Sexism in its myriad destructive forms permeates nearly every aspect of American life. For many men, it’s the true national pastime, much bigger than baseball or football.”

The Chris Matthews Fairy Tale: Echidne of the Snakes offers an all-inclusive take-down of Chris Matthews’ sexist comments about Hillary Clinton and other female politicians and authors. You might call Matthews’ apology a wee bit “incomplete.”

The Correct Clinton Stereotype: In an op-ed at the L.A. Times about gender stereotypes, author Susan Faludi describes a recent experience she had watching women skillfully and persistently handle their mothers’ medical needs and relates it to attitudes toward Hillary Clinton.

Global Population Under a Democratic President: “If a Democratic president enters the White House about a year from now, some experts in family planning anticipate a boon for mankind: a greater effort by the United States government to restrain world population growth,” writes Christian Science Monitor columnist David R. Francis in this piece on reversing the global gag rule.

Doctors Respond to Email: Ever see a health email take on a life of its own? Tara Parker-Pope at the New York Times reports on a controversial message that has circulated online for years urging women to request a special blood test (CA-125) to screen themselves for ovarian cancer. A group of doctors has responded with their own email that they hope will soon be communicated as far and wide.

Deep Freeze: As I write, it’s 2 degrees in Chicago — and it’s expected to plunge to -20 below with wind chill. According to The New York Times, I have no excuse not to stick to my running. (Damn.) Of course, anyone with a fireplace and a good winter brew can easily convince me otherwise … Hope you all are warm!

Last week, the New York Times published the article, “A Genetic Test That Very Few Need, Marketed to the Masses,” reporting on a direct-to-consumer advertising campaign by Myriad Genetics.

Myriad is pushing its “BRACAnalysis” genetic test in these ads, which costs $3,120 according to the news report, and is described online as “A genetic test for hereditary breast and ovarian cancer.”

BRACAnalysis isn’t truly a test for breast and ovarian cancer, however, but a test for mutations in the BRCA1 and BRCA2 genes that are believed to be associated with some cases of breast and ovarian cancer. Your genes, however, are not the only factor in determining your cancer risk. Furthermore, these mutations are estimated to be related to only about 10 percent of breast cancer cases, and it is estimated that only about 2 percent of women have family risk factors that would suggest that genetic testing might be worthwhile.

In other words, the vast majority of women who will see these commercials would not benefit from obtaining this test. While a doctor would still have to be consulted for a patient to receive the test, that is not a guarantee of appropriate use of the testing or adequate counseling of patients about their options.

Myriad previously conducted a similar campaign in other markets in 2002-2003, which resulted in providers reporting being asked more frequently about the tests and ordering them more often, despite acknowledging that they lacked sufficient information to counsel patients about inherited breast and ovarian cancers and testing.

Even when increased family risk suggests that genetic testing might be warranted, women who find that they have a BRCA1 or BRCA2 mutation have surprisingly few options for preventing future cancer. In a recommendation statement on genetic testing for breast and ovarian cancers, the U.S. Preventive Services Task Force states:

Among women with BRCA1 or BRCA2 mutations, prophylactic mastectomy or oophorectomy decreases the incidence of breast and ovarian cancer; there is inadequate evidence for mortality benefits. Chemoprevention with selective estrogen receptor modulators may decrease incidence of estrogen receptor-positive breast cancer; however, it is also associated with adverse effects, such as pulmonary embolism, deep venous thrombosis, and endometrial cancer. Most breast cancer associated with BRCA1 mutations is estrogen receptor-negative and thus is not prevented by tamoxifen. Intensive screening with mammography has poor sensitivity, and there is no evidence of benefit of intensive screening for women with BRCA1 or BRCA2 gene mutations. Magnetic resonance imaging (MRI) may detect more cases of cancer, but the effect on mortality is not clear.

What does that mean in plain language? If you have one of these genetic mutations, you could choose to have your breasts or ovaries removed now, even though the evidence is limited that this would decrease your risk of death. You could up your frequency of cancer screening, but that may not detect every case of cancer or affect your lifespan. You could choose to take certain drugs, but the effects of the drugs themselves may be life-threatening.

What is the purpose, then, of so many women being targeted by Myriad’s commercials? Ellen T. Matloff, director of cancer genetic counseling at the Yale Cancer Center, summed it up neatly for the New York Times piece:

“It really preys on the fears of our society, and one of those fears is getting breast cancer.”

Essentially, Myriad is attempting to convince women to be afraid of what lurks in their genes (understanding that many women are not knowledgeable about this topic), and to convince them to seek this expensive testing, ultimately benefiting Myriad’s bottom line if not the women themselves.

Connecticut’s Attorney General is sufficiently suspicious of this strategy as to have launched an inquiry, stating, “We’ve determined that there’s enough serious and significant doubt about the accuracy of some of their claims that we feel a strong need to investigate.”

For related information from Our Bodies, Ourselves, see “Genetic Testing and Inherited Risk,” “One Woman’s Story with BRCA1,” and this recent news item suggesting that breast cancer patients with and without the mutations have similar survival rates.