If America really valued mothers, we wouldn’t treat them like this – Updated by Ezra Klein on May 10, 2015


Last Mother’s Day, a video from Cardstore.com went viral. In it, the company pretended to recruit for a seemingly impossible job. They told applicants that the job requires you to stand all day and put in 135 hours a week — or more. It means you have to work nights and weekends. There’s no time off, and the hours increase around Thanksgiving, Christmas and other holidays. The position requires skill in finance, medicine and food preparation. It entails intense physical labor and a total collapse in your personal life. Oh, and it pays absolutely nothing.

They called the job director of operations, but its real title, of course, is mom.

Cardstore.com sent the video out into the world video with the hashtag #WorldsToughestJob. But here’s the thing about the world’s toughest job: a lot of the people doing it also hold another job, or even a few other jobs. More than two-thirds of mothers hold jobs outside the home, and mothers are the primary earners in 40 percent of families. But in America, public policy makes balancing those jobs a lot harder than it has to be.

America is, for instance, one of the only countries in the world that doesn’t guarantee paid maternity leave. This map from UCLA’s World Policy Analysis Center tells the tale well: our maternal leave policies make us look more like Papua New Guinea than, say, any country in Western Europe:

Paid_leavemothers

UCLA

Of course, it would be easier for mothers to balance work inside and outside the home if fathers could spend more time parenting. But public policy is even less friendly to that prospect:

Paid_leave_fathers

UCLA

Sweden is an example of what it looks like when a country really believes that being a parent is a difficult and important job that needs to be supported by public policy. They guarantee parents 480 paid days per child. Those days can be allocated as the parents see fit until the child is eight years old. In order to encourage fathers to take on more parenting responsibilities, 60 of those days are specifically given to the father.

The United States, by contrast, is an example of what it look like when a country merely pays lip service to the importance of parents. While a handful of states, like California, offer modest paid maternal leave, there’s no federal guarantee of either paid maternal or paternal leave. We make mothers choose between spending a month with their newborn child or keeping a roof over their child’s head. That’s not how it looks in countries that value the work mothers do.

The US doesn’t even ensure that parents get leave that they can use for child care. For instance, a lot of parents (sadly) use vacation days when they need a day off to care for a sick child. But in the US — unlike in every other developed nation — there is no guarantee of paid vacation days:

Paid_vacation

Center for Economic and Policy Research

Nor, of course, is there a guarantee of paid sick days. The Center for Economic and Policy Research looked at guaranteed paid leave policies for workers who got sick with a 5-day flu and a 50-day cancer treatment. The distinction was meaningless in the US, though, as both situations presented the same answer: no guarantee of paid time off at all.

Article continues:

http://www.vox.com/2014/5/12/5708362/how-america-makes-the-worldshardestjob-even-harder

Clint Smith: How to raise a black son in America – Ted Talk Filmed March 2015 at TED2015


As kids, we all get advice from parents and teachers that seems strange, even confusing. This was crystallized one night for a young Clint Smith, who was playing with water guns in a dark parking lot with his white friends. In a heartfelt piece, the poet paints the scene of his father’s furious and fearful response.

‘Chilling out’ at an egg freezing party – By Regan Morris BBC News, Los Angeles 16 March 2015 Last updated at 19:44 ET


The timing of having a child has always been complicated for working women, but egg freezing parties hope to capture their attention by promoting advances in technology alongside cocktails and mingling.

EggBanxx at Crosby Hotel in September

Drinks, hors d’oeuvres and learning about egg vitrification

This swanky cocktail party at the Beverly Wilshire is packed with women. It’s the very hotel where Julia Roberts’ Pretty Woman told Richard Gere’s character she wouldn’t settle for being a mistress – that she wanted the fairy tale.

While it’s no longer a Hollywood film set, the young women here also want it all – and they are refusing to settle when it comes to their fertility.

These women are at a “Let’s Chill” cocktail party to learn about egg freezing, this one sponsored by a firm that provides the service.

Aside from cocktails and some fancy hors d’oeuvres, the party includes a presentation from a company representative, personal testimony from women who’ve frozen their eggs, a panel with top fertility doctors, as well a question and answer session and time to mingle.

“It’s pretty casual. We hope it’s fun and more laid back than being in a waiting room,” says Jay Palumbo, the vice president of patient care at EggBanxx, which is hosting the party.

EggBanxx at Harvard Club in October

Drinks, hors d’oeuvres and learning about egg vitrification

Article continues:

Case Sparks Debate About Teen Decision Making in Health – By Kimberly Leonard Jan. 22, 2015 | 12:01 a.m. EST


A Connecticut teen is being given chemotherapy against her will.

Some doctors say the decision is made in the best interest of the patient, and not based on maturity.

Some doctors say the decision is made in the best interest of the patient, and not based on maturity.

Some doctors say the decision is made in the best interest of the patient, and not based on maturity.

Only months before turning 18, a Connecticut girl has been told by her state’s supreme court that she must undergo chemotherapy against her wishes in a case that has drawn national headlines and raised questions about what rights minors truly have over their bodies.

The teen, identified in court papers only as “Cassandra C.,” was removed from her home in December after she missed medical appointments for Hodgkin’s lymphoma, or cancer of the lymph system. The Leukemia and Lymphoma Society says the disease is highly curable, with an 85 percent chance of survival. Doctors proposed a six-month chemotherapy course. Without it, she is likely to die in two years.

But Cassandra balked at the treatment and said she didn’t want to go through with it. Social services became involved and, after an emergency legal appeal, the state’s high court said on Jan. 8 the teen could be forced to receive the therapy.

`Article continues:

http://www.usnews.com/news/articles/2015/01/22/case-sparks-debate-about-teen-decision-making-in-health?int=a14709

Banning club drugs hasn’t made users safer A grieving mom hopes her plan will – by Mona Lalwani on October 3, 2014 


Dede Goldsmith was asleep in a Kentucky hotel room, on the last night of a three-week trip with her husband, when her phone rang. It was 2:15 a.m. “I’m really sorry, Mrs. Goldsmith,” a voice on the other end said. “Shelley has been taken to the hospital.”

Shelley was her 19-year-old daughter. A student at the University of Virginia, she had taken a trip with her friends to see Dada Life, a Swedish electro-house duo, at a Washington, DC, club. At the concert, Shelley wasn’t feeling well. She went to the bar for water. “Call 911,” she said, before she collapsed.

“Her friend kept saying ‘sorry,’ like she was already gone,” Goldsmith said later of the phone call. The friend told her that Shelley had taken Molly that night.

“Who’s Molly?” Goldsmith asked.

Earlier that evening, August 30, 2013, Shelley had boarded a rented party bus, complete with couches and booming electronic dance music, to make the 120-mile trip from Charlottesville, Virginia, to the concert. Thirty-four University of Virginia students were on board. Almost everyone took a hit of Molly.

Molly is a powdered psychoactive that is supposed to be the purest, uncut form of the drug MDMA, often called ecstasy when it is in pill form. The high brings on a sense of euphoria and empathy. It stimulates the senses in a way that complements the immersive spectacle of an electronic dance music show.

“My heart says: if you’re gonna try Molly, you better make sure you know what you’re taking”“Essentially everyone on that bus was on the drug,” said Kate, one of the students on the bus. (“Kate” asked not to be identified by name.) “We got to the concert and everyone was having an amazing time.”

Shelley had taken some Molly on the bus, and then another hit at the club. When she collapsed, most of her friends assumed she had passed out from dehydration. They headed back home on the bus thinking she would be fine. Her boyfriend and a close friend stayed back, going with Shelley by ambulance to Providence Hospital, where doctors attempted to revive her.

Who’s your daddy? Study on genetic testing says parents don’t need to know – by Joseph Brownstein June 23, 2014 5:00AM ET


Screen Shot 2014-06-23 at Jun 23, 2014 2.52

As more research is done on the human genome and more people seek genetic testing, researchers, physicians, genetic counselors and ethicists are struggling with the issues of how to present the new information to patients, and whether certain findings should be presented at all.

A paper published Monday in the leading journal Pediatrics tackles a controversial discovery that can come out of genetic testing — when a child’s biological parent turns out to be someone else.

Whether that occurs through a switch at the hospital, a swap of embryos or sexual infidelity, genetic testing can bring such previously unknown facts to light. No matter which situation has taken place, it presents a difficult ethical dilemma for medical professionals and one likely to become more common as genetic testing grows ever more widespread. It has triggered a fierce and complex debate as to whether parents — or those who might find out they are not true parents — have a right to know such information.

In the Pediatrics paper, ethicists at the University of Pennsylvania argue in favor of letting the parents of patients know that these facts can generally be found in the course of a test, but will not be revealed to them.

“Because there isn’t a national consensus,” said co-author Autumn Fiester, director of education in the Department of Medical Ethics and Health Policy at Penn, “getting a proactive policy that could prevent the harms that are taking place seemed like an imperative to address.”

Without such a policy, Fiester said, parents might be confronted after the tests are run with being told that there’s something they may need to know about their parentage.

“Dangle something like that in front of any human being, and they’re going to be coerced to have that information, even if they will rue the day when they said yes,” she said.

Current guidelines issued by the American Academy of Pediatrics and the American College of Medical Genetics and Genomics (ACMG) advise speaking to patients about the issue of incidental findings, but do not recommend disclosure or nondisclosure.

“I don’t think we’re ready to make a decision, but I think it’s really important for people and health care providers to be aware of this, to discuss it when testing is done, and to discuss as a community whether we can come to some sort of agreement,” said Dr. Gail Herman, president of the ACMG and principal investigator for the Center for Molecular and Human Genetics at Nationwide Children’s Hospital in Columbus, Ohio.

Because there isn’t a national consensus, getting a proactive policy that could prevent the harms that are taking place seemed like an imperative to address.

Autumn Fiester

Penn’s Department of Medical Ethics

Some in the field applauded the Penn paper for advancing a position, but said further discussion is needed.

While nondisclosure may be a good idea for avoiding family problems, there need to be some exceptions, said Arthur Caplan, professor of bioethics at NYU Langone Medical Center and formerly of Penn. For example, lab technicians may see DNA that leads them to suspect rape or incest. This type of finding might need to be reported because of the possibility of sexual abuse.

“I don’t agree that you would never reveal anything,” said Caplan. But, he added, “I absolutely agree that every program needs to have in place a firm policy about disclosure of this and other incidental findings.”

Others disagree entirely with the idea of universal nondisclosure, arguing that disclosure should be the default rather than leaving the patient and parents ignorant.

“You’d have to prove in this case why one would not disclose,” said Kathy Kinlaw, associate director of the Emory Center for Ethics.

Given the rapid progress in technology, she said, more testing could be done later that reveals nonparentage and erodes someone’s trust in the medical system. Additionally, she said, nondisclosure policies would lead to an increase in parental testing, requiring an extra step and additional cost for already available information.

Kinlaw also expressed concerns that while the stated goal of the policy is to allow people more choice in what they learn, it removes other options. This can occur when gene testing reveals a switch in the nursery or IVF clinic and the baby is the biological child of other parents.

“If there are other biological parents involved, why do we assume they don’t have any right to pursue custody?” said Kinlaw. “Maybe we don’t need to make that kind of paternalistic assumption.”

Even though you say you won’t disclose, you may need to warn the authorities. I don’t agree that you would never reveal anything … I absolutely agree that every program needs to have in place a firm policy about disclosure of this and other incidental findings.

Arthur Caplan

NYU Langone Medical Center

Juli Bollinger, who trained as a genetic counselor and is part of the Berman Institute’s Genetics & Public Policy Center at Johns Hopkins University, questioned the practicality of universal nondisclosure, in part because even if policymakers agree on the basic concept, it’s difficult to implement because of how results are handled and how often people might choose to get tested.

Though a number of reasons exist for children having medical conditions that had been unexpected according to testing of their parents’ genes, suspicions of nonparentage can arise. And further, with new rule changes from the Center for Medicare and Medicaid Services passed earlier this year, patients will have access to their original lab reports and can have results reinterpreted on their own — possibly discovering things that weren’t previously disclosed.

“You can’t not see what’s in front of you. You can choose not to … interpret, but it’s there,” said Bollinger. “I just have a hard time with a blanket policy on this, because it’s very hard to say we’re not going to do this.”

And the possibility of later discovery may be a problem on both ends of the genetic test, as labs worry about legal liability and being able to do their jobs as well as possible.

“To put a lab in the position of universal nondisclosure is one that I think would cause a lot of problems,” said Madhuri Hedge, executive director of the Emory Genetics Laboratory. Instead, she said, the best policy is to evaluate on a case-by-case basis, as “these issues need to be discussed during the counseling process before the test is ordered.”

Part of the problem, she said, is that some gene tests used in labs look at the full genome, along with those of the parents, to understand where changes may be happening to cause a genetic illness. In some of those cases, the parents may even be aware of the possibility of nonparentage, and could be providing more information helpful for the child. For example, Hedge recalled a recent case in which the father’s brother was the biological dad — a fact not initially shared with doctors that was suggested by testing, and something later revealed to have been known by the parents.

Whether to disclose or not should be dealt with more individually, said Hedge, rather than through a rule of universal nondisclosure. “I feel it’s like sweeping it under the carpet so nobody has to deal with it, and the reality is someone is going to have to deal with it.”

While nonparentage can almost always be discovered in genetic testing, there are other possible explanations for those findings. This allows labs to say samples do not match rather than give a definitive reason that has a small chance of being incorrect.

“We do not have a formal policy, but state that we will not be looking for nonparentage, and will not report it definitively,” said Dr. Ada Hamosh, professor in the Department of Pediatrics and the Institute of Genetic Medicine at Johns Hopkins School of Medicine. “We also send parents who are looking to address this issue for definitive testing elsewhere.”

But while she agreed with the idea of a universal policy, she said there is more discussion required.

“This is a very controversial subject, this is a very well-written paper,” said Hamosh. “[This is] not a bad solution — now let the community weigh in.”