2015

Adolescent Stem Cell Donors: Benefits, Burdens, and Risks of Being a Lifeline for a Sibling

Oncology Nurse Advisor, October 20, 2015

A young person decides to donate stem cells to an HLA-matched sibling in need of a bone marrow transplant. It is such a selfless gift. But for an adolescent in the midst of the emotional turmoil that comes with that age, just how easy a decision is it to decide to give such a complex gift? A multidisciplinary team explored the conundrum with the goal of identifying how to help these generous persons through a very difficult decision. The team members were, from St. Jude Children's Research Hospital in Memphis, Tennessee, Meaghann S. Weaver, MD, MPH, from the Department of Oncology; Ashley Carr, CCLS, from the Child Life Program; and Brandon Triplett, MD, from the Department of Bone Marrow Transplantation and Cellular Therapy; and Dr. Douglas S. Diekema, attending physician and director of education for the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Research Institute in Seattle, Washington.

Survey Could Spot Parents Who Shun Child Vaccinations

MedicineNet.com, September 25, 2015

Parent responses on a survey about childhood vaccinations can help predict whether their youngsters will receive recommended immunizations, a new study finds. “Our results suggest that [survey] scores validly predict which parents will have under-immunized children," said Dr. Douglas Opel, of the University of Washington and Seattle Children's Research Institute, and colleagues in a journal news release.

Trump and Carson think it's okay to delay vaccines. Doctors say they're wrong.

Vox.com, September 17, 2015

Presidential contenders Donald Trump (a celebrity business tycoon) and Ben Carson (a pediatric neurosurgeon) both pushed the notion that kids these days may be getting too many vaccines too soon at Wednesday's Republican debate. Researchers point out that there's absolutely no science to this "too many, too soon" idea of stressing kids' systems with vaccines, and that the government-approved schedule is based on the best-available research about when kids are most at-risk for diseases and when their immune systems are most receptive to them. Also, the data that we have for routine vaccines suggests harms are infinitesimally remote. The totality of the research is stacked against alternative schedules, said Dr. Doug Opel, a Seattle pediatrician who studies vaccines. "There is just no science to this," he told Vox. "What gets lost a lot of the time is that there's an incredible amount of data underlying the recommended schedule."

Is There an Alternative Vaccine Schedule?

WebMD, September 4, 2015

There are no official alternative vaccine schedules. No major medical group approves of them. And there is no research to show that they are safe. Alternative schedules have not been formally studied, but there is some evidence that they may contribute to disease outbreaks. “States where a high number of parents opt out [of vaccines] show an increased risk of infectious diseases," says Dr. Doug Opel, a pediatrician at Seattle Children's. "It's significant and it's profound."

Carly Fiorina says parents should have the choice to vaccinate their kids – but it’s doctors who wield the real influence

Women in the World, August 20, 2015

At a town hall event in Iowa last week, aspiring Republican presidential candidate Carly Fiorina came out against mandatory vaccination for children. Fiorina believes parents have the right to decide whether or not to vaccinate their kids. Fiorina’s beliefs are actually in line with policies in most states: Vaccination is required for enrollment in public schools, but parents can obtain exemptions on religious or personal grounds. While policy is obviously important, recent research shows that doctors can also play a role in convincing hesitant parents to let their kids get vaccinated. Last December, Dr. Doug Opel, a pediatrician at Seattle Children’s, co-authored a paper in the journal Pediatrics that found that parents were much more likely to decline vaccines for their children when doctors presented the shots as a choice, rather than an expectation.

Ethics and Risks: Should Teens Be Donors for Siblings?

Surgical Products, August 12, 2015

In "Matched Marrow, Sibling Shadow: The Epidemiology, Experience, and Ethics of Sibling Donors of Stem Cells", Dr. Meaghann Weaver; Ashley Carr, CCLS; and Dr. Brandon Triplett, St. Jude Children's Research Hospital (Memphis, Tenn.) and Dr. Douglas Diekema of Seattle Children's focus on a range of issues unique to adolescents with siblings that require a hematopoietic stem cell transplant. Along with familial expectations, and positive feelings of altruism and self-worth, the scenario may include health risks, pain, and psychological burdens.

Nearly all states allow religious exemptions for vaccinations

Pew Research Center, July 16, 2015

Forty-six states currently allow children to be exempt from vaccinations due to religious concerns, including 17 states that also allow exemptions for “personal reasons,” according to a Pew Research Center analysis. And even though 46 states allow religious exemptions for vaccinations, researchers and journalists have struggled to identify a single major U.S. religious group that currently advocates against vaccination for children. Some of these exemptions exist “at least in part owing to the lobbying efforts of the Christian Science Church,” according to an article in the Annual Review of Public Health by Dr. Douglas Diekema, a doctor and bioethicist at Seattle Children’s Hospital. But even though the church is well known for its belief in healing through prayer, it does not advocate that its members refrain from vaccinating children.

Washington Just Announced the First Measles Death in the United States in 12 Years. What’s Wrong with Us?

The Stranger, July 8, 2015

Preventable diseases aren't supposed to be killing people in 2015. Yet the Washington State Department of Health recently had the unenviable task of announcing the first measles death in the United States in more than a decade. On July 2, the DOH revealed that a case of pneumonia brought on by measles had killed a woman from the Olympic Peninsula in the spring. The latest measles death wasn't related to the strain unleashed in Disneyland last winter. But, like the Disneyland outbreak, the new case highlighted the damage individual choices not to vaccinate can have on more vulnerable members of a community. Seattle Children’s Dr. Doug Opel is featured in this article.

New way to tackle vaccine hesitancy tested, found wanting

Group Health Research Institute, June 1, 2015

Group Health Research Institute conducted the first randomized trial to test an intervention aimed at improving hesitancy about early childhood vaccines by working directly with doctors. Vax Northwest, a Washington state public-private partnership, developed the intervention. The results are reported in Pediatrics in Physician Communication Training and Parental Vaccine Hesitancy: A Randomized Trial, with an accompanying editorial: Physician Communication with Vaccine-Hesitant Parents: The Start, Not the End, of the Story. The study found that vaccine hesitancy rates declined slightly in both the 30 intervention and 26 control clinics over the six-month study period – and did not differ significantly between them. The intervention did not change either mothers' vaccine hesitancy, or doctors' confidence in communicating about vaccines. Dr. Douglas Opel of Seattle Children’s is quoted in this story.

How to win patients and vaccinate people

KevinMD.com, May 22, 2015

Pediatrician Dr. Douglas Opel at Seattle Children’s is investigating the best ways to communicate with parents who are skeptical of vaccines. In a presentation at the Pediatric Academic Societies (PAS) meeting in San Diego in April, he reported that his research team is completing a study in which they videotaped pediatricians discussing vaccination with parents during well-child visits.

Study Shows Insurance Status Is Associated with Cancer Mortality in Teens and Young Adults

On the Pulse, April 15, 2015

About 70,000 young people ages 15 to 39 are diagnosed with cancer each year in the U.S., and cancer is leading cause of death from disease in this age group. While cancer survival continues to improve for children and older adults, outcomes have greatly lagged for teens and young adults. In recognizing this worrisome disparity, the medical community is working to identify the factors that may be contributing to this population’s inferior survival outcomes. In a study featured today on the cover of Cancer, “Insurance status and risk of cancer mortality among adolescents and young adults,” researchers have identified one of those factors: lack of health insurance and limited access to medical care. Dr. Abby Rosenberg is featured in this post.

Childhood Vaccination Rates May Be Lower for Military Kids

Reuters, April 13, 2015

Children with parents in the military may have lower vaccination rates than other kids, according to a large U.S. survey. Even with socioeconomic factors taken into account, parents’ memories and doctors’ records suggested that more military children under age three weren’t up-to-date on their childhood vaccinations: 28%, compared with about 21% of other kids, researchers reported in Pediatrics. To ensure children are well-protected against vaccine-preventable diseases, a national vaccination registry would be ideal, Dr. Douglas Diekema, a pediatrician at Seattle Children's Research Institute, said by email. "Without that, families will need to try to keep a copy of each child's vaccination records and provide those to their child's new medical clinic when they move to a new home."

Anti-Vaccine Haven Digs In As Measles Outbreak Hands Science Crusaders an Edge

Huffington Post, March 6, 2015

Dr. Douglas Opel, a pediatrician at Seattle Children's and expert in bioethics at the University of Washington, has found that how doctors begin a vaccine discussion with parents can strongly steer decisions. In one study, when a doctor began with the recommendation a child was due for a certain vaccine, and then paused for the parent's reaction, Opel observed far less resistance than if the doctor began with an open-ended question. Still, if a parent does have an opinion or questions, Opel said, "it is inappropriate to close off discussion."

Nearly all states allow religious exemptions for vaccinations

Denver Post, March 2, 2015

Eliminating exemptions for religious and personal beliefs would certainly increase vaccination rates, said Dr. Douglas S. Diekema with the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Research Institute. But the strategy risks a backlash against vaccination requirements. "A better approach," Diekema said, "is to eliminate all barriers to vaccination. It should be easier to get vaccinated than it is to choose not to get vaccinated."

Nearly all states allow religious exemptions for vaccinations

Pew Research Center, February 25, 2015

Our analysis found wide variation in vaccination exemptions across the country. Some states have strict guidelines surrounding religious exemptions. Delaware, for instance, requires parents to submit a notarized affidavit stating that a sincere belief in “a Supreme Being” is the reason for the exemption request. And Oregon requires parents to obtain a “vaccine education certificate” either from a health care provider or by viewing an online seminar before their child can be exempted. And even though 46 states allow religious exemptions for vaccinations, researchers and journalists have struggled to identify a single major U.S. religious group that currently advocates against vaccination for children. Although the original reasons for religious exemptions to mandatory vaccines are unclear in many states, some exist “at least in part owing to the lobbying efforts of the Christian Science Church,” according to an article in the Annual Review of Public Health by Dr. Douglas Diekema, a doctor and bioethicist at Seattle Children’s.

Docs Seek New Ways to Tell Parents Just How Safe It Is to Vaccinate

Take Part, February 23, 2015

Pediatricians face growing numbers of parents who question or reject vaccinations for their children. Now, public health experts are working on new ways to help these doctors hone their pitches to families. A study of 111 patient discussions about vaccines involving 16 medical providers, published in the journal Pediatrics in December 2013, found that 83% of parents resisted vaccines for their children when the provider started off with “participatory” language, such as “What do you want to do about shots?” Lead study author Dr. Douglas Opel, a general pediatrician at Seattle Children’s and assistant professor at the University of Washington, said that shared decision making with patients doesn’t apply to vaccinations, because the recommended immunization schedule is the only medically acceptable choice. But he said it is important to address their concerns.

Can we nudge our way to higher vaccination rates?

Reporting on Health, February 20, 2015

When it comes to the media’s coverage of the measles outbreak, Dr. Douglas J. Opel of the University of Washington is suddenly very much in the spotlight. That’s largely because Opel, a pediatrician based at Seattle Children’s and the University of Washington School of Medicine, conducts research that looks at how doctors talk to parents about vaccines. And as the media cycle looks for fresh angles on what’s becoming an increasingly saturated beat, the topic of how doctors talk about vaccines has come to seem like the leading edge of the conversation over how to boost immunization rates (legislative efforts aside).

Some Parents Say Vaccines Violate Their Anti-Abortion Beliefs

Al Jazeera America, February 13, 2015

A series of measles outbreaks all over the country in recent weeks have drawn scrutiny to parents’ decisions not to vaccinate their children. Before 2009, the measles vaccine was available as a stand-alone injection for parents who preferred it; this allowed parents to vaccinate their children against measles without using the rubella vaccine they view as problematic. Dr. Douglas Diekema of Seattle Children’s is quoted in this article.

How to Get Silicon Valley’s Anti-Vaxxers to Change Their Minds

Wired, February 12, 2015

There’s been a lot of shaming and blaming of the anti-vaccination crowd in response to the Disneyland measles outbreak (even we did it). And when we released our investigation of vaccination rates at Silicon Valley preschools, people were justifiably angry: Every unvaccinated kid at those schools threatens the greater community’s protection against disease. But yelling at anti-vaxxers won’t change their minds – which is what we need most to prevent more outbreaks. That begs the question: What can turn them around? Dr. Doug Opel of Seattle Children’s is quoted in this article.

Improve Vaccine Adherence by Presenting Immunization as Default Option

The Clinical Advisor, February 11, 2015

Evolving both immunization laws and provider practices is necessary to balance patients’ individual choice and public health concerns, according to an editorial published in JAMA Pediatrics. In immunization practice, clinicians are left to decide how far to stray from the standard of care when parents request a revised vaccination schedule for their children. “Protecting individual choice and promoting public health are seemingly at odds. However, an impasse is not inevitable,” wrote Dr. Douglas J. Opel, MD, MPH, of the Seattle Children’s Research Institute, and colleagues.

Allow Only Valid Medical Exemptions to Measles Immunizations

The Seattle Times, February 10, 2015

As pediatricians, we have seen the benefit of immunization: the elimination of once-common diseases. Every day, we counsel parents about vaccines. We know they want to do what is best for their child. So do we. Most parents accept immunization, but not all. Un-immunized children can acquire and transmit measles – igniting outbreaks and endangering our community. Dr. Edgar K. Marcuse, Dr. Douglas S. Diekema and Dr. Douglas J. Opel of Seattle Children’s co-authored this article.

The Surprising Reasons Behind The Growing Anti-Vaccine Movement

KUOW, February 10, 2015

Ross Reynolds talks with Dr. Douglas Diekema about why some parents don't vaccinate their children. Diekema is professor of pediatrics at the University of Washington and an emergency room physician at Seattle Children's.

Doctors Work to Ease Vaccine Fears

The Wall Street Journal, February 9, 2015

Pediatricians face growing numbers of parents who question or reject vaccinations for their children. Now, public health experts are working on new ways to help these doctors hone their pitches to families. A study of 111 patient discussions about vaccines involving 16 medical providers, published in the journal Pediatrics in December 2013, found that 83% of parents resisted vaccines for their children when the provider started off with “participatory” language, such as “What do you want to do about shots?” Lead study author Dr. Douglas Opel, a general pediatrician at Seattle Children’s and assistant professor at the University of Washington, said that shared decision making with patients doesn’t apply to vaccinations, because the recommended immunization schedule is the only medically acceptable choice. But he said it is important to address their concerns.

Vaccines: Delays, Too, Pose Risks

The Wall Street Journal, February 9, 2015

A 2013 study in JAMA Pediatrics found a big risk of contracting pertussis or whooping cough with each delayed vaccine dose, said Jason Glanz, a vaccine researcher with Kaiser Permanente Colorado and a lead author of the study. The study looked at 323,247 children from eight managed-care organizations in six states. “For every dose that was delayed, the risk went up significantly,” said Dr. Glanz. “At the highest it was a 28-fold greater risk.” Dr. Douglas Opel, a pediatrician at Seattle Children’s, finds himself once a month in negotiations with parents about vaccines. About half the time he is successful.

To Get Parents To Vaccinate Their Kids, Don't Ask, Just Tell

NPR, February 7, 2015

As California's measles outbreak continues to spread beyond state borders, many doctors nationwide are grappling with how best to convince parents to have their children vaccinated. Inviting a collaborative conversation doesn't work all that well, many are finding. Recent research by Dr. Doug Opel, a pediatrician at Seattle Children's and a researcher at the University of Washington suggests that being more matter-of-fact can work a lot better. In the study Opel and colleagues described in the December issue of Pediatrics, they enrolled 111 parents, some hesitant about vaccines and some not.

The vaccine delayers: They hate anti-vaxxers – but don't quite vaccinate on time

Vox, February 6, 2015

Researchers completely disagree with the vaccine-hesitant group: they think their worries also undermine the decades of research that almost unequivocally shows vaccines are safe, and that they imperil society's "herd immunity" – the fact that even those who can't or don't get vaccinated are protected because diseases can't spread very far when most people are immunized. "There is just no science to this," summed up Dr. Doug Opel, a Seattle Children’s pediatrician who studies vaccines. "We immunize with this vaccine at this time because kids are most at risk at this point. They are most susceptible. What gets lost a lot of the time is that there's an incredible amount of data underlying the recommended schedule."

Politicizing the Vaccination Fight Could Make Things Worse

New York Magazine, February 5, 2015

As opposed to dealing with vaccinations as a political issue, how should they be addressed? The expert consensus at the moment seems to be: (1) Researchers haven’t yet figured out which messages can bring anti-vaccine folks into the fold; and (2) to the extent any messages are effective, they have to come from local, trusted figures rather than dictates issued on high from politicians or national-level health authorities like the CDC. Pediatricians are one example. “We know, based on several studies now, that parents really look to their parents’ pediatric adviser for important influence on their decision-making,” said Dr. Douglas Opel, a pediatrician at Seattle Children’s who is developing a protocol to better gauge parents’ vaccination intentions. “There’s a lot of reasons to try to optimize those relationships.”

A Way Out of the Vaccine Wars

BloombergBusiness, February 4, 2015

As coverage of the outbreak of measles at California’s Disneyland continues to grow, the conversations surrounding the anti-vaccination movement continue to ramp up. According to Dr. Douglas Opel of the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s, “Physicians can increase vaccine compliance by making clear that full and prompt vaccination is an expectation, not just an option.” It’s important, though, to show respect for the parents’ opinions. “We, the public health community, should recognize that they’re starting from the right place,” agrees Emory University’s Dr. Saad Omer. “All parents want to see their kids healthy and are looking out for their welfare.”

Pediatric Oncologist Learns About Loss The Hard Way

Physicians News Digest, January 26, 2015

Pediatric oncology can be one of the most emotionally draining specialties for doctors and health care providers. On one hand, the sight of a child cured of cancer can create an exhilarating high and validation of the job. But on the other hand, losing a child to cancer – even when it’s not your own family – can be devastating. Doctors are supposed to be immune from those emotions. They are supposed to avoid emotional ties to their patients, right? Dr. Abby R. Rosenberg is a pediatric oncologist at Seattle Children’s Hospital. She had too often seen families experience those highs and lows that go along with their child’s cancer treatment. She had seen entire communities mourn the loss of a neighborhood friend as they “sustain each other, supporting, bolstering, and protecting from within,” she said.

Case Sparks Debate About Teen Decision Making in Health

U.S. News & World Report, January 22, 2015

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. Laws for minors' access to health care vary by state and typically involve mental health and substance abuse treatment or care for sexually transmitted infections. Some have pointed to a political double standard at play in Connecticut, noting that the state is one of a handful in which teens are allowed to seek abortions without parental consent, yet Cassandra is not allowed to refuse medical treatment for cancer. Supporters of the court's action in Cassandra's case say reproductive, substance abuse and mental health services are different from cancer treatment. "In both cases the law is designed to help the teenager.... They are not laws that recognize a teen's maturity," says Dr. Douglas S. Diekema, clinical director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Research Institute.

Circumcision Linked To Autism In Controversial New Study

Huffington Post, January 20, 2015

A controversial new study from Denmark shows a link between circumcision and autism, but other experts pooh-poohed that hypothesis. "One has to be very careful drawing any conclusions from studies like this," Dr. Douglas S. Diekema, a pediatrician at Seattle Children’s and the University of Washington in Seattle and one of the authors of an American Academy of Pediatrics policy statement that is broadly supportive of circumcision, told The Huffington Post in an email. "They raise questions for further study, but do not provide answers... Correlation does not imply or prove causation."

2014

CDC Considers Counseling Males of All Ages on Circumcision

NPR, December 3, 2014

Draft federal recommendations don't usually raise eyebrows, but this one certainly will — that males of all ages, including teenage boys, should be counseled on the health benefits of circumcision. In the past 15 years, studies in Africa have found that circumcision lowers men's risk of being infected with HIV during heterosexual intercourse by 50 to 60 percent. Being circumcised also reduces men's risk of infection with the herpes virus and human papillomavirus. Those health benefits prompted the Centers for Disease Control and Prevention's proposed recommendation that doctors counsel parents of baby boys and teenagers, as well as men, on the benefits and risks of circumcision. Groups opposed to circumcision, such as Intact America, say the health benefits of circumcision in the U.S. remain unproven, and that the CDC is relying too heavily on studies done in Africa that may not be relevant here. The procedure, which removes the foreskin, has been criticized because infants can't consent to it. "Parents need to recognize that they're effectively removing that decision from their son," says Dr. Douglas Diekema, a bioethicist at Seattle Children's who served on the pediatricians' task force. "And there are some men who will grow up being unhappy with the decision that their parents made."

Does Your Average Scientist Need an Ethicist on Call?

Scientific American, October 21, 2014

Ethical dilemmas in research are nothing new; what is new is that scientists can go to formal ethics consultancies to get advice. Unlike the standard way that scientists receive ethical guidance, through institutional review boards (IRBs), these services offer non-binding counsel. And because they do not form part of the regulatory process, they can weigh in on a wider range of issues – from mundane matters of informed consent and study protocol to controversial topics such as the use of experimental Ebola treatments – and offer more creative solutions. But many scientists either do not know that they exist or fear using them because they could add red tape to an already heavy administrative burden. And this year, the U.S. National Institutes of Health (NIH) scrapped funding for a working group to support ethics-consultation services and to develop best practices for the profession. Although financial support could return in some form, ethicists are not waiting around for it. Dr. Benjamin Wilfond, director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's in Washington, has set up the Clinical Research Ethics Consultation Collaborative, a group of around 35 bioethicists who hope to keep improving the consultation service model, even without NIH support.

Video explains why doctors don’t always know best

Stanford Medicine's Scope, September 23, 2014

In focus groups, Stanford bioethicist David Magnus, PhD, found that no meaningful discussions could take place until his research team had educated patients on some fundamental concepts of medical research, such as standards of care, randomization and informed consent. To help with this process, his team produced three short, animated videos that would rapidly get everyone up to the same level of understanding. Magnus and his collaborators are making these videos available to all for educational purposes. He and his bioethicist collaborators from the Seattle Children’s Research Institute and University of Washington expect to publish their final ethics policy recommendations later this year.

Videos explain concepts of clinical research

Stanford Medicine News Center, September 19, 2014

When a doctor asks a patient if he or she would like to be randomized into an arm of a standard-of-care treatment study, does the patient really understand the question? Can a jargon-filled consent form, written by lawyers and medical researchers, really help? These are the communications challenges that bioethicists faced when they began exploring the ethical implications of the new world of comparative-effectiveness research, in which patients are randomly prescribed treatment options in a doctor’s office. This study, led by David Magnus, PhD, director of the Stanford Center for Biomedical Ethics, and bioethicists from Seattle Children’s Research Institute and University of Washington, will result in policy guidelines for conducting ethical research within medical practices.

Training Physicians for Empathy

Health Leaders Media, August 8, 2014

Improving Clinical Management of Stillbirth is an educational session sponsored by the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS) and the University of Washington. The program was created to give residents a better perspective of what parents go through during a traumatizing medical event. Dr. Maureen Kelley, of Seattle Children's, saw that students weren't properly prepared to handle the emotional repercussions of a stillbirth. "We don't train our physicians very well to handle the emotional, psychological side of it," says Kelley, "There's a little bit of training on the recognition and the science and symptoms of distress and they're trained on how to medically manage a woman who is having a stillbirth. But there's a whole other side to it, the emotional and psychological side of losing a pregnancy and how parents suffer in that process."

'No one is too young, no one is too fit': At 23, Bald Ballerina fights advanced breast cancer

Today.com, July 31, 2014

A dancer since the age of 4, Maggie Kudirka knows the grit, discipline and focus required to become a professional ballerina. Now the same drive that kept her dancing may be what keeps her alive: at 23 years old, Maggie, who trains and performs at the prestigious Joffrey Ballet School, was diagnosed with stage 4 breast cancer. “I want to make people aware that breast cancer can strike anyone, at any age. No one is immune, no one is too young, no one is too fit,” she says. Breast cancer is rare in younger women – fewer than five percent of all breast cancers diagnosed in the U.S. occur in women under 40. But a 2013 study, published in the Journal of the American Medical Association, found that while it’s a relatively small number, metastatic breast cancer tripled among women younger than 40 between 1976 and 2006. Dr. Abby Rosenberg, an oncologist and medical leader of Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program, says self-advocacy is especially important in young adult patients because they less likely to see a doctor regularly, and they have the lowest rates of medical insurance. "These are people who are generally supposed to be healthy and most of the time a lump in the breast isn't a big deal. But, cancer does happen in young adults and when it does, we need to figure out how to take care of them, from a medical and developmental life standpoint," Rosenberg says.

Remembering Daniel and the Legacy He Left Behind

Seattle Children's On the Pulse, August 5, 2014

"In my last post about 'The Fault in Our Stars,' I made a comment about how most patients live, if not thrive after their cancers. I am deeply grateful for the readers who correctly commented that some patients also die. There are no words to express how tragic, painful or unjust, the death of a young person from cancer can be. I particularly appreciated these comments because they came a day after the death of one of my own, and very beloved, patients. I wrote this memoir the day he died. With his parents’ permission, I am sharing a few pieces of his story, his legacy, with you." Dr. Abby Rosenberg of Seattle Children’s is the author of this post.

The Fault in "The Fault in Our Stars"

Seattle Children's On the Pulse, July 24, 2014

"I loved 'The Fault in Our Stars.' Both the book and the movie. I read the book a few years ago during a flight. I cried so hard that I'm sure the other passengers were alarmed, if not downright uncomfortable sitting near me. This summer, I saw the movie with a girlfriend. Same thing - I went through a whole pack of tissues and left red-faced, swollen and physically dehydrated. As we walked out of the theater, my girlfriend (also a pediatrician) turned to me and said skeptically, 'I don't get it, Abby. Why are you so emotional? Isn't this what you DO for a living?' The answer is yes. Taking care of teens and young adults with cancer is what I do. And, perhaps, that is why this book/movie hit me so hard. For one thing, we oncologists are often so busy thinking about chemotherapy and side effects, we don't see the other side of cancer. We get to know our patients and families, but we see them in the contrived settings of clinic and the hospital - not at home, amongst their friends or on a trip to Amsterdam. We aren't always privy to their witty internal monologues or their poignant observations about the injustices of life, the things that really matter to them, or the life lessons they've learned during their arduous journey with cancer." Dr. Abby Rosenberg of Seattle Children's is the author of this post.

Safeguarding Children in Emergencies through Ethical Pediatric Research

blog.Bioethics.gov, July 18, 2014

Tomorrow, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) will present its recommendations on pediatric medical countermeasure (MCM) research at the 10th Annual Pediatric Bioethics Conference in Seattle. The conference, hosted by the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s, takes place July 18 and 19, 2014; its theme: “New Opportunities, New Challenges: Exploring the Ethical Boundaries of Pediatric Research.”

In Advanced Pediatric Cancer, Poor Parent-Provider Agreement

MPR, July 18, 2014

For pediatric patients with advanced cancer, parent-provider concordance is poor regarding prognosis and goals of care, according to a study published online July 14 in the Journal of Clinical Oncology. Dr. Abby R. Rosenberg from Seattle Children's and colleagues describe parent-provider concordance regarding prognosis and goals of care for 104 pediatric patients with recurrent or refractory cancer. Parents and providers were surveyed on perceived prognosis and goals of care on enrollment, and data were available for 77 dyads (74% of those enrolled). Survival status was retrospectively abstracted from medical records.

Should I Take My Child to the Hospital?

U.S. News & World Report, May 23, 2014

Pediatricians and other health experts joined U.S. News & World Report for a Twitter chat this week to answer questions about when parents should take their son or daughter to the hospital. Each year, more than 23 million children age 15 or younger are taken to the emergency room, according to the National Safe Kids Campaign, an organization dedicated to the prevention of unintended childhood injury. Parents can do a lot to help keep their children out of the hospital, including updating safety measures at home as their children grow older and partnering with their pediatricians to devise a plan of action for children with particular medical conditions, like asthma or diabetes. Not all children who go to the emergency room need to be there. Many situations can easily be handled by a pediatrician during office hours, or treated at home using over-the-counter health products. Here is a guide to knowing how you should respond to issues from stomach pain to emotional trauma. Dr. Doug Diekema of Seattle Children's participated in this chat.

Should I Take My Child to the Hospital?

U.S. News & World Report, May 23, 2014

Pediatricians and other health experts joined U.S. News & World Report for a Twitter chat this week to answer questions about when parents should take their son or daughter to the hospital. Each year, more than 23 million children age 15 or younger are taken to the emergency room, according to the National Safe Kids Campaign, an organization dedicated to the prevention of unintended childhood injury. Parents can do a lot to help keep their children out of the hospital, including updating safety measures at home as their children grow older and partnering with their pediatricians to devise a plan of action for children with particular medical conditions, like asthma or diabetes. Not all children who go to the emergency room need to be there. Many situations can easily be handled by a pediatrician during office hours, or treated at home using over-the-counter health products. Here is a guide to knowing how you should respond to issues from stomach pain to emotional trauma. Dr. Doug Diekema of Seattle Children's participated in this chat.

In vials and clinical trials, attention to ethical details

NewsBeat, March 27, 2014

Medical research tilts toward transparency and caution - not always to the public's advantage, surprisingly. Q&A with Dr. Benjamin Wilfond, who directs the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Research Institute and is chief of the Division of Bioethics in UW School of Medicine's Department of Pediatrics.