Bioethics News

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

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

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.

Vaccine Experts: It’s Time to ‘Nudge’ Hesitant Parents

The Seattle Times, February 8

A growing measles outbreak linked to the Disneyland theme park has spurred action in Washington state and elsewhere to crack down hard on parents who don’t vaccinate their children. But experts who’ve studied the contentious issue worry such efforts could backfire. A 2014 study by Dartmouth University researchers suggested that repeated pro-vaccine messages from public-health officials can actually create more resistance to immunization, not less. “My fear is that in the long run, it may end up backfiring,” Omer added. Instead, it might be better to “nudge” parents into compliance rather than penalizing them. That’s a concern echoed by Dr. Doug Opel, a pediatrician and assistant professor of bioethics and pediatrics at the University of Washington and Seattle Children’s, who has researched vaccine-use issues extensively.

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

NPR, February 7

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."

Vaccine Problems May Signal Rocky Flu Season

The Seattle Times, December 6, 2014

If kids already have received FluMist this year, they’re considered fully vaccinated, CDC officials said. It’s not recommended that they get a shot too, noted Dr. Doug Opel, a pediatrician and bioethicist at Seattle Children’s. No parent — or grandparent — should forgo flu vaccine for themselves or their kids because of the reported problems, Opel said. “Remember, each year, influenza causes more hospitalizations and deaths in the U.S. than any other vaccine-preventable disease,” he said. The CDC estimates that flu causes 200,000 hospitalizations and anywhere between 3,000 and 48,000 deaths in the U.S. in any given year. Most deaths are among people older than 65.

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.

RoMP Study Assesses Public Acceptability of Research Policies

Institute of Translational Health Sciences, May 22, 2014

A new study led by the Institute of Translational Health Sciences and Spectrum at Stanford University - Attitudes about the Ethics of Research on Medical Practices (RoMP) - is seeking to better understand how patients, families and institutional review board (IRB) members view these ethical implications. RoMP study findings will aid in the development of policies that support researchers in designing ethical studies and informed consent processes that maintain the public's trust in research. "Many ethical guidelines are based on assumptions about what is important to people. But when we ask them, people might have concerns that we did not consider and other times the problems that we are worrying about are less concerning to them," said lead ITHS researcher Dr. Benjamin Wilfond, director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and professor and chief of the Division of Bioethics in the Department of Pediatrics at the University of Washington School of Medicine.

Dangers of Vaccine Hesitancy Explained in 10 Tweets

ABC News, April 16, 2014

Parental decisions are the bedrock of childhood vaccination rates. While most parents turn to their pediatricians for help making decisions about immunization, there's also a lot of conflicting information for them to sift through. Worry over whether it's safe to allow their child to have 24 shots before the age of two and up to five pokes per visit has left many parents on the fence about if and when they should stick to the vaccination schedule recommended by the Centers for Disease Control and Prevention. Dr. Douglas Opel of Seattle Children's is quoted in this article.

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.

FDA raises concerns about three-parent embryo procedure

KING 5 News, February 27, 2014

In two days of hearings ending Wednesday, a federal committee, including Dr. Douglas Diekema, proved quite skeptical about research that might help some patients birth healthy children - but might also open the door to human gene manipulation. The procedure being considered, called mitochondrial transfer, would mix the genes of two women in hopes of creating a healthy baby. Although the panel, which advises the federal Food and Drug Administration, did not take a vote, many members questioned the ethics of the procedure, and whether the research into it is as far advanced as some supporters claim.

Researcher Spotlight: Featuring Benjamin Wilfond

Institute of Translational Health Sciences, February 10, 2014

Dr. Benjamin Wilfond is an attending pediatric pulmonologist and director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital. Given his passion for pediatric pulmonology and bioethics, it is not surprising that he developed a strong interest in the outcomes of the national neonatal SUPPORT (Surfactant, Positive Pressure, and Oxygenation Randomized Trial) study.

Genome sequencing: Uncoding the risk

The Daily of the University of Washington, December 4, 2013

Since the 1970s, genetic testing has helped to inform families with a history of genetic disorders of the risks of passing on certain inheritable disorders to their children. Now, with recent advances in genetic sequencing technology, a team of UW researchers is leading an exploratory study to determine the logistics, benefits and concerns of expanding the role of more comprehensive genetic testing for couples prior to conception. Dr. Benjamin Wilfond, of Seattle Children's Research Institute, is featured in this story.

Results of a parental survey may help predict childhood immunization status

News Fix, November 18, 2013

Scores on a survey to measure parental hesitancy about vaccinating their children were associated with immunization status, according to a study by Dr. Douglas J. Opel, of the University of Washington and Seattle Children's Research Institute, and colleagues.

Don't Ask, Just Tell Parents When It's Time for Vaccines: Study

HealthDay News, November 4, 2013

The way a doctor talks about vaccines can make a difference in whether or not parents resist shots for their child, new research suggests. Study author Dr. Douglas Opel, of Seattle Children's, explains how conversation matters.

UW research: Will mapping parents' DNA help offspring or just freak people out?

SeattlePI.com, September 30, 2013

Dr. Ben Wilfond, a pediatric bioethics expert at Seattle Children's Research Institute, is part of a group of researchers looking at whether or not genetic and carrier testing will help people understand their risks better or just lead to confusion and panic.

Team Develops Early Warning Tool for Vaccine Skepticism

KPLU, September 26, 2013

Seattle researchers have developed a kind of early-warning device for identifying parents suspicious of childhood vaccines. Dr. Doug Opel, of Seattle Children's, and others developed a survey of parents' attitudes about vaccination, which does a pretty good job of predicting which kids would be under-vaccinated by the time they're 19 months old.

Survey Could Spot Parents Who Shun Child Vaccinations

HealthDay News, September 25, 2013

Parent responses on a survey about childhood vaccinations may help predict whether their child will receive recommended immunizations, according to a recent study published in Pediatrics by Dr. Douglas Opel of Seattle Children's Research Institute.

Sterilizing a child, for a better life

The Atlantic, September 19, 2013

Dr. Douglas Diekema, professor of pediatrics at the University of Washington and Seattle Children's, discusses parental concerns of sterilizing mentally disabled children.

4 Reasons the Circumcision Rate Has Declined Over 30 Years

Yahoo!, August 26, 2013

The rate of circumcisions performed on newborn boys in U.S. hospitals has steadily declined over the last three decades, the U.S. Centers for Disease Control (CDC) has said in a new report. Dr. Douglas Diekema, of Seattle Children's, explains what factors may be influencing the decline.

Baby circumcisions in U.S. hospitals decline over three decades

Reuters, August 22, 2013

In-hospital circumcisions for newborn boys in the U.S. have fluctuated over the past three decades, but the overall percentage declined by 10% from 1979 to 2010, a new government report shows. Dr. Douglas Diekema, of Seattle Children's Hospital, is quoted in this article.

Study could show baby's health risks before mother is even pregnant

KOMO News, July 25, 2013

The Kaiser Permanente Center for Health Research will receive $8.1 million from the National Institutes of Health to conduct a clinical trial using whole genome sequencing to test women and their partners for mutations that could cause rare, but serious diseases in their children. Dr. Ben Wilfond, a pediatric bioethics expert at Seattle Children's Research Institute, is involved in the study.

Kaiser Permanente Center for Health Research Receives $8 Million Grant for Novel Whole Genome Sequencing Study

The Center for Health Research, July 23, 2013

The National Institutes of Health has awarded four grants for up to four years to multidisciplinary research teams to explore the use of genome sequencing in medical care, including Dr. Katrina Goddard and Dr. Benjamin Wilfond with Seattle Children's Research Institute. The awards total approximately $6.7 million in the first year and, if funding remains available, approximately $27 million in total.

Doctors from around world gather for Pediatric Bioethics Conference here

Q13 Fox, July 18, 2013

More than 200 doctors from across the world will gather in Seattle July 19 and 20 for the Pediatric Bioethics Conference to talk about our kids, their health and how to best take care of them. Dr. Ben Wilfond, of Seattle Children's, talks about the conference.

Hand transplant program for kids launched at Boston hospital

CBS News, June 17, 2013

A Boston hospital is starting the world's first hand transplant program for children, and doctors say it won't be long until face transplants and other radical operations to improve appearance and quality of life are offered as well. Dr. Douglas Diekema, of Seattle Children's Hospital, discusses transplants in this article.

Parents Lobby - and Win - a Shot at New Lungs for Their Kids. Are Transplant Rules Made to Be Broken?

Time, June 12, 2013

The families of two children with cystic fibrosis who need new lungs but were ineligible for adult organs have successfully used the courts and public opinion to get their daughter and son on the adult waiting list, which is normally unavailable to kids under 12. Dr. Benjamin Wilfond, of Seattle Children's Hospital, is quoted in this article.

Parents Who Veto Vaccinations Often Seek Like-Minded Opinions

HealthDay, April 15, 2013

Friends and family may be key in parents' decisions on whether to vaccinate their young children, a small study suggests. Dr. Douglas Opel, of Seattle Children's Research Institute, discusses the study results.

Born in silence: Parents draw attention to stillborn babies

KOMO News, January 30, 2013

After a 9-month-long, completely normal pregnancy, the Sprakers' daughter Emily died in the womb. The parents went from feeling absolute joy to total devastation. Ten years later, they are sharing their story in a video they made with Seattle Children's Hospital in hopes of drawing more attention to a tragedy they say our society is hesitant to talk about: stillborn babies.

Breaking the silence after stillbirth - One family's story

On the Pulse Blog, Seattle Children's Hospital, January 28, 2013

"This Thursday, Jan. 31, is our daughter Emily's 10th birthday, a time that should be filled playfully gathering with friends and giddily unwrapping presents. But Emily will never experience any of those things - she was born still." - Amanda and Brent Spraker

GAPPS researcher Dr. Maureen Kelley provides an analysis of parents' and physicians' experiences of stillbirth. She notes that "Research into the prevalence and causes of stillbirth is ongoing, but meanwhile, many parents suffer this devastating loss, largely in silence, due to persistent stigma and taboo; and many health providers report feeling ill-equipped to support grieving parents."

Late Vaccinations

Q13 Fox, January 22, 2013

Dr. Doug Diekema of Seattle Children's Hospital talks about the importance of getting children vaccinated.

Medical Ethics

KSKA Alaska Public Radio, January 18, 2013

Dr. Doug Diekema, director of education for pediatric bioethics at Seattle Children's Hospital, joins host Dr. Thad Woodard to discuss ethical issues in medicine, including how to balance parental freedom, child welfare and public health regarding mandatory school immunizations.

Ethicists debate how to tell patients secrets in their genome

Nature News Blog, November 10, 2012

If parents have a son's genes sequenced in hopes of explaining extreme muscle weakness, should they also be told whether he is likely to get Alzheimer's disease as an adult? Should the child be told? When? How do answers to these questions shift for currently healthy adults? And should people be given more or less information depending on what they want to know? At the meeting of the American Society of Human Genetics, Holly Tabor of Seattle Children's Hospital described an emerging approach to help people decide what results from their sequencing data they want to see and when.

New Yorkers Walk to End Ritual Cutting of Girls

Women's eNews, September 12, 2012

New York physicians treat complications arising from female genital mutilation (FGM) in the form of severe infections, increasing neonatal death, painful menstruation and PTSD. When physicians are approached to perform FGM, they face a dilemma because if they refuse it, it will be done dangerously. Dr. Doug Diekema, a pediatrician at Seattle's Children's Hospital explains, "When you're dealing with religious or cultural beliefs, saying no sometimes is not sufficient for people and it will not necessarily eliminate the practice."

Pediatricians: Circumcision up to parents

The (Galveston County) Daily News, September 5, 2012

The circumcision of baby boys has more health benefits than risks, according to a new policy statement from the American Academy of Pediatrics. Douglas Diekema, a pediatrician and bioethicist at Seattle Children's Hospital, explains that traditions and cultural values play big roles in this decision.

Pediatricians' group shifts in favor of circumcision

Erie Times-News, September 3, 2012

The AAP stated recently that the medical benefits of circumcision for baby boys outweigh the small risks. "This is a decision parents should make based on what they think is most important for their child's welfare," said Dr. Douglas Diekema, a pediatric emergency specialist and bioethicist at Seattle Children's Hospital.

Clitoral reconstructive surgery: Hope for victims of female genital mutilation

PR Underground, September 3, 2012

Though a federal law was passed against female genital mutilation in 1997, physicians know that if they refuse to perform it, it will be carried out even more dangerously at home. Dr. Doug Diekema, a pediatrician at Seattle's Children's Hospital, states that when you're dealing with religious or cultural beliefs, saying no sometimes is not sufficient for people, and it will not necessarily eliminate the practice.

Circumcision benefits said to outweigh risks

KQED Radio, August 29, 2012

American Pediatrics Group Cites Benefits of Male Circumcision

Voice of America, August 29, 2012

Continuing coverage of the American Academy of Pediatrics' recently issued statement supporting circumcision. Dr. Douglas Diekema, who served on the AAP's task force, discusses the cost benefits of the procedure.

$439,433 Awarded in Childhood Cancer Research Grants to Seattle Children's Research Institute

St. Baldrick's Foundation, August 28, 2012

The St. Baldrick's Foundation granted a two-year $209,433 St. Baldrick's Fellow award to Abby Rosenberg, MD, and a $230,000 extended Scholar award to Jessica Pollard, MD, pediatric oncologists at Seattle Children's Hospital and investigators at Seattle Children's Research Institute.

Omamas Take 5: Why pediatricians support circumcision

The Oregonian, August 28, 2012

The AAP says that the health benefits of circumcision in newborn boys outweigh the risks and that insurance companies should pay for it. Dr. Douglas Diekema discusses the controversies surrounding circumcision and why pediatricians are offering more support for the procedure now.

Circumcision, and why pediatricians are offering more support

The Washington Post, August 28, 2012

The American Academy of Pediatrics announced that the health benefits of infant circumcision outweigh the risks. Dr. Douglas Diekema, who served on the AAP task force that wrote the report and who specializes in pediatric bioethics at Seattle Children's Research Institute, said the group expected the backlash it has been receiving. Dr. Diekema also discusses the newly charged atmosphere around circumcision and how the task force came to its conclusions.

Social networks help families whose babies have rare genetic condition

KING 5 TV, August 28, 2012

Facebook friends with your doctor: good medicine or ethically 'icky'?

The Seattle Times, August 11, 2012

Doctors, Social Media and Ethics

Flip the Media, August 9, 2012

Parenting severely disabled kids can be a great source of happiness

Deseret News, July 27, 2012

Benjamin Wilfond of Seattle Children's Research Institute comments on the research that found that regardless of the length of their lives, children with trisomy 13 or trisomy 18 - a chromosomal abnormality that can cause shortened lifespans and severe disabilities - not only led happy lives, but enriched the lives of their families.

Families of children with significant disabilities indicate that their lives are enriched

National Right to Life, July 25, 2012

A research study that was published in the current edition of the journal Pediatrics found that parents of children with trisomy 13/18 indicated that the parents considered the child to be happy and found that their lives were enriched by the child. The lead research author, Dr. Benjamin Wilfond of Seattle Children's Research Institute, comments on the study.

Parents, docs may clash on quality of kids' lives

Fox News (Reuters), July 23, 2012

About one in four parents of children with a serious and often fatal genetic condition say they feel judged by doctors when they want life-sustaining treatment for their newborns, in a new study. Dr. Benjamin Wilfond of Seattle Children's Research Institute is the study's senior author and notes "There is a broader range of survival and experiences than providers know. The parents may be getting this information online, and clinicians may need to rethink what they say to parents."

Vaccine Hesitancy: A Personal and Community Dilemma

Seattle's Child, April 4, 2012

Here in Washington, questions and concerns about vaccinations have led to the highest vaccine exemption rate for kindergartners in the United States. "Vaccines, probably more than any other medical product, are under constant scientific scrutiny," says Dr. Doug Diekema, a Seattle Children's Hospital physician and bioethicist at Seattle Children's Research Institute.

Pediatricians Fight for the Herd

Infectious Disease Special Edition, April 2012

The increasing incidence of vaccine-preventable disease outbreaks in the United States has exposed the need for better patient education, improved immunization requirements for public schools and increased coverage. "Every parent is different and it's just simply wrong to approach all of these vaccine-resistant parents with a broad brush," said Douglas Diekema, MD, MPH.

How Do Vaccine Schedules for Kids Get Designed?

Health Blog (Wall Street Journal), March 20, 2012

Some parents worry about the number of vaccines that pediatricians and public-health groups recommend kids get these days. Dr. Douglas Diekema, a vaccine expert and pediatrics professor at the University of Washington and Seattle Children's Hospital, says that it's important for doctors to take parents' concerns about vaccines seriously.

Why did Seattle display babies in incubators at the World's Fair?

KPLU, March 2012

At Seattle's first World's Fair in 1909, there were premature babies in incubators on display to show off the new technology. Dr. Douglas Diekema, a bioethicist at Seattle Children's Research Institute, says that type of exhibit would not be considered appropriate today.