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."
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.
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
, 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
, 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
, 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
, 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?
, 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
, 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
, 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
, 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
, 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
, 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
, 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
, 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
, 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?
, 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
, 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
, 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."
, January 22, 2013
Dr. Doug Diekema of Seattle Children's Hospital talks about the importance of getting children vaccinated.
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
, 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
, 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
, 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
, 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
, 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
, 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
, 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?
, 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.