--- title: Doctors Still Don't Know How to Talk About Down Syndrome description: A recent study in the Journal of Disability and Health looked at the role of bias about Down syndrome in prenatal screening experiences. canonical: https://time.com/6312341/prenatal-diagnosis-down-syndrome-bias/ author: TIME article:opinion: true article:content_tier: free article:published_time: 2023-09-11T16:24:59.000Z article:modified_time: 2026-08-04T08:03:09.679Z article:section: Ideas og:title: Doctors Still Don't Know How to Talk About Down Syndrome og:description: A new study sheds light on the role of bias in prenatal diagnoses. og:url: https://time.com/6312341/prenatal-diagnosis-down-syndrome-bias/ og:site_name: TIME og:image: https://static.time.com/v3/assets/bltea6093859af6183b/blt19563d0fa4c033a1/698a403adb2987388a269520/doctors-downs-syndrome-baby-conversation.jpg?branch=production&width=1200&quality=75&auto=webp&crop=16:9 og:image:width: 2400 og:image:height: 1350 og:image:alt: doctors-downs-syndrome-baby-conversation og:type: article twitter:card: summary_large_image twitter:title: Doctors Still Don't Know How to Talk About Down Syndrome twitter:description: A new study sheds light on the role of bias in prenatal diagnoses. twitter:image: https://static.time.com/v3/assets/bltea6093859af6183b/blt19563d0fa4c033a1/698a403adb2987388a269520/doctors-downs-syndrome-baby-conversation.jpg?branch=production&width=1200&quality=75&auto=webp&crop=16:9 ---  # Doctors Don't Know How to Talk About Down Syndrome > Sponsored content. 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It explains how TIME's journalism is made, from the first pitch through the editorial decisions behind a finished story or cover. #### How can I read about how TIME chooses its covers? Inside TIME is the newsletter where TIME's Editor-in-Chief explains cover selection and the editorial reasoning behind major stories. It is free at time.com/newsletters. #### Who is the editor of TIME? Sam Jacobs is TIME's Editor-in-Chief. He writes Inside TIME, a twice-weekly newsletter about the newsroom's reporting and editorial decisions. #### Is Inside TIME free? Yes. Inside TIME is a free newsletter, available at time.com/newsletters. A paid TIME subscription is separate and available at time.com/subscribe-agent. ### Sources * TIME Newsletters: [time.com/newsletters](/c/time-nl-inside-2026q3/newsletters?i=8df33b22-9034-4e57-8ac3-0529b8fed037&cr=time-nl-inside-2026q3-v1) ## Video: Here’s What To Do If Your Doctor Is Not Listening [Watch (HLS stream): Here’s What To Do If Your Doctor Is Not Listening](https://cdn.jwplayer.com/manifests/J6sfadWw.m3u8) (4:15)  _Published 2023-09-12. When Courtney Quinn had breast cancer, she always took her wife along to doctor’s appointments. The two treated each one like a business meeting, and prepared in advance by discussing goals, questions, and frustrations._ by [Amy Julia Becker](https://time.com/author/amy-julia-becker/) ## Amy Julia Becker Sep 11, 2023 4:24 PM UTC  Getty Images by [Amy Julia Becker](https://time.com/author/amy-julia-becker/) ## Amy Julia Becker Sep 11, 2023 4:24 PM UTC Nearly 18 years ago, I gave birth to a healthy baby girl on a Friday night in late December. She was our first child, and we marveled at her big blue eyes, her shock of black hair, and her tiny, delicate features. We named her Penny, after her grandmother. Two hours after she was born, a nurse called my husband out of the room. She escorted him to a dimly lit supply closet, where he stood among extraneous equipment and a pediatrician who refused to look him in the eye. “I’m sorry,” the doctor said. “Your baby has the features of Down syndrome.” My husband returned to our room alone, his eyes brimming, carrying the responsibility of telling me this information that neither of us had the experience or knowledge to begin to understand. Penny’s diagnosis came a long time ago, but the discomfort, limited information, and truncated imagination for our family back then is similar to what many women experience prenatally today. A [recent study](https://www.sciencedirect.com/science/article/pii/S1936657423000869?dgcid=author#bib14) in the _Journal of Disability and Health_ looked at the role of bias in prenatal screening experiences and found that, according to the parents of children with Down syndrome surveyed, obstetricians frequently framed the diagnosis as a bad thing and failed to provide accurate and up-to-date information about the fetus’ condition. This information matters because it lays the groundwork for informed choices and for envisioning what could lie ahead. ### More From TIME **Read More:** [_Where Are All the Children's Books Featuring Kids With Down Syndrome?_](https://time.com/6218859/down-syndrome-childrens-books/) When we were in the hospital with Penny as a newborn, we received data about Down syndrome that listed medical concerns: celiac disease, childhood leukemia, hearing loss, vision loss, heart defects. It wasn’t until later that we learned life expectancy for children with Down syndrome has doubled in our lifetime, or that the vast majority of adults with Down syndrome [report](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3740159/) happy and fulfilling lives. We needed a vision formed by real families with real struggles and celebrations in their lives. Instead we got a list of potential problems. Nearly two decades later, it’s clear that stereotypes and biases persist even among the providers who should be most equipped to talk about the condition. In the study, researchers asked parents whether their doctors used the words “I’m sorry” or presented the diagnosis as something negative. They also identified times when physicians offered erroneous or discriminatory assumptions about people with Down syndrome, like talking about them as burdens on society. More than 61% of parents surveyed reported these types of implicit or explicit bias. According to the American College of Obstetricians and Gynecologists, pregnant people should receive an array of options (termination, adoption, and continuing the pregnancy) with a prenatal diagnosis. They also should be offered accurate, up-to-date, and comprehensive information about Down syndrome. And yet the study found that while the majority of doctors offered the options, far fewer provided the comprehensive information, despite the existence of resources that help convey the social reality of disability and give vulnerable women important information in the face of what is often an intense and relatively urgent decision. **Read More:** [_Why You Should Think Before Telling Mothers 'They're Only Little Once'_](https://time.com/6311184/theyre-only-little-once-motherhood-essay/) When Penny was a toddler, we participated in a program through a medical school in New Jersey to help train physicians to better understand disability. Students were required to see patients with disabilities not only in a medical setting, but also in the context of their family life. Once, we hosted two young doctors for dinner, and one of them admitted that earlier in the day he had told his fellow students that having Down syndrome was the worst thing that could happen to a family. By the end of our time together, he said he would love to have a family like ours, Down syndrome and all. Even a short glimpse of a child in the social context of her home rather than solely through the pages of a medical textbook changed what he could imagine. When doctors have an imagination for a social and family life that could involve happiness, connection, and health for people with Down syndrome, alongside an awareness of some of the challenges and complications that can arise, they can better offer both information and care. In addition to training programs, resources like the [Lettercase](https://www.lettercase.org/) pamphlet give physicians words, images, and data they need to talk about Down syndrome. Lettercase was developed in consultation with advocacy groups and families as well as various medical associations. It has been recommended by the American College of Medical Genetics and Genomics for its accurate and balanced presentation of medical and social information about children and adults with various genetic conditions. People who live with Down syndrome do face hardship and suffering. They also live lives of beauty, purpose, and love. Parents who receive prenatal diagnoses deserve the chance to imagine a whole range of possibilities for their families and make decisions based on accurate and comprehensive information. **Read More:** [_Is Pink Still a 'Girl Color'? An Exploration_](https://time.com/6309632/is-pink-girl-color-barbie/) Over the course of Penny’s life, we have accumulated a lot of information about Down syndrome. But Penny has also given us a new understanding of life with an intellectual disability. Today, she is a senior at our local high school, where she is taking a Great Books class with neurotypical peers and a math class with other kids with disabilities. She has a job in a local café. She has no interest in ever learning to drive a car. She loves Taylor Swift and the Yankees. Penny challenges me to pay more attention to people instead of tasks, to laugh instead of curse when I make a mistake, and to value mutuality more than self-sufficiency. She has different capacities when it comes to learning, but she has no limits on her capacity to love, or to live a full life. Instead of a shameful reality that requires an apology, we have gained an expanded understanding of our shared humanity and diverse ways of being in the world. ## Transcript Not being heard by your doctor's. It's something that's common for everyone. However, for populations that face Health disparities is a higher rate of the doctors not listening, particularly with breast cancer. Black women have reported in studies that they have had less quality of conversations with their doctor than white women. Black women are 41%, more likely to die of breast cancer than white women. And I believe some of that has to also do with the conversations with the doctors we know based on studies that as much as 80% of the diagnosis could be made just based on the story based on your illness, the course of that domus. But we also know that because of the lack of time that doctors have to spend with patients. That doctors can interrupt patients in as little as 10 seconds into that story. Now, this is not based on bed and what it is based on the system that we have, that does not for our ties time and the doctor-patient relationship and there's also a Reliance on over-reliance. I should say I'm testing instead of listening and hands-on experience with a patient and so all that makes it such that that miscommunication is more likely to happen. The conversation between a doctor and the patient. It's a two-way conversation and sometimes we don't see it that way. I really recommend to patients to prepare for the meeting with the doctor and treat it like a business meeting. What are your goals for that meeting? What questions concerns do you have? And then who's going to be in the room with you? Because I'm a big believer of having someone there to take notes in someone who knows what your goals are because they may be able to advocate for you. What I think a patient is that you are the expert when it comes to your health. And the doctor is the expert when it comes to medicine and that partnership is really essential and so practice a 2-minute version of the story, a 1 minute and 30. Second version, give the chronology. What begins first what happened next for my contacts? If this is the worst headache that you've ever had versus this is something that you experience almost every day and make sure to talk about it. Know that you only have a limited amount of time, it would your doctor? Call me with questions to speak up and asked those questions. Talk to your doctor together about what is the most likely diagnosis based on what they heard thus far? And what is it's not? You can always emphasize how different this is to you compared to before. That kind of comparison is important because your position is not going to know how you normally are. You might look fine, but maybe you walk in the same. I used to run marathons but now I can't even walk two blocks that certainly give the love of contacts to who you are and why this is so different for you. The other thing is if you have been so you may know your family history you may know your risk factors. So if you're trying to get a screening or an exam or approval on something and you have that evidence in that research, share that with the doctor because they may need that information to get approval from insurance as well. Always seek a second opinion. If what your doctor saying doesn't make sense. If you feel like you're not being heard, don't wait to have somebody else review your situation to a lot of times that I know this isn't immediately clear. Maybe you give up cars for their testing. Maybe it also requires more time for that off. Your figure out what you have the time to seek. A second opinion is if you feel like you're not getting better. If you feel like the tests that are being done, don't make sense. If you feel like your doctor isn't hearing you out and their answers are not satisfactory. In that case, you can ask for referral to a specialist about the appropriate. Or you can go seek out a second opinion on your own. 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