HPV and Cervical Cancer Screening in Women with Down Syndrome
August 24, 2026
Key points
- HPV stands for human papillomavirus. HPV is a common virus.
- There are many types of HPV. Different types of HPV can cause different conditions ranging from common warts on fingers to cervical cancer.
- Cervical cancer is less common in women with Down syndrome compared to women without Down syndrome.
- There are not different cervical cancer screening recommendations specifically for women with Down syndrome.
- Cervical cancer screening options include pap smears, physician-performed HPV testing, and HPV self-collection kits.
What is HPV?
Human papillomavirus (HPV) is a common virus.
There are many types of HPV. Most types do not cause cancer. For example, some types of HPV can cause common warts on the hands or fingers. In general, HPV is spread by skin-to-skin contact.
Link between HPV and cervical cancer
High-risk HPV describes the types of HPV that can cause cervical cancer. Cervical cancer is a cancer that starts in the cervix, the opening to a woman’s uterus. These types of HPV cause almost all cases of cervical cancer.
The cervix can become infected with high-risk HPV through sexual contact with the vagina and cervix. Sometimes, the body’s immune system clears the virus on its own. Other times, the virus stays in the cells of the cervix. This usually causes no symptoms. However, over time, it can lead to abnormal cells, precancer, or cervical cancer.
Cervical cancer in women with Down syndrome
Cervical cancer is much less common in women with Down syndrome compared to women without Down syndrome (Hasle et al., 2016; Rethoré et al., 2020; Chicoine et al., 2021). A recent study reported that females with Down syndrome were 80.1% less likely to have cervical cancer than females without Down syndrome (Fitzpatrick et al., 2026).
Since almost all cervical cancer is caused by sexually acquired HPV infection, women who have never been sexually active are at lower risk of cervical cancer. Women with Down syndrome appear to have lower rates of sexual activity (Goldstein, 1988; Wandresen et al., 2023). However, they are also at higher risk for sexual abuse and are less likely to be able to report abuse clearly (Ross & Olsen, 2014; Enujioke et al., 2021). Because of this, it may not always be known whether a woman with Down syndrome has been exposed to HPV.
HPV vaccination
HPV vaccination (e.g., the Gardasil vaccine) is one way to lower the risk of cervical cancer. The HPV vaccine helps protect against the types of HPV that most often cause cervical cancer.
There are not different HPV vaccination recommendations specifically for people with Down syndrome. The vaccine schedule for HPV is the same for women with and without Down syndrome. The vaccine is generally well-tolerated.
Additional information is shared in the Primary Care Provider’s Guide to Women’s Health and Down Syndrome and this Enhancing Women’s Health webinar.
Cervical cancer screening
Cervical cancer screening checks for early signs of cervical cancer. Screening can find changes before they become cancer.
Pap test
For many years, the Pap test has been done to screen for cervical cancer. This test is also referred to as Pap smear or cervical cytology.
During a Pap test, a healthcare professional does a pelvic exam. They insert a tool called a speculum in the vagina to help see the cervix. Then the healthcare professional uses a small swab or brush to collect cells from the cervix. The sample is sent to a lab to analyze for abnormal changes in cervical cells.
Physician-performed HPV testing
A healthcare professional may perform HPV testing during a pelvic exam. Similar to a pap smear, the healthcare professional uses a swab to collect a sample from the cervix and sends it to the lab. The sample is analyzed for high-risk HPV. The physician-performed HPV testing happens during an office exam. It may be done instead of or in addition to a pap smear.
HPV self-collection kits
A high-risk HPV self-collection kit lets a woman collect her own sample to test for high-risk HPV. Several high-risk HPV self-collection tests have been approved by the FDA.
Some kits are used in a healthcare setting, such as a doctor’s office. With these kits, the woman collects the sample herself while she is at the office.
There is also a type of kit that can be used at home. With this type of kit, the woman collects the sample herself at home and mails it to a lab.
Self-collection is sometimes described as being similar to using a tampon. Some kits use a soft swab to collect the sample.
Screening guidelines
Current guidelines from the American College of Obstetricians and Gynecologists recommend screening women ages 21 to 65 for cervical cancer using:
- A pap smear
- A pap smear along with high-risk HPV testing (using an FDA-approved test), or
- High-risk HPV testing alone (using an FDA-approved test)
The guidelines recommend testing every 3-5 years depending on the age of the individual and the method used.
Routine screening is usually not recommended for women older than 65 years unless they have not received adequate prior screening.
Screening for women with Down syndrome
There are not different cervical cancer screening guidelines specifically for women with Down syndrome.
Healthcare professionals may handle screening in different ways. Some follow the standard cervical cancer screening guidelines described above. Others may adjust the screening plan based on the woman’s personal risk, comfort, and ability to complete the test.
Deciding the best screening plan
There is no single best answer for all women with Down syndrome. The goal is to choose a plan that protects the woman’s health while also respecting her comfort, safety, and dignity.
When making a screening plan, it may help to talk with a healthcare professional about:
- The woman’s age
- Her medical history
- Her risk of HPV exposure
- Whether she has had cervical cancer screening before
- How stressful or traumatic the test may be for her
- Whether she could use a self-collection kit
- Whether she needs support to complete the test (some women with Down syndrome may require sedation or anesthesia for sensitive exams)
- The benefits and limits of screening
- The lower risk of cervical cancer in women with Down syndrome
HPV self-collection kits
High-risk HPV self-collection kits may make screening easier for some women. However, these kits have not yet been studied specifically in women with Down syndrome. There are no data on the effectiveness of these tests in women with Down syndrome.
Some women with Down syndrome may be able to use a self-collection kit on their own. Others may need support from a trusted caregiver or healthcare professional.
Some women may not be comfortable using the kit, even with support. For some, it may feel confusing or upsetting.
Supporting a woman during screening
Cervical cancer screening can be very difficult for some women with or without Down syndrome. Pelvic exams, Pap tests, and even self-collection kits may cause fear, stress, or trauma.
Women with Down syndrome may need extra support before and during screening. Steps that may help include:
- Explaining the test ahead of time
- Using visual supports or stories
- Allowing extra time
- Having a trusted support person present
- Using calm, clear language
- Giving the woman as much choice and control as possible
- Stopping the exam if it becomes too upsetting
Visual supports can help women understand what to expect and prepare for the visit. Visual supports about pelvic exams and Pap tests are available here: Pelvic Exam Stories.
A visual support about how to use an HPV self-collection kit is available here: HPV Self-Collection Test.
Some women may require sedation or anesthesia to complete a pelvic exam or pap smear. People with Down syndrome are at higher risk of complications during anesthesia, so it is important to consider the benefits of the pelvic exam or pap smear versus the risks of anesthesia when deciding to proceed with this option.
Conclusion
Cervical cancer is less common in women with Down syndrome. Screening for cervical cancer may be very challenging for some women with Down syndrome, but screening may still be appropriate for some women with Down syndrome.
Because there are no special screening guidelines for women with Down syndrome, the best approach is individualized care. In our practice, we talk about the standard guidelines, the woman’s personal risk, and the challenges of testing. Then we decide together with the patient and, when appropriate, her family and caregivers. If screening is chosen, we also discuss which test to use and how to collect the sample in the safest and most comfortable way.
Resources
Down syndrome
Enhancing Women’s Health Webinar Recording (National Down Syndrome Society)
HPV Self-Collection Instructions (Thomas Jefferson University, Pennsylvania Developmental Disabilities Council)
Pelvic Exam Stories (Pennsylvania ASERT, SexEdVA)
Primary Care Provider’s Guide to Women’s Health and Down Syndrome (National Down Syndrome Society)
General
Screening for Cervical Cancer (American College of Obstetricians & Gynecologists)
References
Chicoine B, Rivelli A, Fitzpatrick V, Chicoine L, Jia G, Rzhetsky A. Prevalence of common disease conditions in a large cohort of individuals with Down syndrome in the United States. J Patient Cent Res Rev. 2021;8(2):86-97. Published 2021 Apr 19. doi:10.17294/2330-0698.1824
Enujioke SC, Leland B, Munson E, Ott MA. Sexuality among adolescents with intellectual disability: Balancing autonomy and protection. Pediatrics. 2021;148(5):e2021050220. doi:10.1542/peds.2021-050220
Fitzpatrick V, Noah A, Rivelli A, et al. Cancer prevalence among large cohort of individuals with Down syndrome: Implications for screening guidelines. Cancer Med. 2026;15(6):e72007. doi:10.1002/cam4.72007
Goldstein H. Menarche, menstruation, sexual relations and contraception of adolescent females with Down syndrome. Eur J Obstet Gynecol Reprod Biol. 1988;27(4):343-349. doi:10.1016/0028-2243(88)90048-2
Greenwood NW, Wilkinson J. Sexual and reproductive health care for women with intellectual disabilities: A primary care perspective. Int J Family Med. 2013;2013:642472. doi:10.1155/2013/642472
Hasle H, Friedman JM, Olsen JH, Rasmussen SA. Low risk of solid tumors in persons with Down syndrome. Genet Med. 2016;18(11):1151-1157. doi:10.1038/gim.2016.23
Rethoré MO, Rouëssé J, Satgé D. Cancer screening in adults with Down syndrome, a proposal. Eur J Med Genet. 2020;63(4):103783. doi:10.1016/j.ejmg.2019.103783
Ross WT, Olsen M. Care of the adult patient with Down syndrome. South Med J. 2014;107(11):715-721. doi:10.14423/SMJ.0000000000000193
Screening for cervical cancer. Obstet Gynecol. 2026;148(1):e63-e67. doi:10.1097/AOG.0000000000006257
Wandresen G, Sgarbi F, Tomiura L, de Oliveira NP, Nisihara R. Concerns regarding gynecological aspects of Brazilian girls and women with Down syndrome: A cross-sectional study of caregivers’ opinions. Ann Fam Med. 2023;21(4):322-326. doi:10.1370/afm.2993
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