EditorialBrief Report

Knowledge, Perceptions, and Barriers to Collection of Family Health History Data

Christine M Kava, Anne K Julian, Anjel Vahratian, Michelle R Fletcher and Sun Hee Rim
The Journal of the American Board of Family Medicine January 2026, 39 (1) 157915; DOI: https://doi.org/10.3122/jabfm.2025.250278R1

Abstract

Background Family health history (FHH) is used to assess potential risk for diseases such as hereditary cancers. To date, limited data exist on potential barriers to collecting FHH information.

Methods We used National Center for Health Statistics Rapid Surveys System data collected between January–February 2024. The data were analyzed to estimate the prevalence of knowledge, perceptions, and barriers to collecting information on FHH. The final cumulative response rate ranged from 4.8%–4.4%.

Results Over 60% of adults had knowledge of the health history of their biological parents or grandparents. Nearly all adults (94.8%) believed that knowledge of FHH was somewhat or very important to their own health, though only 15.2% of adults reported actively collecting this information. An estimated 66.5% of adults reported that it was somewhat or very difficult to collect information about the health history of their biological relatives. Of these adults, the top two reasons for reported difficulty in collecting FHH were not being in contact with relatives/relatives no longer alive (76.0%) and not knowing what information to collect (45.9%). Differences in knowledge, perceptions, or barriers to collecting FHH were observed by several sociodemographic characteristics. Some of the biggest differences were observed for health insurance coverage; for example, 76.2% of adults with health insurance shared their FHH with a clinician compared to 46.1% of adults without health insurance.

Conclusions This report provides national estimates that can guide intervention efforts to increase knowledge and collection of FHH and address common barriers to collecting this information.

Introduction

Family health history (FHH) provides a record of health conditions that exist among family members,1 including diseases such as cancer, diabetes, heart disease, high cholesterol, and mental health disorders like depression. Information that is typically collected for the purpose of developing a FHH includes the presence of disease in the individual or their first, second, and third-degree relatives; age of disease onset or diagnosis; cause of death, if applicable; and ethnicity.2 Collection of FHH is important for assessing disease risk, informing preventive action to reduce disease risk, influencing recommended strategies to treat or manage disease, and addressing patient health concerns.2,3 For example, FHH can help identify higher risk for hereditary cancers and inform cancer risk reduction and early detection recommendations (e.g., genetic testing, screening at an earlier age, surgery).4 Collection of information on social factors (e.g., neighborhood environment, access to healthy foods) in combination with FHH may also be helpful for understanding and addressing disease risk.5

Multiple studies have examined outcomes related to FHH, including an examination of differences by sociodemographic and health characteristics.6–15 In a 2004 study on awareness of family health history as a risk factor for disease, 96% of participants perceived FHH as very or somewhat important, and 30% reported actively collecting this information.14 Collection of FHH has been found lower among people who have not visited vs. visited doctor in the past year, with increasing age, and among males vs. females.14,15

Perceived importance of FHH has been found lower among people with limited health literacy.11 While some studies have found higher perceived importance of FHH among White vs. Black people,7 others have conversely found that White people are more likely to perceive FHH as not important compared to other racial and ethnic groups.6 Knowledge of FHH is lower among racial and ethnic minority groups, males, people without health insurance, and among people with less income and education.9,10 Females are more likely to share their FHH with a clinician, family members, or friends.11–13 There are also observed differences in FHH data available in electronic medical records, with less comprehensive data on FHH for cancer available for patients who are Black vs. White, Hispanic vs. non-Hispanic, have a Spanish vs. English language preference, and who are male vs. female.8

Since FHH is used to inform clinical action, including referral to genetic counseling and testing for diseases like hereditary cancers,16 lower collection and knowledge of health history among some groups may exacerbate differences in rates of disease diagnosis.8 The contemporary literature on potential barriers to collecting FHH is somewhat limited. Building upon previous literature, this descriptive study provides recent, national estimates of knowledge, perceptions, and barriers to collecting FHH by various sociodemographic characteristics and health history.

Methods

Data Source

The National Center for Health Statistics (NCHS) Rapid Surveys System (RSS) uses two online commercial panels, NORC AmeriSpeak (https://amerispeak.norc.org/) and Ipsos KnowledgePanel (https://www.ipsos.com/en-us/solutions/public-affairs/knowledgepanel), to collect self-reported health data. The survey is designed to approximate national representation of the US population. The data are collected concurrently via telephone and online and then combined. Survey data are weighted and calibrated to National Health Interview Survey data to reduce coverage and nonresponse biases and produce national estimates. This analysis used RSS Round 3 (RSS-3) data fielded between January–February 2024 (n=8,375).17 The unweighted, combined completion rate for panelists invited to participate in RSS-3 was 39.7%.18 The final cumulative response rates for the two panels, including recruitment into the panel, were 4.8% and 4.4%.18 This activity was reviewed by the Centers for Disease Control and Prevention (CDC), deemed not research, and was conducted consistent with applicable federal law and CDC policy.

RSS-3 Family Health History

The RSS-3 questionnaire19 included a series of questions about FHH. First, respondents indicated how important knowledge of their FHH was to their own health (not at all important, somewhat important, very important). Second, respondents indicated how much they knew about the health history of their biological parents and grandparents (a lot, some, or nothing at all). Third, respondents indicated whether they had ever actively collected health information from biological relatives for the purposes of developing a FHH and whether they had shared this information with their relatives or their doctor or other clinician (hereafter clinician). During cognitive interview testing of the items in the RSS-3,20 respondents interpreted the term “active collection” of FHH as asking or having conversations about current and past health conditions with their biological relatives. Finally, respondents indicated how difficult it was to collect information about the health history of their biological relatives (very difficult, somewhat difficult, not at all difficult), and reported on reasons for difficulty from a list of non-mutually exclusive options. We restricted our analysis on reasons for difficulty collecting FHH to respondents who reported that collection was very difficult or somewhat difficult.

Statistical Analysis

RStudio version 2024.04.1+748 (http://www.rstudio.com) was used to conduct data analysis. Unweighted frequencies and weighted prevalence estimates were produced for the measures described above. We examined 95% confidence intervals to make informal comparisons by age group, sex, race and ethnicity, marital status, education, employment status, household income as a percentage of the federal poverty level, health insurance coverage, urbanization level, US census region, and disability status, whether a biological relative was ever diagnosed with cancer, and whether the respondent was ever diagnosed with cancer.

Results

Descriptive Statistics

The study included 8,375 participants, with a weighted total of 258.5 million representing the adult population in the United States (data not shown). The weighted percentage of adults was 51.2% female and 48.8% male. The largest percentage of adults were non-Hispanic White (61.7%), followed by Hispanic (17.6%), Black (12.7%), and another race or ethnicity (7.9%). About half (55.5%) of adults were employed, 34.9% were college graduates, and 40.4% had a household income that was ≥400% of the federal poverty level. Most adults (90.4%) had health insurance coverage. About a third (36.4%) of adults had a biological relative diagnosed with cancer and 10.8% had a personal diagnosis of cancer.

Knowledge of Family Health History

In January–February 2024, an estimated 95.3% (95% CI: 94.7–95.9) of adults indicated knowing a lot or some health history of their biological mother, 87.7% (95% CI: 86.7–88.6) of their biological father, 75.8% (95% CI: 74.7–76.9) of their maternal grandparents, and 63.9% (95% CI: 62.6–65.2) of their paternal grandparents (Table 1). Knowledge of FHH varied by several sociodemographic and health characteristics. For example, adults with health insurance coverage, and those with a biological relative diagnosed with cancer, had more knowledge of their FHH compared with their counterparts. Knowledge also tended to differ by race and ethnicity and generally increased with increasing household income as a percentage of the federal poverty level and with increasing education.

View this table:
Table 1. Knowledge of Family Health History, Rapid Surveys System Round 3, United States, January–February 2024, N=8,375*

Perceived Importance and Experience Collecting Family Health History

Nearly all adults (94.8%; 95% CI: 94.2–95.4) believed that knowledge of their FHH was somewhat or very important to their own health (Table 2). Fewer adults (15.2%; 95% CI: 14.3–16.2) actively collected health information from their biological relatives for the purposes of developing a FHH. An estimated 32.0% (95% CI: 30.9–33.3) of adults reported sharing their FHH with relatives, and 73.1% (95% CI: 71.9–74.4) reported sharing FHH with their clinician.

Differences in sharing FHH with a relative or clinician were observed across most characteristics. For example, sharing generally increased with age and education, and was higher among adults who were female and who had a personal or family history of cancer. Sharing of FHH with a clinician was highest among adults who were non-Hispanic White (78.7%; 95% CI: 77.2–80.0), followed by non-Hispanic Black (66.8%; 95% CI: 63.1–70.4), other race or ethnicity (64.9%; 95% CI: 59.6–69.9), and Hispanic (62.5%; 95% CI: 59.1–65.9). Some of the largest differences in reporting of FHH were observed by health insurance coverage. An estimated 76.2% (95% CI: 75.0–77.5) of adults with health insurance shared their FHH with a clinician compared to 46.1% (95% CI: 41.4–51.0) of adults without health insurance. Similarly, 33.4% (95% CI: 32.1–34.7) of adults with health insurance coverage compared to 20.1% (95% CI: 16.7–23.8) without coverage shared their FHH with relatives.

View this table:
Table 2. Perceived Importance and Experience Collecting Family Health History, Rapid Surveys System Round 3, United States, January–February 2024, n=8,375*
View this table:
Table 3. Perceived Difficulties of Collecting Family Health History, Rapid Surveys System Round 3, United States, JANUARY–FEBRUARY 2024, n=5,620*

Differences were also observed in perceived importance and experience actively collecting FHH information. For example, reporting that FHH was somewhat or very important to their own health was higher among adults who were female, had health insurance coverage, and who had a biological relative diagnosed with cancer. Perceived importance of FHH generally increased with increasing household income as a percentage of the federal poverty level and with increasing education.

Perceived Difficulties of Collecting Family Health History

About two-thirds of adults reported that it was somewhat difficult (50.9%; 95% CI: 49.5–52.4) or very difficult (15.6%; 95% CI: 14.6–16.6) to collect information about the health history of their biological relatives (data not shown). Of these adults, 76.0% (95% CI: 74.6–77.3) agreed it was difficult because they were no longer in contact with relatives or relatives were no longer alive. Almost half (45.9%; 95% CI: 44.3–47.6) of adults did not know what information to collect, 33.7% (95% CI: 32.2–35.2) found it hard to organize or store information on FHH, and 33.0% (95% CI: 31.4–34.5) felt uncomfortable asking relatives for information. Differences in reported reasons for difficulty collecting FHH by select characteristics were observed. For example, not knowing what information to collect was reported more often among adults who were younger, male, with less education and income, and without a personal or family history of cancer.

Discussion

At least 60% of adults had knowledge of the FHH of their biological parents or grandparents, and knowledge was highest for their biological mother. Like other reports,9,10 we found knowledge of FHH tended to be lower among adults with lower income and education, as well as among adults without health insurance coverage. These differences may be due to several factors like lower health literacy and less access to health information among people with lower socioeconomic status.21

Adults with health insurance coverage and non-Hispanic White adults were more likely than their counterparts to report sharing FHH with a clinician. People who are uninsured are less likely to receive medical care and more likely to delay needed care22—which could translate into less opportunity to share family health information with a clinician during routine or acute health care visits. Less sharing of FHH among other racial and ethnic groups may be associated with medical mistrust, which is higher among non-Hispanic Black and Hispanic adults compared to non-Hispanic White adults.23

Structural barriers, including language barriers, may explain some of the differences we observed. For example, compared to English-speaking patients, Spanish-speaking patients have less comprehensive FHH information in their electronic health records (EHR).8 Some clinicians attribute the following perceived barriers to difficulties in collecting FHH among Spanish-speaking patients: limited patient knowledge of FHH, limited health literacy, and less time to communicate with patients when using interpreter services.24 Negative health care experiences,23,25 inadequate availability of qualified interpreters,26 and insufficient time during patient encounters to collect detailed FHH24 may impact clinician-patient communication about FHH. Future studies that adjust for these and other characteristics could offer additional insight into factors associated with FHH outcomes.

While most adults thought it was important to know their FHH, only 15% actively collected this information from relatives. This is in contrast to previous findings from Yoon et al. 200414 that 30% of people had actively collected this information. Taken together, these findings suggest opportunities to improve collection of FHH. Among adults who reported difficulty collecting FHH, the most common reason was not being in contact with relatives or relatives no longer being alive. Increasing comfort with asking relatives about FHH may require consideration of family context, culture and communication styles,27 including possible tensions or norms that might lead to less communication about health conditions within families.28 Encouraging communication about FHH with relatives at an early age could help to reduce intergenerational loss of family health history.

Multiple tools and interventions exist29 to help facilitate collection and sharing of FHH with others, including clinicians and relatives, and could increase knowledge of what type of information to collect. In 2004, the Office of the Surgeon General, National Institutes of Health, and CDC collaboratively launched the Family History Initiative in recognition of the importance of collecting FHH for disease prevention.30 A major development from this initiative was the My Family Health Portrait,31 an online tool designed to help users collect and share FHH and assess risk for certain health conditions. Furthermore, the CDC’s Bring Your Brave campaign provides education, support, and video resources for young women to learn about their FHH of breast and ovarian cancer, as well clinician education on risk factors for hereditary breast cancer.32 Finally, clinical decision support tools can facilitate better capture of FHH data in electronic health records (EHR) to help clinicians communicate with patients about disease risk. Such clinical decision support tools have been integrated into EHRs for some cancers in limited clinical settings.33

Limitations

The findings in this report are subject to five limitations. First, RSS-3 only asked respondents to indicate how much they knew about the health history of their biological parents and grandparents. The health history of other relatives—including siblings, aunts, and uncles—are also important considerations when assessing disease risk. Second, while there was consensus on what “active collection” of FHH meant during cognitive interviewing,20 the survey did not provide a formal definition of this term, which could have led to variability in how respondents answered questions on this topic. Third, no data were available on clinician-level barriers and facilitators to collecting information on patients’ FHH, which can impact the quality of information collected.34 Fourth, there was no data on the type of clinician(s) that respondents shared their FHH with, which could be useful for understanding potential differences in patient-clinician communication and disclosure. Finally, certain subpopulations may be underrepresented due to low response rates. For example, the unweighted completion rates for both panels were higher among adults who were aged ≥65 years, non-Hispanic White, and who had higher education.18 To help mitigate potential bias, the data are weighted and calibrated to NHIS.18

Conclusions

FHH provides actionable information that can guide preventive care, inform decisions about the need for genetic counseling and testing, and inform early treatment and management of disease.3 The results from this report provide timely data on knowledge and collection of FHH, including common barriers to obtaining this information. Use of tools and resources may facilitate the collection and sharing of FHH to inform personal health decisions and health care.

Conflicts of Interest

None to disclose.

Disclaimer

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Corresponding Author

Christine M. Kava, PhD, MA, Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, CDC, ckava{at}cdc.gov

Peer Review

This article was externally peer reviewed.

Acknowledgements

The authors would like to thank Katherine Kolor and Ridgely Fisk Green for their input on the conception and analysis of this project.

  • Received for publication July 23, 2025.
  • Accepted for publication October 6, 2025.

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