Skip to main content

Advertisement

SpringerLink
Log in

Family health history and genetic services—the East Baltimore community stakeholder interview project

  • Original Paper
  • Published:
Journal of Community Genetics Aims and scope Submit manuscript

Abstract

Discussion of family health history (FH) has the potential to be a communication tool within families and with health providers to stimulate health promotion related to many chronic conditions, including those with genetic implications for prevention, screening, diagnosis, treatment. Diverse communities with disparities in health outcomes may require different approaches to engage individuals and families in the evolving areas of genetic risk communication, assessment, and services. This work was a partnership of a local urban agency and academic genetics professionals to increase understanding of community concerns and preferences related to FH and genetic awareness. Thirty community stakeholders in the East Baltimore area participated in structured interviews conducted by community members. We identified key themes on family health history FH, risk assessment, and genetic services. Forty-three percent (18/27) of community stakeholders thought families in East Baltimore did not discuss family health history FH with doctors. Stakeholders recognized the benefits and challenges of potential actions based on genetic risk assessment and the multiple competing priorities of families. FH awareness with community engagement and genetics education were the major needs identified by the participants. Research undertaken in active collaboration with community partners can provide enhanced consumer perspectives on the importance of family health history and its potential connections to health promotion and prevention activities.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Subscribe and save

Springer+ Basic
$34.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or eBook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Explore related subjects

Discover the latest articles, news and stories from top researchers in related subjects.

References

  • Allford A, Qureshi N, Barwell J, Lewis C, Kai J (2014) What hinders minority ethnic access to cancer genetics services and what may help? Eur J Hum Genet 22(7):866–874

    Article  PubMed  Google Scholar 

  • Armstrong K, Micco E, Carney A., Stopfer J, Putt, M (2005) Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. JAMA 293:1729–1736

    Article  PubMed  CAS  Google Scholar 

  • Avis-Williams A, Khoury A, Lisovicz N, Graham-Kresge S (2009) Knowledge, attitudes, and practices of underserved women in the rural south toward breast cancer prevention and detection. Fam Community Health 32(3):238–246

    Article  PubMed  Google Scholar 

  • Baer HJ, Schneider LI, Colditz GA, Dart H, Andry A, Williams DH, Orav EJ, Haas JS, Getty G, Whittemore E, Bates DW (2013) Use of a web-based risk appraisal tool for assessing family history and lifestyle factors in primary care. J Gen Intern Med 28(6):817–824

    Article  PubMed  PubMed Central  Google Scholar 

  • Banks J, Hollinghurst S, Bigwood L, Peters TJ, Walter FM, Hamilton W (2014) Preferences for cancer investigation: a vignette-based study of primary-care attendees. Lancet Oncol 15(2):232–240

    Article  PubMed  Google Scholar 

  • Beene-Harris RY, Wang C, Bach JV (2007) Barriers to access: results from focus groups to identify genetic service needs in the community. Community Genet 10:10–18

    Article  PubMed  Google Scholar 

  • Beery TA, Shooner KA (2004) Family history: the first genetic screen. Nurse Pract 29(11):14–25

    Article  PubMed  Google Scholar 

  • Blazer KR, Christie C, Uman G, Weitzel JN (2012) Impact of web-based case conferencing on cancer genetics training outcomes for community-based clinicians. J Cancer Educ 27(2):217–225

    Article  PubMed  Google Scholar 

  • Butrick M, Kelly S, Peshkin BN, Luta G, Nusbaum R, Hooker GW, Graves K, Feeley L, Isaacs C, Valdimarsdottir HB, Jandorf L, DeMarco T, Wood M, McKinnon W, Garber J, McCormick S, Schwartz MD (2014) Disparities in uptake of BRCA1/2 genetic testing in a randomized trial of telephone counseling. Genet Med 17(6):467–475

    Article  PubMed  PubMed Central  Google Scholar 

  • Caburnay CA, Babb P, Kaphingst KA, Roberts J, Rath S (2014) Characteristics of genetics-related news content in Black weekly newspapers. Public Health Genomics 17(1):7–15

    Article  PubMed  CAS  Google Scholar 

  • Chen LS, Zhao S, Stelzig D, Dhar SU, Eble T, Yeh YC, Kwok OM (2018) Development and evaluation of a genomics training program for community health workers in Texas. Genet Med. https://doi.org/10.1038/gim.2017.236

  • Cragun D, Weidner A, Lewis C, Bonner D, Kim J, Vadaparampil ST, Pal T (2017) Racial disparities in BRCA testing and cancer risk management across a population-based sample of young breast cancer survivors. Cancer 123(13):2497–2505

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  • Gallo AM, Knafl KA (2009) Disclosure of genetic information within families – how nurses can facilitate family communication. Am J Nurs 109(4):65–69

    Article  PubMed  PubMed Central  Google Scholar 

  • Guttmacher AE, Collins FS, Carmona RH (2004) The family history—more important than ever. N Engl J Med 351:2333–2336

    Article  PubMed  CAS  Google Scholar 

  • Hovick SR, Yamasaki JS, Burton-Chase AM, Peterson SK (2015) Patterns of family health history communication among older African American adults. J Health Commun 20(1):80–87

    Article  PubMed  Google Scholar 

  • Hughes TB, Varma VR, Pettigrew C, Albert MS (2017) African Americans and clinical research: evidence concerning barriers and facilitators to participation and recruitment recommendations. Gerontologist 57(2):348–358

    Article  PubMed  Google Scholar 

  • Kaphingst KA, Goodman M, Pandya C, Garg P, Stafford J, Lachance C (2012) Factors affecting frequency of communication about family health history with family members and doctors in a medically underserved population. Patient Educ Couns 88(2):291–297

    Article  PubMed  Google Scholar 

  • Khoury MJ, Evans JP (2015) A public health perspective on a national precision medicine cohort: balancing long-term knowledge generation with early health benefit. JAMA 2; 313(21):2117–2118

  • Knowing your family health history can save your life (2014) Virginia Department of Health. http://www.vdh.virginia.gov/ofhs/childandfamily/childhealth/gns/familyhealthhistory.htm. Accessed 12 Aug 2015

  • Kuo DZ, Houtrow AJ, Arango P, Kuhlthau KA, Simmons JM, Neff JM (2012) Family-centered care: current applications and future directions in pediatric health care. Matern Child Health J 16(2):297–305

    Article  PubMed  Google Scholar 

  • Lucas-Wright A, Bazargan M, Jones L, Vadgama JV, Vargas R, Sarkissyan M, Smith J, Yazdanshenas H, Maxwell AE (2014) Correlates of perceived risk of developing cancer among African-Americans in South Los Angeles. J Community Health 39(1):173–180

    Article  PubMed  PubMed Central  Google Scholar 

  • Mai PL, Vadaparampil ST, Breen N, McNeel TS, Wideroff L, Graubard BI (2014) Awareness of cancer susceptibility genetic testing: the 2000, 2005, and 2010 National Health Interview Surveys. Am J Prev Med 46:440–448

    Article  PubMed  PubMed Central  Google Scholar 

  • Manswell Butty JA, Richardson F, Mouton CP, Royal CD, Green RD, Munroe KA (2012) Evaluation findings from genetics and family health history community-based workshops for African-Americans. J Community Genet 3:1–12

    Article  PubMed  Google Scholar 

  • Mittman IS, Downs K (2008) Diversity in genetic counseling: past, present and future. J Genet Couns 17(4):301–313

    Article  PubMed  Google Scholar 

  • Morgan MA and Lifshay J (2006) Community engagement in public health, California Endowment under the sponsorship of Contra Costa Health Services (CCHS) http://cchealth.org/public-health/pdf/community_engagement_in_ph.pdf

  • O’Leary J, Edelson V, Gardner N, Gepp A, Kyler P, Moore P, Petruccio C, Williams M, Terry S, Bowen D (2011) Community-centered family health history: a customized approach to increased health communication and awareness. Prog Community Health Partnersh 5:113–122

    Article  PubMed  Google Scholar 

  • Pagán JA, Su D, Li L, Armstrong K, Asch DA (2009) Racial and ethnic disparities in awareness of genetic testing for cancer risk. Am J Prev Med 37:524–530

    Article  PubMed  Google Scholar 

  • Pettey CM, McSweeney JC, Stewart KE, Price ET, Cleves MA, Heo S, Souder E (2015) Perceptions of family history and genetic testing and feasibility of pedigree development among African Americans with hypertension. Eur J Cardiovasc Nurs 14(1):8–15

    Article  PubMed  Google Scholar 

  • Qureshi N, Armstrong S, Dhiman P, Saukko P, Middlemass J, Evans PH, Kai J, ADDFAM (Added Value of Family History in CVD Risk Assessment) Study Group (2012) Effect of adding systematic family history enquiry to cardiovascular disease risk assessment in primary care: a matched-pair, cluster randomized trial. Ann Intern Med 156(4):253–262

    Article  PubMed  Google Scholar 

  • Rahimzadeh V, Bartlett G (2014) Genetics and primary care: where are we headed? J Transl Med 12:238

    Article  PubMed  PubMed Central  Google Scholar 

  • Ramsey SD, Yoon P, Moonesinghe R, Khoury MJ (2006) Population-based study of the prevalence of family history of cancer: implications for cancer screening and prevention. Genet Med 8(9):571–575

    Article  PubMed  PubMed Central  Google Scholar 

  • Rivers D, August EM, Sehovic I, Lee Green B, Quinn GP (2013) A systematic review of the factors influencing African Americans’ participation in cancer clinical trials. Contemp Clin Trials 35(2):13–32

    Article  PubMed  Google Scholar 

  • Rosenthal MS, Barash J, Blackstock O, Ellis-West S, Filice C, Furie G, Greysen SR, Malone S, Tinney B, Yun K, Lucas GI (2014) Building community capacity: sustaining the effects of multiple, two-year community-based participatory research projects. Prog Community Health Partnersh 8(3):365–374

    Article  PubMed  PubMed Central  Google Scholar 

  • Schaa KL, Roter DL, Biesecker BB, Cooper LA, Erby LH (2015) Genetic counselors’ implicit racial attitudes and their relationship to communication. Health Psychol 34(2):111–119

    Article  PubMed  PubMed Central  Google Scholar 

  • Sheppard VB, Mays D, LaVeist T, Tercyak KP (2013) Medical mistrust influences black women’s level of engagement in BRCA 1/2 genetic counseling and testing. J Natl Med Assoc 105:17–22

    Article  PubMed  PubMed Central  Google Scholar 

  • Sussner KM, Edwards TA, Thompson HS, Jandorf L, Kwate NO, Forman A, Brown K, Kapil-Pair N, Bovbjerg DH, Schwartz MD, Valdimarsdottir HB (2011) Ethnic, racial and cultural identity and perceived benefits and barriers related to genetic testing for breast cancer among at-risk women of African descent in New York City. Public Health Genomics 14(6):356–370

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  • Tarini BA, McInerney JD (2013) Family history in primary care pediatrics. Pediatrics 132(Suppl 3):S203–S210

    Article  PubMed  PubMed Central  Google Scholar 

  • Thompson T, Seo J, Griffith J, Baxter M, James A, Kaphingst KA (2015) The context of collecting family health history: examining definitions of family and family communication about health among African American women. J Health Commun 20(4):416–423

    Article  PubMed  PubMed Central  Google Scholar 

  • Underhill ML, Jones T, Habin K (2016) Disparities in cancer genetic risk assessment and testing. Oncol Nurs Forum 43(4):519–523

    Article  PubMed  Google Scholar 

  • Vogel KJ, Murthy VS, Dudley B, Grubs RE, Gettig E, Ford A, Thomas SB (2007) The use of family health histories to address health disparities in an African American community. Health Promot Pract 8(4):350–357

    Article  PubMed  Google Scholar 

  • Wallerstein N, Duran B (2010) Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Public Health 100(Suppl 1):S40–S46

    Article  PubMed  PubMed Central  Google Scholar 

  • Warren NS (2011) Introduction to the special issue: toward diversity and cultural competence in genetic counseling. J Genet Couns 20(6):543–546

    Article  PubMed  Google Scholar 

  • Weng SF, Kai J, Andrew Neil H, Humphries SE, Qureshi N (2015) Improving identification of familial hypercholesterolemia in primary care: derivation and validation of the familial hypercholesterolemia case ascertainment tool (FAMCAT). Atherosclerosis 238(2):336–343

    Article  PubMed  CAS  Google Scholar 

  • Williams MS (2014) Genomic medicine implementation: learning by example. Am J Med Genet C Semin Med Genet 166C(1):8–14

    Article  PubMed  Google Scholar 

  • Yoon PW, Scheuner MT, Gwinn M et al (2004) Awareness of family health history as a risk factor for disease – United States. MMWR Morb Mortal Wkly Rep 53:1044–1047

    Google Scholar 

Download references

Acknowledgements

The Urban Health Institute at the Johns Hopkins University funded the study. The study team is thankful to the participants for their time and detailed insights about various aspects of FH and genetic services. The study team is grateful to Dr. Jean Ford, the Sidney Kimmel Comprehensive Cancer Center Community Advisory Committee, and the Johns Hopkins School of Medicine Community Research Advisory Committee for their valuable suggestions during the proposal development.

Author information

Authors and Affiliations

  1. The Jackson Laboratory for Genomic Medicine, Farmington, CT, USA

    Kunal Sanghavi

  2. Johns Hopkins Hospital, Baltimore, MD, USA

    Ivy Moses

  3. Jesus’ Stop Restoration, Inc., Baltimore, MD, USA

    Ivy Moses & DuWade Moses

  4. Chapel Hill School of Nursing, University of North Carolina, Chapel Hill, NC, USA

    Adelaide Gordon

  5. Maryland Department of Health, Office of Health Services, Maryland Medicaid, Baltimore, MD, USA

    Linda Chyr

  6. McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins School of Medicine, Baltimore, MD, USA

    Joann Bodurtha

Authors
  1. Kunal Sanghavi
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Ivy Moses
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. DuWade Moses
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Adelaide Gordon
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Linda Chyr
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Joann Bodurtha
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Kunal Sanghavi.

Ethics declarations

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

Conflict of interest

The authors declare that they have no conflict of interest.

Additional information

“We now know that gathering and maintaining family medical information, which should reach as far back as three to four generations is vital. It reminds us of the monetary banking system, (squirreling information away and withdrawing it when needed).”

Community partner comment

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Sanghavi, K., Moses, I., Moses, D. et al. Family health history and genetic services—the East Baltimore community stakeholder interview project. J Community Genet 10, 219–227 (2019). https://doi.org/10.1007/s12687-018-0379-z

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12687-018-0379-z

Keywords

Search

Navigation