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

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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.

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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.

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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
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  2. Ivy Moses
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  3. DuWade Moses
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  4. Adelaide Gordon
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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.

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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).”

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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

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

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