NHGRI logo
Chief & Senior Investigator

Social and Behavioral Research Branch

Head

Social Network Methods Section

Education

B.S. University of California, Davis

A.M. University of Illinois, Urbana-Champaign

M.S. University of Illinois, Urbana-Champaign

Ph.D. University of Illinois, Urbana-Champaign

Biography

Laura M. Koehly, Ph.D., is chief and senior investigator in the Social and Behavioral Research Branch, National Human Genome Research Institute (NHGRI), National Institutes of Health. She earned her Ph.D. in quantitative psychology from the University of Illinois - Urbana/Champaign. Following graduate school, Dr. Koehly was a research associate at the University of Texas, M.D. Anderson Cancer Center and on the faculty at the University of Iowa and Texas A&M University. Dr. Koehly joined the NHGRI faculty in 2005.

Dr. Koehly's research focuses on developing and applying social network methods to the study of complex social systems, such as families and communities. Her expertise is on family network systems and the role of family social ties in individual members' engagement in health behaviors. Dr. Koehly is particularly interested in how genetic/genomic risk information can be used to activate network processes to improve families' health. Understanding the familial culture from a network perspective is important for the delivery of healthcare services and dissemination of genetic risk information.

Ultimately, her research aims to develop effective strategies to help families cope with disease-risk information, to increase patients' willingness to share such information with their personal physician and other healthcare personnel, and to motivate encouragement within the family to increase adherence to risk-reducing behaviors.

A new line of research aims to understand factors associated with resilience to chronic stress in families engaged in high caregiver burden due to chronic illness. This work aims to understand caregiving from a network perspective, capturing the varying roles of formal care providers, such as healthcare providers (e.g., genetic counselors, general practitioners) or caregiving staff, family members, as well as those who are like family (e.g., friends) in the process of direct care provision, decision making, communication and support in families affected by hereditary disease.

Scientific Summary

Under Dr. Koehly's leadership, the Social Network Methods Section focuses on three main scientific goals: 1) develop methods that measure and model the complexities of relational systems, 2) use such models to understand the social, psychological and communicative context of families at risk of hereditary and complex diseases, and 3) translate these findings into effective network-based interventions. The section applies these goals within three ongoing lines of research.

In their first line of research, the section members aim to examine the influence of social relationships on the communication of genetic and genomic risk information within families (e.g., family health history, genetic test results). Recent efforts consider relational influences, such as behavioral encouragement, on individual health outcomes, including lifestyle and screening behaviors. One of the section's major findings is that family relationships are crucial to individual engagement in such behaviors, indicating the need for interventions that activate and enrich family connections. As new technologies advance the translation of genomic discoveries into clinical and public health settings, the role of the family network system in improving members' health outcomes has become more pronounced. Thus, Dr. Koehly engages in evaluating the influence of the familial social context on communication and encouragement processes, with the goal of defining interventions to promote healthy behaviors. Her research group has identified a set of common interpersonal processes underlying genetic risk communication within families for whom Lynch syndrome mutations and, separately, BRCA1/2 mutations, have been identified or have not been identified. However, it is unclear whether these processes are analogous across disease contexts. Accordingly, the researchers currently are investigating genomic risk communication and adaptation to risk in families across a diverse array of disease assessments. They also are investigating the role of non-family network ties, and variability due to cultural or ethnic context.

 

Artwork

Genomic information flows between friends and family across health communication networks.

 

Through one such initiative, Families SHARE, the researchers are focused on developing tools to help families understand the role of family health history in their risk of common complex disease. These tools are not only educational, but also provide a platform for family members to engage in conversations about shared risk and to develop cooperative approaches for risk reduction. The researchers have developed a Families SHARE workbook that has been evaluated by key stakeholders in the community and is currently being used in a cross-cultural randomized control trial. In addition, the section has begun to translate the Families SHARE workbook to a web-based application, providing a research infrastructure for families to use for gathering and sharing their family health history information.

Other goals in the Koehly group are to understand how genetics/genomics, biology and social relationships intersect. In one such project, the group studies genetic and other biological susceptibilities to social and environmental influences. They consider how genetic markers associated with sensation-seeking and risk-taking might influence the structuring of social networks. Their working hypothesis is that those with shared risk markers for sensation-seeking/risk-taking tendencies will be more likely to affiliate with each other, creating an informal social group that can be targeted for intervention. Such interventions might engage these informal groups in positive health behaviors that address members' shared biological needs for sensation-seeking. In so doing, these interventions may capitalize on informal social relationships for sustainable behavior change.

In another project, Dr. Koehly is investigating how social relationships become subject to strain. Her group examines how social connections may improve resilience or exacerbate vulnerability of families with high levels of caregiving burden. They recently completed a pilot study to investigate caregiving networks that surround those affected by Alzheimer's disease, characterized by professional care providers and informal caregivers. This work has expanded to consider caregiving across the life course by studying caregiving for children affected by chronic health conditions, such as inborn errors of metabolism or Tay Sachs disease, as well as for adults affected by diseases, such as Alzheimer's or Parkinson's disease. This research will consider biomarkers of stress and potential contagion of these markers among family members. The goal of this work is twofold: 1) identify factors associated with resilience to chronic stress in families with high caregiver burden, and 2) identify points of intervention that reduce stress response and improve health of those involved in caring for a loved one affected by chronic illness.

The third arm of research focuses on the development of methods to model the complexities of social systems in three broad areas. First, Dr. Koehly's research group explores problems in network measurement. This research aims to identify optimal approaches for combining multiple relational measurements that tap into the same underlying construct, with the goal of developing measures of reliability and validity for relational constructs. Second, the group aims to address the incomplete social network data common to the study of family systems or community-based research. These methods use a Bayesian approach and imputation methods to "fill in the blanks" observed due to missing nodes and missing relational ties, offering a fuller picture of participant family systems, and to apply social network methods developed for complete networks to these studies. Third, Dr. Koehly's group is developing methods to address questions related to informant accuracy. In doing so, they can identify key players in the network system that might be identified as family genomics health educators or primary care providers, based on assessments obtained from multiple informants.

Publications

Rao P, Kazak AE, Doerksen SE, Koehly LM, Verdery AM, Heitzenrater J , Harding BA, Byrnes CL, Costigan HJ, Rovniak LS, Sciamanna CN, Van Scoy LJ, Schmitz KH. AYA-UNITE: Lessons Learned on Intervention Development Promoting Social and Physical Health of Adolescent/Young Adult Cancer Survivors. Journal of Adolescent and Young Adult Oncology. in press.

Davidson H, Gelles S, Keller K, Zajdel M, Koehly L. Becoming a rare disease parent: An interpretive phenomenological analysis of parent-caregivers’ postpartum experiences. Qualitative Health Research. In Press.

Koehly LM, Manalel JA. Interconnected social convoys: Understanding health and well-being through linked personal networks. Advances in Life Course Research. 2023; 56: 100541. DOI: 10.1016/j.alcr.2023.100541.

Koehly LM, Ashida S, Sumrall S, Hyman S. Caregiving interactions and behaviors in the care of children with rare genetic or undiagnosed conditions. Journal of Child and Family Studies. DOI: 10.1007/s10826-023-02645-6.

Adams AD, Lin J, Bianchi DW, Bishop L, Sato T, Baxter LL, Hoffmann V, Koehly L, Guedj F. Embryonic Statistical Analyses Reveal Two Growth Phenotypes in Mouse Models of Down Syndrome. Am J Obstet Gynecol. 2023 Aug 4:S0002-9378(23)00532-X. doi: 10.1016/j.ajog.2023.07.056.

Zajdel M., Keller K., Mountcastle L., Koehly LM. (2023). Shared responsibility and network collaboration in caregiving. Social Networks. 74. 236-244. 10.1016/j.socnet.2023.05.002

Zajdel M., Swan T., Robinson T., Keller KR, Mountcastle L, & Koehly LM. Stress, coping, and physical health in caregiving. Translational Issues in Psychological Science. 2023; 9(2): 123-136. DOI: 10.1037/tps0000349.

Macfoy FG, Perilla M, Koehly LM. Variability in sickle cell knowledge by sickle cell status. Journal of Genetic Counseling. 2023; 32:916-925. DOI: 10.1002/jgc4.1702.

Mountcastle L, Zajdel M, Robinson T, Keller KR, Gelles S, Livinski AA, Kikani B, Lea DE, Koehly LM. The impact of caregiving for children with chronic conditions on the HPA axis: A scoping review. Front Neuroendocrinol. 2023 Feb 10;69:101062. doi: 10.1016/j.yfrne.2023.101062. Epub ahead of print.

Matshabane, OP, Whitted, C, & Koehly, LM. Addressing diversity and inclusion challenges in neuro-psychiatric and behavioral genomics research. Frontiers in Genetics. 2022; 13: 3435. 

Lin J, Shaw P, Curtis B, Unger L, Koehly LM. Dynamics of sadness by race, ethnicity, and income following George Floyd’s Death. SSM – Mental Health. 2022. doi: 10.1016/j.ssmmh.2022.100134.

Lin J, Zajdel M, Keller KR, Gilpin Macfoy FO, Shaw P, Curtis B, Ungar L, Koehly L. Life under stay-at-home orders: a panel study of change in social interaction and emotional wellbeing among older Americans during COVID-19 pandemic. BMC Public Health. 22:1777; 2022.  doi: 10.1186/s12889-022-14103-x.

Little ID, Koehly LM, Gunter C. Understanding changes in genetic literacy over time and in genetic research participants. Am J Hum Genet. 2022 Dec 1;109(12):2141-2151. doi: 10.1016/j.ajhg.2022.11.005. Epub 2022 Nov 22.

Granovetter MA, Sumrall S, Lea D, Gelles S, Koehly LM. Parent-Reported Caregiving Roles of Siblings of Children with Inborn Errors of Metabolism. J Dev Behav Pediatr. 2023 Feb 23. doi: 10.1097/DBP.0000000000001168. Epub ahead of print. 

Zajdel M, Davidson H, Lea D, Koehly LM. (2022). Links of we-talk to caregiver social network systems and healthJournal of Family Psychology. Advance online publication. doi: 10.1037/fam0001013

Bush L, Davidson H, Gelles S, Lea D, Koehly LM. Experiences of Families Caring for Children with Newborn Screening-Related Conditions: Implications for the Expansion of Genomics in Population-Based Neonatal Public Health Programs. Int J Neonatal Screen, 2022 May 23;8(2):35. doi: 10.3390/ijns8020035.

Manalel J, Sumrall S, Davidson H, Grewal M, Granovetter M, Koehly LM. Stress, coping, and positive aspects of caregiving among caregivers of children with rare disease. Psychology & Health, 2022. 

Cleary JL, Manalel JA, Ashida S, Marcum CS, Rewley J, Koehly L. Interpersonal Correlates of Dementia Caregivers' Emotional Support Networks: Considering Family History. Res Aging. 2022 May-Jun;44(5-6):405-413. 

Shaw P, Blizzard S, Shastri G, Kundzicz P, Curtis B, Ungar L, Koehly L. A cohort study into the effects on mental health of COVID-19 pandemic related behaviors. Psychological Medicine, 2021 Jul 12: 1-9. 

Ake J, Lin J, Wilkinson AV, Koehly LM. Motivating Mexican American adults to share family history with healthcare providers. Preventive Medicine Reports. 2021. doi: 10.1016/j.pmedr.2021.101384. Epub 2021.

Adams AD, Hoffmann V, Koehly L, Guedj F, Bianchi DW. Novel insights from fetal and placental phenotyping in 3 mouse models of Down syndrome. Am J Obstet Gynecol. 2021 Sep;225(3):296.e1-296.e13. 

Desine S, Eskin L, Bonham VL, Koehly LM. Social support networks of adults with Sickle Cell Disease. Journal of Genetic Counseling, 2021. doi: 10.1002/jgc4.1410. 

Hadley DW, Eliezer D, Addissie Y, Goergen A, Ashida S, Koehly L. Uptake and predictors of colonoscopy use in family members not participating in cascade genetic testing for Lynch syndrome. Scientific Reports, 10(1): 1-10, 2020.

Rewley, J, Koehly L, Marcum CS, Reed-Tsochas F. A passive monitoring tool using hospital administrative data enables earlier specific detection of healthcare-acquired infections. Journal of Hospital Infections, 106(3): 562-569, 2020.

Krivitsky P, Koehly LM, Marcum CS. Exponential-family random graph models for multi-layer networks. Psychometrika, 85(3): 630-659, 2020.

Marcum CS, Lea D, Eliezer D, Hadley DW, Koehly LM. The structure of emotional support networks in families affected by Lynch syndrome. Network Science, 8(4):492-507, 2020. doi: 10.1017/nws.2020.13.

Roll AE and Koehly LM. One social network, two perspectives: Social networks of people with Down syndrome based on self-reports and proxy reports. Journal of Applied Research in Intellectual Disabilities. 18 April 2020.

Manalel JA, Marcum CS, Calabrese S, de la Haye K, Hughes D, Prichard I, Hutchinson A, Wilson C, Koehly LM. Intergenerational exchange of healthful eating encouragement: Consideration of family ancestry and disease history. Family Systems and Health, 37(4): 302-313, 2019. 

Lin J, Myers M, Wilkinson AV, Koehly LM. Activating communal coping related to diabetes risk in Mexican-heritage families. Family & Community Health, 42: 245-253, 2019. 

Lin J, Myers MF, Koehly LM, Marcum CS. A Bayesian hierarchical logistic regression model of multiple informant family health histories. BMC Medical Research Methodology. 15 March 2019. 

Lienert J, Koehly L Reed-Tsochas F, Marcum CS. An efficient counting method for the colored triad census. Social Networks, 58: 136-142, 2019. 

Bigman G, Wilkinson AV, Vandewater WA, Daniel CR, Koehly LM, Spitz MR, Sargent JD. Viewing images of alcohol use in PG-13-rated movies and alcohol initiation in Mexican-heritage youth. Journal of Ethnicity in Substance Abuse. 17 January 2019. 

Song S, Marcum CS, Wilkinson AV, Shete S, Koehly LM. Genetic, psychological, and personal network factors for changes in binge drinking over two years among Mexican heritage adolescents in the United States. Annals of Behavioral Medicine, 53(2): 126-137, 2019. 

Skapinsky KF, Persky S, Lewis M, Goergen A, Ashida S, de Heer HD, Hadley D, Wilkinson AV, Koehly LM. Heart disease risk information, encouragement, and physical activity among Mexican-origin couples: Self- or spouse-driven change? Translational Behavioral Medicine. 8(1): 95-104, 2018. 

Marcum CS, Ashida S, Koehly L. Primary caregivers in a network context. J Gerontol B Psychol Sci Soc Sci. 2018. 

Lin J, Marcum CS, Myers MG, Koehly LM. Racial differences in family health history knowledge: Exploring the role of interpersonal mechanismsTranslational Behavioral Medicine. 8(4): 540-549. 2018.

Lin J, Marcum CS, Wilkinson AV, Koehly LM. Developing shared appraisals of diabetes risk through family health history feedback: the case of Mexican-heritage familiesAnnals of Behavioral Medicine. 52(3):262-271. 2018

Lea D, Shchelochkov O, Cleary J, Koehly LM. Dietary management of Propionic Acidemia: family caregiver perspectives and practicesJournal of Parenteral and Enteral Nutrition. Epub ahead of print. doi: 10.1002/jpen.1461. 2018.

P. Kouki, J. Pujara, C. Marcum, L. Koehly and L. Getoor, "Collective entity resolution in multi-relational familial networks. Knowledge and Information Systems," 2017 IEEE International Conference on Data Mining (ICDM), 2017, pp. 227-236, doi: 10.1109/ICDM.2017.32. 

Ashida, S, Marcum CS, Koehly LM. Unmet expectations in Alzheimer's family caregiving: Interactional characteristics associated with perceived under-contribution. The Gerontologist, 58(2): e46-e55, 2018. doi: 10.1093/geront/gnx141.

Lin J, Marcum CS, Myers MG, Koehly LM. Put the family back into family health history: A multiple-informant approachAmerican Journal of Preventive Medicine. 52(5): 640-644, 2017.

Lienert J, Marcum CS, Finney J, Reed-Tsochas F, Koehly LM. Social influence on 5-year survival in a longitudinal chemotherapy ward co-presence networkNetwork Science. 5(3): 308-327, 2017.

Goergen AF, Ashida S, Skapinsky K, de Heer HD, Wilkinson AV, Koehly LM. What You Don't Know: Improving family health history knowledge of diabetes and heart disease among multigenerational Mexican origin familiesPublic Health Genomics, 19(2): 93-101. doi: 10.1159/000443473. 2016.

de Heer HD, de la Haye K, Skapinsky K, Goergen AF, Wilkinson AV, Koehly LM. Let's Move Together: Impact of a family health history intervention on encouragement and co-engagement in physical activity of Mexican origin parents and childrenHealth Education and Behavior, 44(1): 141-152, 2016.

Marcum CS, Koehly LM. Inter-generational contact from a network perspectiveAdvances in Life Course Research. 24: 10-20. 2015.

Koehly LM, Morris BA, Skapinsky K, Goergen A, Ludden A. Evaluation of the Families SHARE workbook: an educational tool outlining disease risk and healthy guidelines to reduce risk of heart disease, diabetes, breast cancer, and colorectal cancer. BMC Public Health. 15: 1120. 2015.

Koehly LM, Ashida S, Schafer EJ, Ludden A. Caregiving networks - Using a network approach to identify missed opportunitiesJournals of Gerontology, Series B: Psychological Sciences and Social Science. 70(1): 143-154, 2015. 

Eliezer D, Hadley DW, Koehly LM. Exploring psychological responses to genetic testing for Lynch Syndrome within the family contextPsycho-oncology, doi: 10.1002/pon.3551.2014.

Hovick SR, Wilkinson AV, Ashida S, de Heer HD, Koehly LM. The impact of personalized risk feedback on Mexican Americans' perceived risk for heart disease and diabetesHealth Education Research, 29(2): 222-234. 2014. 

De la Haye K, de Heer HD, Wilkinson AV, Koehly LM. Predictors of parent-child relationships that support physical activity in Mexican American familiesJournal of Behavioral Medicine. Epub ahead of print. 2012.

Morris BA, Hadley DW, Koehly LM. The role of religious and existential well-being in families with Lynch Syndrome: Prevention, family communication, and psychosocial adjustmentJournal of Genetic Counseling, 22(4): 482-491. 2013.

Ashida S, Wilkinson AV, Koehly LM. Social influence and motivation to change health behaviors: Implications for diet and physical activityAmerican Journal of Health Promotion, 26(3):176-179, 2012. 

Cruz RA, Wilkinson AV, Bondy ML, Koehly LM. Psychometric evaluation of the Demographic Index of Cultural Exposure (DICE) in two Mexican-origin community samplesHispanic Journal of Behavioral Sciences, 34(3):404-420. 2012.

Koehly LM, Ashida S, Goergen AF, Skapinsky KF, Hadley DW, Wilkinson AW. Willingness of Mexican American adults to share family health history with health care providersAmerican Journal of Preventive Medicine, 40(6): 633-6. 2011. 

Ersig AL, Hadley DW, Koehly LM. Understanding patterns of health communication in families at risk for hereditary non-polyposis colorectal cancer: Examining the effect of conclusive vs. indeterminate genetic test resultsHealth Communication, 26(7): 587-94. 2011.

Ashida S, Hadley DW, Goergen AF, Skapinsky KF, Devlin H, Koehly LM. The importance of older family members in providing social resources and promoting cancer screening in families with a hereditary cancer syndromeThe Gerontologist, 51(6): 833-42. 2011.

McBride CM, Bowen D, Brody LC, Condit CM, Croyle R, Gwinn M, Khoury M, Koehly LM, Korf B, Marteau T, McLeroy K, Patrick K, Valente TW. Future health applications of genomics: Priorities for communication, behavioral, and social science researchAmerican Journal of Preventive Medicine, 38(5):556-565, 2010.

Ashida S, Wilkinson AV, Koehly LM. Motivation for health screening: Evaluation of social influence among Mexican-American adultsAmerican Journal of Preventive Medicine, 38(4): 396-402, 2010. 

Koehly, LM, Peters, JA, Kenen, R, Hoskins, L, Ersig, AL, Kuhn, N, Loud, J, and Greene, MH. Characteristics of health information gatherers, disseminators, and blockers within families at risk of hereditary cancer: Implications for family health education interventionsAmerican Journal of Public Health, 99(12): 2203-9. 2009.

Ersig, AL, Williams, JK, Hadley, DW, and Koehly, LM. Communication, encouragement, and cancer screening in families with and without mutations for hereditary non-polyposis colorectal cancerGenetics in Medicine, 11(10): 728-34. 2009.

 

Book Chapters & Excerpts

Lienert J, Reed-Tsochas F, Koehly L, Marcum CS. Using hospital administrative data to infer patient-patient contact via the consistent co-presence algorithm. 2019 IEEE International Conference on Big Data (Big Data), Los Angeles, CA, USA, 2019, pp. 2756-2762.

Welch LR, Koehly LM, Elnitski L. Shared regulatory motifs in promoters of human DNA repair genes. Chapter in I. Kruman (Ed). DNA Repair / Book 4, pp. 67-84. Rijeka, Croatia: INTECH Publishers. 2011.

Koehly LM, McBride CM. Genomic risk information for common health conditions: Maximizing kinship-based health promotion. Chapter in K. Tercyak (Ed). Handbook of Genomics and the Family, pp.407-436. New York: Springer. 2010.

Koehly LM, Pattison P. Random graph models for social networks: multiple relations or multiple raters. In: Carrington P, Scott J, and Wasserman S (Eds). Models and Methods in Social Network Analysis, pp. 162-191. New York: Cambridge University Press. 2005.

Social Network Methods Section Staff

Kristen Judy
Kristen Judy, M.A.
  • Scientific Program Analyst
  • Social Network Methods Section
Tebine Otubu
Tebine Otubu, MSW, LMSW
  • Clinical Research Coordinator
  • Social Network Methods Section
Lauren Edgar
Lauren Edgar, DNP, MSN-Ed, RN, FNP
  • Postdoctoral Fellow
  • Social Network Methods Section
Raegan Bishop
Raegan Bishop, Ph.D.
  • Postdoctoral Fellow
  • Social Network Methods Section
Marlena Fisher
Marlena Fisher, Ph.D., RN, CNL
  • Postdoctoral Fellow
  • Social Network Methods Section
Patricia Cooper
Patricia Cooper, M.S., LCPC
  • Clinical Research Coordinator
  • Social Network Methods Section
Lisa DeRoo
Lisa A. DeRoo, M.P.H., Ph.D.
  • Staff Scientist
  • Social Network Methods Section

Last updated: October 8, 2024