Journal of Genetic Counseling

, Volume 10, Issue 4, pp 289–309 | Cite as

The Colored, Eco-Genetic Relationship Map (CEGRM): A Conceptual Approach and Tool for Genetic Counseling Research

  • Regina Kenen
  • June Peters
Article

Abstract

The Colored Ecological and Genetic Relational Map (CEGRM) [pronounced see-gram] is a conceptual approach and tool for presenting information about family and nonkin relationships and stories about inherited diseases in a simple, understandable form. It combines information that can be derived from pedigrees, genograms, ecomaps, and social network analysis in a single, or series of, pictorial maps based on colors and shapes. The CEGRM is based on a social systems perspective, particularly emphasizing social exchange and resource theories. The CEGRM should be particularly useful in genetic counseling research with members of suspected cancer-risk families or families with other late-onset inherited diseases. A genetic counseling client comes with a social history and context as well as a genetic one. Client decision-making in terms of reproductive plans, therapeutic intervention, lifestyle behavior and sharing or withholding of genetic information frequently becomes enmeshed with preexisting psycho-social relationships among biological kin, affinal kin (in-laws) and fictive kin (friends who act as family). The CEGRM makes it easier to compare different types of social interactions between the client and his/her significant others and among family members on the same dimensions.

cancer genetics late-onset genetic disorders genetic counseling genograms social network analysis family relationships nonkin relationships 

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

REFERENCES

  1. Beauchesne M, Kelley B, Gauthier MA (1997) The genogram: A health assessment tool. Nurse Educator 22(3):9,16.Google Scholar
  2. Bennett RL, Steinhaus KA, Uhrich SB, O'sullivan CK, Resta RG, Lochner-Doyle D, Markel DS, Vincent V, Mamanishi J (1995) Recommendations for standardized pedigree nomenclature. Am J Human Genet 56:745–52.Google Scholar
  3. Blau P (1986) Exchange and Power in Social Life. rev. edn. New Brunswick, NJ: Transaction Books.Google Scholar
  4. Bowen DJ, Patenaude AF, Vernon SW (1999) Psychosocial issues in cancer genetics: From the laboratory to the public. Cancer Epidemiol Biomarkers Prev 8:326–328.Google Scholar
  5. Codori A-M, Petersen GM, Miglioretti DL, Larkin DL, Bushey MT, Young C, Brensinger JD, Johnson K, Bacon JA, Booker SV (1999) Attitudes toward colon cancer gene testing: Factors predicting test uptake. Cancer Epidemiol Biomarkers Prev 8:345–351.Google Scholar
  6. Croyle RT, Lerman C (1993) Interest in genetic testing for colon cancer susceptibility: Cognitive and emotional correlates. Preventive Med 22:284–292.Google Scholar
  7. Daly M, Farmer J, Farmer J, Harrop-Stein C, Montgomery S, Itzen M, Costalis JW, Rogatko A, Miller S, Balshem A, Gillespie D (1999) Exploring family relationships in cancer risk counseling using the genogram. Cancer Epidemiol Biomarkers Prev 8: 393–398.Google Scholar
  8. Eeles R (1996) Testing for the breast cancer predisposition gene. BRCA1. Br Med J 313:572–3.Google Scholar
  9. Eunpu DL (1997) Systematically-based psychotherapeutic techniques in genetic counseling. J Genet Counsel 6:1–20.Google Scholar
  10. Eunpu DL (1999) The family belief and attitude history: An aid to decision making and coping in genetic counseling. Am J Human Genet 65( Supplement):A13.Google Scholar
  11. Foa UG, Converse, Jr. J, Tornblom KY, Foa EB (1993) Resource Theory: Explorations and Applications. San Diego, CA: Academic Press.Google Scholar
  12. Foa UG, Foa EB (1974) Social Structures of the Mind. Springfield, IL: Charles C Thomas.Google Scholar
  13. Friedman EH (1991) Bowen theory and therapy. In: Gurman A and Kniskern D (eds) Handbook of Family Therapy, Vol 2. New York: Brunner/Mazel, pp134–170.Google Scholar
  14. Geller G, Doksum T, Bernhardt BA, Metz SA (1999) Participation in breast cancer susceptibility testing protocols: Influence of recruitment source, altruism, and family involvement on women's decisions. Cancer Epidemiol Biomarkers Prev 8:377–383.Google Scholar
  15. Geller G, Tambor ES, Bernhardt VA, Wissow LS, Fraser G (2000) Mothers and daughters from breast cancer families: A qualitative study of their perceptions of risks and benefits associated with minor's participation in genetic susceptibility research. J Am Med Womens Assoc 55: 280–284.Google Scholar
  16. Glanz K, Grove J, Lerman C, Gotay C, LeMarchand L (1999) Correlates of intentions to obtain genetic counseling and colorectal cancer gene testing among at-risk relatives from three ethnic groups. Cancer Epidemiol Biomarkers Prev 8:329–336.Google Scholar
  17. Green JM, Richards MPM, Murton F, Stratham H, Hallowell N (1997) Family communication and genetic counseling: The case of hereditary breast and ovarian cancer. J Genet Counsel 6:45–60.Google Scholar
  18. Hallowell N, Richards MPM (1997) Understanding life's lottery: An evaluation of studies of genetic risk awareness. J Health Psychol 2:149–159.Google Scholar
  19. Hamann HA, Croyle RT, Venne VL, Baty BJ, Smith KR, Botkin JR (2000) Attitudes toward the genetic testing of children among adults in a Utah-based kindred tested for a BRCA1 mutation. Am J Med Genet 92:25–32.Google Scholar
  20. Hartman A (1995) Diagrammatic assessment of family relationships. The J Contemp Human Serv Feb:111–122.Google Scholar
  21. Homans G C (1974) Social Behavior: Its Elementary Forms. New York: Hartcourt Brace Jovanovich.Google Scholar
  22. Kenen R, Eeles R, Ardern-Jones A, Mitchell R (2001) Family stories, communication patterns and the use of heuristics in familial cancer families: An exploratory, qualitative research study. ELSI 10th Anniversary Celebration Conference, National Institutes of Health, Bethesda, MD, 17 Jan 2001.Google Scholar
  23. Kenen R, Smith ACM (1995) Genetic counseling for the next 25 years: Models for the future. J Genet Counsel 4:115–124.Google Scholar
  24. Kenen R, Smith ACM, Watkins C, Zuber-Pittore (2000) To use or not to use: Male partners' perspectives on decision making about prenatal diagnosis. J Genet Counsel 9:33–45.Google Scholar
  25. Kessler S, Levine EK (1987) Psychological aspects of genetic counseling. IV. The subjective assessment of probability. Am J Med Genet 28:361–370.Google Scholar
  26. Kuehl B (1995) The solution-oriented genogram: A collaborative approach. J Marit Fam Ther 21:239–250.Google Scholar
  27. Lerman C, Narod S, Schulman K, Hughes C, Gomez-Caminero A, Bonney G, Gold K, Trock B, Main D, Lynch J, Fulmore C, Synder C, Lemon SJ, Conway T, Tonin P, Lenoir G, Lynch H (1996) BRCA1 testing in families with hereditary breast-ovarian cancer. J Am Med Assoc 275:1885–1892.Google Scholar
  28. Lewis KG (1989) The use of color-coded genograms in family therapy. J Marit Fam Ther 15:169–176.Google Scholar
  29. Lippman-Hand A, Fraser FC (1979) Genetic counseling: Provision and reception of Information. Am J Med Genet 3:113–127.Google Scholar
  30. McGoldrick M, Gerson R (1985) Genograms in Family Assessment. New York: Norton.Google Scholar
  31. McGoldrick M, Gerson R, Shellenberger S (1999) Genograms: Assessment and Intervention, 2nd edn. New York: Norton.Google Scholar
  32. Parsons EP, Atkinson P (1992) Lay constructions of genetic risk. Sociol Health Illness 14:437–455.Google Scholar
  33. Peters JA (1994) Familial cancer risk: Part II. Breast cancer risk counseling and genetic susceptibility testing. J Oncol Manag 3:14–22.Google Scholar
  34. Peters JA, Djurdjinovic L, Baker D (1999) The genetic self: The Human Genome Project, genetic counseling, and family therapy. Fam Syst Health 17:5–24.Google Scholar
  35. Resta R (1993) The crane's foot: The rise of the pedigree in human genetics. J Genet Counsel 2:235–260.Google Scholar
  36. Richards M (1996) Families, kinship and genetics. In: Marteau T and Richards M (eds) The Troubled Helix: Social and Psychological Implications of the New Human Genetics. New York: Cambridge University Press.Google Scholar
  37. Richards MPH (2000) Children's understanding of inheritance and family. Child Psychol Psychiatry Rev 5:2–7.Google Scholar
  38. Roberts LW, Battaglia J, Smithpeter M, Epstein RS (1999) An office on main street: Health care dilemmas in small communities. Hastings Center Rep 29:28–37.Google Scholar
  39. Rolland JS (1994) Families, Illness, & Disability. New York: Wiley-Liss.Google Scholar
  40. Roloff ME (1981) Interpersonal Communication: The Social Exchange Approach. Beverly Hills, CA: Sage.Google Scholar
  41. Schneider KA, Marnane D (1997) Cancer risk counseling: How is it different? J Genet Counsel 6:97–110.Google Scholar
  42. Sherman R (2000) The Intimacy genogram. In: Watts RE et al. (eds) Techniques in Marriage and Family Counseling, Vol. 1. Alexandria, VA: American Counseling Association.Google Scholar
  43. Shiloh S (1996) Decision-making in the context of genetic risk. In Marteau T and Richards M (eds) The Troubled Helix: Social and Psychological Implications of the New Human Genetics. New York: Cambridge University Press, pp 82–103.Google Scholar
  44. Smith KR, West JA, Croyle RT, Botkin JR (1999) Moderating effect of siblings' test results on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiol Biomarkers Prev 8:385–392.Google Scholar
  45. Stack CB (1974) All Our Kin: Strategies for Survival in a Black Community. New York: Harper & Row.Google Scholar
  46. Stark R (1997) Sociology, 7th edn. Belmont, CA: Wadsworth.Google Scholar
  47. Turner J (1998) The Structure of Sociological Theory. Belmont, CA: Wadsworth.Google Scholar
  48. Watson M, Duvivier V, Wade W, Walsh M, Ashley S, Davidson J, Papaikonomou M, Murday V, Sacks N, Eeles R (1998) Family history of breast cancer: What do women understand and recall about their genetic risk? J Med Genet 35:731–738.Google Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2001

Authors and Affiliations

  • Regina Kenen
    • 1
  • June Peters
    • 2
  1. 1.Department of Sociology and AnthropologyThe College of New JerseyEwing
  2. 2.Clinical Genetics Branch, Genetic Epidemiology DivisionNational Cancer InstituteRockville

Personalised recommendations