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Communicating genetic risk information within families: a review

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Abstract

This review of family communication of genetic risk information addresses questions of what the functions and influences on communication are; what, who and how family members are told about genetic risk information; what the impact for counsellee, relative and relationships are; whether there are differences by gender and condition; and what theories and methodologies are used. A systematic search strategy identified peer-reviewed journal articles published 1985–2009 using a mixture of methodologies. A Narrative Synthesis was used to extract and summarise data relevant to the research questions. This review identified 33 articles which found a consistent pattern of findings that communication about genetic risk within families is influenced by individual beliefs about the desirability of communicating genetic risk and by closeness of relationships within the family. None of the studies directly investigated the impact of communication on counsellees or their families, differences according to gender of counsellee or by condition nor alternative methods of communication with relatives. The findings mainly apply to late onset conditions such as Hereditary Breast and Ovarian Cancer. The most frequently used theory was Family Systems Theory and methods were generally qualitative. This review points to multifactorial influences on who is communicated with in families and what they are told about genetic risk information. Further research is required to investigate the impact of genetic risk information on family systems and differences between genders and conditions.

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References

  1. Adelsward V, Sachs L (2003) The messenger’s dilemmas—giving and getting information in genealogical mapping for hereditary cancer. Health Risk Soc 5(2):125–138

    Article  Google Scholar 

  2. Aktan-Collan K, Haukkala A, Pylvänäinen K, Järvinen JA, Aaltonen LA, Peltomäki P, Rantanen E, Kääriäinen H, Mecklin J-P (2007) Direct contact in inviting high-risk members of hereditary colon cancer families to genetic counselling and DNA testing. J Med Genetics 44

  3. Ardern-Jones A, Kenen R, Eeles R (2005) Too much, too soon? Patients and health professionals’ views concerning the impact of genetic testing at the time of breast cancer diagnosis in women under the age of 40. Eur J Cancer Care 14(3):272–281

    Article  CAS  Google Scholar 

  4. Bakos AD, Hutson SP, Loud JT, Peters JA, Giusti RM, Greene MH (2008) BRCA mutation-negative women from hereditary breast and ovarian cancer families: a qualitative study of the BRCA-negative experience [see comment]. Health Expect 11(3):220–231

    Article  PubMed  Google Scholar 

  5. Blandy C, Chabal F, Stoppa-Lyonnet D, Julian-Reynier C (2003) Testing participation in BRCA1/2-positive families: initiator role of index cases. Genetic Testing 7(3):225–233

    Article  PubMed  Google Scholar 

  6. Carlsson AH, Bjorvatn C, Engebretsen LF, Berglund G, Natvig GK (2004) Psychosocial factors associated with quality of life among individuals attending genetic counseling for hereditary cancer. J Genetic Couns 13(5):425–445 [References]

    Article  Google Scholar 

  7. Chapple A, May C (1996) Genetic knowledge and family relationships: two case studies. Health Soc Care Commun 4(3):166–171

    Article  Google Scholar 

  8. Claes E, Denayer L, Evers-Kiebooms G, Boogaerts A, Legius E (2004) Predictive testing for hereditary non-polyposis colorectal cancer: motivation, illness representations and short-term psychological impact. Patient Educ Couns 55(2):265–274

    Article  PubMed  Google Scholar 

  9. Clarke S, Butler K, Esplen MJ (2008) The phases of disclosing BRCA1/2 genetic information to offspring. Psycho Oncol 17(8):797–803 Wiley

    Article  Google Scholar 

  10. d’Agincourt-Canning L (2001) Experiences of genetic risk: disclosure and the gendering of responsiblity. Bioethics 15(3):231–247

    Article  PubMed  Google Scholar 

  11. Daly PA, Nolan C, Green A, Ormiston W, Cody N, McDevitt T, O’hIci B, Byrne D, McDermott E, Carney DN, O’Higgins N, Barton DE (2003) Predictive testing for BRCA1 and 2 mutations: a male contribution. Ann Oncol 14(4):549–553

    Article  CAS  PubMed  Google Scholar 

  12. Epstein CJ et al (1975) Genetic counseling. Am J Hum Genet 27:240–242

    Google Scholar 

  13. Finlay E, Stopfer JE, Burlingame E, Evans KG, Nathanson KL, Weber BL, Armstrong K, Rebbeck TR, Domchek SM (2008) Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genetic Testing 12(1):81–91

    Article  PubMed  Google Scholar 

  14. Forrest K, Simpson SA, Wilson BJ, van Teijlingen ER, Mckee L, Haites N, Matthews E (2003) To tell or not to tell: Barriers and facilitators in family communication about genetic risk. Clin Genet 64(4):317–326

    Article  CAS  PubMed  Google Scholar 

  15. Foster C, Eeles R, Ardern-Jones A, Moynihan C, Watson M (2004) Juggling roles and expectations: dilemmas faced by women talking to relatives about cancer and genetic testing. Psychol Health 19(4):439–455 [References]

    Article  Google Scholar 

  16. Gaff C, Collins V, Symes T, Halliday G (2005) Facilitating family communication about predictive genetic testing: probands’ perrceptions. J Genetic Couns 14(2):133–139

    Article  Google Scholar 

  17. Gaff CL, Clarke AJ, Atkinson P, Sivell S, Elwyn G, Iredale R, Thornton H, Dundon J, Shaw C, Edwards A (2007) Process and outcome in communication of genetic information within families: a systematic review. Eur J Hum Genet 15(10):999–1011

    Article  PubMed  Google Scholar 

  18. Green J, Richards M, Murton F, Statham H, Hallowell N (1997) Family communication and genetic counseling: the case of hereditary breast and ovarian cancer. J Genetic Couns 6(1):45–60

    Article  Google Scholar 

  19. Haahr M (2009) Random number generator. http://www.random.org/integers/. Accessed 3 Jan 2009

  20. Hamilton RJ, Bowers BJ, Williams JK (2005) Disclosing genetic test results to family members.[see comment]. J Nurs Schol 37(1):18–24

    Article  Google Scholar 

  21. Hughes C, Lerman C, Schwartz M, Peshkin BN, Wenzel L, Narod S, Corio C, Tercyak KP, Hanna D, Isaacs C, Main D (2002) All in the family: evaluation of the process and content of sisters’ communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet 107(2):143–150

    Article  PubMed  Google Scholar 

  22. Janis IL, Feshbach S (1953) Effects of fear-arousing communications. J Abnorm Soc Psychol 48(1):78–92

    Article  CAS  Google Scholar 

  23. Julian-Reynier C, Eisinger F, Chabal F, Lasset C, Nogues C, Stoppa-Lyonnet D, Vennin P, Sobol H (2000) Disclosure to the family of breast/ovarian cancer genetic test results: patient’s willingness and associated factors. Am J Med Genet 94(1):13–18

    Article  CAS  PubMed  Google Scholar 

  24. Keenan KF, Simpson SA, Wilson BJ, van Teijlingen ER, Mckee L, Haites N, Matthews E (2005) ‘It’s their blood not mine’: who’s responsible for (not) telling relatives about genetic risk? Health Risk Soc 7(3):209–226

    Article  Google Scholar 

  25. Kenen R, Ardern-Jones A, Eeles R (2003) “Family stories and the use of heuristics: women from suspected hereditary breast and ovarian cancer (HBOC) families. Sociol Health Illn 25(7):838–865

    Article  PubMed  Google Scholar 

  26. Kenen R, Arden-Jones A, Eeles R (2004) We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer (HBOC). Psycho Oncol 13(5):335–345

    Article  Google Scholar 

  27. Koehly LM, Peterson SK, Watts BG, Kempf KK, Vernon SW, Gritz ER (2003) A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Cancer Epidemiol Biomarkers Prev 12(4):304–313

    PubMed  Google Scholar 

  28. Lerman C, Peshkin BN, Hughes C, Isaacs C (1998) Family disclosure in genetic testing for cancer susceptability: determinants and consequences. J Health Care Law Policy 1:353–427

    Google Scholar 

  29. McGivern B, Everett J, Yager GG, Baumiller RC, Hafertepen A, Saal HM (2004) Family communication about positive BRCA1 and BRCA2 genetic test results. Genetics Med 6(6):503–509

    Google Scholar 

  30. Mellon S, Berry-Bobovski L, Gold R, Levin N, Tainsky MA (2006) Communication and decision-making about seeking inherited cancer risk information: findings from female survivor-relative focus groups. Psycho Oncol 15(3):193–208

    Article  Google Scholar 

  31. Mesters I, Ausems A, De Vries H (2005) General public’s knowledge, interest and information needs related to genetic cancer: an exploratory study. Eur J Cancer Prev 14(1):69–75

    Article  CAS  PubMed  Google Scholar 

  32. Metcalfe KA, Liede A, Trinkaus M, Hanna D, Narod SA (2002) Evaluation of the needs of spouses of female carriers of mutations in BRCA1 and BRCA2. Clin Genet 62(6):464–469

    Article  CAS  PubMed  Google Scholar 

  33. Michie S, Marteau T (1996) Genetic counselling: some issues of theory and practice. In: Marteau T, Richards MPM (Eds) The troubled helix: social and psychological implications of the new human genetics. Cambridge University Press, Cambridge

  34. Ormondroyd E, Moynihan C, Watson M, Foster C, Davolls S, Ardern-Jones A, Eeles R (2007) Disclosure of genetics research results after the death of the patient participant: a qualitative study of the impact on relatives. J Genetic Couns 16(4):527–538

    Article  CAS  Google Scholar 

  35. Ormondroyd E, Moynihan C, Ardem-Jones A, Eeles R, Foster C, Davolls S, Watson M (2008) Communicating genetics research results to families: problems arising when the patient participant is deceased. Psycho Oncol 17(8):804–811 Wiley

    Article  CAS  Google Scholar 

  36. Parsons T (1951) Illness and the role of the physician—a sociological perspective. J Orthopsy 21(JUL):452–460

    Google Scholar 

  37. Patenaude AF (2005) Genetic testing for cancer: psychological approaches for helping patients and families. American Psychological Association, Washington

    Book  Google Scholar 

  38. Peterson SK, Watts BG, Koehly LM, Vernon SW, Baile WF, Kohlmann WK, Gritz ER (2003) How families communicate about HNPCC genetic testing: findings from a qualitative study. Am J Med Genetics 119C(1):78–86

    Article  Google Scholar 

  39. Petticrew M, Roberts H (2006) Systematic reviews in the social sciences: a practical guide. Blackwell, Oxford

    Book  Google Scholar 

  40. Rolland J (2006) Genetics, family systems and multicultural influences. Family Syst Health 24(4):425–441

    Google Scholar 

  41. Rolland JS, Akamatsu T, Stephens M, Hobfoll S, Crowther J (1994) Family health psychology. J Marital Family Ther 20(4):427

    Google Scholar 

  42. Schneider KA, Chittenden AB, Branda KJ, Keenan MA, Joffe S, Patenaude AF, Reynolds H, Dent K, Eubanks S, Goldman J, LeRoy B, Warren NS, Taylor K, Vockley CW, Garber JE (2006) Ethical issues in cancer genetics: I 1) whose information is it? J Genetic Couns 15(6):491–503

    Google Scholar 

  43. Seymour K, Addington-Hall J, Lucassen A, Foster C (2010) What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research. J Genetic Couns 19(4):330–342

    Google Scholar 

  44. Smith KR, Zick CD, Mayer RN, Botkin JR (2002) Voluntary disclosure of BRCA1 mutation test results. Genetic Testing 6(2):89–92

    Article  PubMed  Google Scholar 

  45. Sobel SK, Cowan DB (2000) Impact of genetic testing for Huntington disease on the family system. Am J Med Genet 90(1):49–59

    Article  CAS  PubMed  Google Scholar 

  46. van den Nieuwenhoff HWP, Gielen C, De Vries NK (2007) Family communication regarding inherited high cholesterol: why and how do patients disclose genetic risk? Soc Sci Med 65(5):1025–1037

    Article  PubMed  Google Scholar 

  47. Wagner CJ, Itzen M, Malick J, Babb JS, Bove B, Godwin AK, Daly MB (2003) Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program’s experience. Am J Med Genetics 119C(1):11–18

    Article  Google Scholar 

  48. Wilson BJ, Forrest K, Van Teijlingen ER, Mckee L, Haites N, Matthews E, Simpson SA (2004) Family communication about genetic risk: the little that is known. Commun Genetics 7(1):15–24

    Article  Google Scholar 

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  1. CORE, Research Department of Clinical, Educational & Health Psychology, University College London, 19 Torrington Place, London, WC1E 7HB, UK

    Mel Wiseman, Caroline Dancyger & Susan Michie

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  1. Mel Wiseman
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  2. Caroline Dancyger
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Correspondence to Mel Wiseman.

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Wiseman, M., Dancyger, C. & Michie, S. Communicating genetic risk information within families: a review. Familial Cancer 9, 691–703 (2010). https://doi.org/10.1007/s10689-010-9380-3

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