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Published in:

01-12-2010

Communicating genetic risk information within families: a review

Authors: Mel Wiseman, Caroline Dancyger, Susan Michie

Published in: Familial Cancer | Issue 4/2010

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.

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

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

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):272–281CrossRef

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):220–231CrossRefPubMed

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):225–233CrossRefPubMed

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]CrossRef

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

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):265–274CrossRefPubMed

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

10.

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

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):549–553CrossRefPubMed

12.

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

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):81–91CrossRefPubMed

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):317–326CrossRefPubMed

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]CrossRef

16.

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

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):999–1011CrossRefPubMed

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):45–60CrossRef

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):18–24CrossRef

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):143–150CrossRefPubMed

22.

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

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):13–18CrossRefPubMed

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):209–226CrossRef

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):838–865CrossRefPubMed

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):335–345CrossRef

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):304–313PubMed

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

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

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):193–208CrossRef

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):69–75CrossRefPubMed

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):464–469CrossRefPubMed

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):527–538CrossRef

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 WileyCrossRef

36.

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

37.

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

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):78–86CrossRef

39.

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

40.

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

41.

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

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

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

44.

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

45.

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

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):1025–1037CrossRefPubMed

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):11–18CrossRef

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):15–24CrossRef

Title: Communicating genetic risk information within families: a review
Authors: Mel Wiseman
Caroline Dancyger
Susan Michie
Publication date: 01-12-2010
Publisher: Springer Netherlands
Published in: Familial Cancer / Issue 4/2010
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI: https://doi.org/10.1007/s10689-010-9380-3

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