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Erschienen in: Familial Cancer 4/2010

01.12.2010

Disclosing cancer genetic information within families: perspectives of counselees and their at-risk relatives

verfasst von: Afsaneh Hayat Roshanai, Claudia Lampic, Richard Rosenquist, Karin Nordin

Erschienen in: Familial Cancer | Ausgabe 4/2010

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Abstract

Purpose

The aim of the present descriptive study was to investigate the experience of sharing genetic information among cancer genetic counselees and their at-risk relatives.

Methods

In total, 147 cancer genetic counselees and 81 of their at-risk relatives answered to a study specific questionnaire and/or were interviewed. Counselees’ communication of genetic information to at-risk relatives was assessed with regard to who they informed, how they felt, and how they perceived their relatives’ reactions. In addition, at-risk relatives’ experiences of receiving genetic information were studied.

Results

Most of the counselees had shared the genetic information received at the counseling session personally with their at-risk relatives. The majority of the counselees (68%) reported positive or neutral feelings about sharing the genetic information with their relatives while 9% stated negative feelings. Counselees mostly interpreted the relatives’ reactions to the information as positive or neutral (62% of responses), and in few cases as negative (14% of responses). About half of relatives reported positive or neutral reactions (54%) to the received information, while about one-fifth reported negative reactions (22%). Nevertheless, most relatives were satisfied with the received information and half of the relatives intended to seek genetic counseling themselves.

Conclusion

Sharing genetic information to at-risk relatives appears to be accomplished without any major difficulties or negative feelings. However, more assistance may be needed to optimize the communication of the genetic information within at-risk families.
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Fußnoten
1
From now on referred to as relatives in the intervention or relatives in the control group.
 
Literatur
1.
Zurück zum Zitat Miesfeldt S, Cohn WF, Jones SM, Ropka ME, Weinstein JC (2003) Breast cancer survivors’ attitudes about communication of breast cancer risk to their children. Am J Med Genet C Semin Med Genet 119C(1):45–50CrossRefPubMed Miesfeldt S, Cohn WF, Jones SM, Ropka ME, Weinstein JC (2003) Breast cancer survivors’ attitudes about communication of breast cancer risk to their children. Am J Med Genet C Semin Med Genet 119C(1):45–50CrossRefPubMed
2.
Zurück zum Zitat Forrest LE, Delatycki MB, Skene L, Aitken M (2007) Communicating genetic information in families—a review of guidelines and position papers. Eur J Hum Genet 15(6):612–618CrossRefPubMed Forrest LE, Delatycki MB, Skene L, Aitken M (2007) Communicating genetic information in families—a review of guidelines and position papers. Eur J Hum Genet 15(6):612–618CrossRefPubMed
3.
Zurück zum Zitat Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, Denayer L, Legius E (2003) Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. Am J Med Genet A 116A(1):11–19CrossRefPubMed Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, Denayer L, Legius E (2003) Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. Am J Med Genet A 116A(1):11–19CrossRefPubMed
4.
Zurück zum Zitat Hallowell N, Foster C, Eeles R, Ardern-Jones A, Murday V, Watson M (2003) Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information. J Med Ethics 29(2):74–79 discussion 80-3CrossRefPubMed Hallowell N, Foster C, Eeles R, Ardern-Jones A, Murday V, Watson M (2003) Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information. J Med Ethics 29(2):74–79 discussion 80-3CrossRefPubMed
5.
Zurück zum Zitat d’Agincourt-Canning L (2001) Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics 15(3):231–247CrossRefPubMed d’Agincourt-Canning L (2001) Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics 15(3):231–247CrossRefPubMed
6.
Zurück zum Zitat Forrest K, Simpson SA, Wilson BJ, van Teijlingen ER, McKee L, Haites N et al (2003) To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clin Genet 64(4):317–326CrossRefPubMed Forrest K, Simpson SA, Wilson BJ, van Teijlingen ER, McKee L, Haites N et al (2003) To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clin Genet 64(4):317–326CrossRefPubMed
7.
Zurück zum Zitat Cypowyj C, Eisinger F, Huiart L, Sobol H, Morin M, Julian-Reynier C (2009) Subjective interpretation of inconclusive BRCA1/2 cancer genetic test results and transmission of information to the relatives. Psychooncology 18(2):209–215CrossRefPubMed Cypowyj C, Eisinger F, Huiart L, Sobol H, Morin M, Julian-Reynier C (2009) Subjective interpretation of inconclusive BRCA1/2 cancer genetic test results and transmission of information to the relatives. Psychooncology 18(2):209–215CrossRefPubMed
8.
Zurück zum Zitat Hallowell N, Foster C, Ardern-Jones A, Eeles R, Murday V, Watson M (2002) Genetic testing for women previously diagnosed with breast/ovarian cancer: examining the impact of BRCA1 and BRCA2 mutation searching. Genet Test 6(2):79–87CrossRefPubMed Hallowell N, Foster C, Ardern-Jones A, Eeles R, Murday V, Watson M (2002) Genetic testing for women previously diagnosed with breast/ovarian cancer: examining the impact of BRCA1 and BRCA2 mutation searching. Genet Test 6(2):79–87CrossRefPubMed
9.
Zurück zum Zitat Hughes C, Lerman C, Schwartz M, Peshkin BN, Wenzel L, Narod S et al (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 Hughes C, Lerman C, Schwartz M, Peshkin BN, Wenzel L, Narod S et al (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
10.
Zurück zum Zitat Hamilton RJ, Bowers BJ, Williams JK (2005) Disclosing genetic test results to family members. J Nurs Scholarsh 37(1):18–24CrossRefPubMed Hamilton RJ, Bowers BJ, Williams JK (2005) Disclosing genetic test results to family members. J Nurs Scholarsh 37(1):18–24CrossRefPubMed
11.
Zurück zum Zitat Smith KR, Zick CD, Mayer RN, Botkin JR (2002) Voluntary disclosure of BRCA1 mutation test results. Genet Test 6(2):89–92CrossRefPubMed Smith KR, Zick CD, Mayer RN, Botkin JR (2002) Voluntary disclosure of BRCA1 mutation test results. Genet Test 6(2):89–92CrossRefPubMed
12.
Zurück zum Zitat Gallo AM, Angst DB, Knafl KA (2009) Disclosure of genetic information within families. Am J Nurs 109(4):65–69PubMed Gallo AM, Angst DB, Knafl KA (2009) Disclosure of genetic information within families. Am J Nurs 109(4):65–69PubMed
13.
Zurück zum Zitat Douglas HA, Hamilton RJ, Grubs RE (2009) The effect of BRCA gene testing on family relationships: a thematic analysis of qualitative interviews. J Genet Couns 18(5):418–435CrossRefPubMed Douglas HA, Hamilton RJ, Grubs RE (2009) The effect of BRCA gene testing on family relationships: a thematic analysis of qualitative interviews. J Genet Couns 18(5):418–435CrossRefPubMed
14.
Zurück zum Zitat Hallowell N, Ardern-Jones A, Eeles R, Foster C, Lucassen A, Moynihan C et al (2005) Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clin Genet 67(6):492–502CrossRefPubMed Hallowell N, Ardern-Jones A, Eeles R, Foster C, Lucassen A, Moynihan C et al (2005) Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clin Genet 67(6):492–502CrossRefPubMed
15.
Zurück zum Zitat Adelswäard 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 Adelswäard 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
16.
Zurück zum Zitat Patenaude AF, Dorval M, DiGianni LS, Schneider KA, Chittenden A, Garber JE (2006) Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell. J Clin Oncol 24(4):700–706CrossRefPubMed Patenaude AF, Dorval M, DiGianni LS, Schneider KA, Chittenden A, Garber JE (2006) Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell. J Clin Oncol 24(4):700–706CrossRefPubMed
17.
Zurück zum Zitat Sermijn E, Goelen G, Teugels E, Kaufman L, Bonduelle M, Neyns B et al (2004) The impact of proband mediated information dissemination in families with a BRCA1/2 gene mutation. J Med Genet 41(3):e23CrossRefPubMed Sermijn E, Goelen G, Teugels E, Kaufman L, Bonduelle M, Neyns B et al (2004) The impact of proband mediated information dissemination in families with a BRCA1/2 gene mutation. J Med Genet 41(3):e23CrossRefPubMed
18.
Zurück zum Zitat Roshanai AH, Rosenquist R, Lampic C, Nordin K (2009) Does enhanced information at cancer genetic counseling improve counselees’ knowledge, risk perception, satisfaction and negotiation of information to at-risk relatives? A randomized study. Acta Oncol 27:1–11 Roshanai AH, Rosenquist R, Lampic C, Nordin K (2009) Does enhanced information at cancer genetic counseling improve counselees’ knowledge, risk perception, satisfaction and negotiation of information to at-risk relatives? A randomized study. Acta Oncol 27:1–11
19.
Zurück zum Zitat Buckman R (1992) How to break bad news: a guide for health care professionals. Johns Hopkins Universty Press, Baltimore Buckman R (1992) How to break bad news: a guide for health care professionals. Johns Hopkins Universty Press, Baltimore
20.
Zurück zum Zitat Peterson SK, Watts BG, Koehly LM, Vernon SW, Baile WF, Kohlmann WK et al (2003) How families communicate about HNPCC genetic testing: findings from a qualitative study. Am J Med Genet C Semin Med Genet 119C(1):78–86CrossRefPubMed Peterson SK, Watts BG, Koehly LM, Vernon SW, Baile WF, Kohlmann WK et al (2003) How families communicate about HNPCC genetic testing: findings from a qualitative study. Am J Med Genet C Semin Med Genet 119C(1):78–86CrossRefPubMed
21.
Zurück zum Zitat Bonadona V, Saltel P, Desseigne F, Mignotte H, Saurin JC, Wang Q et al (2002) Cancer patients who experienced diagnostic genetic testing for cancer susceptibility: reactions and behavior after the disclosure of a positive test result. Cancer Epidemiol Biomarkers Prev 11(1):97–104PubMed Bonadona V, Saltel P, Desseigne F, Mignotte H, Saurin JC, Wang Q et al (2002) Cancer patients who experienced diagnostic genetic testing for cancer susceptibility: reactions and behavior after the disclosure of a positive test result. Cancer Epidemiol Biomarkers Prev 11(1):97–104PubMed
22.
Zurück zum Zitat Weber R (1990) Basic content analysis. Sage publications, London Weber R (1990) Basic content analysis. Sage publications, London
23.
Zurück zum Zitat MacDonald DJ, Sarna L, van Servellen G, Bastani R, Giger JN, Weitzel JN (2007) Selection of family members for communication of cancer risk and barriers to this communication before and after genetic cancer risk assessment. Genet Med 9(5):275–282CrossRefPubMed MacDonald DJ, Sarna L, van Servellen G, Bastani R, Giger JN, Weitzel JN (2007) Selection of family members for communication of cancer risk and barriers to this communication before and after genetic cancer risk assessment. Genet Med 9(5):275–282CrossRefPubMed
24.
Zurück zum Zitat Bjorvatn C, Eide GE, Hanestad BR, Oyen N, Havik OE, Carlsson A et al (2007) Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer. J Genet Couns 16(2):211–222CrossRefPubMed Bjorvatn C, Eide GE, Hanestad BR, Oyen N, Havik OE, Carlsson A et al (2007) Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer. J Genet Couns 16(2):211–222CrossRefPubMed
Metadaten
Titel
Disclosing cancer genetic information within families: perspectives of counselees and their at-risk relatives
verfasst von
Afsaneh Hayat Roshanai
Claudia Lampic
Richard Rosenquist
Karin Nordin
Publikationsdatum
01.12.2010
Verlag
Springer Netherlands
Erschienen in
Familial Cancer / Ausgabe 4/2010
Print ISSN: 1389-9600
Elektronische ISSN: 1573-7292
DOI
https://doi.org/10.1007/s10689-010-9364-3

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