Family Impact From Counseling / Testing ~ Patient Education / Opinion / Preference
~ Genetics of Breast & Ovarian Cancer

Genetic Counseling Impact, transferred to family members not present at counseling/testing session

List was last updated on Dec 3, 2019 @ 7:38 pm.


    • Low rates of cascade genetic testing among families with hereditary gynecologic cancer: An opportunity to improve cancer prevention.
    • Griffin NE, Buchanan TR, Smith SH, Leon AA, Meyer MF, Liu J, Tabak RG, Fuh KC, Thaker PH, Powell MA, Mutch DG, Massad LS, Colditz GA, Hagemann AR.
    • Gynecol Oncol. 2019 Nov 25. pii: S0090-8258(19)31626-9. doi: 10.1016/j.ygyno.2019.11.005. [Epub ahead of print]
    • How to inform relatives at risk of hereditary diseases? A mixed-methods systematic review on patient attitudes.
    • van den Heuvel LM, Smets EMA, van Tintelen JP, Christiaans I.
    • J Genet Couns. 2019 Oct;28(5):1042-1058. doi: 10.1002/jgc4.1143. Epub 2019 Jun 19.
    • Review
    • Uptake of genetic counseling among adult children of BRCA1/2 mutation carriers in France.
    • Gauna Cristaldo FB, Touzani R, Apostolidis T, Mouret-Fourme E, Stoppa-Lyonnet D, Lasset C, Fricker JP, Berthet P, Julian-Reynier C, Mancini J, Noguès C, Bouhnik AD.
    • Psychooncology. 2019 Jul 5. doi: 10.1002/pon.5169. [Epub ahead of print]
    • Female family members lack understanding of indeterminate negative BRCA1/2 test results shared by probands.
    • Himes DO, Gibbons DK, Birmingham WC, Beckstrand RL, Gammon A, Kinney AY, Clayton MF.
    • J Genet Couns. 2019 Jun 14. doi: 10.1002/jgc4.1147. [Epub ahead of print]
    • Psychosocial and clinical factors of probands impacting intrafamilial disclosure and uptake of genetic testing among 103 French families with BRCA1/2 or MMR gene mutations.
    • Alegre N, Vande Perre P, Bignon YJ, Michel A, Galibert V, Mophawe O, Corsini C, Coupier I, Chiesa J, Robert L, Bernhard L, Picot MC, Bertet H, Macioce V, Bastide N, Solassol J, Rey JM, Thomas F, Carton S, Pujol P.
    • Psychooncology. 2019 Jun 1. doi: 10.1002/pon.5142. [Epub ahead of print]
    • Cancer genetic health communication in families tested for hereditary breast/ovarian cancer risk: a qualitative investigation of impact on children's genetic health literacy and psychosocial adjustment.
    • Tercyak KP, Bronheim SM, Kahn N, Robertson HA, Anthony BJ, Mays D, O'Neill SC, Peterson SK, Miesfeldt S, Peshkin BN, DeMarco TA.
    • Transl Behav Med. 2019 May 16;9(3):493-503. doi: 10.1093/tbm/ibz012.
    • Evaluation of the template letter regarding the disclosure of genetic information within the family in France.
    • Zordan C, Monteil L, Haquet E, Cordier C, Toussaint E, Roche P, Dorian V, Maillard A, Lhomme E, Richert L, Pasquier L, Akloul L, Taris N, Lacombe D.
    • J Community Genet. 2019 Mar 27. doi: 10.1007/s12687-019-00418-7. [Epub ahead of print]
    • Does family communication matter? Exploring knowledge of breast cancer genetics in cancer families.
    • Himes DO, Davis SH, Lassetter JH, Peterson NE, Clayton MF, Birmingham WC, Kinney AY.
    • J Community Genet. 2019 Mar 15. doi: 10.1007/s12687-019-00413-y. [Epub ahead of print]
    • Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.
    • Ersig AL, Werner-Lin A, Hoskins L, Young J, Loud JT, Peters J, Greene MH.
    • J Fam Nurs. 2019 Feb;25(1):28-53. doi: 10.1177/1074840718815844. Epub 2018 Dec 12.
    • The uptake of presymptomatic genetic testing in hereditary breast-ovarian cancer and Lynch syndrome: a systematic review of the literature and implications for clinical practice.
    • Menko FH, Ter Stege JA, van der Kolk LE, Jeanson KN, Schats W, Moha DA, Bleiker EMA.
    • Fam Cancer. 2019 Jan;18(1):127-135. doi: 10.1007/s10689-018-0089-z.
    • Review
    • Men's and Women's Approaches to Disclosure About BRCA-Related Cancer Risks and Family Planning Decision-Making.
    • Dean M, Rauscher EA.
    • Qual Health Res. 2018 Dec;28(14):2155-2168. doi: 10.1177/1049732318788377. Epub 2018 Jul 27.
    • Familial communication and cascade testing among relatives of BRCA population screening participants.
    • Lieberman S, Lahad A, Tomer A, Koka S, BenUziyahu M, Raz A, Levy-Lahad E.
    • Genet Med. 2018 Nov;20(11):1446-1454. doi: 10.1038/gim.2018.26. Epub 2018 Mar 29.
    • Cascade Genetic Testing of Relatives for Hereditary Cancer Risk: Results of an Online Initiative.
    • Caswell-Jin JL, Zimmer AD, Stedden W, Kingham KE, Zhou AY, Kurian AW.
    • J Natl Cancer Inst. 2018 Sep 18. doi: 10.1093/jnci/djy147. [Epub ahead of print]
    • How to support cancer genetics counselees in informing at-risk relatives? Lessons from a randomized controlled trial.
    • Eijzenga W, de Geus E, Aalfs CM, Menko FH, Sijmons RH, de Haes HCJM, Smets EMA.
    • Patient Educ Couns. 2018 Sep;101(9):1611-1619. doi: 10.1016/j.pec.2018.05.009. Epub 2018 May 8.
    • Inadequate Rates of BRCA Testing with its Negative Consequences for Women with Epithelial Ovarian Cancer and their Families: an Overview of the Literature.
    • Hoskins PJ.
    • Clin Oncol (R Coll Radiol). 2018 Aug;30(8):472-483. doi: 10.1016/j.clon.2018.04.004. Epub 2018 May 5.
    • Review
    • Germline mutations in BRCA1 and BRCA2 incidentally revealed in a biobank research study: experiences from re-contacting mutation carriers and relatives.
    • Nilsson MP, Emmertz M, Kristoffersson U, Borg Å, Larsson C, Rehn M, Winter C, Saal LH, Brandberg Y, Loman N.
    • J Community Genet. 2018 Jul;9(3):201-208. doi: 10.1007/s12687-017-0341-5. Epub 2017 Oct 30.
    • Maternal perceptions of BRCA genetic counseling communication processes about disclosing cancer risk information to children and adult relatives.
    • Hamilton JG, Peshkin BN, Mays D, DeMarco TA, Patenaude AF, Tercyak KP.
    • Psychooncology. 2018 Jul;27(7):1825-1832. doi: 10.1002/pon.4733. Epub 2018 May 22.
    • Talking with Children About Adult-Onset Hereditary Cancer Risk: A Developmental Approach for Parents.
    • Werner-Lin A, Merrill SL, Brandt AC.
    • J Genet Couns. 2018 Jun;27(3):533-548. doi: 10.1007/s10897-017-0191-7. Epub 2018 Jan 30.
    • Genetic Privacy, Disease Prevention, and the Principle of Rescue.
    • Kilbride MK.
    • Hastings Cent Rep. 2018 May;48(3):10-17. doi: 10.1002/hast.849.
    • Communicating with Daughters About Familial Risk of Breast Cancer: Individual, Family, and Provider Influences on Women's Knowledge of Cancer Risk.
    • Peipins LA, Rodriguez JL, Hawkins NA, Soman A, White MC, Hodgson ME, DeRoo LA, Sandler DP.
    • J Womens Health (Larchmt). 2018 May;27(5):630-639. doi: 10.1089/jwh.2017.6528. Epub 2018 Jan 29.
    • Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study.
    • Katapodi MC, Jung M, Schafenacker AM, Milliron KJ, Mendelsohn-Victor KE, Merajver SD, Northouse LL.
    • JMIR Cancer. 2018 Apr 13;4(1):e7. doi: 10.2196/cancer.9210.
    • A population-based analysis of germline BRCA1 and BRCA2 testing among ovarian cancer patients in an era of histotype-specific approaches to ovarian cancer prevention.
    • Hanley GE, McAlpine JN, Miller D, Huntsman D, Schrader KA, Blake Gilks C, Mitchell G.
    • BMC Cancer. 2018 Mar 5;18(1):254. doi: 10.1186/s12885-018-4153-8.
    • Family Communication, Risk Perception and Cancer Knowledge of Young Adults from BRCA1/2 Families: a Systematic Review.
    • Young AL, Butow PN, Vetsch J, Quinn VF, Patenaude AF, Tucker KM, Wakefield CE.
    • J Genet Couns. 2017 Dec;26(6):1179-1196. doi: 10.1007/s10897-017-0125-4. Epub 2017 Jun 30.
    • Review
    • Universal BRCA1/BRCA2 Testing for Ovarian Cancer Patients is Welcomed, but with Care: How Women and Staff Contextualize Experiences of Expanded Access.
    • Shipman H, Flynn S, MacDonald-Smith CF, Brenton J, Crawford R, Tischkowitz M; GTEOC Study Group, Hulbert-Williams NJ.
    • J Genet Couns. 2017 Dec;26(6):1280-1291. doi: 10.1007/s10897-017-0108-5. Epub 2017 May 24.
    • Cancer Predisposition Cascade Screening for Hereditary Breast/Ovarian Cancer and Lynch Syndromes in Switzerland: Study Protocol.
    • Katapodi MC, Viassolo V, Caiata-Zufferey M, Nikolaidis C, Bührer-Landolt R5, Buerki N, Graffeo R, Horváth HC, Kurzeder C, Rabaglio M, Scharfe M, Urech C, Erlanger TE, Probst-Hensch N, Heinimann K, Heinzelmann-Schwarz V, Pagani O, Chappuis PO.
    • JMIR Res Protoc. 2017 Sep 20;6(9):e184. doi: 10.2196/resprot.8138.
    • Recruiting families at risk for hereditary breast and ovarian cancer from a statewide cancer registry: a methodological study.
    • Katapodi MC, Duquette D, Yang JJ, Mendelsohn-Victor K, Anderson B, Nikolaidis C, Mancewicz E, Northouse LL, Duffy S, Ronis D, Milliron KJ, Probst-Herbst N, Merajver SD, Janz NK, Copeland G, Roberts S.
    • Cancer Causes Control. 2017 Mar;28(3):191-201. doi: 10.1007/s10552-017-0858-2. Epub 2017 Feb 14.
    • Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study.
    • Rowland E, Plumridge G, Considine AM, Metcalfe A.
    • Eur J Oncol Nurs. 2016 Dec;25:9-15. doi: 10.1016/j.ejon.2016.08.006. Epub 2016 Sep 20.
    • Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives.
    • de Geus E, Eijzenga W, Menko FH, Sijmons RH, de Haes HC, Aalfs CM, Smets EM.
    • J Genet Couns. 2016 Dec;25(6):1179-1187. Epub 2016 Apr 22.

    Webinar: June 2016 Webinar: Spreading the word: a review of two family communication intervention studies. (NSGC. Cancer SIG. Webinar Recordings. 2016 Jun 29.)

    • Communicating genetic test results within the family: Is it lost in translation? A survey of relatives in the randomized six-step study.
    • Daly MB, Montgomery S, Bingler R, Ruth K.
    • Fam Cancer. 2016 Oct;15(4):697-706. doi: 10.1007/s10689-016-9889-1.

    Comments on NSGC Discussion Forum Cancer SIG

    Subject: Register for June Journal Club; Reminder, webinar this Friday

    Webinar: June 2016 Webinar: Spreading the word: a review of two family communication intervention studies (NSGC Cancer SIG: Webinar Recordings)

    • June 2016 Webinar: Spreading the word: a review of two family communication intervention studies.
    • Ilana Solomon.
    • NSGC. Cancer SIG. Webinar Recordings. 2016 Jun 29.

    Communicating genetic test results within the family: Is it lost in translation? A survey of relatives in the randomized six-step study.

    Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives.

    • Breast Cancer Risk Perceptions among Relatives of Women with Uninformative Negative BRCA1/2 Test Results: The Moderating Effect of the Amount of Shared Information.
    • Himes DO, Clayton MF, Donaldson GW, Ellington L, Buys SS, Kinney AY.
    • J Genet Couns. 2016 Apr;25(2):258-69. doi: 10.1007/s10897-015-9866-0. Epub 2015 Aug 7.
    • The Double Helix: Applying an Ethic of Care to the Duty to Warn Genetic Relatives of Genetic Information.
    • Weaver M.
    • Bioethics. 2016 Mar;30(3):181-7. doi: 10.1111/bioe.12176. Epub 2015 Jul 21.
    • Familial risk for lifestyle-related chronic diseases: can family health history be used as a motivational tool to promote health behaviour in young adults?
    • Prichard I, Lee A, Hutchinson AD, Wilson C.
    • Health Promot J Austr. 2015 Aug;26(2):122-8.
    • Development of the Informing Relatives Inventory (IRI): Assessing Index Patients' Knowledge, Motivation and Self-Efficacy Regarding the Disclosure of Hereditary Cancer Risk Information to Relatives.
    • de Geus E, Aalfs CM, Menko FH, Sijmons RH, Verdam MG, de Haes HC, Smets EM.
    • Int J Behav Med. 2015 Aug;22(4):551-60. doi: 10.1007/s12529-014-9455-x.
    • Accuracy of recall of information about a cancer-predisposing BRCA1/2 gene mutation among patients and relatives.
    • Jacobs C, Dancyger C, Smith JA, Michie S.
    • Eur J Hum Genet. 2015 Feb;23(2):147-51. doi: 10.1038/ejhg.2014.84. Epub 2014 May 21.
    • Disclosure Pattern and Follow-Up After the Molecular Diagnosis of BRCA/CHEK2 Mutations.
    • Kegelaers D, Merckx W, Odeurs P, van den Ende J, Blaumeiser B.
    • J Genet Couns. 2014 Apr;23(2):254-61. doi: 10.1007/s10897-013-9656-5. Epub 2013 Oct 11.
    • Experience of BRCA1/2 mutation-negative young women from families with hereditary breast and ovarian cancer: a qualitative study.
    • Macrae L, de Souza AN, Loiselle CG, Wong N.
    • Hered Cancer Clin Pract. 2013 Oct 16;11(1):14. doi: 10.1186/1897-4287-11-14.
    • Young adult daughters of BRCA1/2 positive mothers: What do they know about hereditary cancer and how much do they worry?
    • Patenaude AF, Tung N, Ryan PD, Ellisen LW, Hewitt L, Schneider KA, Tercyak KP, Aldridge J, Garber JE.
    • Psychooncology. 2013 Sep;22(9):2024-31. doi: 10.1002/pon.3257. Epub 2013 Feb 18.
    • Lack of referral for genetic counseling and testing in BRCA1/2 and Lynch syndromes: a nationwide study based on 240,134 consultations and 134,652 genetic tests.
    • Pujol P, Lyonnet DS, Frebourg T, Blin J, Picot MC, Lasset C, Dugast C, Berthet P, de Paillerets BB, Sobol H, Grandjouan S, Soubrier F, Buecher B, Guimbaud R, Lidereau R, Jonveaux P, Houdayer C, Giraud S, Olschwang S, Nogue E, Galibert V, Bara C, Nowak F, Khayat D, Nogues C.
    • Breast Cancer Res Treat. 2013 Aug;141(1):135-44. doi: 10.1007/s10549-013-2669-9. Epub 2013 Aug 24.
    • Talking to children about maternal BRCA1/2 genetic test results: a qualitative study of parental perceptions and advice.
    • Farkas Patenaude A, DeMarco TA, Peshkin BN, Valdimarsdottir H, Garber JE, Schneider KA, Hewitt L, Hamilton J, Tercyak KP.
    • J Genet Couns. 2013 Jun;22(3):303-14. doi: 10.1007/s10897-012-9549-z. Epub 2012 Oct 24.
    • Family Communication Following BRCA1/2 Genetic Testing: A Close Look at the Process.
    • Lafrenière D, Bouchard K, Godard B, Simard J, Dorval M.
    • J Genet Couns. 2013 Jun;22(3):323-35. doi: 10.1007/s10897-012-9559-x. Epub 2012 Dec 16.
    • Life Events may Contribute to Family Communication About Cancer Risk Following BRCA1/2 Testing.
    • Lapointe J, Côté C, Bouchard K, Godard B, Simard J, Dorval M.
    • J Genet Couns. 2013 Apr;22(2):249-257. Epub 2012 Aug 15.
    • Dealing with the unexpected: consumer responses to direct-access BRCA mutation testing.
    • Francke U, Dijamco C, Kiefer AK, Eriksson N, Moiseff B, Tung JY, Mountain JL.
    • PeerJ. 2013 Feb 12;1:e8. doi: 10.7717/peerj.8. Print 2013.

    Comments on NSGC Discussion Forum

    Subject: Current thoughts on 23andme?

    Press: Consumers have few negative reactions to the results of genetic testing for cancer mutations. (EurekAlert!)

    Press: Get ready for the risks of genetic testing. (CNN)