Family Sharing ~ Genetic Counseling
~ Genetics of Breast & Ovarian Cancer

Approaches specifically used to facilitate sharing of genetic counseling/testing results with appropriate family members

List was last updated on Oct 20, 2019 @ 1:47 pm.


    • "How do we rally around the one who was positive?" Familial uncertainty management in the context of men managing BRCA-related cancer risks.
    • Rauscher EA, Dean M, Campbell-Salome G, Barbour JB.
    • Soc Sci Med. 2019 Oct 11;242:112592. doi: 10.1016/j.socscimed.2019.112592. [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
    • Familial disclosure by genetic healthcare professionals: a useful but sparingly used legal provision in France.
    • Derbez B, de Pauw A, Stoppa-Lyonnet D, Galactéros F, de Montgolfier S.
    • J Med Ethics. 2019 Aug 28. pii: medethics-2018-105212. doi: 10.1136/medethics-2018-105212. [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]
    • Talking across generations: Family communication about BRCA1 and BRCA2 genetic cancer risk.
    • Young AL, Butow PN, Rhodes P, Tucker KM, Williams R, Healey E, Wakefield CE.
    • J Genet Couns. 2019 Jun;28(3):516-532. doi: 10.1002/jgc4.1055. Epub 2019 Jan 29.
    • 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.
    • Factors Influencing Not Perceiving Family Health History Assessments as Important: Opportunities to Improve Dissemination of Evidence-Based Population Screening for Cancer.
    • Allen CG, Escoffery C, Haardörfer R, McBride CM.
    • Public Health Genomics. 2019 Apr 9:1-10. doi: 10.1159/000499125. [Epub ahead of print]
    • Racial/Ethnic Disparities in BRCA Counseling and Testing: a Narrative Review.
    • Williams CD, Bullard AJ, O'Leary M, Thomas R, Redding TS 4th, Goldstein K.
    • J Racial Ethn Health Disparities. 2019 Apr 8. doi: 10.1007/s40615-018-00556-7. [Epub ahead of print]
    • Review
    • Expectations versus reality: The impact of men's expectancy violations in conversations with healthcare providers about BRCA-related cancer risks.
    • Dean M, Rauscher E, Gomez E, Fischer C.
    • Patient Educ Couns. 2019 Apr 6. pii: S0738-3991(19)30135-1. doi: 10.1016/j.pec.2019.04.010. [Epub ahead of print]
    • A clinically structured and partnered approach to genetic testing in Trinidadian women with breast cancer and their families.
    • Donenberg T, George S, Ali J, Bravo G, Hernandez K, Sookar N, Ashing KT, Narod SA, Akbari MR, Hurley J.
    • Breast Cancer Res Treat. 2019 Apr;174(2):469-477. doi: 10.1007/s10549-018-5045-y. Epub 2018 Dec 4.
    • A patient-centered mobile health application to motivate use of genetic counseling among women with ovarian cancer: A pilot randomized controlled trial.
    • Vogel RI, Niendorf K, Petzel S, Lee H, Teoh D, Blaes AH, Argenta P, Rivard C, Winterhoff B, Lee HY, Geller MA.
    • Gynecol Oncol. 2019 Apr;153(1):100-107. doi: 10.1016/j.ygyno.2019.01.019. Epub 2019 Feb 1.
    • 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]
    • "It would be so much easier": health system-led genetic risk notification-feasibility and acceptability of cascade screening in an integrated system.
    • Henrikson NB, Blasi PR, Fullerton SM, Grafton J, Leppig KA, Jarvik GP, Larson EB.
    • J Community Genet. 2019 Mar 6. doi: 10.1007/s12687-019-00412-z. [Epub ahead of print]
    • RE: Cascade Genetic Testing of Relatives for Hereditary Cancer Risk: Results of an Online Initiative.
    • Peshkin BN, Isaacs C, Schwartz MD.
    • J Natl Cancer Inst. 2019 Mar 5. pii: djz028. doi: 10.1093/jnci/djz028. [Epub ahead of print]

    Letter, reply:

    Response to Peshkin, Isaacs, and Schwartz.

    Original research:

    Cascade Genetic Testing of Relatives for Hereditary Cancer Risk: Results of an Online Initiative.

    • 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. 2019 Jan 1;111(1):95-98. doi: 10.1093/jnci/djy147.

    Letter, comment:

    RE: Cascade Genetic Testing of Relatives for Hereditary Cancer Risk: Results of an Online Initiative.

    Letter, reply:

    Response to Peshkin, Isaacs, and Schwartz.

    • 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
    • "I Am Uncertain About What My Uncertainty Even Is": Men's Uncertainty and Information Management of Their BRCA-Related Cancer Risks.
    • Rauscher EA, Dean M, Campbell-Salome GM.
    • J Genet Couns. 2018 Dec;27(6):1417-1427. doi: 10.1007/s10897-018-0276-y. Epub 2018 Jul 3.
    • 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.
    • 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.
    • 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.
    • Development of a Tool to Guide Parents Carrying a BRCA1/2 Mutation Share Genetic Results with Underage Children.
    • Santerre-Theil A, Bouchard K, St-Pierre D, Drolet AM, Chiquette J, Dorval M; Centre ROSE.
    • J Cancer Educ. 2018 Jun;33(3):569-575. doi: 10.1007/s13187-016-1127-x.
    • 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.
    • Limitations and Pitfalls of Using Family Letters to Communicate Genetic Risk: a Qualitative Study with Patients and Healthcare Professionals.
    • Dheensa S, Lucassen A, Fenwick A.
    • J Genet Couns. 2018 Jun;27(3):689-701. doi: 10.1007/s10897-017-0164-x. Epub 2017 Nov 1.
    • 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.
    • Is there a "right time" for bad news? Kairos in familial communication on hereditary breast and ovarian cancer risk.
    • Derbez B.
    • Soc Sci Med. 2018 Apr;202:13-19. doi: 10.1016/j.socscimed.2018.02.022. Epub 2018 Feb 23.
    • 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
    • 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.
    • Identification of BRCA1 and BRCA2 Mutation Carriers Through a Traceback Framework: Consent, Privacy, and Autonomy.
    • Schwartz MD.
    • J Clin Oncol. 2017 Jul 10;35(20):2226-2228. doi: 10.1200/JCO.2017.72.8774. Epub 2017 May 2.

    Traceback: A Proposed Framework to Increase Identification and Genetic Counseling of BRCA1 and BRCA2 Mutation Carriers Through Family-Based Outreach.

    • Traceback: A Proposed Framework to Increase Identification and Genetic Counseling of BRCA1 and BRCA2 Mutation Carriers Through Family-Based Outreach.
    • Samimi G, Bernardini MQ, Brody LC, Caga-Anan CF, Campbell IG, Chenevix-Trench G, Couch FJ, Dean M, de Hullu JA, Domchek SM, Drapkin R, Spencer Feigelson H, Friedlander M, Gaudet MM, Harmsen MG, Hurley K, James PA, Kwon JS, Lacbawan F, Lheureux S, Mai PL, Mechanic LE, Minasian LM, Myers ER, Robson ME, Ramus SJ, Rezende LF, Shaw PA, Slavin TP, Swisher EM, Takenaka M, Bowtell DD, Sherman ME.
    • J Clin Oncol. 2017 Jul 10;35(20):2329-2337. doi: 10.1200/JCO.2016.70.3439. Epub 2017 Apr 11.

    Editorial:

    Identification of BRCA1 and BRCA2 Mutation Carriers Through a Traceback Framework: Consent, Privacy, and Autonomy.

    • Issues Arising in Psychological Consultations to Help Parents Talk to Minor and Young Adult Children about their Cancer Genetic Test Result: a Guide to Providers.
    • Patenaude AF, Schneider KA.
    • J Genet Couns. 2017 Apr;26(2):251-260. doi: 10.1007/s10897-016-0010-6. Epub 2016 Oct 3.
    • A Relational Approach to Genetic Counseling for Hereditary Breast and Ovarian Cancer.
    • Forbes Shepherd R, Browne TK, Warwick L.
    • J Genet Couns. 2017 Apr;26(2):283-299. doi: 10.1007/s10897-016-0022-2. Epub 2016 Oct 19.
    • 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.
    • [Genetic Counseling of HBOC and Japanese Organization of HBOC].
    • Fukushima Y.
    • Gan To Kagaku Ryoho. 2017 Feb;44(2):107-110.
    • Review, [Article in Japanese]
    • Psychosocial and Clinical Factors Associated with Family Communication of Cancer Genetic Test Results among Women Diagnosed with Breast Cancer at a Young Age.
    • Elrick A, Ashida S, Ivanovich J, Lyons S, Biesecker BB, Goodman MS, Kaphingst KA.
    • J Genet Couns. 2017 Feb;26(1):173-181. doi: 10.1007/s10897-016-9995-0. Epub 2016 Jul 16.
    • Cancer Risk Information Sharing: The Experience of Individuals Receiving Genetic Counseling for BRCA1/2 Mutations.
    • Chopra I, Kelly KM.
    • J Health Commun. 2017 Feb;22(2):143-152. doi: 10.1080/10810730.2016.1258743. Epub 2017 Jan 23.
    • 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)

    • The impact of an interventional counselling procedure in families with a BRCA1/2 gene mutation: efficacy and safety.
    • Sermijn E, Delesie L, Deschepper E, Pauwels I, Bonduelle M, Teugels E, De Grève J.
    • Fam Cancer. 2016 Apr;15(2):155-62. doi: 10.1007/s10689-015-9854-4.
    • 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.
    • Strategies for recruitment of relatives of BRCA mutation carriers to a genetic testing program in the Bahamas.
    • Trottier M, Lunn J, Butler R, Curling D, Turnquest T, Royer R, Akbari MR, Donenberg T, Hurley J, Narod SA.
    • Clin Genet. 2015 Aug;88(2):182-6. doi: 10.1111/cge.12468. Epub 2014 Sep 6.
    • 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.

    • Aligning policy to promote cascade genetic screening for prevention and early diagnosis of heritable diseases.
    • George R, Kovak K, Cox SL.
    • J Genet Couns. 2015 Jun;24(3):388-99. doi: 10.1007/s10897-014-9805-5. Epub 2015 Jan 11.
    • 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.
    • Linking distant relatives with BRCA gene mutations: potential for cost savings.
    • Senter L, O'Connor M, Oriyo F, Sweet K, Toland A.
    • Clin Genet. 2014 Jan;85(1):54-8. doi: 10.1111/cge.12211. Epub 2013 Jun 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.
    • The genomic medicine model: an integrated approach to implementation of family health history in primary care.
    • Orlando LA, Henrich VC, Hauser ER, Wilson C, Ginsburg GS; Genomedical Connection.
    • Per Med. 2013 May;10(3):295-306. doi: 10.2217/pme.13.20.
    • Intrafamilial disclosure of risk for hereditary breast and ovarian cancer: points to consider.
    • Black L, McClellan KA, Avard D, Knoppers BM.
    • J Community Genet. 2013 Apr;4(2):203-14. doi: 10.1007/s12687-012-0132-y. Epub 2012 Dec 29.
    • 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.
    • A multidisciplinary clinic for individualizing management of patients at increased risk for breast and gynecologic cancer.
    • Engel NJ, Gordon P, Thull DL, Dudley B, Herstine J, Jankowitz RC, Zorn KK.
    • Fam Cancer. 2012 Sep;11(3):419-27. doi: 10.1007/s10689-012-9530-x.
    • Parenting through genetic uncertainty: themes in the disclosure of breast cancer risk information to children.
    • Sharff ME, DeMarco TA, Mays D, Peshkin BN, Valdimarsdottir HB, Garber JE, Schneider KA, Patenaude AF, Tercyak KP.
    • Genet Test Mol Biomarkers. 2012 May;16(5):376-82. doi: 10.1089/gtmb.2011.0154. Epub 2011 Nov 15.
    • A Pilot study of the Sharing Risk Information Tool (ShaRIT) for Families with Hereditary Breast and Ovarian Cancer Syndrome.
    • Kardashian A, Fehniger J, Creasman J, Cheung E, Beattie MS.
    • Hered Cancer Clin Pract. 2012 Apr 12;10(1):4. doi: 10.1186/1897-4287-10-4.
    • Do Breast Cancer Patients Tested in the Oncology Care Setting Share BRCA Mutation Results with Family Members and Health Care Providers?
    • Vadaparampil ST, Malo T, de la Cruz C, Christie J.
    • J Cancer Epidemiol. 2012;2012:498062. Epub 2012 Jul 15.
    • What women with breast cancer discuss with clinicians about risk for their adolescent daughters.
    • Maloney E, Edgerson S, Robson M, Offit K, Brown R, Bylund C, Kissane DW.
    • J Psychosoc Oncol. 2012;30(4):484-502. doi: 10.1080/07347332.2012.684855.