Literature DB >> 17106632

Ethical issues in cancer genetics: I 1) whose information is it?

Katherine A Schneider1, Anu B Chittenden, Kelly J Branda, Meredith A Keenan, Steven Joffe, Andrea Farkas Patenaude, Hazel Reynolds, Karin Dent, Sonja Eubanks, Jill Goldman, Bonnie Leroy, Nancy Steinberg Warren, Kelly Taylor, Cate Walsh Vockley, Judy E Garber.   

Abstract

This article presents and discusses four clinical cases that exemplify the complexity of ethical dilemmas concerning the provider's obligation to disclose or withhold genetic information from patients. Case 1: What is the responsibility of the cancer genetics provider to ensure that a positive test results is shared with distant relatives? Case 2: To ensure that results go to at-risk relatives, do we have the right to ignore the wishes of the designated next-of-kin? Case 3: Do we have the right to reveal a familial BRCA1 mutation to a patient's relative, who is at 50% risk? Case 4: Do we have an obligation to reveal that a patient is not a blood relative and therefore, not at risk to have inherited a familial mutation? These cases form the basis for discussing the provider's dual obligations to keeping patient confidentiality and informing patients and families about risk (i.e. duty to warn). We also provide a summary of consensus points and additional discussion questions for each case.

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Year:  2006        PMID: 17106632     DOI: 10.1007/s10897-006-9053-4

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  19 in total

1.  Ethical implications of predictive DNA testing for hereditary breast cancer.

Authors:  M L Di Pietro; A Giuli; A G Spagnolo
Journal:  Ann Oncol       Date:  2004       Impact factor: 32.976

2.  Family communication about positive BRCA1 and BRCA2 genetic test results.

Authors:  Bobbi McGivern; Jessica Everett; Geoffrey G Yager; Robert C Baumiller; Amanda Hafertepen; Howard M Saal
Journal:  Genet Med       Date:  2004 Nov-Dec       Impact factor: 8.822

3.  Facilitating family communication about predictive genetic testing: probands' perceptions.

Authors:  Clara L Gaff; Veronica Collins; Tiffany Symes; Jane Halliday
Journal:  J Genet Couns       Date:  2005-04       Impact factor: 2.537

4.  ASHG statement. Professional disclosure of familial genetic information. The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure.

Authors: 
Journal:  Am J Hum Genet       Date:  1998-02       Impact factor: 11.025

Review 5.  Genetic cancer risk assessment and counseling: recommendations of the national society of genetic counselors.

Authors:  Angela Trepanier; Mary Ahrens; Wendy McKinnon; June Peters; Jill Stopfer; Sherry Campbell Grumet; Susan Manley; Julie O Culver; Ronald Acton; Joy Larsen-Haidle; Lori Ann Correia; Robin Bennett; Barbara Pettersen; Terri Diamond Ferlita; Josephine Wagner Costalas; Katherine Hunt; Susan Donlon; Cecile Skrzynia; Carolyn Farrell; Faith Callif-Daley; Catherine Walsh Vockley
Journal:  J Genet Couns       Date:  2004-04       Impact factor: 2.537

6.  Hereditary nonpolyposis colorectal cancer family members' perceptions about the duty to inform and health professionals' role in disseminating genetic information.

Authors:  Rebecca D Pentz; Susan K Peterson; Beatty Watts; Sally W Vernon; Patrick M Lynch; Laura M Koehly; Ellen R Gritz
Journal:  Genet Test       Date:  2005

7.  Risk-reducing salpingo-oophorectomy in women with a BRCA1 or BRCA2 mutation.

Authors:  Noah D Kauff; Jaya M Satagopan; Mark E Robson; Lauren Scheuer; Martee Hensley; Clifford A Hudis; Nathan A Ellis; Jeff Boyd; Patrick I Borgen; Richard R Barakat; Larry Norton; Mercedes Castiel; Khedoudja Nafa; Kenneth Offit
Journal:  N Engl J Med       Date:  2002-05-20       Impact factor: 91.245

8.  Follow-up study of twenty-four families with Li-Fraumeni syndrome.

Authors:  J E Garber; A M Goldstein; A F Kantor; M G Dreyfus; J F Fraumeni; F P Li
Journal:  Cancer Res       Date:  1991-11-15       Impact factor: 12.701

9.  American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility.

Authors: 
Journal:  J Clin Oncol       Date:  2003-04-11       Impact factor: 44.544

10.  Cancer risk in families with hereditary nonpolyposis colorectal cancer diagnosed by mutation analysis.

Authors:  H F Vasen; J T Wijnen; F H Menko; J H Kleibeuker; B G Taal; G Griffioen; F M Nagengast; E H Meijers-Heijboer; L Bertario; L Varesco; M L Bisgaard; J Mohr; R Fodde; P M Khan
Journal:  Gastroenterology       Date:  1996-04       Impact factor: 22.682

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  5 in total

Review 1.  Communicating genetic risk information within families: a review.

Authors:  Mel Wiseman; Caroline Dancyger; Susan Michie
Journal:  Fam Cancer       Date:  2010-12       Impact factor: 2.375

2.  Decision-making about inherited cancer risk: exploring dimensions of genetic responsibility.

Authors:  Holly Etchegary; Fiona Miller; Sonya deLaat; Brenda Wilson; June Carroll; Mario Cappelli
Journal:  J Genet Couns       Date:  2009-03-18       Impact factor: 2.537

3.  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.

Authors:  Fred H Menko; Jacqueline A Ter Stege; Lizet E van der Kolk; Kiki N Jeanson; Winnie Schats; Daoud Ait Moha; Eveline M A Bleiker
Journal:  Fam Cancer       Date:  2019-01       Impact factor: 2.375

4.  Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors.

Authors:  Bronson D Riley; Julie O Culver; Cécile Skrzynia; Leigha A Senter; June A Peters; Josephine W Costalas; Faith Callif-Daley; Sherry C Grumet; Katherine S Hunt; Rebecca S Nagy; Wendy C McKinnon; Nancie M Petrucelli; Robin L Bennett; Angela M Trepanier
Journal:  J Genet Couns       Date:  2011-12-02       Impact factor: 2.537

5.  Role of parenting relationship quality in communicating about maternal BRCA1/2 genetic test results with children.

Authors:  Tiffani A DeMarco; Beth N Peshkin; Heiddis B Valdimarsdottir; Andrea F Patenaude; Katherine A Schneider; Kenneth P Tercyak
Journal:  J Genet Couns       Date:  2008-02-21       Impact factor: 2.537

  5 in total

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