Literature DB >> 24804937

"Would you test your children without their consent?" and other sticky dilemmas in the field of cancer genetic testing.

Karina L Brierley1, Danielle C Bonadies, Anne Moyer, Ellen T Matloff.   

Abstract

Cancer genetic testing is surrounded by myriad ethical, legal, and psychosocial implications which are being revisited as testing expands into an everyday practice and into more complicated areas like whole exome and direct-to-consumer testing. We chose to survey cancer genetic counselors and physicians from a wide range of non-genetics specialties to determine what they would do if faced with the complex decisions associated with cancer genetic testing, how their views compare, and how they align with current guidelines and data. Genetic counselors were significantly more likely than non-genetics physicians to bill their insurance for testing (94.9 vs. 86.8 %; p = 0.001) and purchase life insurance before testing (86.6 vs. 68.6 %; p = 0.000) and were less likely to use an alias (3.2 vs. 13.2 %; p = 0.000) or order testing on their own DNA (15.3 vs. 24.2 %; p = 0.004). They were also less likely to test their minor children (0.9 vs. 33.1 %; p = 0.000) or test their children without their knowledge and consent/assent (1.4 vs.11.5 %; p = 0.000). The results of our study indicate that there is wide variation regarding what clinicians predict they would do in the areas of ethical, legal and psychosocial issues in cancer genetic testing. Cancer genetic counselors' choices are more aligned with professional guidelines, likely due to their experience in the field and awareness of current guidelines. These data are a starting point for a broader discussion of who should offer cancer genetic counseling and testing to patients, particularly as the complexity of the available testing options and associated issues increase with whole exome sequencing.

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Year:  2014        PMID: 24804937     DOI: 10.1007/s10689-014-9723-6

Source DB:  PubMed          Journal:  Fam Cancer        ISSN: 1389-9600            Impact factor:   2.375


  23 in total

1.  Attitudes to reproductive genetic testing in women who had a positive BRCA test before having children: a qualitative analysis.

Authors:  Elizabeth Ormondroyd; Louise Donnelly; Clare Moynihan; Cornelie Savona; Elizabeth Bancroft; D Gareth Evans; Rosalind Eeles; Stuart Lavery; Maggie Watson
Journal:  Eur J Hum Genet       Date:  2011-08-03       Impact factor: 4.246

2.  Changes in specialists' perspectives on cancer genetic testing, prophylactic surgery and insurance discrimination: then and now.

Authors:  Ellen T Matloff; Danielle C Bonadies; Anne Moyer; Karina L Brierley
Journal:  J Genet Couns       Date:  2013-07-13       Impact factor: 2.537

3.  Cancer risk assessment: examining the family physician's role.

Authors:  Carl V Tyler; Clint W Snyder
Journal:  J Am Board Fam Med       Date:  2006 Sep-Oct       Impact factor: 2.657

4.  Empowering primary care health professionals in medical genetics: how soon? How fast? How far?

Authors:  K Greendale; R E Pyeritz
Journal:  Am J Med Genet       Date:  2001

5.  Evolving perspectives on genetic discrimination in health insurance among health care providers.

Authors:  Carin R Huizenga; Katrina Lowstuter; Kimberly C Banks; Veronica I Lagos; Virginia O Vandergon; Jeffrey N Weitzel
Journal:  Fam Cancer       Date:  2010-06       Impact factor: 2.375

6.  Cancer risk communication, predictive testing and management in France, Germany, the Netherlands and the UK: general practitioners' and breast surgeons' current practice and preferred practice responsibilities.

Authors:  Irmgard Nippert; Claire Julian-Reynier; Hilary Harris; Gareth Evans; Christi J van Asperen; Aad Tibben; Jörg Schmidtke
Journal:  J Community Genet       Date:  2013-12-03

7.  Primary care providers' willingness to recommend BRCA1/2 testing to adolescents.

Authors:  Suzanne C O'Neill; Beth N Peshkin; George Luta; Anisha Abraham; Leslie R Walker; Kenneth P Tercyak
Journal:  Fam Cancer       Date:  2009-04-24       Impact factor: 2.375

8.  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

9.  Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: a global problem.

Authors:  Marieke J H Baars; Lidewij Henneman; Leo P Ten Kate
Journal:  Genet Med       Date:  2005 Nov-Dec       Impact factor: 8.822

10.  Technical report: Ethical and policy issues in genetic testing and screening of children.

Authors:  Lainie Friedman Ross; Laine Friedman Ross; Howard M Saal; Karen L David; Rebecca R Anderson
Journal:  Genet Med       Date:  2013-02-21       Impact factor: 8.822

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  1 in total

Review 1.  Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review.

Authors:  Loredana Covolo; Sara Rubinelli; Elisabetta Ceretti; Umberto Gelatti
Journal:  J Med Internet Res       Date:  2015-12-14       Impact factor: 5.428

  1 in total

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