A Clinical Perspective on Ethical Issues in Genetic Testing

REFERENCES

• Andorno , R. 2004 . The right not to know: an autonomy based approach . J. Med. Ethics , 30 : 435 – 439 .
   PubMed Web of Science ®Google Scholar
• Ashley , E. A. , Butte , A. J. , Wheeler , M. T. , Chen , R. , Klein , T. T. , Dewey , F. E. Dudley , J. T. 2010 . Clinical assessment incorporating a personal genome . Lancet , 375 : 1525 – 1535 .
   PubMed Web of Science ®Google Scholar
• Basille , C. , Frydman , R. , El Aly , A. , Hesters , L. , Fanchin , R. , Tachdjian , G. , Steffann , J. , LeLorc'h , M. and Achour-Frydman , N. 2009 . Preimplantation genetic diagnosis: State of the art . Eur. J. Obstet. Gynecol. Reprod. Biol , 145 : 9 – 13 .
   PubMed Web of Science ®Google Scholar
• Brower , V. 2004 . Genomics and health care. How genomics medicine is translated into better health care largely depends on how physicians handle this information . EMBO Rep , 5 : 131 – 133 .
   PubMed Web of Science ®Google Scholar
• Burke , W. 2004 . Genetic testing in primary care . Annu. Rev. Genomics Hum. Genet , 5 : 1 – 14 .
   Google Scholar
• Council of Europe . 1992 . Recommendation No. R(92)3 of the Committee of Ministers to member states on genetic testing and screening for health care purposes , Brussels : Council of Europe .
   Google Scholar
• Council of Europe . 1994 . Recommendation No. R(94)11 of the Committee of Ministers to member states on screening as a tool of preventive medicine , Brussels : Council of Europe .
   Google Scholar
• Council of Europe . 1997 . Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine , Brussels : Council of Europe .
   Google Scholar
• Daly , A. K. 2010 . Pharmacogenetics and human genetic polymorphisms . Biochem. J , 429 : 435 – 349 .
   PubMed Web of Science ®Google Scholar
• Dute , J. 2005 . “ The leading principles of the Convention in Human Rights and Biomedicine ” . In Health Law, Human Rights and the Biomedicine Convention. Essays in Honour of Henriette Roscam Abbing , Edited by: Gevers , J. K. M. , Hondius , E. H. and Hubben , J. H. 3 – 12 . Leiden : International Studies in Human Rights No. 85 . Koninklijke Brill N.V.
   Google Scholar
• Feero , W. G. , Guttmacher , A. D. and Collins , F. S. 2010 . Genomic medicine—An updated primer . N. Engl. J. Med , 362 : 2010 – 2011 .
   Google Scholar
• Forrest , L. E. , Delatycki , M. B. , Skene , L. and Aitken , M. 2007 . Communicating genetic information in families—A review of guidelines and position papers . Eur. J. Hum. Genetics , 15 : 612 – 618 .
   PubMed Web of Science ®Google Scholar
• Gilbar , R. 2007 . Patient autonomy and relatives' right to know genetic information . Med. Law , 26 : 677 – 697 .
   PubMedGoogle Scholar
• Ginsburg , G. S. and Willard , H. F. 2009 . Genomic and personalized medicine: Foundations and applications . Transl. Res , 154 : 277 – 287 .
   PubMed Web of Science ®Google Scholar
• Guttmacher , A. E. , McGuire , A. L. , Ponder , B. and Stefánsson , K. 2010 . Personalized genomic information: Preparing for the future of genetic medicine . Nat. Rev. Genet , 11 : 161 – 165 .
   PubMed Web of Science ®Google Scholar
• Hamburg , M. A. and Collins , F. S. 2010 . The path to personalized medicine . N. Engl. J. Med , 363 : 301 – 304 .
   PubMed Web of Science ®Google Scholar
• Handyside , A. 2010 . Let parents decide . Nature , 7298 : 978 – 979 .
   Google Scholar
• Hayeems , R. Z. , Bytautas , J. P. and Miller , F. A. 2008 . A systematic review of the effects of disclosing carrier results generated through newborn screening . J. Genet. Couns , 17 : 538 – 549 .
   Google Scholar
• Hendriks , A. 2005 . “ Protection against genetic discrimination and the Biomedicine Convention ” . In Health Law, Human Rights and the Biomedicine Convention. Essays in Honour of Henriette Roscam Abbing , Edited by: Gevers , J. K. M. , Hondius , E. H. and Hubben , J. H. 207 – 218 . Leiden : Koninklijke Brill N.V. . International Studies in Human Rights No. 85
   Google Scholar
• Hondius , E. 2005 . “ The Kelly Case—Compensation for undue damage for wrongful treatment ” . In Health Law, Human Rights and the Biomedicine Convention. Essays in Honour of Henriette Roscam Abbing , Edited by: Gevers , J. K. M. , Hondius , E. H. and Hubben , J. H. 105 – 116 . Leiden : Koninklijke Brill N.V. . International Studies in Human Rights No. 85
   Google Scholar
• Hunter , A. G. W. , Sharpe , N , Mullen , M. and Meschino , W. S. 2001 . Ethical, legal, and practical concerns about recontacting patients to inform them of new information: The case in medical genetics . Am. J. Med. Genet , 103 : 265 – 276 .
   PubMed Web of Science ®Google Scholar
• Hunter , D. J. , Khoury , M. J. and Drazen , J. M. 2008 . Letting the genome out of the bottle—Will we get our wish? . N. Engl. J. Med , 358 : 105 – 107 .
   PubMed Web of Science ®Google Scholar
• Janssens , A. C. , Gwinn , M. , Bradley , L. A. , Oostra , B. A. , van Duijn , C. M. and Khoury , M. J. 2008 . A critical appraisal of the scientific basis of commercial genomic profiles used to assess health risks and personalize health interventions . Am. J. Hum. Genet , 82 : 593 – 599 .
   PubMed Web of Science ®Google Scholar
• Klitzman , R. , Appelbaum , P. S. , Chung , W. and Sauer , M. 2008 . Anticipating issues related to increasing preimplantation genetic diagnosis use: a research agenda . Reprod. Biomed. Online , 17 : 33 – 42 .
   Google Scholar
• Landeweerd , L. 2009 . Prenatal diagnosis and the trouble with eugenics . Law Hum. Genome Rev , 30 : 35 – 61 .
   Google Scholar
• Lucassen , A. and Parker , M. 2010 . Confidentiality and sharing genetic information with relatives . Lancet , 375 : 1507 – 1509 .
   PubMed Web of Science ®Google Scholar
• McGuire , A. L. and Lupski , J. R. 2010 . Personal genome research: What should the participant be told? . Trends Genet , 26 : 199 – 201 .
   PubMed Web of Science ®Google Scholar
• Miller , F. A. , Hayeems , R. Z. , Bombard , Y. , Little , J. , Carroll , J. C. , Wilson , B. , Allanson , J. , Paynter , M. , Bytautas , J. P. , Christensen , R. and Chakraborty , P. 2009 . Clinical obligations and public health programmes: Healthcare provider reasoning about managing the incidental results of newborn screening . J. Med. Ethics , 35 : 626 – 634 .
   PubMed Web of Science ®Google Scholar
• Offit , K. , Kohut , K. , Clagett , B. , Wadsworth , E. A. , Lafaro , K. J. , Cummings , S. , White , M. , Sagi , M. , Bernstein , D. and Davis , J. G. 2006 . Cancer genetic testing and assisted reproduction . J. Clin. Oncol , 24 : 4775 – 4782 .
   PubMedGoogle Scholar
• Ormond , K. E. , Wheeler , M. T. , Hudgins , L. , Klein , T. E. , Butte , A. J. , Altman , R. B. , Ashley , E. A. and Greely , H. T. 2010 . Challenges in the clinical application of whole-genome . Lancet , 375 : 1749 – 1751 .
   PubMed Web of Science ®Google Scholar
• Povey , S. , Al Aqeel , A. I. , Cambon-Thomsen , A. , Dalgleish , R. , den Dunnen , J. T. , Firth , H. V. Greenblatt , M. S. 2010 . Practical guidelines addressing ethical issues pertaining to the curation of human locus-specific variation databases (LSDBs) . Hum. Mutat , 31 : 1179 – 1184 .
   Google Scholar
• Relling , M. V. , Altman , R. B. , Goetz , M. P. and Evans , W. E. 2010 . Clinical implementation of pharmacogenomics: overcoming genetic exceptionalism . Lancet Oncology , 11 : 507 – 509 .
   PubMed Web of Science ®Google Scholar
• Robertson , J. A. 2003 . Extending preimplantation genetic diagnosis: The ethical debate. Ethical issues in new uses of preimplantation genetic diagnosis . Human Reprod , 18 : 465 – 471 .
   PubMed Web of Science ®Google Scholar
• Samuel , G. N. , Jordens , C. F. and Kerridge , I. 2010 . Direct-to-consumer personal genome testing: Ethical and regulatory issues that arise from wanting to ‘know’ your DNA . Intern. Med. J , 40 : 220 – 224 .
   PubMed Web of Science ®Google Scholar
• Schmitz , D. 2010 . Exceptional know how? Possible pitfalls of routinising genetic services . J. Med. Ethics , 36 : 529 – 533 .
   Google Scholar
• Soini , S. 2007 . Preimplantation genetic diagnosis (PGD) in Europe: diversity of legislation a challenge to the community and its citizens . Med. Law , 26 : 309 – 323 .
   PubMedGoogle Scholar
• Tabor , H. K. and Cho , M. K. 2007 . Ethical implications of array comparative genomic hybridization incomplex phenotypes: Points to consider in research . Genet. Med , 9 : 626 – 631 .
   PubMed Web of Science ®Google Scholar
• Tomasini , F. 2007 . Imagining human enhancement: whose future, which rationality? . Theor. Med. Bioeth , 28 : 497 – 507 .
   Google Scholar
• Uhlmann , W. , Schuette , J. L. and Yashar , B. , eds. 2009 . A Guide to Genetic Counselling , 2nd , Hoboken : John Wiley .
   Google Scholar
• Varmus , H. 2010 . Ten years on—The human genome and medicine . N. Engl. J. Med , 362 : 21
   Google Scholar
• Wilson , J. M. G. and Jungner , G. Principles and practice of screening for disease . Public Health Papers no. 34 . 1968 . Geneva: World Health Organization
   Google Scholar
• Wolfberg , A. J. 2006 . Genes on the web—Direct-to-consumer marketing of genetic testing . N. Engl. J. Med , 355 : 6
   Google Scholar