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Articles

Media Coverage of Ethical Issues in Predictive Genetic Testing: A Qualitative Analysis

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References

  • Abel, E., S. D. Horner, D. Tyler, and S. A. Innerarity. 2005. The impact of genetic information on policy and clinical practice. Policy, Politics & Nursing Practice 6 (1):5–14. doi: 10.1177/1527154404272143.
  • American Society of Clinical Oncology. 2003. American society of clinical oncology policy statement update: genetic testing for cancer susceptibility. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology 21 (12):2397–406. doi: 10.1200/JCO.2003.03.189.
  • Andorno, R. 2004. The right not to know: An autonomy based approach. Journal of Medical Ethics 30 (5):435–9; discussion 439–40. doi: 10.1136/jme.2002.001578.
  • Aston, R. 1998. Genetic counselling must be non-directive. BMJ 317 (7150):82. doi: 10.1136/bmj.317.7150.82.
  • Bergsma, L. J. 2004. Empowerment education. American Behavioral Scientist 48 (2):152–64. doi: 10.1177/0002764204267259.
  • Borzekowski, D. L., Y. Guan, K. C. Smith, L. H. Erby, and D. L. Roter. 2014. The Angelina effect: Immediate reach, grasp, and impact of going public. Genetics in Medicine 16 (7):516–21. doi: 10.1038/gim.2013.181.
  • Brennan, S. 2016. “Are DIY Gene -Testing Kits a Good Idea??” The Guardian, June 13.
  • Caulfield, T. 2005. Popular media, biotechnology, and the cycle of hype the mass media’s influence on health law and policy symposium. Houston Journal of Health Law & Policy 5:213–233.
  • Caulfield, T, P. Borry, M. Toews, B. S. Elger, H. T. Greely, and A. McGuire. 2015. Marginally scientific? Genetic testing of children and adolescents for lifestyle and health promotion. Journal of Law and the Biosciences 2 (3):627–44. doi: 10.1093/jlb/lsv038.
  • Campbell, D. 2013. Blood screening that is preventing heart attacks—but not in England: NHS elsewhere in Britain is tracking down and treating people with inherited condition. The Guardian, January 23.
  • Carey, T. 2015. Should you worry about your genes? The Daily Telegraph, March 7.
  • Collins, N. 2013. Breast cancer drugs offered to women at high risk. The Daily Telegraph, June 25.
  • Craig, D. A. 2000. Ethical language and themes in news coverage of genetic testing. Journalism & Mass Communication Quarterly 77 (1):160–74. doi: 10.1177/107769900007700112.
  • Donnelly, L. 2014. Women offered hope of a blood test that can predict the risk of breast cancer years ahead. The Daily Telegraph, June 27.
  • Elger, B., K. Michaud, and P. Mangin. 2010. When information can save lives: The duty to warn relatives about sudden cardiac death and environmental risks. Hastings Center Report 40 (3):39–45. doi: 10.1353/hcr.0.0254.
  • Elger, B. S. 1998. Médecine Prédictive Et Décisions Procréatives Et Prénatales. Collection Recherches et Travaux. Chêne-Bourg, Paris: Editions Médecine & Hygiène Département Livre Georg; Diffusion en France Vigot.
  • Elger, B. S. 2010a. Ethical, legal and social issues in the genetic testing of minors. In Handbook of genomics and the family: Psychosocial context for children and adolescents, ed. K. P. Tercyak, 485–521. Boston, MA: Springer.
  • Elger, B. S. 2010b. Le Paternalisme Médical: Mythe Ou Réalité? Aspects Philosophiques Et Empiriques D’un Phénomène Persistant. Chêne-Bourg: Editions Médecine & Hygiène.
  • Elo, S., and H. Kyngas. 2008. The qualitative content analysis process. Journal of Advanced Nursing 62 (1):107–15. doi: 10.1111/j.1365-2648.2007.04569.x.
  • Ensor, J. 2015. “After Watching My Father Lose His Memory, I Had to Know My Fate.” The Daily Telegraph, April 11.
  • Evans, J. P., C. Skrzynia, and W. Burke. 2001. The complexities of predictive genetic testing. BMJ 322 (7293):1052–6. doi: 10.1136/bmj.322.7293.1052.
  • Freeman, H. 2013. She has challenged not just her own public image but also the wearisome cliche of how a woman considered sexy talks about her body. The Guardian, May 15.
  • Fulda, K. G., and K. Lykens. 2006. Ethical issues in predictive genetic testing: A public health perspective. Journal of Medical Ethics 32 (3):143–7. doi: 10.1136/jme.2004.010272.
  • Garrett, J. M., and S. J. Bird. 2007. Ethical issues in communicating science. Science and Engineering Ethics 6 (4):435–42. doi: 10.1007/s11948-000-0001-7.
  • Gerhards, J., and M. S. Schäfer. 2007. Hegemony of supporters. Comparing mass media debates on human genome research in Germany and the US. Soziale Welt 58 (4):367.
  • Gibbs, S. 2015. DNA-screening test 23andMe launches in UK after US ban. The Guardian, October 2.
  • Hamilton, J. G., M. Lobel, and A. Moyer. 2009. Emotional distress following genetic testing for hereditary breast and ovarian cancer: A meta-analytic review. Health Psychology 28 (4):510–8. doi: 10.1037/a0014778.
  • Harris, M., I. Winship, and M. Spriggs. 2005. Controversies and ethical issues in cancer-genetics clinics. The Lancet Oncology 6 (5):301–10. doi: 10.1016/S1470-2045(05)70166-2.
  • Haupt, L. 2018. Rescue via genetic findings. Hastings Center Report 48 (3):2. doi: 10.1002/hast.844.
  • Henderson, L., and J. Kitzinger. 2007. Orchestrating a science ‘event’: The case of the human genome project. New Genetics and Society 26 (1):65–83. doi: 10.1080/14636770701218175.
  • Hirst, O. 2015. Why a double mastectomy before the age of 30 can be a laughing matter. The Guardian, August 13.
  • Houfek, J. F., B. S. Soltis-Vaughan, J. R. Atwood, G. M. Reiser, and G. B. Schaefer. 2015. Adults’ perceptions of genetic counseling and genetic testing. Applied Nursing Research 28 (1):25–30. doi: 10.1016/j.apnr.2014.03.001.
  • Huibers, A. K., and A. van ‘T Spijker. 1998. The autonomy paradox: Predictive genetic testing and autonomy: Three essential problems. Patient Education and Counseling 35 (1):53–62. doi: 10.1016/S0738-3991(98)00083-4.
  • Jackson, L., L. Goldsmith, and H. Skirton. 2014. Guidance for patients considering direct-to-consumer genetic testing and health professionals involved in their care: Development of a practical decision tool. Family Practice 31 (3):341–8. doi: 10.1093/fampra/cmt087.
  • Jeffries, S. 2014. “Family: How Much Do You Want to Know? If You Could Manipulate Your Child’s Future - Would You? Stuart Jeffries Meets Geneticist Dr Sharon Moalem.” The Guardian, April 5.
  • Jolie, A. 2013. “My Medical Choice.” The New York Times, May 13.
  • Jolie Pitt, A. 2015. “Diary of a Surgery.” The New York Times, March 24. Accessed June 7, 2017. https://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html?_r=0.
  • Kalokairinou, L., H. C. Howard, S. Slokenberga, E. Fisher, M. Flatscher-Thöni, M. Hartlev, R. van Hellemondt, J. Juškevičius, J. Kapelenska-Pregowska, P. Kováč., et al. 2018. Legislation of direct-to-consumer genetic testing in Europe: A fragmented regulatory landscape. Journal of Community Genetics 9 (2):117–32. doi: 10.1007/s12687-017-0344-2.
  • Kamenova, K., A. Reshef, and T. Caulfield. 2014. Angelina Jolie’s faulty gene: Newspaper coverage of a celebrity’s preventive bilateral mastectomy in Canada, the United States, and the United Kingdom. Genetics in Medicine 16 (7):522–8. doi: 10.1038/gim.2013.199.
  • Knapton, S.. 2014. “Genetic Screening from Birth to Identify Disease Risks ‘within 40 Years’.” The Daily Telegraph, January 10.
  • Lolkema, M. P., C. G. Gadellaa-van Hooijdonk, A. L. Bredenoord, P. Kapitein, N. Roach, E. Cuppen, N. V. Knoers, and E. E. Voest. 2013. Ethical, legal, and counseling challenges surrounding the return of genetic results in oncology. Journal of Clinical Oncology 31 (15):1842–8. doi: 10.1200/JCO.2012.45.2789.
  • Lucassen, A., and M. Parker. 2010. Confidentiality and sharing genetic information with relatives. The Lancet 375 (9725):1507–9. doi: 10.1016/S0140-6736(10)60173-0.
  • Lynch, J., A. Parrott, R. J. Hopkin, and M. Myers. 2011. Media coverage of direct-to-consumer genetic testing. Journal of Genetic Counseling 20 (5):486. doi: 10.1007/s10897-011-9374-9.
  • Mand, C., L. Gillam, M. B. Delatycki, and R. E. Duncan. 2012. Predictive genetic testing in minors for late-onset conditions: A chronological and analytical review of the ethical arguments. Journal of Medical Ethics 38 (9):519–24. doi: 10.1136/medethics-2011-100055.
  • Marteau, T. M., and R. T. Croyle. 1998. Psychological responses to genetic testing. BMJ 316 (7132):693–6. doi: 10.1136/bmj.316.7132.693.
  • Miah, A. 2005. Genetics, cyberspace and bioethics: Why not a public engagement with ethics? Public Understanding of Science 14 (4):409–21. doi: 10.1177/0963662505056616.
  • Millum, J. 2014. The foundation of the child’s right to an open future. Journal of Social Philosophy 45 (4):522–38. doi: 10.1111/josp.12076.
  • Moorhead, J. 2012. A cruel inheritance: The Smiths have a family history of Huntington's disease—an incurable neuro-degenerative disorder that has changed life for them all. The Guardian, September 22.
  • Moorhead, J. 2015. Doctors aim for single test to detect risk of four cancers in women. The Guardian, June 2.
  • Mukherjee, S. 2016. “‘I Should Come with a Letter of Warning …’.” The Daily Telegraph, May 21.
  • Murray-West, R. 2013. “Could New Cancer Tests Make You Uninsurable?” The Daily Telegraph, April 6.
  • Ormond, K. E. 2008. Medical ethics for the genome world: A paper from the 2007 william beaumont hospital symposium on molecular pathology. The Journal of Molecular Diagnostics 10 (5):377–82. doi: 10.2353/jmoldx.2008.070162.
  • Pemberton, M. 2013. Breast cancer is still a risky business. The Daily Telegraph, January 28.
  • Pemberton, M. 2014. Should it be Angelina's job to educate us about health? The Daily Telegraph, September 22.
  • Pennacchini, M., and C. Pensieri. 2011. Is non-directive communication in genetic counseling possible? La Clinica Terapeutica 162 (5):e141–4.
  • Pilkington, Ed., J. Meikle, and S. Ridley. 2013. Experts hail Jolie for going public on the private affair of her life-saving treatment: Actor raises awareness of test for defective gene: screening detects risk of developing breast cancer. The Guardian, May 15.
  • Robinson, A. 2016. “DNA-Testing Kit 23andme: Patient-Powered Healthcare or Just Confusing?” The Guardian, January 12.
  • Rothstein, M. A. 2018. Reconsidering the duty to warn genetically at-risk relatives. Genetics in Medicine 20 (3):285. doi: 10.1038/gim.2017.257.
  • Sample, I. 2011. Patients' genomes to be stored with medical records: US Pilot study hopes to improve drug choices: cost of sequencing now similar to single gene test. The Guardian, December 29.
  • Schwitzer, G., G. Mudur, D. Henry, A. Wilson, M. Goozner, M. Simbra, M. Sweet, and K. A. Baverstock. 2005. What are the roles and responsibilities of the media in disseminating health information? PLoS Medicine 2 (7):576–582. doi: 10.1371/journal.pmed.0020215.
  • U.S. Food and Drug Administration. 2013. “Warning Letter.” Accessed September 03, 2018. https://www.fda.gov/iceci/enforcementactions/warningletters/2013/ucm376296.htm.
  • U.S. Food and Drug Administration. 2017. “FDA Allows Marketing of First Direct-to-Consumer Tests That Provide Genetic Risk Information for Certain Conditions: FDA News Release.” Accessed September 03, 2018. https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm551185.htm.
  • U.S. Food and Drug Administration. 2018. “FDA Authorizes, with Special Controls, Direct-to-Consumer Test That Reports Three Mutations in the BRCA Breast Cancer Genes: FDA News Release.” Accessed September 03, 2018. https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm599560.htm.
  • Vadaparampil, S. T., C. A. Miree, C. Wilson, and P. B. Jacobsen. 2007. Psychosocial and behavioral impact of genetic counseling and testing. Breast Disease 27 (1):97–108. doi: 10.3233/BD-2007-27106.
  • Vayena, E. 2015. Direct-to-consumer genomics on the scales of autonomy. Journal of Medical Ethics 41 (4):310–4. doi: 10.1136/medethics-2014-102026.
  • Weishaar, H., L. Dorfman, N. Freudenberg, B. Hawkins, K. Smith, O. Razum, and S. Hilton. 2016. Why media representations of corporations matter for public health policy: A scoping review. BMC Public Health 16 (1):899. doi: 10.1186/s12889-016-3594-8.
  • Wertz, D. C., and J. C. Fletcher. 1991. Privacy and disclosure in medical genetics examined in an ethics of care. Bioethics 5 (3):212–32. doi: 10.1111/j.1467-8519.1991.tb00161.x.
  • Wertz, D. C., J. C. Fletcher, and K. Berg. 2003. “Review of Ethical Issues in Medical Genetics: Report of Consultants to WHO.” http://www.who.int/genomics/publications/en/ethical_issuesin_medgenetics%20report.pdf.
  • Wiggins, S., P. Whyte, M. Huggins, S. Adam, J. Theilmann, M. Bloch, S. B. Sheps, M. T. Schechter, and M. R. Hayden. 1992. The psychological consequences of predictive testing for Huntington’s disease. Canadian collaborative study of predictive testing. New England Journal of Medicine 327 (20):1401–5. doi: 10.1056/NEJM199211123272001.
  • Yarborough, M., J. A. Scott, and L. K. Dixon. 1989. The role of beneficence in clinical genetics: Non-directive counseling reconsidered. Theoretical Medicine 10 (2):139–49. doi: 10.1007/BF00539879.
  • Zimmermann, B. M., N. Aebi, S. Kolb, D. Shaw, and B. S. Elger. 2018. Content, evaluations and influences in newspaper coverage of predictive genetic testing: A comparative media content analysis from the United Kingdom and Switzerland. Public Understanding of Science 28 (3): 963662518816014. doi: 10.1177/0963662518816014.

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