The ethical framing of personalized medicine

Current Opinion in Allergy and Clinical Immunology

Volumn 14, Issue 5, 2014, Pages 404-408

  Joly, Yann ^a   Saulnier, Katie M ^a   Osien, Gladys ^a   Knoppers, Bartha M ^a  

^a MCGILL UNIVERSITY   (Canada)

Author keywords

and social issues; biobanking; ethical; legal; personalized medicine

Indexed keywords

CONFIDENTIALITY; GENETIC SCREENING; HEALTH CARE ACCESS; HUMAN; INFORMED CONSENT; LEGAL ASPECT; MEDICAL ETHICS; PERSONALIZED MEDICINE; PRIORITY JOURNAL; PRIVACY; REVIEW; SOCIAL ASPECT; SOCIETY; ETHICS; HEALTH CARE FACILITY;

BIOLOGICAL SPECIMEN BANKS; CONFIDENTIALITY; HUMANS; INDIVIDUALIZED MEDICINE; INFORMED CONSENT;

EID: 84906935240     PISSN: 15284050     EISSN: 14736322     Source Type: Journal    
DOI: 10.1097/ACI.0000000000000091     Document Type: Review

References (26)

1. Schleidgen S, Klingler C, Bertram T, et al. What is personalized medicine: sharpening a vague term based on a systematic literature review. BMC Med Ethics 2013; 14:55.
2. Roden DM, Tyndal RF. Genomic medicine, precision medicine, personalized medicine: what's in a name? Clin Pharmacol Ther 2013; 94:169-172.
3. Cornetta K, Brown CG. Balancing personalized medicine and personalized care. Acad Med 2013; 88:309-313.
4. Kuchinke W. Ethical concerns caused by integrative patient empowerment solutions for personalized medicine. Conf Proc IEEE Eng Med Biol Soc 2013; 2013:4775-4778.
5. Bunnik EM, Janssens ACJ, Schermer MH. A tiered-layered-staged model for informed consent in personal genome testing. Eur J Hum Genet 2013; 21:596-601.
6. Jamal L, Sapp JC, Lewis K. Research participants' attitudes towards the confidentiality of genomic sequence information. Eur J Hum Genet 2013; doi: 10.1038/ejhg.2013.276. [Epub ahead of print]
7. Wagner JK, Mozersky JT, Pyeritz RE. 'Use it or lose it' as an alternative approach to protect genetic privacy in personalized medicine. Urol Oncol 2014; 32:198-201.
8. Rothstein MA, Joly Y. Genetic information and insurance underwritings: contemporary issues and approaches in the global economy insurance. In: Atkinson P, Glasner P, Lock M, editors. Handbook of genetics and society: mapping the new genomic era. London, UK and New York, NY, USA: Routledge; 2009.
9. Goh AMY, Chiu E, Yastrubetskaya O, et al. Perception, experience, and response to genetic discrimination in Huntington's disease: the Australian results of the international respond-HD study. Genet Test Mol Biomarkers 2013; 17:115-121.
10. Matloff ET, Bonadies DC, Moyer A, et al. Changes in specialists' perspectives on cancer genetic testing, prophylactic surgery and insurance discrimination: then and now. J Genet Counsel 2014; 23:164-171.
11. Levin N. A defense of genetic discrimination. Hastings Cent Rep 2013; 43:33-42.
12. Rothstein MA. Genetic discrimination in employment is indefensible. Hastings Cent Rep 2013; 43:3-4.
13. Joly Y, Ngueng Feze I, Simard J. Genetic discrimination and life insurance: a systematic review of the evidence. BMC Med 2013; 11:25; 1-15.
14. Joly Y, Burton H, Knoppers BM, et al. Life insurance: genomic stratification and risk classification. Eur J Hum Genet 2014; 22:575-579.
15. Beskow LM, Namey EE, Miller PR, et al. IRB chairs' perspecivtes on genotypedriven research recruitment. IRB 2012; 34:1-10.
16. Budin-Ljøsne I, Soye KJ, Tassé AM, et al. Genotype-driven recruitment: a strategy whose time has come? BMC Med Genom 2013; 6:19.
17. Lolkema MP, Gadellaa-van Hooijdonk CG, Bredenoord AL, et al. Ethical, legal, and counseling challenges surrounding the return of genetic results in oncology. J Clin Oncol 2013; 31:1842-1848.
18. Knoppers BM, Rioux A, Zawati MH. Pediatric research personalized? International perspectives on the return of results. Pers Med 2013; 10:89-95.
19. Bombard Y, Abelson J, Simeonov D, et al. Citizens' perspectives on personalized medicine: a qualitative public deliberation study. Eur J Hum Genet 2013; 21:1197-1201.
20. McClellan KA, Avard D, Simard J, et al. Personalized medicine and access to healthcare: potential for inequitable access? Eur J Hum Genet 2013; 21:143-147.
21. McGowan ML, Settersten RA Jr, Juengst ET, et al. Integrating genomics into clinical oncology: ethical and social challenges from proponents of personalized medicine. Urol Oncol 2014; 32:187-192.
22. Hazin R, Brothers KB, Malin BA, et al. Ethical, legal, and social implications of incorporating genomic information into electronic health records. Genet Med 2013; 15:810-816.
23. Su P. Direct-to-consumer genetic testing: a comprehensive view. Yale J Biol Med 2013; 86:359-365.
24. Roberts JS, Ostergren J. Direct-to-consumer genetic testing and personal genomics services: a review of recent empirical studies. Curr Genet Med Rep 2013; 1:182-200.
25. Clayton EW, Haga S, Kuszler P, et al. Managing incidental genomic findings: legal obligations of clinicians. Genet Med 2013; 15:624-629.
26. Hamburg MA, Collins FS. The path to personalized medicine. N Engl J Med 2010; 363:301-304.