The Application of Bioethical Principles in the Use of Pharmacogenomics in Person-Centered Medicine
Main Article Content
Abstract
This study reviews ethical issues encountered in the literature about the use of pharmacogenomics in personalized medicine. Data gathered from Medline, Scopus, and Scielo were grouped as issues belonging to the application of the four bioethical principles. Autonomy: informed consent with vulnerable populations, consent for biobanks, changes in the physician-patient relationship, safeguarding confidentiality; non-malifecence: risks of stigmatization and discrimination, risks in clinical trials; beneficence: risk/benefit assessment in favor of benefit; and justice: pharmacogenetic tests and public health interests, equity concerns. Issues discussed were: reasons in favor and against returning research results from genomic and pharmacogenetic testing, enhancing the participation of vulnerable populations, and the reconsideration of respect for autonomy from a viewpoint too individualistic to a communal perspective since personal reality is constructed in relation to many significant others.
Keywords:
Pharmacogenomics, pharmacogenetics, personalized medicine, ethics, bioethical principles
Article Details
How to Cite
YUNTA, Eduardo Rodriguez.
The Application of Bioethical Principles in the Use of Pharmacogenomics in Person-Centered Medicine.
Medical Research Archives, [S.l.], v. 10, n. 7, july 2022.
ISSN 2375-1924.
Available at: <https://esmed.org/MRA/mra/article/view/2881>. Date accessed: 25 apr. 2024.
doi: https://doi.org/10.18103/mra.v10i7.2881.
Section
Research Articles
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
References
Center for Drug Evaluation and Research of the U.S. Food and Drugs Administration http://www.fda.gov/cder/guidance/
Lindpaintner K. Pharmacogenetics and the future of medical practice. J Mol Med (Berl). 2003 Mar;81(3):141-53. doi: 10.1007/s00109-002-0416-5. Epub 2003 Mar 25. PMID: 12682723.
Gennady E. Emerging Medical Technologies. World Scientific Journal 2015;9(1):80-2.
Owusu-Obeng A, Weitzel KW, Hatton RC, Staley BJ, Ashton J, Cooper-Dehoff RM, Johnson JA. Emerging roles for pharmacists in clinical implementation of pharmacogenomics. Pharmacotherapy. 2014 Oct;34(10):1102-12. doi: 10.1002/phar.1481. Epub 2014 Sep 15. PMID: 25220280; PMCID: PMC4188772.
Shastry BS. Pharmacogenetics and the concept of individualized medicine. Pharmacogenomics J. 2006 Jan-Feb;6(1):16-21. doi: 10.1038/sj.tpj.6500338. PMID: 16302022.
Delloitte. Achieving the promise of targeted therapies: overcoming the challenges. Targeted Therapies. Deloitte Center for Health Solutions, Deloitte, Washington, DC, USA, 2007
Rodriguez-Yunta E, Lolas-Stepke F. The Place of Pharmacogenetics in Person-
centered Medicine: A Bioethical Reflection. Curr Med. 2019; 2(1):5-13.
Erdmann A, Rehmann-Sutter C, Bozzaro C. Patients' and professionals' views related to ethical issues in precision medicine: a mixed research synthesis. BMC Med Ethics. 2021 Aug 31;22(1):116. doi: 10.1186/s12910-021-00682-8. PMID: 34465328; PMCID: PMC8406914.
Hodge JG Jr. Ethical issues concerning genetic testing and screening in public health. Am J Med Genet C Semin Med Genet 2004;125C:66-70. doi: 10.1002/ajmg.c.30005. PMID: 14755435.
Corrigan O. Empty ethics: the problem with informed consent. Sociol Health Illn. 2003 Nov;25(7):768-92. doi: 10.1046/j.1467-9566.2003.00369.x. PMID: 19780205.
McGuire AL, Beskow LM. Informed consent in genomics and genetic research. Annu Rev Genomics Hum Genet. 2010;11:361-381. doi:10.1146/annurev-genom-082509-141711
Rodriguez E., Valdebenito C., Misseroni A., Fernandez L, Outomuro D., Schiattino I., Ferrer M., Lolas F. Social, ethical and legal attitudes towards genomic research in four Latin American countries. Electronic Journal of Biotechnology 2005; 8(3). Available from: http://www.ejbiotechnology.info/content/vol8/issue3/full/9/index.html
Claw KG, Anderson MZ, Begay RL, Tsosie KS, Fox K. Summer for Indigenous Communities Genomics (SING) Consortium, and Garrison NA. 7/27/2018. A framework for enhancing ethical genomic research with indigenous communities. Nature Communications, 2018; 9, 1, Pp. 2957. DOI: 10.1038/s41467-018-05188-3
Blacksher JE, Lund JR, Spicer PG. An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation. PLoS One. 2020 Mar 16;15(3):e0229540. doi: 10.1371/journal.pone.0229540. PMID: 32176704; PMCID: PMC7075569.
Soofi H, van Leeuwen E. Within and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boards. J Community Genet. 2016 Oct;7(4):261-270. doi: 10.1007/s12687-016-0274-4. Epub 2016 Aug 5. PMID: 27492247; PMCID: PMC5138161.
Moran C, Thornburg CD, Barfield RC. Ethical considerations for pharmacogenomic testing in pediatric clinical care and research. Pharmacogenomics. 2011;12(6):889-895. doi:10.2217/pgs.10.216
Brothers KB. Ethical issues in pediatric pharmacogenomics. J Pediatr Pharmacol Ther. 2013;18(3):192-198. doi: 10.5863/1551-6776-18.3.192.
Haga SB. Pharmacogenomic Testing In Pediatrics: Navigating The Ethical, Social, And Legal Challenges. Pharmgenomics Pers Med. 2019;12:273-285. Published 2019 Oct 14. doi:10.2147/PGPM.S179172.
Longo C, Rahimzadeh V, Bartlett G. Communication of Pharmacogenomic test results and treatment plans in pediatric oncology: deliberative stakeholder consultations with parents. BMC Palliat Care. 2021 Jan 12;20(1):15. doi: 10.1186/s12904-021-00709-2. PMID: 33435936; PMCID: PMC7805194.
Avard D, Silverstein T, Sillon G, Joly Y. Researchers’ Perceptions of the Ethical Implications of Pharmacogenomics Research with Children. Public Health Genomics 2009;12:191-201. doi: 10.1159/000189633
Borry P, Howard HC, Senecal K, Avard D. Direct-to-consumer genome scanning services. Also for children? Nat. Rev. Genet. 2009; 10(1):8. PubMed: 19030022. DOI: 10.1038/nrg2501
Avard D, Silverstein T, Sillon G, Joly Y. Researchers’ Perceptions of the Ethical Implications of Pharmacogenomics Research with Children. Public Health Genomics 2009;12:191-201. doi: 10.1159/000189633
Rodriguez, E. Ethical Issues of Consent for Genetic Research in Latin American Bio-banks. J Clinic Res Bioeth 2015; 6: 228. DOI: 10.4172/2155-9627.1000228.
Valle-Mansilla JI, Sáenz-de-Tejada-López M y Ruiz-Canela M. Deficiencias en las hojas de información de estudios genómicos. Cuadernos de Bioética. 2010;XXI(1):95-108.. ISSN: 1132-1989. Disponible en: https://www.redalyc.org/articulo.oa?id=87513725007
Rose D, Russo J, Wykes T. Taking part in a pharmacogenetic clinical trial: assessment of trial participants understanding of information disclosed during the informed consent process. BMC Med Ethics 2013 Sep 11;14:34. doi: 10.1186/1472-6939-14-34. PMID: 24025622; PMCID: PMC3847084.
Lee G, Varughese LA, Conway L, Stojinski C, Ashokkumar S, Monono K, Matthai W, Kolansky DM, Giri J, Tuteja S. Attitudes toward pharmacogenetics in patients undergoing CYP2C19 testing following percutaneous coronary intervention. Per Med. 2022 Mar;19(2):93-101. doi: 10.2217/pme-2021-0064. Epub 2022 Jan 5. PMID: 34984913; PMCID: PMC8885847.
Kurnat-Thoma E. Educational and Ethical Considerations for Genetic Test Implementation Within Health Care Systems. Netw Syst Med. 2020;3(1):58-66. Published 2020 May 26. doi:10.1089/nsm.2019.0010.
Master Z, Campo-Engelstein L, Caulfield T. Scientists' perspectives on consent in the context of biobanking research. Eur J Hum Genet. 2015;23(5):569-574. doi:10.1038/ejhg.2014.143..
Sheehan M. Can Broad Consent be Informed Consent?. Public Health Ethics. 2011;4(3):226-235. doi:10.1093/phe/phr020.
Frederieke H. van der Baan, Rose D. C. Bernabe, Annelien L. Bredenoord, Jochem G. Gregoor, Gerben Meynen, Mirjam J. Knol, Ghislaine J. M. W. van Thiel, Consent in psychiatric biobanks for pharmacogenetic research, International Journal of Neuropsychopharmacology, Volume 16, Issue 3, April 2013, Pages 677–682, https://doi.org/10.1017/S146114571200048X
Barry MJ, Edgman-Levitan S. Shared decision making--pinnacle of patient-centered care. N Engl J Med. 2012 Mar 1;366(9):780-1. doi: 10.1056/NEJMp1109283. PMID: 22375967.
Badzek L, Henaghan M, Turner M, Monsen R. Ethical, legal, and social issues in the translation of genomics into health care. J Nurs Scholarsh. 2013 Mar;45(1):15-24. doi: 10.1111/jnu.12000. Epub 2013 Jan 31. PMID: 23369261.
Callier, Shawneequa L. Ethical, Legal, and Social Implications of Personalized Genomic Medicine Research: Current Literature and Suggestions for the Future. Bioethics , vol. 30.9, 2016, pp. 698-705. doi:10.1111/bioe.12285
Turner SM, Cooley-Quille MR. Socioecological and sociocultural variables in psychopharmacological research: methodological considerations. Psychopharmacol Bull. 1996;32(2):183-92. PMID: 8783887.
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 Feb;32(2):198-201. doi: 10.1016/j.urolonc.2013.09.016. PMID: 24445287; PMCID: PMC3970576.
Muflih S, Al-Husein BA, Karasneh R, Alzoubi KH. Physicians' Attitudes and Ethical Obligations to Pharmacogenetic Testing. J Multidiscip Healthc. 2020;13:249-258. Published 2020 Mar 10. doi:10.2147/JMDH.S245369
Dion-Labrie M, Fortin MC, Hébert MJ, Doucet H. Reflexiones éticas sobre la medicina personalizada: ¿la alianza entre la ciencia y la medicina, realizada por fin? Revista Colombiana de Bioética, vol. 3, núm. 2, diciembre, 2008, pp. 57-82
Robertson JA. Consent and privacy in pharmacogenetic testing. Nat Genet. 2001 Jul;28(3):207-9. doi: 10.1038/90032. PMID: 11431685.
Vaszar, L., Rosen, G. and Raffin, T. Pharmacogenomics and the challenge to privacy. Pharmacogenomics J 2002; 2, 144–147 . https://doi.org/10.1038/sj.tpj.6500110
Knoppers BM. Consent to 'personal' genomics and privacy. Direct-to-consumer genetic tests and population genome research challenge traditional notions of privacy and consent. EMBO Rep. 2010 Jun;11(6):416-9. doi: 10.1038/embor.2010.69. Epub 2010 May 7. PMID: 20448662; PMCID: PMC2892328.
Breckenridge A, Lindpaintner K, Lipton P, McLeod H, Rothstein M, Wallace H. Pharmacogenetics: ethical problems and solutions. Nat Rev Genet. 2004 Sep;5(9):676-80. doi: 10.1038/nrg1431. PMID: 15372090.
Rodriguez E., Valdebenito C., Misseroni A., Fernandez L, Outomuro D., Schiattino I., Ferrer M., Lolas F. Social, ethical and legal attitudes towards genomic research in four Latin American countries.. Electronic Journal of Biotechnology 2005; 8(3). Available from: http://www.ejbiotechnology.info/content/vol8/issue3/full/9/index.html.
Lea R, Chambers G . Monoamine oxidase, addiction, and the "warrior" gene hypothesis. N. Z. Med. J. 2007; 120 (1250): U2441. PMID: 17339897.
Jimenez-Sanchez G. Developing a platform for genomic medicine in Mexico. Science 2003; 300 (5617): 295-296. doi: 10.1126/science.1084059. PMID: 12690190
Lindpaintner K. Pharmacogenetics and the future of medical practice. Br J Clin Pharmacol. 2002;54(2):221-230. doi:10.1046/j.1365-2125.2002.01630.x
Sadée W. Pharmacogenomics. West J Med. 1999 Nov;171(5-6):328-32. doi: 10.1093/hmg/ddi261. PMID: 18751198; PMCID: PMC1308751.
Lindpaintner K. Pharmacogenetics and the future of medical practice. J Mol Med (Berl). 2003 Mar;81(3):141-53. doi: 10.1007/s00109-002-0416-5. Epub 2003 Mar 25. PMID: 12682723.
Nuffield Council on Bioethics. Pharmacogenetics ethical issues, 2003. www.nuffieldbioethics.org/pharmacogenetics
Prainsack B. Personalized medicine. Empowered patients in the 21st
century? New York: New York University Press; 2017.
Lindpaintner K. Pharmacogenetics and the future of medical practice. Br J Clin Pharmacol. 2002;54(2):221-230. doi:10.1046/j.1365-2125.2002.01630.x.
Rodríguez E. Ética en innovación tecnológica y farmacogenómica. Acta Bioethica 2009 Monografía; 2: 265-282. https://scielo.conicyt.cl/pdf/abioeth/v26n2/1726-569X-abioeth-46-137.pdf
Ndebele P, Musesengwa R. Will developing countries benefit from their participation in genetics research? Malawi Med J. 2008 Jun;20(2):67-9. doi: 10.4314/mmj.v20i2.10960. PMID: 19537436; PMCID: PMC3345671.
Juengst ET, Settersten RA Jr, Fishman JR, McGowan ML. After the revolution? Ethical and social challenges in 'personalized genomic medicine'. Per Med. 2012;9(4):429-439. doi:10.2217/pme.12.37
McLeod HL, Evans WE. Pharmacogenomics: unlocking the human genome for better drug therapy. Annu Rev Pharmacol Toxicol. 2001;41:101-21. doi: 10.1146/annurev.pharmtox.41.1.101. PMID: 11264452.
Breckenridge A, Lindpaintner K, Lipton P, McLeod H, Rothstein M, Wallace H. Pharmacogenetics: ethical problems and solutions. Nat Rev Genet 2004;5:676-80.
Corrigan OP. Pharmacogenetics, ethical issues: a review of the Nuffield Council on Bioethics Report. J Med Ethics 2005;31:144-8. doi: 10.1136/jme.2004.007229. PMID: 15738433; PMCID: PMC1734105.
Nuffield Council on Bioethics. Pharmacogenetics ethical issues, 2003. www.nuffieldbioethics.org/pharmacogenetics.
Lagay, F. Pharmacogenomics: revolution in a bottle? American Medical Association 2003http://www.ama-assn.org/ama/pub/category/7459.html.Google Scholar
Wolf C.R., Smith G. and Smith R.L. Pharmacogenetics. BMJ 2000; Vol. 320:987-990.
Higashi MK, Veenstra DL. Managed care in the genomic era: assessing the cost effectiveness of genetic test. Am J Manag Care 2003; Jul;9(7):493-500. PMID: 12866628.
Zubiaur P, Prósper-Cuesta DN, Novalbos J, Mejía-Abril G, Navares-Gómez M, Villapalos-García G, Soria-Chacartegui P, Abad-Santos F. Patients' Perceptions of Pharmacogenetic Testing and Access to Their Results: State of the Art in Spain and Systematic Review. J Pers Med. 2022 Feb 12;12(2):270. doi: 10.3390/jpm12020270. PMID: 35207758; PMCID: PMC8879541.
Zubiaur P, Mejía-Abril G, Navares-Gómez M, Villapalos-García G, Soria-Chacartegui P, Saiz-Rodríguez M, Ochoa D, Abad-Santos F. PriME-PGx: La Princesa University Hospital Multidisciplinary Initiative for the Implementation of Pharmacogenetics. J Clin Med. 2021 Aug 24;10(17):3772. doi: 10.3390/jcm10173772. PMID: 34501219; PMCID: PMC8432257.
Ariefdjohan M, Lee YM, Stutzman DL, LeNoue S, Wamboldt MZ. The Utility of Pharmacogenetic-Guided Psychotropic Medication Selection for Pediatric Patients: A Retrospective Study. Pediatr Rep. 2021;13(3):421-433. Published 2021 Jul 28. doi:10.3390/pediatric13030049
Brothers KB, Rothstein MA. Ethical, legal and social implications of incorporating personalized medicine into healthcare. Per Med. 2015;12(1):43-51. doi:10.2217/pme.14.65.
Peterson-Iyer K. Pharmacogenomics, ethics, and public policy. Kennedy Inst Ethics J. 2008 Mar;18(1):35-56. doi: 10.1353/ken.0.0004. PMID: 18561577.
Gershon ES, Alliey-Rodriguez N, Grennan K. Ethical and public policy challenges for pharmacogenomics. Dialogues Clin Neurosci. 2014;16(4):567-574. doi:10.31887/DCNS.2014.16.4/egershon
Wertz DC. Ethical, legal and social issues in pharmacogenomics. Pharmacogenomics J 2003;3:194-6. DOI: 10.1038/sj.tpj.6500188
Bustamante, C., De La Vega, F. and Burchard, E. Genomics for the world. Nature 2011; 475, 163–165. https://doi.org/10.1038/475163a.
Hansson MG. Taking the patients side: the ethics of pharmacogenetics. Per Med 2010; Jan;7(1):75-85. doi: 10.2217/pme.09.47. PMID: 29783366.
Miskimen T, Marin H, Escobar J. Psychopharmacological research ethics: special issues
affecting US ethnic minorities. Psychopharmacology (Berlin) 2003; Dec;171(1):98-104. doi: 10.1007/s00213-003-1630-8. Epub 2003 Nov 18. PMID: 14624328.
de Vries J, Bull SJ, Doumbo O, et al. Ethical issues in human genomics research in developing countries. BMC Med Ethics. 2011;12:5. Published 2011 Mar 18. doi:10.1186/1472-6939-12-5de.
Petersen KE, Prows CA, Martin LJ, Maglo KN. Personalized medicine, availability and group disparity: an inquiry into how physicians perceive and rate the elements and barriers of personalized medicine. Public Health Genomics 2014;17:209-20. doi: 10.1159/000362359. Epub 2014 May 21. PMID: 24852571.
Hunt LM, Kreiner MJ. Pharmacogenetics in primary care: the promise of personalized medicine and the reality of racial profiling. Cult Med Psychiatry. 2013 Mar;37(1):226-35. doi: 10.1007/s11013-012-9303-x. PMID: 23264029; PMCID: PMC3593998.
Nooruddin M, Scherr C, Friedman P, Subrahmanyam R, Banagan J, Moreno D, Sathyanarayanan M, Nutescu E, Jeyaram T, Harris M, Zhang H, Rodriguez A, Shaazuddin M, Perera M, Tuck M; ACCOuNT Investigators. Why African Americans say "No": A Study of Pharmacogenomic Research Participation. Ethn Dis. 2020 Apr 2;30(Suppl 1):159-166. doi: 10.18865/ed.30.S1.159. PMID: 32269457; PMCID: PMC7138442. DOI: .
Tata EA, Ambele MS, Pepper M. Barriers to Implementing Clinical Pharmacogenetics Testing in Sub-Saharan Africa. A Critical Review. Pharmaceutics. 2020 Aug 26;12(9):809. doi: 10.3390/pharmaceutics12090809. PMID: 32858798; PMCID: PMC7560181. DOI: 10.3390/pharmaceutics12090809.
Boyer BB, Dillard D, Woodahl EL, Whitener R, Thummel KE, Burke W. Ethical issues in developing pharmacogenetic research partnerships with American Indigenous communities. Clin Pharmacol Ther. 2011 Mar;89(3):343-5. doi: 10.1038/clpt.2010.303. PMID: 21326261; PMCID: PMC3090734.
Holm S. Pharmacogenetics, race and global injustice. Dev World Bioeth. 2008 Aug;8(2):82-8. doi: 10.1111/j.1471-8847.2006.00173.x. PMID: 19143085.
Root M. The use of race in medicine as a proxy for genetic differences. Philos Sci. 2003 Dec;70(5):1173-83. doi: 10.1086/377398. PMID: 17340785.
Petersen K, Prows C, Martin L and Maglo K. Personalized medicine, availability, and group disparity: An inquiry into how physicians perceive and rate the elements and barriers of personalized medicine. Public Health Genomics 2014; 17(4): 209–220. doi: 10.1159/000362359. Epub 2014 May 21. PMID: 24852571.
Prainsack B (2015) Is personalized medicine different? (Reinscription: the sequel) A response to Troy Duster. The British Journal of Sociology 66(1): 28–35. https://doi.org/10.1111/1468-4446.12117
Williams DR. Race/ethnicity and socioeconomic status: measurement and methodological issues. Int J Health Serv. 1996; 26:483–505. doi: 10.2190/U9QT-7B7Y-HQ15-JT14.
LaVeist TA. Disentangling race and socioeconomic status: a key to understanding health inequalities. J Urban Health 2005; 82:iii26–iii34. doi: 10.1093/jurban/jti061.
Benjamin R. A lab of their own: Genomic sovereignty as postcolonial science policy. Policy and Society 2009; 28(4): 341–355. https://doi.org/10.1016/j.polsoc.2009.09.007.
Duster T. The molecular reinscription of race: Unanticipated issues in biotechnology and forensic science. Patterns of Prejudice 2006; 40(4–5): 427–441. https://doi.org/10.1080/00313220601020148.
Suarez-Kurtz G, Aklillu E, Saito Y, Somogyi AA. Conference report: pharmacogenomics in special populations at WCP2018. Br J Clin Pharmacol. 2019 Mar;85(3):467-475. doi: 10.1111/bcp.13828. Epub 2019 Jan 24. PMID: 30537134; PMCID: PMC6379283. DOI: 10.1111/bcp.13828
Ortega VE, Meyers DA. Pharmacogenetics: implications of race and ethnicity on defining genetic profiles for personalized medicine. J Allergy Clin Immunol. 2014;133(1):16-26. doi:10.1016/j.jaci.2013.10.040
Nuffield Council on Bioethics. Pharmacogenetics ethical issues, 2003. www.nuffieldbioethics.org/pharmacogenetics.
Magavern EF, Gurdasani D, Ng FL, Lee SS. Health equality, race and pharmacogenomics. Br J Clin Pharmacol. 2022 Jan;88(1):27-33. doi: 10.1111/bcp.14983. Epub 2021 Aug 4. PMID: 34251046; PMCID: PMC8752640.
Mensah GA, Jaquish C, Srinivas P, Papanicolaou GJ, Wei GS, Redmond N, Roberts MC, Nelson C, Aviles-Santa L, Puggal M, Green Parker MC, Minear MA, Barfield W, Fenton KN, Boyce CA, Engelgau MM, Khoury MJ. Emerging Concepts in Precision Medicine and Cardiovascular Diseases in Racial and Ethnic Minority Populations. Circ Res. 2019 Jun 21;125(1):7-13. doi: 10.1161/CIRCRESAHA.119.314970. Epub 2019 Jun 20. PMID: 31219738; PMCID: PMC6590684.
Johnson JA. Ethnic differences in cardiovascular drug response: potential contribution of pharmacogenetics. Circulation. 2008; 118: 1383-93. doi: 10.1161/CIRCULATIONAHA.107.704023. PMID: 18809808; PMCID: PMC2730023.
Sun S. Between personalized and racialized precision medicine: A relative resources perspective. International Sociology 2020; 35(1), 90–110. doi:10.1177/0268580919885292
Fullerton SM, Wolf WA, Brothers KB, Clayton EW, Crawford DC, Denny JC, Greenland P, Koenig BA, Leppig KA, Lindor NM, McCarty CA, McGuire AL, McPeek Hinz ER, Mirel DB, Ramos EM, Ritchie MD, Smith ME, Waudby CJ, Burke W, Jarvik GP. Return of individual research results from genome-wide association studies: experience of the Electronic Medical Records and Genomics (eMERGE) Network. Genet Med. 2012 Apr;14(4):424-31. doi: 10.1038/gim.2012.15. Epub 2012 Feb 23. PMID: 22361898; PMCID: PMC3723451.
Bredenoord AL, Kroes HY, Cuppen E, Parker M, van Delden JJ. Disclosure of individual genetic data to research participants: the debate reconsidered. Trends Genet. 2011 Feb;27(2):41-7. doi: 10.1016/j.tig.2010.11.004. Epub 2010 Dec 27. PMID: 21190750.
Dressler LG. Return of research results from pharmacogenomic versus disease susceptibility studies: what's drugs got to do with it? Pharmacogenomics. 2012 Jun;13(8):935-49. doi: 10.2217/pgs.12.59. PMID: 22676197; PMCID: PMC4539533.
Dressler LG. Return of research results from pharmacogenomic versus disease susceptibility studies: what's drugs got to do with it? Pharmacogenomics. 2012 Jun;13(8):935-49. doi: 10.2217/pgs.12.59. PMID: 22676197; PMCID: PMC4539533.
Haga SB, Kawamoto K, Agans R, Ginsburg GS. Consideration of patient preferences and challenges in storage and access of pharmacogenetic test results. Genet Med. 2011; 13(10):887-890. doi:10.1097/GIM.0b013e31822077a5.
Kennedy MJ. Personalized medicines - are pharmacists ready for the challenge?. Integr Pharm Res Pract. 2018;7:113-123. Published 2018 Sep 25. doi:10.2147/IPRP.S133083.
McMahon T, Tucci J. The perceptions of pharmacists in Victoria, Australia on pharmacogenetics and its implications. Pharm Pract (Granada). 2011;9(3):141-147.
Sun S. Between personalized and racialized precision medicine: A relative resources perspective. International Sociology 2020; 35(1), 90–110. doi:10.1177/0268580919885292
Farley M. Feminism and Universal Morality. In Prospects for a Common Morality, ed. Gene Outka and John P. Reeder, Jr.. Princeton, NJ: Princeton University Press 1993, pp. 170-90.
Tiffin N. Tiered informed consent: respecting autonomy, agency and individuality in Africa. BMJ Global Health 2018;3:e001249. http://dx.doi.org/10.1136/bmjgh-2018-001249
Ng,P.C.,Murray,S.S.,Levy,S.,and Venter,J.C. An agenda for personalized medicine. Nature 2009; 461, 724–726 (2009). https://doi.org/10.1038/461724a.
Chua EW, Kennedy MA. Current State and Future Prospects of Direct-to-Consumer Pharmacogenetics. Front Pharmacol. 2012; 3:152. doi:10.3389/fphar.2012.00152.
Chua EW, Kennedy MA. Current State and Future Prospects of Direct-to-Consumer Pharmacogenetics. Front Pharmacol. 2012;3:152. doi:10.3389/fphar.2012.00152.
McLean MR. A Framework for Thinking Ethically About Human Biotechnology. In Medical Sociology in Africa 2006. DOI: 10.1007/978-3-319-03986-2_11. Available at http://www.scu.edu/ethics/publications/submitted/mclean/biotechframework.html.
Boyer BB, Dillard D, Woodahl EL, Whitener R, Thummel KE, Burke W. Ethical issues in developing pharmacogenetic research partnerships with American Indigenous communities. Clin Pharmacol Ther. 2011 Mar;89(3):343-5. doi: 10.1038/clpt.2010.303. PMID: 21326261; PMCID: PMC3090734.
El Shamieh S, Zgheib NK. Pharmacogenetics in developing countries and low resource environments. Human Genetics. 2021 Feb. DOI: 10.1007/s00439-021-02260-9. PMID: 33564904.
McKinnon RA, Ward MB, Sorich MJ. A critical analysis of barriers to the clinical implementation of pharmacogenomics. Ther Clin Risk Manag. 2007;3(5):751-759.
Dion-Labrie, Marianne, Fortin, M. C.; Hébert, M. J.; Doucet, H. Reflexiones éticas sobre la medicina personalizada Reflexiones éticas sobre la medicina personalizada: ¿la alianza entre la ciencia y la medicina, realizada por fin?. Revista Colombiana de Bioética, vol. 3, núm. 2, diciembre, 2008, pp. 57-82.
Mainet González Damián. Aspectos bioéticos de la farmacogenómica en la fase clínica de desarrollo de medicamentos. Rev Cubana Invest Bioméd [Internet]. 2016 Mar; 35( 1 ). Disponible en: http://scielo.sld.cu/scielo.php?script=sci_arttext&pid=S0864-03002016000100006&lng=es.
Lindpaintner K. Pharmacogenetics and the future of medical practice. J Mol Med (Berl). 2003 Mar;81(3):141-53. doi: 10.1007/s00109-002-0416-5. Epub 2003 Mar 25. PMID: 12682723.
Gennady E. Emerging Medical Technologies. World Scientific Journal 2015;9(1):80-2.
Owusu-Obeng A, Weitzel KW, Hatton RC, Staley BJ, Ashton J, Cooper-Dehoff RM, Johnson JA. Emerging roles for pharmacists in clinical implementation of pharmacogenomics. Pharmacotherapy. 2014 Oct;34(10):1102-12. doi: 10.1002/phar.1481. Epub 2014 Sep 15. PMID: 25220280; PMCID: PMC4188772.
Shastry BS. Pharmacogenetics and the concept of individualized medicine. Pharmacogenomics J. 2006 Jan-Feb;6(1):16-21. doi: 10.1038/sj.tpj.6500338. PMID: 16302022.
Delloitte. Achieving the promise of targeted therapies: overcoming the challenges. Targeted Therapies. Deloitte Center for Health Solutions, Deloitte, Washington, DC, USA, 2007
Rodriguez-Yunta E, Lolas-Stepke F. The Place of Pharmacogenetics in Person-
centered Medicine: A Bioethical Reflection. Curr Med. 2019; 2(1):5-13.
Erdmann A, Rehmann-Sutter C, Bozzaro C. Patients' and professionals' views related to ethical issues in precision medicine: a mixed research synthesis. BMC Med Ethics. 2021 Aug 31;22(1):116. doi: 10.1186/s12910-021-00682-8. PMID: 34465328; PMCID: PMC8406914.
Hodge JG Jr. Ethical issues concerning genetic testing and screening in public health. Am J Med Genet C Semin Med Genet 2004;125C:66-70. doi: 10.1002/ajmg.c.30005. PMID: 14755435.
Corrigan O. Empty ethics: the problem with informed consent. Sociol Health Illn. 2003 Nov;25(7):768-92. doi: 10.1046/j.1467-9566.2003.00369.x. PMID: 19780205.
McGuire AL, Beskow LM. Informed consent in genomics and genetic research. Annu Rev Genomics Hum Genet. 2010;11:361-381. doi:10.1146/annurev-genom-082509-141711
Rodriguez E., Valdebenito C., Misseroni A., Fernandez L, Outomuro D., Schiattino I., Ferrer M., Lolas F. Social, ethical and legal attitudes towards genomic research in four Latin American countries. Electronic Journal of Biotechnology 2005; 8(3). Available from: http://www.ejbiotechnology.info/content/vol8/issue3/full/9/index.html
Claw KG, Anderson MZ, Begay RL, Tsosie KS, Fox K. Summer for Indigenous Communities Genomics (SING) Consortium, and Garrison NA. 7/27/2018. A framework for enhancing ethical genomic research with indigenous communities. Nature Communications, 2018; 9, 1, Pp. 2957. DOI: 10.1038/s41467-018-05188-3
Blacksher JE, Lund JR, Spicer PG. An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation. PLoS One. 2020 Mar 16;15(3):e0229540. doi: 10.1371/journal.pone.0229540. PMID: 32176704; PMCID: PMC7075569.
Soofi H, van Leeuwen E. Within and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boards. J Community Genet. 2016 Oct;7(4):261-270. doi: 10.1007/s12687-016-0274-4. Epub 2016 Aug 5. PMID: 27492247; PMCID: PMC5138161.
Moran C, Thornburg CD, Barfield RC. Ethical considerations for pharmacogenomic testing in pediatric clinical care and research. Pharmacogenomics. 2011;12(6):889-895. doi:10.2217/pgs.10.216
Brothers KB. Ethical issues in pediatric pharmacogenomics. J Pediatr Pharmacol Ther. 2013;18(3):192-198. doi: 10.5863/1551-6776-18.3.192.
Haga SB. Pharmacogenomic Testing In Pediatrics: Navigating The Ethical, Social, And Legal Challenges. Pharmgenomics Pers Med. 2019;12:273-285. Published 2019 Oct 14. doi:10.2147/PGPM.S179172.
Longo C, Rahimzadeh V, Bartlett G. Communication of Pharmacogenomic test results and treatment plans in pediatric oncology: deliberative stakeholder consultations with parents. BMC Palliat Care. 2021 Jan 12;20(1):15. doi: 10.1186/s12904-021-00709-2. PMID: 33435936; PMCID: PMC7805194.
Avard D, Silverstein T, Sillon G, Joly Y. Researchers’ Perceptions of the Ethical Implications of Pharmacogenomics Research with Children. Public Health Genomics 2009;12:191-201. doi: 10.1159/000189633
Borry P, Howard HC, Senecal K, Avard D. Direct-to-consumer genome scanning services. Also for children? Nat. Rev. Genet. 2009; 10(1):8. PubMed: 19030022. DOI: 10.1038/nrg2501
Avard D, Silverstein T, Sillon G, Joly Y. Researchers’ Perceptions of the Ethical Implications of Pharmacogenomics Research with Children. Public Health Genomics 2009;12:191-201. doi: 10.1159/000189633
Rodriguez, E. Ethical Issues of Consent for Genetic Research in Latin American Bio-banks. J Clinic Res Bioeth 2015; 6: 228. DOI: 10.4172/2155-9627.1000228.
Valle-Mansilla JI, Sáenz-de-Tejada-López M y Ruiz-Canela M. Deficiencias en las hojas de información de estudios genómicos. Cuadernos de Bioética. 2010;XXI(1):95-108.. ISSN: 1132-1989. Disponible en: https://www.redalyc.org/articulo.oa?id=87513725007
Rose D, Russo J, Wykes T. Taking part in a pharmacogenetic clinical trial: assessment of trial participants understanding of information disclosed during the informed consent process. BMC Med Ethics 2013 Sep 11;14:34. doi: 10.1186/1472-6939-14-34. PMID: 24025622; PMCID: PMC3847084.
Lee G, Varughese LA, Conway L, Stojinski C, Ashokkumar S, Monono K, Matthai W, Kolansky DM, Giri J, Tuteja S. Attitudes toward pharmacogenetics in patients undergoing CYP2C19 testing following percutaneous coronary intervention. Per Med. 2022 Mar;19(2):93-101. doi: 10.2217/pme-2021-0064. Epub 2022 Jan 5. PMID: 34984913; PMCID: PMC8885847.
Kurnat-Thoma E. Educational and Ethical Considerations for Genetic Test Implementation Within Health Care Systems. Netw Syst Med. 2020;3(1):58-66. Published 2020 May 26. doi:10.1089/nsm.2019.0010.
Master Z, Campo-Engelstein L, Caulfield T. Scientists' perspectives on consent in the context of biobanking research. Eur J Hum Genet. 2015;23(5):569-574. doi:10.1038/ejhg.2014.143..
Sheehan M. Can Broad Consent be Informed Consent?. Public Health Ethics. 2011;4(3):226-235. doi:10.1093/phe/phr020.
Frederieke H. van der Baan, Rose D. C. Bernabe, Annelien L. Bredenoord, Jochem G. Gregoor, Gerben Meynen, Mirjam J. Knol, Ghislaine J. M. W. van Thiel, Consent in psychiatric biobanks for pharmacogenetic research, International Journal of Neuropsychopharmacology, Volume 16, Issue 3, April 2013, Pages 677–682, https://doi.org/10.1017/S146114571200048X
Barry MJ, Edgman-Levitan S. Shared decision making--pinnacle of patient-centered care. N Engl J Med. 2012 Mar 1;366(9):780-1. doi: 10.1056/NEJMp1109283. PMID: 22375967.
Badzek L, Henaghan M, Turner M, Monsen R. Ethical, legal, and social issues in the translation of genomics into health care. J Nurs Scholarsh. 2013 Mar;45(1):15-24. doi: 10.1111/jnu.12000. Epub 2013 Jan 31. PMID: 23369261.
Callier, Shawneequa L. Ethical, Legal, and Social Implications of Personalized Genomic Medicine Research: Current Literature and Suggestions for the Future. Bioethics , vol. 30.9, 2016, pp. 698-705. doi:10.1111/bioe.12285
Turner SM, Cooley-Quille MR. Socioecological and sociocultural variables in psychopharmacological research: methodological considerations. Psychopharmacol Bull. 1996;32(2):183-92. PMID: 8783887.
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 Feb;32(2):198-201. doi: 10.1016/j.urolonc.2013.09.016. PMID: 24445287; PMCID: PMC3970576.
Muflih S, Al-Husein BA, Karasneh R, Alzoubi KH. Physicians' Attitudes and Ethical Obligations to Pharmacogenetic Testing. J Multidiscip Healthc. 2020;13:249-258. Published 2020 Mar 10. doi:10.2147/JMDH.S245369
Dion-Labrie M, Fortin MC, Hébert MJ, Doucet H. Reflexiones éticas sobre la medicina personalizada: ¿la alianza entre la ciencia y la medicina, realizada por fin? Revista Colombiana de Bioética, vol. 3, núm. 2, diciembre, 2008, pp. 57-82
Robertson JA. Consent and privacy in pharmacogenetic testing. Nat Genet. 2001 Jul;28(3):207-9. doi: 10.1038/90032. PMID: 11431685.
Vaszar, L., Rosen, G. and Raffin, T. Pharmacogenomics and the challenge to privacy. Pharmacogenomics J 2002; 2, 144–147 . https://doi.org/10.1038/sj.tpj.6500110
Knoppers BM. Consent to 'personal' genomics and privacy. Direct-to-consumer genetic tests and population genome research challenge traditional notions of privacy and consent. EMBO Rep. 2010 Jun;11(6):416-9. doi: 10.1038/embor.2010.69. Epub 2010 May 7. PMID: 20448662; PMCID: PMC2892328.
Breckenridge A, Lindpaintner K, Lipton P, McLeod H, Rothstein M, Wallace H. Pharmacogenetics: ethical problems and solutions. Nat Rev Genet. 2004 Sep;5(9):676-80. doi: 10.1038/nrg1431. PMID: 15372090.
Rodriguez E., Valdebenito C., Misseroni A., Fernandez L, Outomuro D., Schiattino I., Ferrer M., Lolas F. Social, ethical and legal attitudes towards genomic research in four Latin American countries.. Electronic Journal of Biotechnology 2005; 8(3). Available from: http://www.ejbiotechnology.info/content/vol8/issue3/full/9/index.html.
Lea R, Chambers G . Monoamine oxidase, addiction, and the "warrior" gene hypothesis. N. Z. Med. J. 2007; 120 (1250): U2441. PMID: 17339897.
Jimenez-Sanchez G. Developing a platform for genomic medicine in Mexico. Science 2003; 300 (5617): 295-296. doi: 10.1126/science.1084059. PMID: 12690190
Lindpaintner K. Pharmacogenetics and the future of medical practice. Br J Clin Pharmacol. 2002;54(2):221-230. doi:10.1046/j.1365-2125.2002.01630.x
Sadée W. Pharmacogenomics. West J Med. 1999 Nov;171(5-6):328-32. doi: 10.1093/hmg/ddi261. PMID: 18751198; PMCID: PMC1308751.
Lindpaintner K. Pharmacogenetics and the future of medical practice. J Mol Med (Berl). 2003 Mar;81(3):141-53. doi: 10.1007/s00109-002-0416-5. Epub 2003 Mar 25. PMID: 12682723.
Nuffield Council on Bioethics. Pharmacogenetics ethical issues, 2003. www.nuffieldbioethics.org/pharmacogenetics
Prainsack B. Personalized medicine. Empowered patients in the 21st
century? New York: New York University Press; 2017.
Lindpaintner K. Pharmacogenetics and the future of medical practice. Br J Clin Pharmacol. 2002;54(2):221-230. doi:10.1046/j.1365-2125.2002.01630.x.
Rodríguez E. Ética en innovación tecnológica y farmacogenómica. Acta Bioethica 2009 Monografía; 2: 265-282. https://scielo.conicyt.cl/pdf/abioeth/v26n2/1726-569X-abioeth-46-137.pdf
Ndebele P, Musesengwa R. Will developing countries benefit from their participation in genetics research? Malawi Med J. 2008 Jun;20(2):67-9. doi: 10.4314/mmj.v20i2.10960. PMID: 19537436; PMCID: PMC3345671.
Juengst ET, Settersten RA Jr, Fishman JR, McGowan ML. After the revolution? Ethical and social challenges in 'personalized genomic medicine'. Per Med. 2012;9(4):429-439. doi:10.2217/pme.12.37
McLeod HL, Evans WE. Pharmacogenomics: unlocking the human genome for better drug therapy. Annu Rev Pharmacol Toxicol. 2001;41:101-21. doi: 10.1146/annurev.pharmtox.41.1.101. PMID: 11264452.
Breckenridge A, Lindpaintner K, Lipton P, McLeod H, Rothstein M, Wallace H. Pharmacogenetics: ethical problems and solutions. Nat Rev Genet 2004;5:676-80.
Corrigan OP. Pharmacogenetics, ethical issues: a review of the Nuffield Council on Bioethics Report. J Med Ethics 2005;31:144-8. doi: 10.1136/jme.2004.007229. PMID: 15738433; PMCID: PMC1734105.
Nuffield Council on Bioethics. Pharmacogenetics ethical issues, 2003. www.nuffieldbioethics.org/pharmacogenetics.
Lagay, F. Pharmacogenomics: revolution in a bottle? American Medical Association 2003http://www.ama-assn.org/ama/pub/category/7459.html.Google Scholar
Wolf C.R., Smith G. and Smith R.L. Pharmacogenetics. BMJ 2000; Vol. 320:987-990.
Higashi MK, Veenstra DL. Managed care in the genomic era: assessing the cost effectiveness of genetic test. Am J Manag Care 2003; Jul;9(7):493-500. PMID: 12866628.
Zubiaur P, Prósper-Cuesta DN, Novalbos J, Mejía-Abril G, Navares-Gómez M, Villapalos-García G, Soria-Chacartegui P, Abad-Santos F. Patients' Perceptions of Pharmacogenetic Testing and Access to Their Results: State of the Art in Spain and Systematic Review. J Pers Med. 2022 Feb 12;12(2):270. doi: 10.3390/jpm12020270. PMID: 35207758; PMCID: PMC8879541.
Zubiaur P, Mejía-Abril G, Navares-Gómez M, Villapalos-García G, Soria-Chacartegui P, Saiz-Rodríguez M, Ochoa D, Abad-Santos F. PriME-PGx: La Princesa University Hospital Multidisciplinary Initiative for the Implementation of Pharmacogenetics. J Clin Med. 2021 Aug 24;10(17):3772. doi: 10.3390/jcm10173772. PMID: 34501219; PMCID: PMC8432257.
Ariefdjohan M, Lee YM, Stutzman DL, LeNoue S, Wamboldt MZ. The Utility of Pharmacogenetic-Guided Psychotropic Medication Selection for Pediatric Patients: A Retrospective Study. Pediatr Rep. 2021;13(3):421-433. Published 2021 Jul 28. doi:10.3390/pediatric13030049
Brothers KB, Rothstein MA. Ethical, legal and social implications of incorporating personalized medicine into healthcare. Per Med. 2015;12(1):43-51. doi:10.2217/pme.14.65.
Peterson-Iyer K. Pharmacogenomics, ethics, and public policy. Kennedy Inst Ethics J. 2008 Mar;18(1):35-56. doi: 10.1353/ken.0.0004. PMID: 18561577.
Gershon ES, Alliey-Rodriguez N, Grennan K. Ethical and public policy challenges for pharmacogenomics. Dialogues Clin Neurosci. 2014;16(4):567-574. doi:10.31887/DCNS.2014.16.4/egershon
Wertz DC. Ethical, legal and social issues in pharmacogenomics. Pharmacogenomics J 2003;3:194-6. DOI: 10.1038/sj.tpj.6500188
Bustamante, C., De La Vega, F. and Burchard, E. Genomics for the world. Nature 2011; 475, 163–165. https://doi.org/10.1038/475163a.
Hansson MG. Taking the patients side: the ethics of pharmacogenetics. Per Med 2010; Jan;7(1):75-85. doi: 10.2217/pme.09.47. PMID: 29783366.
Miskimen T, Marin H, Escobar J. Psychopharmacological research ethics: special issues
affecting US ethnic minorities. Psychopharmacology (Berlin) 2003; Dec;171(1):98-104. doi: 10.1007/s00213-003-1630-8. Epub 2003 Nov 18. PMID: 14624328.
de Vries J, Bull SJ, Doumbo O, et al. Ethical issues in human genomics research in developing countries. BMC Med Ethics. 2011;12:5. Published 2011 Mar 18. doi:10.1186/1472-6939-12-5de.
Petersen KE, Prows CA, Martin LJ, Maglo KN. Personalized medicine, availability and group disparity: an inquiry into how physicians perceive and rate the elements and barriers of personalized medicine. Public Health Genomics 2014;17:209-20. doi: 10.1159/000362359. Epub 2014 May 21. PMID: 24852571.
Hunt LM, Kreiner MJ. Pharmacogenetics in primary care: the promise of personalized medicine and the reality of racial profiling. Cult Med Psychiatry. 2013 Mar;37(1):226-35. doi: 10.1007/s11013-012-9303-x. PMID: 23264029; PMCID: PMC3593998.
Nooruddin M, Scherr C, Friedman P, Subrahmanyam R, Banagan J, Moreno D, Sathyanarayanan M, Nutescu E, Jeyaram T, Harris M, Zhang H, Rodriguez A, Shaazuddin M, Perera M, Tuck M; ACCOuNT Investigators. Why African Americans say "No": A Study of Pharmacogenomic Research Participation. Ethn Dis. 2020 Apr 2;30(Suppl 1):159-166. doi: 10.18865/ed.30.S1.159. PMID: 32269457; PMCID: PMC7138442. DOI: .
Tata EA, Ambele MS, Pepper M. Barriers to Implementing Clinical Pharmacogenetics Testing in Sub-Saharan Africa. A Critical Review. Pharmaceutics. 2020 Aug 26;12(9):809. doi: 10.3390/pharmaceutics12090809. PMID: 32858798; PMCID: PMC7560181. DOI: 10.3390/pharmaceutics12090809.
Boyer BB, Dillard D, Woodahl EL, Whitener R, Thummel KE, Burke W. Ethical issues in developing pharmacogenetic research partnerships with American Indigenous communities. Clin Pharmacol Ther. 2011 Mar;89(3):343-5. doi: 10.1038/clpt.2010.303. PMID: 21326261; PMCID: PMC3090734.
Holm S. Pharmacogenetics, race and global injustice. Dev World Bioeth. 2008 Aug;8(2):82-8. doi: 10.1111/j.1471-8847.2006.00173.x. PMID: 19143085.
Root M. The use of race in medicine as a proxy for genetic differences. Philos Sci. 2003 Dec;70(5):1173-83. doi: 10.1086/377398. PMID: 17340785.
Petersen K, Prows C, Martin L and Maglo K. Personalized medicine, availability, and group disparity: An inquiry into how physicians perceive and rate the elements and barriers of personalized medicine. Public Health Genomics 2014; 17(4): 209–220. doi: 10.1159/000362359. Epub 2014 May 21. PMID: 24852571.
Prainsack B (2015) Is personalized medicine different? (Reinscription: the sequel) A response to Troy Duster. The British Journal of Sociology 66(1): 28–35. https://doi.org/10.1111/1468-4446.12117
Williams DR. Race/ethnicity and socioeconomic status: measurement and methodological issues. Int J Health Serv. 1996; 26:483–505. doi: 10.2190/U9QT-7B7Y-HQ15-JT14.
LaVeist TA. Disentangling race and socioeconomic status: a key to understanding health inequalities. J Urban Health 2005; 82:iii26–iii34. doi: 10.1093/jurban/jti061.
Benjamin R. A lab of their own: Genomic sovereignty as postcolonial science policy. Policy and Society 2009; 28(4): 341–355. https://doi.org/10.1016/j.polsoc.2009.09.007.
Duster T. The molecular reinscription of race: Unanticipated issues in biotechnology and forensic science. Patterns of Prejudice 2006; 40(4–5): 427–441. https://doi.org/10.1080/00313220601020148.
Suarez-Kurtz G, Aklillu E, Saito Y, Somogyi AA. Conference report: pharmacogenomics in special populations at WCP2018. Br J Clin Pharmacol. 2019 Mar;85(3):467-475. doi: 10.1111/bcp.13828. Epub 2019 Jan 24. PMID: 30537134; PMCID: PMC6379283. DOI: 10.1111/bcp.13828
Ortega VE, Meyers DA. Pharmacogenetics: implications of race and ethnicity on defining genetic profiles for personalized medicine. J Allergy Clin Immunol. 2014;133(1):16-26. doi:10.1016/j.jaci.2013.10.040
Nuffield Council on Bioethics. Pharmacogenetics ethical issues, 2003. www.nuffieldbioethics.org/pharmacogenetics.
Magavern EF, Gurdasani D, Ng FL, Lee SS. Health equality, race and pharmacogenomics. Br J Clin Pharmacol. 2022 Jan;88(1):27-33. doi: 10.1111/bcp.14983. Epub 2021 Aug 4. PMID: 34251046; PMCID: PMC8752640.
Mensah GA, Jaquish C, Srinivas P, Papanicolaou GJ, Wei GS, Redmond N, Roberts MC, Nelson C, Aviles-Santa L, Puggal M, Green Parker MC, Minear MA, Barfield W, Fenton KN, Boyce CA, Engelgau MM, Khoury MJ. Emerging Concepts in Precision Medicine and Cardiovascular Diseases in Racial and Ethnic Minority Populations. Circ Res. 2019 Jun 21;125(1):7-13. doi: 10.1161/CIRCRESAHA.119.314970. Epub 2019 Jun 20. PMID: 31219738; PMCID: PMC6590684.
Johnson JA. Ethnic differences in cardiovascular drug response: potential contribution of pharmacogenetics. Circulation. 2008; 118: 1383-93. doi: 10.1161/CIRCULATIONAHA.107.704023. PMID: 18809808; PMCID: PMC2730023.
Sun S. Between personalized and racialized precision medicine: A relative resources perspective. International Sociology 2020; 35(1), 90–110. doi:10.1177/0268580919885292
Fullerton SM, Wolf WA, Brothers KB, Clayton EW, Crawford DC, Denny JC, Greenland P, Koenig BA, Leppig KA, Lindor NM, McCarty CA, McGuire AL, McPeek Hinz ER, Mirel DB, Ramos EM, Ritchie MD, Smith ME, Waudby CJ, Burke W, Jarvik GP. Return of individual research results from genome-wide association studies: experience of the Electronic Medical Records and Genomics (eMERGE) Network. Genet Med. 2012 Apr;14(4):424-31. doi: 10.1038/gim.2012.15. Epub 2012 Feb 23. PMID: 22361898; PMCID: PMC3723451.
Bredenoord AL, Kroes HY, Cuppen E, Parker M, van Delden JJ. Disclosure of individual genetic data to research participants: the debate reconsidered. Trends Genet. 2011 Feb;27(2):41-7. doi: 10.1016/j.tig.2010.11.004. Epub 2010 Dec 27. PMID: 21190750.
Dressler LG. Return of research results from pharmacogenomic versus disease susceptibility studies: what's drugs got to do with it? Pharmacogenomics. 2012 Jun;13(8):935-49. doi: 10.2217/pgs.12.59. PMID: 22676197; PMCID: PMC4539533.
Dressler LG. Return of research results from pharmacogenomic versus disease susceptibility studies: what's drugs got to do with it? Pharmacogenomics. 2012 Jun;13(8):935-49. doi: 10.2217/pgs.12.59. PMID: 22676197; PMCID: PMC4539533.
Haga SB, Kawamoto K, Agans R, Ginsburg GS. Consideration of patient preferences and challenges in storage and access of pharmacogenetic test results. Genet Med. 2011; 13(10):887-890. doi:10.1097/GIM.0b013e31822077a5.
Kennedy MJ. Personalized medicines - are pharmacists ready for the challenge?. Integr Pharm Res Pract. 2018;7:113-123. Published 2018 Sep 25. doi:10.2147/IPRP.S133083.
McMahon T, Tucci J. The perceptions of pharmacists in Victoria, Australia on pharmacogenetics and its implications. Pharm Pract (Granada). 2011;9(3):141-147.
Sun S. Between personalized and racialized precision medicine: A relative resources perspective. International Sociology 2020; 35(1), 90–110. doi:10.1177/0268580919885292
Farley M. Feminism and Universal Morality. In Prospects for a Common Morality, ed. Gene Outka and John P. Reeder, Jr.. Princeton, NJ: Princeton University Press 1993, pp. 170-90.
Tiffin N. Tiered informed consent: respecting autonomy, agency and individuality in Africa. BMJ Global Health 2018;3:e001249. http://dx.doi.org/10.1136/bmjgh-2018-001249
Ng,P.C.,Murray,S.S.,Levy,S.,and Venter,J.C. An agenda for personalized medicine. Nature 2009; 461, 724–726 (2009). https://doi.org/10.1038/461724a.
Chua EW, Kennedy MA. Current State and Future Prospects of Direct-to-Consumer Pharmacogenetics. Front Pharmacol. 2012; 3:152. doi:10.3389/fphar.2012.00152.
Chua EW, Kennedy MA. Current State and Future Prospects of Direct-to-Consumer Pharmacogenetics. Front Pharmacol. 2012;3:152. doi:10.3389/fphar.2012.00152.
McLean MR. A Framework for Thinking Ethically About Human Biotechnology. In Medical Sociology in Africa 2006. DOI: 10.1007/978-3-319-03986-2_11. Available at http://www.scu.edu/ethics/publications/submitted/mclean/biotechframework.html.
Boyer BB, Dillard D, Woodahl EL, Whitener R, Thummel KE, Burke W. Ethical issues in developing pharmacogenetic research partnerships with American Indigenous communities. Clin Pharmacol Ther. 2011 Mar;89(3):343-5. doi: 10.1038/clpt.2010.303. PMID: 21326261; PMCID: PMC3090734.
El Shamieh S, Zgheib NK. Pharmacogenetics in developing countries and low resource environments. Human Genetics. 2021 Feb. DOI: 10.1007/s00439-021-02260-9. PMID: 33564904.
McKinnon RA, Ward MB, Sorich MJ. A critical analysis of barriers to the clinical implementation of pharmacogenomics. Ther Clin Risk Manag. 2007;3(5):751-759.
Dion-Labrie, Marianne, Fortin, M. C.; Hébert, M. J.; Doucet, H. Reflexiones éticas sobre la medicina personalizada Reflexiones éticas sobre la medicina personalizada: ¿la alianza entre la ciencia y la medicina, realizada por fin?. Revista Colombiana de Bioética, vol. 3, núm. 2, diciembre, 2008, pp. 57-82.
Mainet González Damián. Aspectos bioéticos de la farmacogenómica en la fase clínica de desarrollo de medicamentos. Rev Cubana Invest Bioméd [Internet]. 2016 Mar; 35( 1 ). Disponible en: http://scielo.sld.cu/scielo.php?script=sci_arttext&pid=S0864-03002016000100006&lng=es.