Personalized Medicine: Ethical Aspects

Part of the Methods in Molecular Biology book series (MIMB, volume 1606)


In our time of genome-based personalized medicine, clinical research and clinical medicine are accelerating at a quick pace. Faster and cheaper DNA sequencing and protein profiling, microfluidic devices for capturing blood biomarkers, nanoparticles for precise drug delivery and enhanced imaging, rapid computational analysis of massive data inputs, and other technological wonders coalesce to create a kind of Moore’s Law for medicine. Needs are obvious, knowledge grows, capital becomes available, but these factors are not entirely sufficient to make health more achievable. Personalized medicine also requires social acceptability, not only for accuracy and efficacy but also because medicine is a moral domain. This chapter deals with medical ethics that determine the choices a society makes regarding healthcare; and it has not always been a steady, morally correct course of progress. Indeed, medical ethics has largely derived from socio-scientific calamities in the past. Personalized medicine, with its enhanced capacity to access the individuality of illness, must have a continuously evolving feedback mechanism—the most important element being the physician-patient relationship—which is its ethical footing.

Key words

Physician-patient relationship Eugenics Nuremberg Code Belmont Report Tuskegee syphilis study Jesse Gelsinger Informed consent Clinical trials Institutional review boards Medical ethics 


  1. 1.
    Starzl TE (1992) The puzzle people: memoirs of a transplant surgeon. University of Pittsburgh Press, PittsburghGoogle Scholar
  2. 2.
    Sharrrer T (2003) What’s in grant’s tumor? The History Channel Magazine 1(4):42–49Google Scholar
  3. 3.
    New immunotherapy drug behind Jimmy Carter’s cancer cure (2016) The Guardian. December 6.
  4. 4.
    Harold deMonaco. What the media got wrong about Jimmy Carter’s cancer “Cure” (2015) Health News Review. December 10.
  5. 5.
    Fast, accurate DNA sequencing through graphene nanopore. (2016) Science Daily. January 16.
  6. 6.
    Jeffrey C. (2016) World record Internet data transfer rate almost 50,000 times faster than broadband. February 12. Gizmag.
  7. 7.
    Wachter R (2015) The digital doctor: hope, hype and harm at the dawn of medicine’s computer age. McGraw Hill, New YorkGoogle Scholar
  8. 8.
  9. 9.
    Strauss KA, Puffenberger EG, Morton DH (2012) One community’s effort to control genetic disease. Am J Public Health 102(7):1300–1306. “Small science” is a term Dr. Holmes Morton coined in a November 2012 talk at Elizabethtown College in Pennsylvania. Morton is the founder of the Clinic for Special Children, which is a primary pediatric care facility for the Amish and Old Order Mennonites. It practices personalized molecular medicine in treating over 100 inborn errors of metabolismCrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Morton DH (1994) Through my window—remarks at the 125th year celebration of Children’s Hospital of Boston. Pediatrics 94(6):785–791PubMedGoogle Scholar
  11. 11.
    Fauci AS et al (2008) Harrison’s principles of internal medicine, The practice of medicine, vol 1, 17th edn. McGraw Hill, New York, pp 1–6Google Scholar
  12. 12.
    Pellegrino ED (1986) Percival’s medical ethics: the moral philosophy of an 18th century English gentleman. Arch Intern Med 146(11):2265–2289CrossRefPubMedGoogle Scholar
  13. 13.
    History of AMA Ethics (2016) American Medical Association.
  14. 14.
    Wells H (1847) A history of the discovery of the application of nitrous oxide gas, ether, and other vapors to surgical operations. J. Gaylord Wells, HartfordGoogle Scholar
  15. 15.
    Dowbiggin I (2003) A merciful end: the euthanasia movement in modern America. Oxford University Press, New York, pp 10–13Google Scholar
  16. 16.
    Carlson E (2001) The unfit: a history of a bad idea. Cold Spring Harbor Laboratory Press, Woodbury. Cold Spring Harbor Laboratory’s DNA Learning Center maintains “The Eugenics Image Archives,” with 2,500 pictures and narrative text of the American eugenics movement.
  17. 17.
    Germany (Territory under Allied occupation, 1945-1955: U.S. Zone) (1949–1953) Trials of war criminals before the Nuremberg Military Tribunals under Control Council Law No. 10. Nuremberg, October 1946–April 1949. U.S. Government Printing Office, Washington, DCGoogle Scholar
  18. 18.
    Williams JR (2008) The Declaration of Helsinki and public health. Bull World Health Organ 86:650–652CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Vollmann J, Winau R (1996) Informed consent in human experimentation before the Nuremberg code. BMJ 313:1445–1449CrossRefPubMedPubMedCentralGoogle Scholar
  20. 20.
    Jones JH (1981) Bad blood: the Tuskegee syphilis experiment. Free Press, New YorkGoogle Scholar
  21. 21.
    Heller J (1972) Syphilis patients died untreated. July 25. Washington Star, Washington, DCGoogle Scholar
  22. 22.
    Office of the Secretary (1979) Ethical principles and guidelines for the protection of human subjects of research. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Washington, DC.
  23. 23.
    Atchinson BK, Fox DM (1997) The politics of the health insurance portability and accountability act. Health Aff 16(3):146–150CrossRefGoogle Scholar
  24. 24.
    Summary of the HIPAA Privacy Rule, Public Law 104-191 (1996).
  25. 25.
    Stolberg SG (1999) The biotech death of Jesse Gelsinger. November 28. New York Times, Sunday Magazine, New YorkGoogle Scholar
  26. 26.
    Culver KW (1996) Gene therapy: a primer for physicians, 2nd edn. Mary Ann Liebert, LarchmontGoogle Scholar
  27. 27.
    Gelsinger wrongful death lawsuit names bioethicist Caplan. (2009) Genetics crossroads. October 16. Center for Genetics and Society, Berkeley.
  28. 28.
    Wilson RF. (2009) Estate of Gelsinger v. Trustees of University of Pennsylvania, Ch. 11 in Health law and bioethics. Johnson SH. et al, eds. Washington and Lee Legal Studies Research Paper Series. LexingtonGoogle Scholar

Copyright information

© Springer Science+Business Media LLC 2017

Authors and Affiliations

  1. 1.Retired Surator of Health Sciences - Smithsonian InstitutionWashington, DCUSA

Personalised recommendations