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Personalized Medicine: A Cautionary Tale or Instructional Epic

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Rare Diseases in the Age of Health 2.0

Part of the book series: Communications in Medical and Care Compunetics ((CMCC,volume 4))

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Abstract

With the twenty-first century just beginning, the practice of medicine would forever change as the successful sequencing of the human genome was completed. This blockbuster discovery reset the landscape of medicine and the provision of health care. Personalized medicine once based on best practices and characterized by a constructive and caring doctor/patient relationship now includes a vast frontier of treatment options based on an individual’s genetic blueprint. Patient-centered outcomes research and renewed interest in patient empowerment are also components to personalized medicine where genetics leads the way. Personalized medicine will always remain a dynamic practice as science moves forward. For it to succeed, personalized medicine must be crafted in the best interests of the patient within the context of our current health policy.

It is more important to know what sort of person has a disease than to know what sort of disease a person has

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Notes

  1. 1.

    National Library of Medicine. Genetics home reference: human genome sequencing project. Lister Hill National Center for Biomedical Communications, U.S. Library of Medicine, NIH, DHHS, US. gov, http://ghr.nlm.nih.g, 26 Nov 2012.

  2. 2.

    National Library of Medicine. Genetics Home Reference: What is DNA? Lister Hill National Center for Biomedical Communications, U.S. Library of Medicine, NIH, DHHS, US.govhttp://ghr.nlm.nih.g, 26 Nov 2012.

  3. 3.

    Duke Medicine; Duke University Health Systems; Duke University Center for Personalized Medicine, copyright 2004-2010; www/dukepersonalizedmedicine.org. Accessed 2012.

  4. 4.

    National Organization for Rare Disorders, copyright 2013, www.rarediseases.org.

  5. 5.

    President’s Council on Advisors on Science and Technology Report to the President on Propelling Innovation in Drug Discovery, Development, and Evaluation.

  6. 6.

    Research! America. Genomics Research: Transforming Health and Powering the Bioeconomy.

  7. 7.

    Debenham P. Biomarkers and Gene Tests—A Personal Insight, p. 2 Paul Debenham. http://webarchive.nationalarchives.gov.uk/20061009085702/hgc.gov.uk/client/content.asp?contentid=677, August 5, 2007.

  8. 8.

    Scott R. Bringing Metcalfe’s Law to Genomic Medicine. Harvard Personalized Medicine Conference. Harvard Personalized Medicine Conference, Showcases Progress in the Field. Randy Scott: Bringing Metcalfe’s Law to Genomic Medicine.

  9. 9.

    Federal Coordinating Council on Comparative Effectiveness Research, www.hhs.gov/recovery/overview/index.html.

  10. 10.

    Khoury M. et al. Comparative effectiveness Research and Genomic Medicine: An Evolving Partnership.

  11. 11.

    Gorman M. Building Patient Preference into Research Agendas. The National Working Group of Evidence−Based Medicine. Advancing the Evidence of Experience: Practical Issues for Patient/Consumer Inclusion.

  12. 12.

    Hoffman E. Anticipatory and Pre-emptive Medicine-A Strategic Initiative DRAFT Children’s National Medical Center.

  13. 13.

    Committee on Accelerating Rare Diseases Research and Orphan Product Development, Institute of Medicine. Development of New Therapeutic Drugs and Biologics for Rare Diseases. Washington, DC: The National Academies Press 2011, p. 47.

  14. 14.

    FDA, DHHS, PART 316 ORPHAN DRUGS-Table of Contents, Subpart C Designation of an Orphan Drug sec. 316.2.

  15. 15.

    See footnote 13.

  16. 16.

    National Health Council. Medicare Advisory: NCATS Initiative and MODDERN Cures Act: Complementary Programs to Advance Discovery of New Treatments and Cures, www.puttingpatientsfirst.net/moddern/.

  17. 17.

    See footnote 8.

  18. 18.

    National Center for Advancing Translational Sciences, NIH, DHHS. www.ncatsnih.gov.

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    NIH, DHHS. NIH Launches Collaborative Program with Industry and Researchers to Spur Therapeutic Development. NIH NEWS. May 3, 2012.

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    See footnote 17.

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Authors and Affiliations

  1. 9705 Carmel Court, Bethesda, MD, 20817, USA

    Dorothy Weinstein

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  1. Dorothy Weinstein
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Correspondence to Dorothy Weinstein .

Editor information

Editors and Affiliations

  1. Health Design and Technology Institute, Coventry University, Coventry, United Kingdom

    Rajeev K. Bali

  2. International Council on Medical & Care Compunetics (ICMCC), Utrecht, The Netherlands

    Lodewijk Bos

  3. Johns Hopkins Urban Health Institute, Baltimore, Maryland, USA

    Michael Christopher Gibbons

  4. iBellieve Foundation, Toronto, Canada

    Simon Ibell

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Weinstein, D. (2014). Personalized Medicine: A Cautionary Tale or Instructional Epic. In: Bali, R., Bos, L., Gibbons, M., Ibell, S. (eds) Rare Diseases in the Age of Health 2.0. Communications in Medical and Care Compunetics, vol 4. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-38643-5_22

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  • DOI: https://doi.org/10.1007/978-3-642-38643-5_22

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  • Publisher Name: Springer, Berlin, Heidelberg

  • Print ISBN: 978-3-642-38642-8

  • Online ISBN: 978-3-642-38643-5

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