What does it mean to unlock the secrets of your DNA? Ethical, social and clinical Challenges of personalized genomics. Holly K. Tabor, Ph.D. Treuman Katz Center for Pediatric Bioethics Seattle Children’s Hospital Division of Bioethics, Department of Pediatrics University of Washington.
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Holly K. Tabor, Ph.D.
Treuman Katz Center for Pediatric Bioethics
Seattle Children’s Hospital
Division of Bioethics, Department of Pediatrics
University of Washington
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The example of Type 2 Diabetes.
“What does seem absolutely clear is that testing for Huntington’s is never innocuous, it is always a profoundly life-changing event, not only to the individual going through the testing, but to his or her family, and often to wider circles as well. Gene testing, in the case of Huntington’s disease, can never be taken lightly, it can never be routine.”
-Alice Wexler, “Mapping Fate”
“Whole genome information, when combined with clinical and other phenotypic data, offers the potential for increased understanding of basic biological processes affecting human health, improvement in the prediction of disease and patient care, and ultimately the realization of the promise of personalized medicine.”
-NIH Statement on GWAS
But how well can we predict disease and improve patient care?
More Distant Future:
Who will not have this information?
Scott et al, Science, June 2007
It is difficult to translate even this kind of well-replicated data into a genetic profile with clinical validity.
What if you could “unlock the secrets of your DNA?”
What does that mean?
The example of ApoE4 testing.
“Even though the development of Alzheimer’s disease was seen as uncontrollable by most individuals, for some the act of acquiring genetic information was seen as a way to confront their risk and therefore exert control.”
“Even without prevention or treatment options, genetic testing may be a useful coping strategy for some at risk individuals.”
“The ApoE genotype is more memorable than a numeric risk estimate for Alzheimer’s disease. Health professionals testing for complex disorders like Alzheimer’s disease must find an appropriate balance between communicating risk in an understandable format and addressing the probabilistic nature of the information.”
“Personalized medicine has always been a component of good medical practice. Genetic tests may provide new tools, but they do not change the fundamental goals of clinicians to adapt available medical tests and technologies to the individual circumstances of their patients. . . When genetic testing is used, the personalized nature of the care will extend well beyond the patient’s base pair sequence.”
-Wylie Burke and Bruce Pstay
JAMA, October 10, 2007
“My guest Craig Venter has successfully decoded his own genome, which has been hailed as a breakthrough in the field of medicine . . . for Craig Venter.”
The Colbert Report,
October 30, 2007
Funding from NHGRI
1 K99 HG004316-01
5 P50 HG003389-04Acknowledgements