Medical Ethics

Evening Ethics Discussion Group


2009

Vanderbilt's innovative tissue banking effort, including ethical, legal, and regulatory aspects 

The 2009 David Green Memorial Lecturer is Ellen Wright Clayton, MD, JD, Rosalind E Franklin Professor of Genetics and Health Policy , Vanderbilt University.  Dr. Claytonhas been actively involved in a variety of national and international efforts relevant to genetic research and biobanking.This will be an informal discussion of Vanderbilt’s innovative tissue banking effort, including ethical, legal and regulatory aspects.  


Recommended article: DM Roden1–3, JM Pulley4, MA Basford1,4, GR Bernard2,4, EW Clayton5,6, JR Balser3,4 and DR Masys7, "Development of a Large-Scale De-Identified DNA Biobank to Enable Personalized Medicine,"Clinical pharmacology & Therapeutics, advance online publication 21 May 2008. doi:10.1038/clpt.2008.89

Direct to Consumer Genetic Testing: Has Personalized Medicine Arrived?

Direct to consumer genetic testing is now available through several commercial companies including 23 and Me and Navigenics. 23 and Me offers testing for 116 diseases and traits.  Customers also can explore their “ancestral path” with results from the $399 at home kit.  Navigenics offers a $999 kit targeting 28 diseases.  They state, “We use the latest science and technology to give you a view into your DNA, revealing your genetic predisposition for important health conditions and empowering you with knowledge to help you take control of your health future.”

Although these companies promise to bring the benefits of personalized medicine to the public, direct to consumer genetic testing is controversial for some physicians, ethicists and public policy professionals.  Questions raised include: What is the validity of the information being provided?  What do we know about the risks and benefits of this form of testing?  Do customers obtain adequate counseling to make informed decisions about pursuing testing and sufficient support in the interpretation of their results?

In collaboration with the Clinical Genetics Institute (CGI) at Intermountain Health, the Division of Medical Ethics and Humanities is sponsoring an informal discussion of this emerging technology.  Grant Wood, an IT strategist with CGI, recently obtained his genetic profile through 23 and Me.  Grant will relay his experience with testing and share his results with the participants in our discussion.

For those who wish to prepare beforehand, Grant Wood’s blog can be found at http://exploringmygenes.blogspot.com/. Two short articles that provide background for this discussion are: “Direct-to-consumer genetic tests: beyond medical regulation?” by David Magnus, Mildred K. Cho and Robert Cook-Deegan, Genome Medicine 2009, 1:17, and “Direct-to-consumer genetic tests: flawed and unethical,” The Lancet Oncology, December 2008, Vol.9.

Protecting Utah Seniors--a clear need to update Utah’s Guardianship Laws—but how?

The appointment of a guardian or a conservator removes from a person a large part of what it means to be
an adult:  the ability to make decisions for oneself.  We terminate this fundamental and basic right with all the
procedural rigor of processing a traffic ticket….The Deseret News recently reported that when it „went to
court to watch guardianship  proceedings, it was startling how quickly someone could be stripped of all      
decision-making rights.  Once the paperwork is in order, „hearings‟ average seconds, not minutes.”
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This paragraph is an excerpt from a letter introducing a report on guardianship in Utah.  Our Evening Ethics
discussion will address the ethical issues that are at the heart of guardianship:  the tension between individual
autonomy and  beneficence, which urges protection of individuals who are unable to protect or care for     
themselves.  The central, focusing question for this discussion will be:  At what point is an adult’s decision making capacity so impaired that the state should take away his/her fundamental right to make decisions about residence, medical care, social interaction, how assets will be used, marriage, parenting, voting, etc., (based in the principal of autonomy), and give that right to a court-appointed guardian or to the state?

Our facilitators for this discussion will include Maureen Henry, JD, Executive Director of the Utah           
Commission on Aging, and Norman L. Foster, MD, Professor of Neurology, Director of the Center for        
Alzheimer’s Care, Imaging and Research, and Senior Investigator at The University of Utah Brain Institute.  
Two readings that can be found on the Division of Medical Ethics and Humanities website will provide     
background for this discussion : “Decision-Making Capacity: The Core of Self-Neglect,” by XinQi Dong, MD
and Martin Gorbien, MD, FACP, Journal of Elder Abuse & Neglect, Vol. 17(3) 2005 and  the “Ad hoc      
Committee on Probate Law and Procedure Final Report to the Judicial Council ,” February 23, 2009.


This program is approved for 1-½ hours of CME credit.