 | The 131st Annual Meeting (November 15-19, 2003) of APHA |
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| The 131st Annual Meeting (November 15-19, 2003) of APHA |
Nenette Mercado Jessup, MPH, Department of Public Health, Indiana University, 1050 Wishard Blvd. RG 4167, Indianapolis, IN 46202, 317-884-5232, njessup@orthoindy.com and Kimberly Quaid, PhD, Center for Bioethics, Indiana University, 1481 West 10th Street Suite CB-112, Indianapolis, IN 46202.
The completion of the Human Genome Project (HGP) has greatly increased our knowledge about our health, while simultaneously creating technological innovations that have outpaced ethical, legal and social policies. One example of the HGP technological advances has enabled scientists to discover clinically relevant information about living and deceased subjects in their research. Burdened by this knowledge, researchers may feel compelled to inform the subjects and their family members of test findings. At the same time, family members are demanding that clinically relevant information be revealed to them. This situation presents a dilemma as it illustrates the investigator's conflicting duties of protecting the patient's confidentiality and privacy and the investigator's "duty to warn" versus respecting the individual's autonomy and the individual's "right to know." Yet, to date, investigators lack specific guidelines for disclosure of genetic information in a research setting. To address this issue, this presentation provides an overview of current policies and guidelines of disclosure in 1. a clinical setting, 2. prospective genetic research and deceased sample guidelines, 3. Huntington's and Alzheimer's disease guidelines, 4. case law of "duty to warn", 5.the "right to know" vs. the "right not to know," and 6. the current laws. Finally, this presentation briefly summarizes the results of a pilot survey conducted at an Alzheimer Disease Center in a large midwestern city.
Learning Objectives:
Keywords: Ethics, Genetics
Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.