Transcript Personal Digital Assistants and Nursing Practice

Shawn Stewart, RN, CCM
July 25, 2008
Emerging Trends in Healthcare Technology
Dr Donna W Bailey
Purpose
The purpose of this presentation is to
give nurses a basic understanding of the
unintended consequences society faces
due to technological advancements in
genetic testing.
The Human Genome Project (HGP)
•An International Effort Completed in 2003
•Reference Sequencing Human Chromosomes
•Rough Drafts – Research Continues
•Entire Collection for Scientific Researchers:
http://www.genome.gov/
Potential Roots of Discrimination
Related to Genetic Testing
 Detection of Predisposition to Diseases
 Predicting Future Illness
 Detection of Gene Variants Associated
With Specific Diseases
 Prediction of Response to Treatment
If Genetic Indicators Are
Present What Does That Mean?
 Predisposition does not mean an individual will
conclusively develop the disorder.
 Many conditions can have highly improved outcomes
with preventative measures and a healthy lifestyle.
 Other diseases such as Huntington’s in not treatable at
this time.
Creating Inequalities
 Inheritable Genetic Modification
 Pre-Implementation Genetic Diagnosis
 Exacerbation of Current Human
Inequalities and Discrimination
 Transhumanists
Ethical, Legal and Social Implications
(ELSI) Program
Commitment to Research Studying ELSI:
•National Human Genome Research
Institute (NHGRI)
•Department of Energy (DOE)
ELSI Focuses
•Use and Interpretation of Genetics
•Clinical Integration of Technologies
•Issues Surrounding Genetic Research
•Public & Professional Education
ELSI Concerns:
Genetic Information Obtained from Testing:
Interpretation
Uses
Dissemination
ELSI Priorities:
•
•
•
•
Informed Consent
Privacy
Discrimination
Employer
Insurance
Determinism
Genetic Information
Nondiscrimination Act (GINA) 2008
 What is GINA?
 When does it take effect:
Health Insurers, May 2009
 Employers, November 2009

What Does GINA Not Include?
 Military Personnel
 Life Insurance
 Disability Insurance
 Long-Term Care Insurance
Documented Cases of Discrimination
 In 1998 a pregnant woman who had one child with
cystic fibrosis was urged to have an amniocentesis
done to assess for this condition in her unborn
child.
 She declined and was issued an ultimatum from
her HMO.
 Due to a massive campaign the HMO was forced to
reverse this threat.
Burlington Northern Santa Fe Railroad
 EEOC Filed Suit for Unlawful Secret Genetic
Testing
 Testing for a Rare Condition That Causes Carpal
Tunnel
 Additionally Testing for Diabetes and Alcoholism
 BNSF Quickly Settled the Lawsuit in 2001
Discrimination Has Led To Fear
 The hundreds of reported cases of discrimination due
to genetic testing results has instilled fear in society.
 Many do not wish to have genetic testing done due to
these types of cases.
 They fear loss of health insurance coverage or even
employment based on the results.
Educational Efforts
 Education & Community Involvement
Branch
 National DNA Day
 Education Modules for Teachers
 Family Demonstration Projects
Battles Yet To Be Addressed
 Research Shows a Connection Between Genes and
Behavior
 Is the Connection a Pre-Disposition or Actual?
 The Courts Must Scrutinize to Avoid Discrimination
 One of Many Ethical Dilemmas the Courts Must
Address
Data Protection
 International Declaration on Human Genetic Data
 Biomonitoring Data Collection
 Identity Theft Protection Act
 Coordinated Environmental Health Network Act
Ongoing Research
•Gene Regulation
•DNA Sequence Organization
•Gene Number, Exact Locations, and Functions
•Chromosomal Structure and Organization
•Protein Interactions and Conservation
•Predicted vs. Experimentally Determined Function
Recommended Actions
 Future Developments
 Strategies for Staying Informed
 Suggested Avenues of Voicing
Concerns
References
Center for Genetics and Society. (n.d.). About a "post-human" future & human
biotechnology. Retrieved July 13, 2008, from Center for Genetics and Society Web site:
http://www.geneticsandsociety.org/article.php?list=type&type=50
Horn, D. (1998, January 19). Genetic discrimination: A primer. Retrieved July 15, 2008, from
Council for Responsible Genetics Web site: http://www.genewatch.org/programs/privacy/BerInterview.html
Human Genome Project Information. (2008, May 14). Genetics in the courtroom. Retrieved
July 13, 2008, from Human Genome Project Information Web site:
http://www.ornl.gov/sci/techresources/Human_Genome/courts/courts.shtml
References
National Human Genome Research Institute. (2008, June 13). Cases of genetic
discrimination. Retrieved July 19, 2008, from National Human Genome Research
Institute Web site: http://www.genome.gov/12513976
National Human Genome Research Institute. (n.d.). ELSI program fact sheet. Retrieved July
13, 2008, from http://www.genome.gov/10002329.
National Human Genome Research Institute. (2008, June 19). Genetic information
nondiscrimination act of 2008. Retrieved July 10, 2008, from National Human Genome
Research Institute Web site: http://www.genome.gov/10002328
Oak Ridge National Laboratory. (n.d.). Genetics legislation. Retrieved July 12, 2008, from
http://www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml#cases